Trauma and the Reproductive Story

It’s morning. The alarm goes off, the coffee pot goes on, you decide what to wear, and ready yourself for the day. Consciously, but most likely out of your conscious awareness, you expect today will be similar to yesterday, and tomorrow will be like today. The day’s events may differ, but most likely the routine will be pretty much the same. There is comfort in that.

But suddenly something changes. When a traumatic event occurs, your world is no longer the same, no longer the safe place you could count on. It can feel as if the rug has been pulled out, everything is flying in the air and has yet to settle into place again. And as I will discuss, one’s internal world, one’s sense of self, also can feel dramatically off kilter.

Trauma and the Reproductive Story

Trauma, as defined for the diagnosis of PTSD in the DSM-5, is “exposure to actual or threatened death, serious injury or sexual violence¹. We often think of it as a one-time horrific event—a car accident, an earthquake, a shooting. But reproductive trauma, specifically infertility and/or pregnancy loss, is cumulative in nature. For most patients, by the time they set up an appointment with a fertility doctor or with a mental health professional, they have already gone through a year of “trying” to conceive, and multiple losses. As one patient put it, every menstrual cycle felt like a “mini-death.” And indeed, the losses that patients experience—of their hoped-for baby, their own adult development as a parent, their hopes and dreams for the future, of what we refer to as their “reproductive story”—significantly affect their psychological well-being².

Another way to define trauma, and one that fits with reproductive patients, is to think about infertility as an event that causes the disintegration, not just of a would-be pregnancy, but of one’s entire inner world. It affects every aspect of one’s life: feelings about the self, questions about one’s purpose, concerns about relationships—with one’s partner, friends, family, the world—and worries about the future—how does and will one fit in, what is one’s legacy, what is the meaning of one’s life? These are clearly not minor concerns. Trauma, in general, can be thought of as an event that overwhelmingly shatters core beliefs and assumptions³. For reproductive patients, the narrative that they once held, often as an unconscious guideline for the creation of their family, is no longer tenable as originally imagined. The core assumptions they held about having a family are demolished.

As a clinician who specializes in reproductive issues, I have heard a wide range of stories from women over the years, some of whom proclaim, “I always knew I wanted to be a mom. Even as a little girl that was what I wanted to be. I even decided to become a teacher so I would have the same schedule as my kids;” some that are more vague, “I just thought I would have kids someday;” to some that were more ambivalent, “I didn’t think I wanted kids and then one day it hit me. I hope it’s not too late.” These stories often begin in childhood, as we ourselves are parented. The stories evolve over time and the subtle changes that are made to the narrative become subtly yet implicitly assimilated. It is when the story abruptly goes off course, when a woman can’t have children how and when she wants to, that the traumatic loss occurs.

As I have listened to my patients’ reproductive stories, I have taken note of their core assumptions about pregnancy. The more I, as a therapist, can understand what it means to them—how it enables them to fit into their cultural milieu, how it can make them feel they are on equal standing as an adult—the more I have been able to appreciate and begin to understand the depth of their losses. “Acknowledging their own internal narrative, I have witnessed how patients can begin to heal by attempting to “rewrite” their reproductive story”; they may not know exactly how the story will end at this point, but navigating and choosing how they move forward—especially given all the options that current reproductive medicine offers—gives them back a sense of control.

Allison and Core Belief Disruptions

Allison, 38-years-old, had experienced a recently failed IVF cycle. With only one other frozen embryo, she was planning to try another transfer, but was not sure what would happen if that one was unsuccessful as well. Financially maxed out, she and her husband were faced with some very challenging decisions. Should they try another retrieval using her eggs? Should they consider using an egg donor or embryo donation? Should they adopt?

Today, though, she came into session in tears and in a rage. As she grabbed for the tissues and started piling them up on the coffee table between us, I realized that before I even knew what was causing her such pain, “I was feeling helpless and overwhelmed by her emotional state”. I recognized that this was most likely how she was feeling as well. We sat silently for a few moments while she dried her eyes, and then she blurted out that one of her best friends just announced that she was pregnant—and did so via Facebook for the world to see. “She didn’t even have the decency to let me know privately. She knows what I have been going through. It would have been hard enough to find out she was pregnant, but to find out like this? And all the time I opened to her about my struggles, I thought she cared! I feel so betrayed. I don’t even know how long she has been trying for.”

As I comforted Allison by affirming her feelings about her friend, I began a mental list of all the assumptions she had held, and how many had been shattered by her fertility struggles. First and foremost, and a core belief nearly all people have before they start to try to conceive is, “everyone can get pregnant; it’s easy.” Many people assume that all they have to do is stop using birth control and voila! Indeed, it is so drummed into young men and women to “be careful” that it seems as if getting pregnant happens effortlessly. So often women with no fertility issues, and no sense of how their joking comes across, declare “all he has to do is look at me and I get pregnant!” Clearly this is not funny to people in the midst of a fertility work-up or a miscarriage.

Allison assumed that her friend had gotten pregnant on the first try. Whether this was true or not did not matter; to Allison it was simply unfair. One of her core beliefs, that “life is fair,” and that “the world is a just, secure, and reasonable place,” was disrupted by her friend’s pregnancy. Additionally, the belief that “my friends understand me and are supportive of me; I can trust them” was crushed. The challenge for Allison was to make sense out of this threat to her fundamental beliefs. Not only had she not been able to easily become pregnant, but a trusted friend had, and in the process, betrayed their alliance. Could it be mended? Could the earth right itself again and the pieces fall back into place? As a therapist who has observed the great strength and growth that reproductive patients exhibit over time, I knew it could. But right now, as the tissues continued to pile up in our session, things were not logical, the world was not fair, and I needed to listen to more of Allison’s shaken world. While I wanted to be present to the current dissolution of her reproductive story, I also wanted to encourage her to think about her strengths and resources.

Allison went on to talk about her last IVF cycle. “I don’t understand why it didn’t work. We chose the healthiest looking embryo—I didn’t care if it was a boy or a girl. In fact, I told them to just pick the best one and not tell us the gender. We had all the embryos tested. These were the two that came back normal, so it should have worked. Now we’re down to one.”

Allison and her husband had opted for an additional procedure after the embryos began developing called pre-implantation genetic screening or PGS. The test entails removing a cell from the embryo prior to transferring it to the uterus and checking to see if the chromosomes are normal. There is some controversy in the literature about this procedure, as it does not guarantee the embryos will develop normally. It certainly can weed out embryos that won’t develop, but there are some conditions in which the embryos can self-correct as they develop in utero, even with an abnormal result. The test is often very useful if the woman is of advanced maternal age (considered to be 38 and older) or if there is a known health risk.

“And I did everything!” Allison continued. “I went to acupuncture; I stopped eating gluten and loaded up on pineapple. And I was so good about resting for 48 hours after the transfer. I basically only got up to pee!”

I validated that Allison did do everything she could that was within her control. She did do everything right. Only, with pregnancy, doing everything right is still not a guarantee. This brings us to another core assumption, what I call the Santa Claus theory, and a significant part of people’s reproductive story: “If I am good, I will be rewarded for it (Santa will bring toys)” or, stated slightly differently, “if I work hard at something, I will succeed.” In our core belief system, the opposite of these assumptions is also true. So, as it goes, if I am not rewarded, I must be bad, or if I didn’t succeed, I must not be working hard enough. When people mention this in their reproductive stories, they often reference other people who they feel didn’t do everything right. I have heard numerous versions of how unfair it is when someone had kids and couldn’t afford them, or drank, or had them too young, or wound up getting divorced. I can recall one patient talking about her older sister who got pregnant as a teenager, had the baby, and then wound up living back at home as a single mom. My patient was adamant that she would never do it that way. She and her husband got married first, waited until they had finished college and had a steady income, waited until they could afford a house. In their minds they were doing it the right way, and “when they were diagnosed with age-related fertility issues (commonly known as old eggs), they were naturally devastated”. The assumption, “what did I do wrong to deserve this,” is one that runs deep.

The facts are that a woman between the ages of 20-25 has about an 85% chance of getting pregnant; by 30 years of age, the rate drops to approximately 60%; by 40, it drops to about 35%, and when a woman is 45, there is only a 5% chance that she will naturally conceive. People are delaying having children for many reasons, such as pursuing higher education, the ensuing student loans and financial debt, needing to move back in with parents because of debt, not finding the “right” person and many more. Many people also assume that reproductive medicine will be available to them, and are astounded by the cost as well as the rates of success. For women under 35 going through IVF, there is about a 40% chance of pregnancy; for those over 40, it drops to about 11.5%. So, although waiting until one feels established and able to take care of a child is smart, it also can come with risks if one waits too long. At 38-years-old, Allison’s ability to produce healthy eggs was definitely in decline.

When All Else Fails, Blame Yourself

Because reproductive trauma disrupts one’s fundamental beliefs about how the world is and how it should be, the search for reasons becomes paramount. This is especially true for individuals or couples who have “unexplained infertility” or a pregnancy loss for unknown reasons. Generally speaking, about 20% of infertility cases are unexplained, while the rest can be equally divided into female factors, male factors, or a combination of problems in both partners. In my clinical experience, the bulk of the feelings of responsibility fall on the woman when a pregnancy fails. This is likely due to the fact that she is the one carrying the baby and feels in charge of its care. Whether it’s an early miscarriage, an ectopic pregnancy, a stillbirth, or an unsuccessful IVF cycle, women not only feel like it’s their fault, but also want answers. Unfortunately, there are times when there are no answers.

“Allison’s failed IVF cycle was unexplained”. The embryo had tested “normal” and according to her embryologist, it had thawed well and was “hatching” when the transfer took place. Her uterine lining was in great shape. All systems were go. In a follow-up meeting with her fertility doctor, she was told that these things just sometimes happen, and that it was not her fault.

“How could it not be my fault? It was my body, after all! I wonder if there are things wrong with me that they just don’t know about. Or…if I’m just not supposed to have children.” She was crying again and pulling out more tissues.

In a desperate search for reasons, Allison was blaming herself. The assumption was that she had done something wrong. My impulse was to reassure her that she did not cause this loss, but I wanted to hear her reasoning. So, I asked why she thought she was not supposed to have children. “I know I never brought this up in here,” she began. “But when I was in college…well…” she hesitated, “…I had an abortion. I don’t know how you feel about that. That’s why I never brought it up. I know it was the right thing at the time. At least it was the right thing for me. He was not the right guy, or the right time. I mean, I was in my first year of college. I was just, well, experimenting. Can you imagine? It would have if completely changed my life. But now when I think about it I wonder if that was my only chance, that somehow I am being punished. That because of what happened then, I shouldn’t have children now, when I am really ready to be a mom.”

At this moment, Allison revealed another of her core assumptions: you get what you deserve. It is not uncommon for fertility patients to blame their current reproductive issues on what they perceive as past indiscretions. Whether it’s about partying too much in high school, or promiscuity, or as in this case, a previous abortion, their self-blame is not always rational, and almost never accurate. Searching for reasons, it felt more reassuring for Allison to blame herself for her current loss, than to believe it to be some random event. As paradoxical as it may seem, self-recrimination may actually bring some relief to the internal chaos of a shattered schema.

So many times, when couples are struggling with conception, they are given well-intentioned, but inaccurate advice to “just relax” or “my sister-in-law went on vacation and came back pregnant; maybe that’s what you need to do.” For fertility patients, this popular notion translates into: “you’re not doing it right.” Whether it’s about not being relaxed enough (and who is when they’re giving themselves shots!) or for having negative thoughts (i.e., “I don’t think this is going to work”), women may absorb this into their self-narrative. If only one could control conception through one’s thoughts! There would then be no need for birth control! And throughout history, women have conceived under extremely harsh conditions: during war, famine, following rape. These are clearly not times when women are relaxed. It can be helpful for the clinician to remind patients that conception is not a skill, but a biological process that has nothing to do with thinking.

“Self-blame that accompanies reproductive losses can be destructive and promote a downward spiral of negativity”. Depending on the strength of the blame and feelings of punishment, these adverse attributes can become incorporated into the very core of one’s being, leading to negative self-worth, an all-encompassing feeling of meaningless, and depression. Although important for patients to give voice to their deepest feelings of guilt and shame—doing so can actually provide relief—it is equally important that they are able to regain control and process their self-deprecation in a constructive way.

Grief-work, Coping, and the Reproductive Story

With gentleness, I addressed Allison: “You’ve really got a lot going on right now. Not only are you grieving the loss of this pregnancy, you are trying to make sense of your friend, and you are thinking back to decisions you made in college and wondering if you deserve what’s happening now. No wonder you’re feeling awful.” The message here was clearly supportive, but it was also meant to remind Allison that a failed IVF cycle is something to be grieved, compounded by the questions she has about trusting her friend and her own past decisions. Sadly, losses involving failed cycles and even early miscarriages are commonly treated as non-events by society at large, and sometimes even by medical staff. Because of how medically frequent these losses occur, they can become easy to dismiss—but clearly not for the particular woman it’s affecting.

Feeling disenfranchised in her grief, Allison needed to be able to label it as such and to understand that grief of a reproductive loss is not simple. “If you had a favorite uncle who passed away,” I continued, “you would have a store of memories, lots of photos, and people around you would understand how sad you are. But lots of people don’t really get how significant a failed IVF is. You have put so much effort into this—physically, financially, emotionally—it’s got to feel awful that you don’t have anything to show for it. And you’re not only sad, you’re angry. It’s not fair that this is happening when other people like your friend can get pregnant so easily. It’s also not fair that you got pregnant at a time that wasn’t right for you and that now, when it is the right time, you are struggling.”

I could feel the room sigh a breath of relief. Allison’s shoulders dropped and she nodded. She felt heard and understood. But the next step was to have her consider how to cope with these changes in her narrative. She needed to be able to compartmentalize her grief and have it coexist and intermingle with her strengths and resources.

Here’s where the concept of the reproductive story can help. Our patients come to us in crisis. They are in the middle of their reproductive story and don’t know how it is going to end. They can look to the past, understand how the story began, recognize their assumptions, and see how their hopes and dreams got thrown off course. They are certainly aware of the enormous pain they are in at present. And the ambiguity of the future—will they become parents, how will they get there, what happens if they can’t become parents—is causing significant stress and emotional pain. What they can’t see is how the experience of reproductive trauma can actually enhance their lives in the future, and produce a new and revised life story.

The Importance of Telling the Story

One thing we know that helps people grow beyond their traumatic experience is grief work. This entails feeling the range of emotions that naturally occur and being able to tell their story—to select people. Sharing their story is the essence of narrative therapy. The process reduces isolation, increases the sense of connection with others and creates a feeling of being understood. Additionally, telling the story without feeling judged allows patients to unburden that which they feel most ashamed about. Whether this happens in therapy (as with Allison) or outside of therapy is less important than the issues of trust and safety. Allison’s loss of trust in her friend compounded her already fragile self-esteem.

It has been suggested in research on trauma that there are two systems of storytelling?. One is for public consumption; the other is the story that we tell ourselves. That story, the one deep inside of us, is the one that produces haunting, intrusive rumination, and with it self-loathing and self-doubt. In therapy, we try to access that deep story. In order to heal, that story needs to be befriended and looked at in a different light. Allison’s previous loss through abortion filled her with immense shame. Had she not been struggling with infertility, however, that part of her history might never have resurfaced. But the failed IVF coupled with the repeated attempts to get pregnant the old-fashioned way overwhelmed her. The fact that she could open up about it in therapy and have it be received without judgment was an enormous step for her. Instead of continuing to be self-punitive, Allison was on the road to replace her harsh and self-punishing inner narrative with a more tender, kinder version. This is a process that takes time, as all grief does, as the gradual acceptance of a new story emerges.

I had three goals for Allison at this point. Although laid out here in numerical order, these therapeutic goals are not linear; rather they co-exist as part of the ongoing process that occurs as one assimilates the trauma into a new narrative:

1. Manage her emotions and reduce her negative self-talk. I encouraged her to express her feelings without the harsh self-critic that was so deep-rooted. Labeling what she was experiencing as grief helped to validate that her loss was real. I also encouraged her to reach out to others for support—carefully. I suggested some local peer-led support groups to contact so that she could find other people who would really have empathy for her story of trauma and loss.
2. Work on ways to craft new narratives, new schemas. Allison found it helpful to think of her reproductive story as evolving. She thought about her remaining embryo; what if it didn’t work? While some people take comfort in focusing on the present and not delving into the “what-ifs,” Allison needed to have a plan ready in the wings if her next attempt didn’t succeed. Although she had yet to make a firm decision about anything, giving space to contemplate the future was allowing her to think about a new narrative.
3. Recognize that her core assumptions about pregnancy, her relationships, and feelings about herself were changing. Trauma can be thought of as a turning point. There was the time before, and the time after. Beliefs about oneself and how the world works can significantly change. And, as will be discussed, post-traumatic growth following reproductive losses can be quite life-altering in a positive way.

Out of Loss There is Gain

There have been numerous studies focused on posttraumatic growth (PTG) and the positive gains that can arise from challenging life crises?. Whether it’s recovering from a life-threatening disease, surviving a car crash, or witnessing a mass shooting, people can grow, change, and appreciate life in profoundly different ways.

As we have observed with Allison, trauma challenges fundamental assumptions—about oneself, one’s relationships, and the fairness of the world. The disruption to one’s narrative or schema commonly results in negative responses such as intense anxiety, depression, anger, intrusive thoughts, and/or feelings of numbness. Physical reactions are also common: headaches, gastro-intestinal upsets, fatigue, or a general sense of not feeling well. While the consequences of trauma result in psychological and physical distress, personal growth can occur in its aftermath as well. There is a cognitive restructuring that occurs in order to rebuild a sense of the future, and focus on what it takes to cope and find meaning. It’s important to note that the ability to grow does not signal an end to the trauma, the pain, or the distress, but they live alongside each other to create a new worldview.

A greater appreciation for life in general is a common characteristic of growth after trauma. There is often a newfound sense of gratitude for the everyday, a not-taking-things-for-granted attitude. For people dealing with reproductive trauma, research has shown that when they do become parents—however they get there—they tend to have a better relationship with their children, with greater emotional involvement?. The speculation is that the parent-child relationship may be strengthened because of the great lengths it took to become a parent, and the appreciation for their family becomes heightened.

From clinical experience, I have seen infertility and pregnancy loss patients grow in extraordinary ways, whether they are able to eventually have children or not. So many who have been down this road want to “give back” as a result of their experience. One couple made memory boxes for other parents and delivered them to the hospital where their daughter was born still. Another woman took to Facebook to educate the community as to what to say, and what not to say, when someone is struggling with fertility issues. Others have taken the opportunity to reevaluate their careers; I have worked with many women in healthcare, including mental health professionals, who decide to change focus and specialize in working with reproductive patients. One nurse opted to return to work in obstetrics so she could be there at the front lines and provide care to those in need.

“As people balance feelings of loss with a sense of growth, the strength that emerges is distinct”. Knowing that bad things happen, that we are all vulnerable, and that—most importantly—we can get through it, increases one’s resiliency. A new core belief can develop: “I am a person who is tough, hardy, and can handle just about anything!”

The Reproductive Story Ends

Our reproductive stories have a beginning, middle and end. As discussed earlier, patients enter therapy in the middle of their story at a heightened state of loss and pain. Using the story as a therapeutic tool addresses the inner beliefs and core assumptions of pregnancy and how it was supposed to be. Whatever the trauma or loss that has brought them in to our office, this experience is clearly not how their reproductive story was supposed to unfold.

One of the pluses of using the reproductive story in treating patients is that they immediately get it. Although there is a great deal of psychological theory behind it, it’s instantly recognized and understood without any psychological jargon. Knowing that they are in the middle of their reproductive story, gives them a sense of a timeline. Where they had felt a loss of control, they can utilize the idea of their story to edit, rewrite, and come up with new possibilities. They can try on different endings: if I use an egg donor, how will I feel? Can I emotionally and physically handle another miscarriage? If we decide to stop trying, how will our lives have meaning?

The reproductive story allows patients to understand the personal meaning of pregnancy and family, and the depth of what is lost when the story and their core beliefs go awry. I have the opportunity to explore these narratives, and the trauma they have experienced opens doors to explore new possibilities in creating a family, and in the broader context of their lives. Although their reproductive trauma has changed them forever, they also can embrace the ways in which they have grown through the process.

Postscript

As for my work with Allison, over the course of the next several months she continued to progress in a constructive way, between grief and growth. She was preparing herself for her next IVF transfer with the one remaining embryo. In looking at options beyond that, both she and her husband agreed to “wait and see” and keep the option of using an egg donor on the table.

The day she walked into my office beaming I knew she was pregnant. Her blood test results came back with a really high beta and had doubled, meaning that the embryo was developing as it should. We celebrated, cautiously, as we knew that there are never guarantees with pregnancy. She was trying to enjoy the here and now, even though it was filled with anxiety about all the things that could possibly go wrong. I normalized this for her; everyone who has had a reproductive trauma is anxious about a subsequent pregnancy, another loss. Gone are the days of that innocent assumption that getting pregnant and having a healthy child is natural and easy. As I welcomed her into the next chapter of her reproductive story—pregnancy—I reminded her that whatever happened, we would get through it together.

References
(1) American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th ed.; American Psychiatric Association: Arlington, VA, USA, 2013.

(2) Jaffe, J. & Diamond, M.O. (2011). Reproductive trauma: Psychotherapy with infertility and pregnancy loss clients. Washington, DC: American Psychological Association.

(3) Cann, A., Calhoun, L.G., Tedeschi, R.G., Kilmer, R.P., Gil-Rivas, V., Vishnevski, T., & Danhauer, S.C. (2010) The Core Beliefs Inventory: a brief measure of disruption in the assumptive world. Anxiety, Stress & Coping, 23:1, 19-34, DOI: 10.1080/10615800802573013.

(4) Van der Kolk, B. (2018). Trauma conference: The body keeps score. www.pesi.com.

(5) Tedeschi, RG & Calhoun, LG (2004) TARGET ARTICLE: “Posttraumatic Growth: Conceptual Foundations and Empirical Evidence”, Psychological Inquiry, 15:1, 1-18, DOI:10.1207/s15327965pli1501_01

(6) Golombok, S., Lycett, E., MacCallum, F., Jadva, V., Murray, C., et al. (2004). Parenting infants conceived by gamete donation. Journal of Family Psychology, 18, 443-452. DOI: 10.1037/0893-3200.18.3.443.

Why I Hate Alzheimer’s

Alzheimer’s is a Thief

As a therapist, to say I hate a disorder is a big deal for me. I specialize in personality disorders—narcissism, borderline, and anti-social—and have found beauty and giftedness where most see dysfunction. I don’t hate any of these disorders, even the ones that tend to be destructive for the client and their family, and exceedingly challenging to work with clinically.

But Alzheimer's is different. A personality disorder can be understood and even managed. Someone with a personality disorder can grow in their perception of how the disorder changes their perception of reality. They can learn new ways of coping and relating. But such is not the case when working with clients who struggle with Alzheimer's. Because people with a personality disorder tend to be long-term clients, I have the unique opportunity to see these clients, as opposed to Alzheimer’s patients, though many life stages, including the aging process.

“Alzheimer’s comes like a thief in the night”; except it keeps returning at random times during the same night and on nights thereafter for years at a time. Like a thief, it steals one item at a time—a memory, a possession, a skill—and moves around others, so they appear to be lost but are not. Sometimes it breaks things and leaves the pieces behind in unrecognizable forms. For the most part, it is sneaky, always moving and changing what is least expected. But in the end, it steals the whole house or the whole person leaving no remnant behind.

The worst part is not what it does to the person but what it does to the family and friends. The family remembers what was in the house and cannot forget what was lost or moved. With each visit from the thief, the family is traumatized by the stolen items or damaged goods. Bit by bit, the family suffers a new loss each time the thief comes. They cannot forget what is missing. They want to forget but are unable.
This is why I hate Alzheimer’s.

My Father’s Struggle

My dad had Alzheimer’s. Watching him fade away was one of the most difficult experiences of my life, both personally and professionally. It challenged my ideals, tested my patience, expanded my knowledge, and wore me out.

My dad was an exceptional person. He is credited as one of the pioneers of the computer age. He took the early building-size, main-frame computers and found practical applications for business such as the airline reservation system and the storage of security documents for the government.

His genius IQ, matched with a reserved but intense narcissism, made him a force to be reckoned with. In his personal life, he turned a paralyzing airplane accident into a triumph of brain over body. At 22 years old, he was told he would never walk again, but his determination, willpower and never-give-up attitude allowed him to walk until Alzheimer’s stole that ability away.

“No amount of brainpower, willpower, determination, or perseverance could stop the negative progression of Alzheimer’s”. As a therapist, I am trained to spot changes in a person’s behavior. But seeing them firsthand was difficult, and even more difficult was placing my father in a brain clinic to see how far his dementia had progressed. It was what I feared, and even worse was the realization that he was rapidly headed towards Alzheimer’s.

To test the regression, I asked my dad for a ride to a local grocery store that he had been going to weekly for over 20 years. He could not find it, he could not stay within the lanes of the road, he was driving extremely slowly, and he was yelling at the other drivers as if they were in the wrong. That was when I made the decision to take his driver’s license away. He yelled. He screamed. He threw a giant temper tantrum accusing me of trying to keep him hostage and imprisoned. I was just trying to keep him and everyone else on the road safe. But he saw it as an attack on his freedom and came after me for it.

Nearly every time I visited him, some other decision like this had to be made. He sent a $3,000 check to pay a $300 electric bill, so the bills had to be taken from him. He called old business partners and started telling them about a “new project” that occurred over 30 years ago. His phone access was then limited. He left the house in his PJ’s and we would find him wandering the neighborhood lost. An alarm was always set on the house signaling an open door. He lit a candle and nearly burned down the whole house. With each restriction came more attacks.

This was not my dad. Bit by bit, the independent, self-assured, if somewhat narcissistic, man I knew was transforming into a dependent, emotional shell of a human. Nearly every aspect of his personality was erased. I dreaded my visits to him and the realization that some new restriction would need to be placed for his safety and my mother’s. I hated what was happening to him. I hated how my mother aged 15 years in the span of three. And I hated having to make the hard decisions. I fell deeply in hate with Alzheimer’s.

The Thief Unmasked

Confusion. One of the early signs of Alzheimer's is confusion about family members, favorite locations or regular activities. In the beginning, it seems as if the patient is playing a joke about what they can and cannot remember. At first, the patient goes along with the laugh but later it turns to frustration and then anger or worse, rage. The hard part is that the confusion is different nearly every time. One day a family member is recognized and the next they are a stranger. It is terrifying for the patient to be told they should remember something that they cannot. Think of it as a wave crashing onto the shore, this wave of confusion will pass but another will be right behind it.

Anger. Also known as Sundowner’s Syndrome, the Alzheimer's patient becomes enraged late in the day resulting in temper tantrums that rival those of a two-year-old. It is as if the confusion of the day builds to a crescendo which is then released in outbursts that are uncharacteristic, intense and extremely hurtful to those around. Foul language, throwing things, abusive speech and physical aggression are common. It is often impossible for the caretaker, especially if this is a spouse or child, not to take these words personally. But that is precisely what needs to happen. It helps to disassociate by seeing the outbursts like an acting performance instead of words from a person they love. The words spoken are not reality-based, but rather exaggerations and extremes of delusional thoughts.

Disintegration. The negative progression of the disease means that one day the patient can push a button and the next, completely forgets how to do so. One day, the patient remembers to eat and the next, they do not. Simple, everyday tasks become impossible feats where everything takes much longer to complete than ever before. Like pieces falling away from a formed puzzle one at a time, such is the disintegration of the patient’s mind. This is difficult for the caretaker to absorb because the pattern of deterioration is unique to each patient. Sometimes it helps to see this process as a reverse of childhood progressions and accomplishments. As the disease progresses, the patient becomes more infantile in every way.

Delusions. One of the scariest parts of watching the progression of Alzheimer's is witnessing the impact of the patient’s delusions—on them and those around them. A patient can watch something on TV and be transported into that reality as if they were the ones experiencing the program. Or they might call a hospital a prison, identify a friend as an enemy, or walk out of the house unaware of their nakedness. The temptation for the caretaker is to point out the delusional thinking as a way of comforting the patient. But this can and often does backfire into an angry rage where the patient can become paranoid and believe that everyone is against them. As painful as it is to watch, it is far better to accept the delusion and play along until the patient is in a safe location or has settled down.

Fluidity. Occasionally, the Alzheimer's patient becomes lucid and fully aware of their circumstances to the point that they seem normal again, if only briefly. The fog from their confusion lifts, their natural mood returns, and they are thinking clearly and logically. When this happens, the caretaker gets excited, relieved, and begins to wonder if they were imagining the whole nightmare of deterioration. The caretaker questions their reactions and judgment, putting aside the negative experiences. This is where things can become traumatic for the caretaker. They can begin to believe that it is all over when suddenly out of the blue, the patient snaps. The unsuspecting caretaker is caught off guard as the Alzheimer's patient sinks to a new progressive low point. The discouragement and depression that transpires with each event take a huge emotional toll on the caretaker.

What I didn’t know then but realize now is just how those years traumatized me. It is a form of C-PTSD (Complex- PTSD) to have a parent who was never abusive act in a manner so inconsistent with their personality. It shakes the foundation of their house and yet they are not to blame. Alzheimer's is.

It wasn’t until a client had a dementia-induced manic episode that I realized the level of trauma I had experienced with my father. Listening to the client’s illogical rants followed by emotional outbursts inconsistent with the topic brought back my dad’s behavior. At least with a client, there is the ability to emotionally detach and disconnect in a way that preserves perspective and clarity of thought. But with a parent, it is different.

My dad said things that he would never say. I was adopted by him at the age of 12 and he always treated me like I was his blood child. But, in the last years of his life, he told me he didn’t want me and that I was a terrible daughter. Logically, I knew he didn’t mean it. Emotionally, I detached because there were so many decisions to make. And now, looking back, I see the traumatic impact. This was not my dad. This was Alzheimer’s and I hate what it did to him, to us, to our family.

Looking back, there were a few things I learned along the way that helped me to keep my perspective and not completely lose it during the crisis. I’m a firm believer in losing it after the crisis is over.

Important Lessons Learned

They are not lazy. Alzheimer’s patients are struggling to do even the most automatic routine. As Alzheimer’s progresses, the brain loses its ability to process, recall, reason, and function. What took seconds to register in the past, can now take minutes and even hours depending on the subject, time of day, emotional awareness, and significance. It is not laziness to struggle with matters such as buttoning a shirt, reading a clock, or remembering how to use the microwave. It is a result of the disorder.

There is no significance in what they do and don’t remember. Looking at an old photo album, my dad was unable to identify family members, but he could identify people he worked with. The brain organizes information in a variety of ways, almost unique to everyone. “Alzheimer’s attacks the brain in random ways with some areas of the brain deteriorating more quickly than others”. This makes the progression distinct for each patient, and the patient is not responsible for how any of these parts operate or worsen.

Their comments should not be taken personally. This is particularly difficult especially when the comments are hurtful and said in anger. Anger is a base emotion and is the easiest to express. My dad took his anger out on me. I preferred that over him taking it out on my mother, his caretaker. Alzheimer’s steals the house in pieces, changes the personality, and leaves mere shadows. When the patient speaks, they are rarely their true self. It is useful during these times to hold onto the comments that were consistent with past behavior and leave the other comments at the door.

They can perform when needed. Some Alzheimer’s patients can pull it together for a short period of time during certain special events, almost as if there is nothing wrong. This may cause family and friends to say the reports of the condition are exaggerated. They are not. Usually, after the event, the patient will become even more detached from reality and might even suffer a setback. The “show” is their survival instincts kicking in which can only be sustained for limited periods of time. Once their energy is depleted, they tend to retreat and shut down for a period of time.

They have delusions. As the disorder progresses, it is not unusual for an Alzheimer’s patient to watch something on television and believe it happened to them. These delusions are usually harmless unless they begin acting out paranoid thoughts. Think of the visions as part of an overactive imagination with no filter for what is real and what is fictional. If the fantasies are challenged, however, the patient can become unnecessarily confused, frustrated, agitated, and even violent. It is very important to remember not to challenge the delusions. Just go with them even though it might be painful to watch or hear.

They remember random events. Even the most significant days such as a wedding or birth can be impossible for an Alzheimer’s patient to remember. Showing pictures with names and dates can be useful with the expectation that it won’t work every time. The nature of the disorder causes memories to be recalled one day and lost the next, only to be recalled and forgotten again. Alzheimer’s patients are not in control of what is remembered when it is recalled, and what is not. Sometimes they assign great significance to minute moments and no value to major ones.

They still need visitors. It is easy to justify not seeing Alzheimer’s patients because they don’t remember, so there may seem to be no point in visiting. Stopping by to receive recognition, approval, or attention will not be rewarded with an Alzheimer’s patient. Often, the visits are very difficult and painful. However, it is precisely during these times that the character of a person is revealed. Spending time with them can be thankless but the internal rewards of determination, patience, and perseverance are worth the effort.

Their angry responses should be released. It is not uncommon for Alzheimer’s patients to become confused as the sun goes down, the aforementioned Sundowner’s Syndrome. As the disorder progresses, any change, including increased darkness, can be a source of uncertainty and fear. Anger is a base emotion and frequently is a go-to for anxiety, depression, loneliness, distress, and even terror. As the sun sets, the patient becomes fearful and reacts in anger usually forgetting the occurrence the next day. Holding onto the comments made in anger hurts the caregiver, not the patient.

They will not improve. This is a degenerative disorder for which there is yet no cure. Perhaps one-day things will be different as more research is conducted. The good news is that there is medication available to those who qualify to slow the progression. But there is nothing available to undo the deterioration of the brain. Hoping they will improve adds to the frustration for everyone, setting the stage for large amounts of disappointment.

They shouldn’t be compared. Each person is unique in personality, the associations they attach to an event, what they assign as significant and how they utilize information. In addition, Alzheimer’s impacts the brain in different locations at a variety of progression rates. This creates a distinctive experience for an individual. While it is helpful to be involved in a support group with others who struggle as caregivers of Alzheimer’s patients, it is not helpful to assume the journeys will be the same.

What was helpful for my family was a strong support network of empathetic people. My mother and I shared stories with each other and others who were on a similar journey. Today, we can be far more empathetic to others who are walking where we have gone. Seeking out professional assistance during this time to reset expectations, learn about the disorder, and process the difficulties is extremely beneficial.

Epilogue

As for my client with the dementia-induced manic episode, my ability to relate to the family’s experience was greatly improved because of the deep empathy I experienced rooted in the relationship with my dad and his disease. I found that I could better listen to their concerns, fears, and panic moments without judging, dismissing or overreacting. They knew, as I did, that they had shifted to a new normal and with each change, the grieving process evolved and deepened. We could work simultaneously in the present and future on behalf of the client, and of course, them.

My client will not get better. While the mania may pass, the dementia will remain, and her personality will transform into the same shell-like existence of my father’s. The thief has walked straight through the front door of their lives and begun cleaning them out, insidiously and ravenously, until there will be nothing left to devour.

I grieved when my dad was diagnosed, again when the restrictions began, once again when he had to be hospitalized, and finally when he passed. Each phase in the grieving process was familiar because it was the same issue and yet unique circumstances. What I didn’t expect was to continue my own grieving as I watched and witnessed my clients endure the same or similar loss.

But as I grieve, new insights and understandings form. I’m building a new house out of the remnants left behind by the thief. A house that embraces a new normal, gives allowances for grieving, sifts disorganized thoughts, and allows freedom of expression. And so, I am free as well. Free to hate Alzheimer’s.
 

Hidden Losses

No one should die in December. Not that death is ever convenient or well timed, but it is the rare person who has extra time during the holiday season to accommodate the disruption death brings to life. As a psychologist, it is the time of year when my practice is the busiest and sessions often have a poignant depth, setting the stage for the hard work to come in January. The contrast between the joyful expectations of the season and the holiday blues is probably felt most acutely in therapists’ offices.

On December 9, 2018, I was hanging ornaments on my Christmas tree when my home phone rang. Assuming it was an end-of-year solicitation, I almost didn’t answer it, but I thought it might be my mother calling. At 93, she is one of the few people in my life who still uses my landline.

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Instead, the call brought shocking news that Larry was dying. Larry was like a brother to me and had been part of my life since I was 10. Larry was the person I would call if my mother was in the hospital as he lived only a few blocks away from her in New York City. But suddenly I heard, “Larry had a massive stroke an hour ago and isn’t expected to make it.” Two weeks earlier, I had given him a hug goodbye after another memorable Thanksgiving at his home. Our families have shared Thanksgiving for over 25 years. This year, we had celebrated Larry’s recent retirement and 65th birthday as well.

Less than a half hour later, my husband and I were in the car on the Massachusetts Turnpike heading from Boston to Manhattan. Not knowing how long I would be gone, I had grabbed my briefcase with my appointment book. As my husband drove, I began texting my Monday appointments to cancel our sessions explaining that a friend had suddenly died.

Over the next month, despite multiple trips to New York City for family gatherings and the memorial service, I missed just two days of scheduled work. As a result, only a small percentage of my practice learned about my recent loss. Typically, whenever I share personal information with a client, it’s a thoughtful decision timed to illuminate something specific for that person. In this case, it was an arbitrary act of scheduling that created two groups: those who knew and those who didn’t. This contrasted sharply with my experience 30 years ago when my father died, and I canceled all my sessions for a couple of weeks. More recently, I had experienced another loss, when a former client was murdered, a loss I carried privately and never shared with any of my clients. Now, I realized I needed to be cognizant of who knew and who didn’t so I could be emotionally prepared to respond when someone offered condolences.

I suddenly found that I was straddling two worlds within my own practice. I was having the mirror experience of some of my clients, those for whom I serve as the person in their life who knows about a “hidden loss.” I carry the knowledge of abortions and abuse. I am privy to unfulfilled dreams and broken promises. One of the gifts of an established therapy relationship is not needing to give the “Cliffs Notes” version of life events. Clients count on me to understand the complexity of their relationships. I know when the death of a parent is a relief and when it is a deep hurt. Therapy is not a reciprocal relationship, and I do not expect my clients to take care of me, but admittedly, it was comforting to be asked, “How are you?”

Not surprisingly, I found myself feeling closer to the clients who knew of Larry’s death than to those who didn’t. When I could speak about my love for this friend, I felt more whole. When clients asked how I was doing, acknowledging my grief allowed me to put it aside and enter into the therapy hour better able to listen. In the few moments I took to explain that Larry was a dear friend whose hospitality and generosity over the years had made Thanksgiving my family’s favorite holiday, it was an opportunity to pay homage to this extraordinary man. Introducing the information to clients who did not know about this event in my life seemed intrusive and unhelpful. Perhaps at some later date, when my experience of an unexpected death felt applicable, I might have revealed this bit of my own history at my own discretion to a particular client. For now, the discrepancy between the two groups of clients in my practice was the consequence of cancelled appointments. Switching between sessions with people who were aware of my loss and those who were not reminded me anew of how much energy it takes to conceal pain.

Keeping parts of ourselves private is important professionally, but it does come at a cost to our own psyches. As those clients who were not aware of my loss offered well wishes for the holidays and the new year, I tried to join in the cheer. But inside, I was struggling to adjust to a new normal, a life without someone I loved, a loss hidden from much of the world, but certainly not from my heart. 

The Healer that is Hurting

Life’s a beach, or so I’m told. Paradoxically, death may draw many apt analogies from this image.

This summer, my work was humming along to the tune of vibrant pulsing music, much like a beloved beach getaway. My client load, lightened by family vacations, left breezy spaces in my schedule for unpacking course development and writing projects that had been tucked away for a while and for unfolding new ideas I had been eager to examine in the full light of day.

The sun shone brightly down as I played with the projects like beach volleyballs in the ocean, keeping each in the air with my respective co-teachers and co-authors until they skidded across the water before me with large splashes of inspiration, ready to be passed, set, and attacked in turn with greater intention.

And then, I woke up one morning this week to an email informing me that a buddy of mine who has been battling brain cancer for more than a year is now in end-of-life care. In cruel and rapid succession, thirty minutes later, I learned by telephone that my mother-in-law died peacefully in her sleep the night before, after her own two-year fight against cancer. Despite the battles my loved ones had been fighting, the news of these events was both sudden and unexpected, like going for that ball in the water and falling off the sandbar that I didn’t even know I was on into the depths of the ocean, scrambling to find solid footing again.

Anticipatory grief was launched from the American side, where my buddy is from, and was amplified by the full force of the shipwreck of my mother-in-law’s passing on the Swiss side, where I now live. It has been two and a half years since my last family loss, my maternal grandfather, my last grandparent. I remember that it hurt to lose him – an enormous, ocean-sized bucket full – but I had forgotten how ravaging grief feels in the moment it is felt. Until now.

Grief is often described as coming in waves. I had forgotten how bone crushing and soul squelching the break of those tsunami-sized waves feels until I received news of these recent events. Gasping. Sobbing. Roaring. Crashing. Crushing. Overtaking. Undertowing.

The former lifeguard in me recognized the drowning person’s combat, wordless and writhing under the weight of the wave of grief, struggling to keep her head above water, breathing in fits and spurts. Time is different in that space and place, seemingly at a standstill in the struggle to get to the surface, to figure out which way is up again. Until grief, finally deciding to subside… leaves the body limp and devoid of form or feeling, like seaweed tossed upon the shore both as an afterthought and as a reminder of the power of the wave that has (temporarily) receded.

I am still on this sober beach, lying on the sand in the ebb of the tide in the interim between my mother-in-law’s death and burial, her demise and our ceremonial remembrance of her. I am experiencing the void of losing her and the unbearable anticipation of the loss that I know is still coming – the next hard wave that will hit when I want to pick up the phone after work to pass the commute home in her company – only to realize that I will never be able to do that again. I am also in anguish about what I cannot see coming – how I will react to the funeral rites I will experience for the first time as a family member in Switzerland. I have attended funerals here before, but not for someone within my family.

Despite my full integration into this Swiss society I’ve called home for over a decade, the subtle differences in rites and rituals here contrast from those of my home Appalachian culture and signal my otherness, and aloneness, to me. Certain differences in the timing of things and in how the ceremony is performed are culturally and painfully dreadful to me, like skidding against hard rocks at the bottom of a crashing wave without choice or conceivable resistance to the process.

Thus, documenting my feelings, resonances, and imaged analogies while I am still in the throes of fresh grief will serve to remind me, the healer that is hurting, that it is important to let people feel what they feel, to ask them to describe their resonances in whichever directions their sensations take them, to explore what grief and loss mean to them and how it is expressed in their culture(s), and to bear witness to their pain and struggle without trying to fix what is ultimately unfixable.

I will sit with my pain and accept it as the old acquaintance it is, letting it accompany me on this voyage to the beach and home again in the full consciousness that the length of this journey is unknown and impressible. I will also bear in mind that, at some point, I will not remember it as vividly as I feel it in this moment, and I will try to take some small comfort in that. I will eventually be able to feel the warmth of the sun again, despite its continued shining. And, when I sit as a counselor with grieving families, I will not soon forget – and will never minimize – the impact of the roaring waves of grief that cover them until their seas eventually calm again, even if just temporarily.

Grief is a Strange Land

My mom died recently after struggling with dementia and severe rheumatoid arthritis for many, many years. I moved to the Bay Area from the East Coast in the year 2000 to be closer to her, as I thought she might not have much time left, and 17 years later, on a sunny spring morning shortly after my 43rd birthday, she died as I lay in a liminal half-sleep between the 3rd and 4th round of my snooze alarm. I woke to a series of texts from her very dear Armenian-American caretaker at her assisted living facility:

9:19am
Hi Deb,
Mrs Linda’s blood pressure dropped
significantly this morning, called
hospice to monitor her

9:34am
I’m sorry to let you know, Mrs Linda
Passed away 🙁

What?! While I slept? Over text?! I wandered frantically around my apartment for a minute, or ten, searching for my mother’s gone-ness, eyes open wide, unblinking.

I had waited and prepared for this moment, had even started praying, tentatively and awkwardly, that she be released from her incontinent, bed-bound, arthritic limbs and atrophied mind, and yet: How could she just die like that? I was going to go visit her in two weeks for her 78th birthday. I should have gone sooner. I should have gone sooner.

Much of that day was spent a few inches outside of my body as I negotiated with the mortuary, made calls to friends and family, and repeated the phrase “My mom died,” each time a dissociated succession of syllables. My friends knew of her long struggle, my long struggle, and said things like, “You must have mixed feelings.” I did not have mixed feelings. I was devastated.

This was Friday. I went back to seeing clients Monday, and didn’t tell anyone that my mother had died. Eleven years earlier, when my father died after a struggle with Alzheimer’s, I had also gone right back to seeing clients at my practicum in graduate school, but because I had canceled sessions for two weeks while he was dying, I told them why I had been away. This time there was no dying—just death—and not many details to attend to after. My mom’s sickness had been long, her personality alienating, her plight sad; by the time she died there were no friends left, no one with whom to gather for a funeral.

Not having skipped a day of work, I decided I would only share my loss if it arose organically with a client. It didn’t. I felt protective of them. How hard would it be to talk about themselves, whatever they were working on at the moment, once they found out my mom had just died? Plus, I was still kind of numb—would I come across like a zombie with no remorse? Would I be able to reassure them that I was in fact OK and that I was just where I wanted to be? I imagined what a drag it would be to go to my therapist, prepped to talk about the week’s pathos, only to find out her mom had died. I would feel like a self-involved jerk diving into my own preoccupations in the face of her loss, and would feel like a jerk talking about how I felt like a jerk talking about my own preoccupations. No, I didn’t want anyone to bear my burden. That’s not why they come to therapy, after all.

The opaque sense of unreality that arose in the weeks after she died—my palette of sensations muted like a blue twilight after the sun disappears—was almost comforting. “Perhaps this won’t be that hard,” I thought. After all, she’d been deteriorating, and then dying, almost forever. Losing her had been a slow and steady stream of small infirmities and indignities rather than a flash flood, the erosion of her essential being an accumulation of griefs I hoped would inoculate me against the crushing pain I had suffered after my father died.

But I didn’t know how to both bear my burden and not burden clients. I wanted to be doing therapy—I felt present and alive with my clients—but after a few weeks it felt like the vessel in my heart where I hold people’s pain, their stories, had no more room in it. I hadn’t entirely understood that place in my body until it stopped working, and it was alarming. Because I wasn’t experiencing paroxysms of grief, weeping uncontrollably at random intervals, I mistook myself for “not really grieving.” This was compounded by the fact that my mom was in many ways a “not-good-enough” mom—her mental and physical illnesses had compromised her ability to mother long ago, but I thought I had “dealt” with that grief already, damnit. So what was this parched-solar-plexus feeling?

Ah…It was my grief.

You see, I loved her madly. Still do.

I took the week off from work in an effort to bring some space and consciousness to my grieving. I slept, read, wrote in my journal, saw beloved friends, exercised, booked an extra therapy session, got a massage. It was awful. Anxious, listless, unmoored from my routines, I spent the week berating myself for not doing a better job at grieving. I felt it was up to me to figure out an appropriate ritual to mark her death, but the idea overwhelmed me. What would I say? Who would I want to bear witness? Inside or outside? What spiritual tradition to draw from? My dad was Jewish. She was a blend of everything and nothing, but a spiritual person. Where would I release her ashes? It was too much to figure out; I was tired. I stuck her ashes in the closet near, but not directly next to, my father. They hated each other. Was it OK for them to be in the same closet? I watched a video about cremation and decided it was.

The capacity to be wise and spacious around others’ pain, the sense of tenderhearted compassion that comes so readily through me in my role as a therapist, often tricks me into thinking I don’t need help with my own struggles. But I don’t have me the way that my clients do. I have my own therapist and she, in turn, doesn’t have herself the way that I have her. We cannot be our own therapists. Therapist-Me is also an orphan right now, struggling to make sense of death, of having no parents, of the freeing and terrifying reality of being on my own—generationally-speaking—for the rest of my time here on earth. No amount of “self-care,” parenting of my inner child, and guided meditations makes Therapist-Me available to myself.

Despite years of training in the mental health field and working with people as they struggle with death, I’m struck by what a strange land grief is for me. I’ve heard many therapists say that their own grief has brought a richness and depth to their work with clients, and I think that is true for me too, but not in a particularly tangible way. What I am most aware of is how nurturing working with clients is to me right now. It is the only place where I am fully present, and being present is a tender relief as I navigate the complexity of loss in my own life.

How have your experiences of grief impacted your work as a therapist? What has helped you? What has not? I would love to know. Feel free to send me an email at: Deborah@psychotherapy.net.

What Remains: The Aftermath of Patient Suicide

Note: Clinical material in this article is taken across various venues and years of treatments. Identities are disguised to protect confidentiality. References used in writing this article, as well as resources for clinicians, can be found at the bottom of this page.

Silent Mourners

The memory is quite clear: several years ago, early one morning checking my voicemail, two messages in I came upon a message from my patient, Jill. The message was date-stamped the evening before. She said she would miss today’s session due to a need to find new housing; she thanked me for our work thus far (as she frequently did, sometimes out of social politeness or her fears of abandonment, other times out of sincere heartfelt gratitude, something we frequently explored). This time her gratitude sounded heartfelt in tone. Her message also left me perplexed, as we had not talked of housing, and I saved it. Another message, left moments before I checked my voicemail, was from Jill’s psychiatrist, Brian, asking me to give him a call when I got in the office. Brian and I spoke frequently of Jill, her ongoing medical decline at a relatively young age, and her persistent depression and posttraumatic stress. We followed her carefully, exchanged perspectives, and possessed mutual respect for one another’s clinical skills.

I called him immediately. “Are you in your office?” he asked, his voice ominous.

“Yes,” I replied, feeling my stomach tightening.

“Are you aware of the events related to Jill?”

“No,” my heart now pounded from my chest into my throat.

“Jill killed herself by handgun . . . “

I do not remember what he said next, just that he was still talking. I gasped, crying, while simultaneously attempting to hide my upset.

“Margaret, there was nothing, nothing you could have done to prevent this,” Brian continued, his voice clear and emphatic, speaking from his decades of experience, his knowledge of Jill, and his knowledge of our work together.

We talked for some time, and I could feel myself wanting to hang up the phone and be alone, but Brian insistently kept me on the line, wisely, for forty-five minutes. That was enough time for both of us to begin feeling the immensity of Jill’s death, and to begin the longer process of inquiry and reflection into her suicide and its after-effects. It was a process that would continue for a few months between us, and for more than a year for me.

Clinicians who lose patients to suicide are sometimes referred to as “silent mourners.” Some describe this kind of grief as disenfranchised. For me, I think of this grief as a kind of lived experience that catapults you into another environment which is foreign and therefore scary; a kind of grief that is uniquely solitary to bear and therefore devoid of larger community to bear it with you; a kind of grief that is intensely intertwined with shame; and a traumatic grief that possesses all the hallmarks of interpersonal trauma, whose impacts often continue reverberating long after the initial shattering experience has occurred. All of these facets and more underscore the particular experience of clinicians grieving suicide loss.

The differences are rather key in understanding how to be with our selves and also how to respond to colleagues who experience this kind of loss personally or professionally. My hope in writing this article is to buoy understanding, widen the circles of support for clinicians who have experienced suicide loss, and to offer some guideposts along the way of grieving. This topic and these aims are one of my life-long passions in my career. I have had the unfortunate experience of surviving two siblings’ suicides, the sudden death of a third sibling that suggested passive suicide, and the deaths of both parents from organic causes that were informed by these traumatic losses. My terrain of grief and traumatic loss was quite familiar to me by the time I met Jill, having traversed its intricacies in feeling, thought, and body using psychotherapy, meditation, long-distance hiking, body work, and writing, for many years. My experience served me well in working with Jill while she was alive, as well as holding what remained after her death. I was and am, after all, a wounded healer, meeting her suffering in life and in death.

Our Privileged Intimacy, Our Private Mourning

By its very nature, psychotherapy is a privileged space. The therapeutic relationship is characterized by a unique emotional intimacy with each patient. As therapists we are honored by our patients’ presence, the trust that is hard won, and the growing capacities through the course of psychotherapy we witness. We accompany and guide, inquire and curiously explore in a most particular way with each patient. With each patient, a slightly different relationship forms. We are slightly different therapists with each patient we encounter.

The extent to which we as therapists may deny the singular relationship with and presence of our patients in our lives contributes to the complications of grieving their departure in any form—from treatment termination to physical death. In her article, “Necessary and unnecessary losses: the analyst’s mourning” (2000) Sandra Buechler reflects that, because our work asks us to cultivate objectivity, and objectivity is often (over) emphasized in the work (and in training), it becomes a norm without critical thinking or reflection. This clinical cultural norm may also encourage a sense that we can (or should, perhaps) simply “move-on” when a patient departs. A therapist’s stance of distance may additionally complicate the grieving picture, especially in the case of loss by suicide. That stance may feed defenses of denial, encourage guilt, and amplify feelings of shame.

The great Jungian, James Hillman, stated that the suicide of patients is a “wrenching agony of therapeutic practice.” It is also a reality of practice that we fantasize will not touch us, despite the statistics. Depending upon the research reviewed, approximately fifty per cent of psychiatrists and thirty per cent of psychologists experience patient suicide. The statistics are incomplete and varied, often reflective of response rates to inquiry. Further, we do not, to my knowledge, have statistics on the numbers of mental health professionals who have experienced suicide loss within their personal circles of close family-friend relations, but it is fair to consider the percentages may be slightly higher if these were included.

For clinicians, suicide challenges every value we place in the therapeutic endeavor. It can raise fears of litigation, cloud clinical decision-making, and spark feelings of professional isolation. Suicide of a patient can challenge personal and professional identities, career trajectory, and sense of professional security. In its wake, patient suicide can leave posttraumatic stress symptoms behind as well as complicated grief. Interestingly, in my work with therapists who have experienced suicide loss of family or other close relations, they experience similar dilemmas. The sense that as a clinician he or she did not serve their family member or friend well, the questioning of clinical acumen, the guilt of feeling as though he or she should have done something to be of help and more, are common. As clinicians, suicide loss in any arena of our lives is experienced through the lens of our clinical knowledge, expertise, and experience.

There is little personal discussion on how therapists weather such a loss. Lay survivors of suicide are in an unknown country, inhabiting a strange landscape. Therapists surviving the suicide of a patient are in a similar land and yet there are important differences: there is no institutionalized ritual, no community of mourners, no one, really, who knew the patient as the clinician knew the patient. There is no one who witnessed first-hand (as best anyone can) the relationship between a certain patient and a certain therapist, yet the specific dyadic relationship is never to be experienced again. It is never to be remembered by anyone else but the therapist. In specific ways, we are the only one who holds our patient in mind. Even in the case of Jill, Brian held one particular relationship with her, and I another. Although Jill sometimes spoke of us to one another, the bulk of our memories of her are solitary, and the texture of our relationship with her singular.

Therapists are usually left alone with what remains in the aftermath of patient suicide. These remnants include all that was unsaid, unprocessed within the therapeutic relationship—both the regrets of what was not named and processed that are possibly linked to the suicide, and certainly all that had no chance to be felt and spoken of together that more time would have provided. Additionally, all that the therapist retains of his or her patient remains inside the therapist’s memory.

Further, who the therapist was with this particular patient is lost. This leaves open the question of who we are as therapist now. The process of mourning for therapist-survivors asks that we delve into the question of who we are now that our patient has left in this self-destructive way. And who are we, as therapist, the one here to facilitate healing—to engender life, if we have that kind of perspective—in the face of chosen death?

It can be alluring as the therapist-survivor for all these reasons to move far from the confusing thicket of feelings left by patient suicide. The cultural context and identity as therapist can encourage this moving away from honest reflection and processing too. Yet as we know with our patients, moving away from the real experience of the here and now can lead to a dulling of living, a numbing. In our work, moving away from our feelings can feed psychotherapeutic cynicism, burnout, and depression. It can also lead to problematic clinical decision-making and ethical lapses in judgment.

Our willingness to open, receive, and make contact with our patients within the therapeutic work is an offering toward healing—if we choose to risk it. From a relational perspective, certainly, our willingness in these ways is a vital vehicle in the process of transformation found within the therapeutic endeavor. Upon the suicide of a patient, it is tempting to shut down in response to profound relational loss and loss of the therapeutic framework upon which we rely.

Being with Groundlessness

“The dead leave us starving with mouths full of love,” the poet Anne Michaels writes. Jill left me starving and full. Her message to me left me full. The timing of her departure left me starving, questioning. She left me loving her, yes, but also left me with a myriad of other feelings including meaninglessness, impotence, frustration, and raw sadness. I was, because of my life experiences, immediately aware that I needed to take seriously the particular kind of loss I was experiencing—the loss of an incomplete, torn-apart relationship, the loss of who Jill was to me, a loss of clinical voice, and the loss of who I was as a psychotherapist with Jill.

There is ineffability—an unspoken quality— in this kind of traumatic loss. Psychoanalyst Ghislaine Boulanger distinguishes between child and adult onset trauma, noting how core self experience and self-in-relation experiences are undermined. Adult onset trauma shatters illusions of omnipotent control, ever-shaking the normative expectation of personal agency and healthful denial of omnipresent mortality. The suicide of a patient shatters illusions of therapist omnipotence, shaking expectations of potential positive influence upon patients, and calls into question core identity as well as identity-in-relationship to other patients and colleagues.

Western psychology rests within a worldview of personal agency. It is a worldview imbued with Euro-American, individualistic, educated, and moneyed values—all of which are crushed in the face of adult onset trauma. It is the very nature of this kind of traumatic loss that it rocks our assumptive world as therapists: questioning whether our endeavors are life giving, whether our efforts possess meaning and influence; and whether our chosen profession is worthwhile.

There was Todd, a patient-therapist in my practice who came to me after his long-term patient completed suicide. Todd had fifteen years of clinical experience and before that eight as a university professor. He was well versed in suicide prevention and intervention. “After his patient’s death, he refused to ever work with a patient again who even mentioned suicidal feeling states; he would refer them.” His stance is maintained to this day, six years later. His way of coping is not unusual among therapist-patients in my practice or across the profession. Whenever I present a paper on this topic, I hear stories of mental health professionals at all levels responding similarly. So understandably haunted, they desire to avoid any chance of experiencing a suicide loss again; some believe they can no longer objectively assess risk; and others feel traumatized, unable to clinically engage with a patient experiencing suicidal ideation or self-harm.

There are some other common coping approaches among therapist-survivors. They include all the ways we may become vigilant in our practice: taking numerous, even if repetitive, trainings on ethics and suicide prevention; developing a rigid stance in responding to patients expressing suicidal thoughts or intent; and intervening in overly-conservative ways that communicate anxiety to the patient rather than clinical engagement. In her essay for the collection, The Therapist in Mourning: From the Faraway Nearby (2013), Catherine Anderson describes these kinds of responses as part of the working through process with “a desperate need to understand what had happened and a magical wish to protect [oneself] against any future vulnerability.”

Another common response is to avoid examining clinical missed opportunities and errors, to defend against the pain, shame, and perhaps guilt that are simmering. Gina, a patient-clinician of mine, experienced a patient suicide after two sessions. When the patient did not show to the third session, Gina called. Subsequently, the patient’s father contacted Gina. He told her his son killed himself the day after the second session. It was excruciating for Gina to slowly begin to examine her state of mind during the sessions. She came to realize that she was, due to many factors, defending against making genuine a connection with this patient, and was more distant than usual. Her past clinical experience told her that when she has that kind of response, she hesitates exploring avenues that would be productive, and that she overlooks what later, when less defensive, was there all along. That was her missed opportunity. Of course, there is no telling if Gina had been less defended if that would have made a difference—given her a vital piece of clinical information that she could capitalize upon to then help the patient. It was crucially important, however, to Gina’s healing process to bring into consciousness what she already actually knew about herself in her brief work with the patient.

The ground of my being was continually moving beneath me after Jill’s suicide. Because of my life history and my working with it in therapeutic ways, I knew my footing could be regained, but I questioned when that would happen. I returned to writings that reminded me about how vulnerable groundlessness really is and how inevitable it is as well. Pema Chodron, in When Things Fall Apart, writes:

“[T]hings don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It's just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy."

Her perspective, for me, reflects what I believe and practice in my private and professional life, but can easily forget in times of great tumult. It is a kind of perspective that provides me refuge.

I knew from my history that if I refused to directly experience what was present within me I would only harden my heart. Cutting myself off by armoring my heart would negatively impact my relationships with other patients, let alone the relationships in my personal circle and my relationship to life itself.

The practice of mindfulness meditation is one way I engage my direct experience, and it had been a practice of mine for many years before I began my clinical work. I returned to intensive practice after sustaining the many family deaths in quick succession aforementioned; I spent a month on a silent meditation retreat as well. The amount of silence offered was an integral experience for my body, heart, and mind to begin having room to feel through those traumatic losses. With Jill’s death, I returned to steady meditation practice again, in order to create room inside myself for the range of feelings I was experiencing. It sounds, perhaps, so simple, so easy, and yet it is not. Silently meditating twice daily confronted me with every vulnerability, every feeling, body sensation, and thought I possessed. Profound shame, futility, anger, banality, and sorrow as well as heartache and headache were some of the many storms I weathered sitting quietly on my meditation cushion. Yet it was the silence and the generous observing accompaniment to myself that were central in my finding footing again.

Ritual as Scaffolding

James Hillman suggests that in the face of patient suicide the clinician go into the context of the death—not to stay on the surface. His advice speaks to delving into our interior world, and grieving, but also something more. He suggests lending all of our knowledge of our patient to the endeavor as well, exploring as thoroughly as possible nuances of our patient’s suicide.

With Jill, intuitively I knew I needed rituals as a frame in my quest to deeply understand her suicide to the best of my abilities, as well as to mourn her death and all of the losses accompanying it. One ritual that was obvious was the therapy itself. There are the set days and times of sessions; the usual pattern of entering and exiting sessions with some of their inevitable variability; the parameters of the relationship.

Keenly aware of how groundless I felt, I longed for grounding in the ritual of my sessions with Jill. “I could not fathom scheduling another patient in Jill’s session times. I realized what I wanted was to keep my appointment with Jill. So I did just that: I kept my appointments with Jill for one year.” Sometimes I went to a meditation space near my office for the appointment; sometimes I was in a natural setting. Other times, I spent it in my office. Wherever I chose to spend the sessions, I also was with Jill. Sometimes reading a book of poetry that evoked Jill, or intentionally recollecting parts of sessions.

By the second week of appointments with Jill, I began writing during the time. I used poetry as a companion. Sometimes I wrote to Jill, sometimes extemporaneously to the Reader with a capital R. An excerpt follows of one of my writings:

I reviewed notes on Jill I came across; process notes. Notes when Brian spoke with me several weeks ago. There is much that remains unsolved in my heart. And it’s in my heart, especially, that time takes its own rhythm, a time that doesn’t match up with the clocks and the calendars.

It’s sorrow or poignancy, both, being touched by Jill—I’m feeling right now. Knowing I’m not alone, really, in such an experience ultimately—like anyone grieving anything how universal and connected to the everyday human experience this actually is. Paradoxically how alone and singular I feel. Alien among colleagues who have not experienced such a violent loss. A lone mourner.

Jill suffered in body and mind, physical and emotional pain. Her physicality used to be a route to survival as a child and a young adult. Her physicality was already failing her. The grief she felt was so layered and frequently linked to all the losses felt trans-generationally across her family history. And even this doesn’t say all she felt and lived with.

I can and do write circles of theory or case formulation but that is not what I’m desiring here. I feel almost desperate to continue delving into this process with her in this kind of way, unsure of where it is leading.

Strange, I guess, to feel the shock, still, that she is dead. I just know the only way to move with this, through this, to be with it all, is to do what I’m doing. Let it come in words or feelings. Let it come through me, in silence.

Of course, the questions remaining in the aftermath of suicide usually cannot be fully answered, but answering all the questions is not the point of such a process. If there is an aim, it is the recognition that the clinician continues in relationship without her (or his) partner in the dyad. Feeling and thinking alongside that recognition is the heart of the process. Psychologist Robert Gaines would call this the stitching together of continuity our relationship to the dead. Finding a relational home once again. Finding one’s clinical and human voice again.

Other rituals also occurred to me related to mourning, whether a formal memorial or an informal honoring, as well as creating continuity. By the end of the second week of appointments with the spirit of Jill, I realized I needed two additional things: to visit where she died, and to create some kind of memorial. There was no funeral service for Jill; she had no family or close community. Something of our process together needed representation. Something of her treasured symbols shared with me needed representation. And something of our relationship needed representation too.

Brian drew me a virtual map in verbal description as to where she died. Over the next four appointments with the spirit of Jill, I developed a memorial. A colleague accompanied me on the day that I set, and we drove to the place close to where Brian described. We walked the remainder of the way. Although Jill chose a place where she surely would be discovered, it was not an overly exposed public place. When I got there, I wept. I wept not because of her death in that moment but because of the purposefulness of the place. I recognized it, immediately, based on our work together. Based on what Jill shared with me. I could see how Jill, with her particular perspective, felt beauty in this place. The place fit into the story of her life, the story she shared with me. The story we made sense of together. The place symbolized what she would frequently discuss and feel, the existentials of existence, and the evolution of her life.

The ritual included flowers, some writing I read to commemorate Jill, and a prayer combined with poetry I put together to reflect our relationship. My colleague and I sat in silence afterward, listening to the sounds around us. I felt close to Jill in the moment. Through the scaffolding of this ritual, as well as the ritual of appointments with her, I began to understand some meanings in her death, and I regained my voice once again.

Jill genuinely affected me—her life as well as her death. Destruction, and particularly self-destruction, surrounded her in the history of her life yet she developed into a highly deliberate, aesthetically-minded, symbolically-attuned woman who struggled with looming thoughts that dragged her into familiar mire she was accustomed to escaping by vigorously and creatively using her body, no longer available to her. Her suicide was equally aesthetically minded—if you forgive the stretch of the word in this context but rather feel into the contour of its meaning. I noticed this in numerous ways from the evidence she left behind, the chosen place of her death, the timing of her death, to her message left for me.

I was acutely aware in working with Jill of my family standing with me, for they are there, always, in the background of my mind and heart, like a luminous shawl. How the experience of their tragic, violent, and sorrowful deaths created, initially, a nuclear-sized crater within me that since healed—and continues to evolve in healing—with scarred but incredibly strong layers. Layers of capacity and depth for ambiguity, curiosity, and love in the face of enormous challenge, rejection, and destruction. I never revealed to Jill my personal history, yet I felt it was these very experiences and my working with them, through them, that enabled me to meet Jill in the dark and light of her psyche without collapsing. All of these details and their meaning that I came to understand over time enabled me to continue to serve fully in my life in all ways professionally and personally with openness.

Relational Home for One Another

Clinician-survivors come in contact with the real attachment felt for the person who died in the process of mourning. Regardless of theoretical orientation or therapeutic stance, there was (and is) a relationship. The basis of the relationship is connection, care, and likely love. Therapists may have difficulty admitting they love their patients; some secretly do so with shame as if caring were untoward. When working in my practice with therapists mourning a suicide, moving through the shame of caring to the healing and human quality of caring is vital.

Clinician-survivors ask me to be their therapist initially because they find my contact information from the American Association of Suicidology’s website. There, among numerous resources, is a link to resources for clinician-survivors. Clinicians who contact me often gingerly express their desire for support, understandably fearing an amplification of shame they already are carrying. Shame demolishes a person’s sense of self. Shame isolates and evicts us from our relational home.

Some studies have explored the ubiquitousness with which clinician-survivors are met with judgment and shaming from colleagues. It has been found that clinicians who have not experienced a suicide loss professionally or personally are more likely to assume that there must have been something the treating clinician had done wrong. One way to understand this is to consider the nature of trauma. People involved in the traumatic event, either directly or indirectly (hearing of it, etc.), hold parts of the experience and defend against the emotional enormity of it. Blame, shame, grandiosity, omnipotence, and guilt are often convoluted in the mix. Unbearable feelings are projected or disavowed. Most of us “know” this, but when we are in the midst of it ourselves we can forget.

Before I entered my contact information on the clinician-survivor network, I carefully considered this act—a public acknowledgment of an aspect of my history. Before I agreed to write this article, which is drawn from a public presentation I gave to two different professional organizations, I considered how my history in print felt quite different than speaking it. I sensed the risk I felt in both instances. For me the risk is primarily located in relationship to colleagues unfamiliar with suicide loss. My feeling of risk among the professional community is not singular—it is cited repeatedly as a way that therapists feel shame for their grief in relation to patients generally, and most especially the shame felt when a patient completes suicide.

Coming out, so to speak, on the website and in this article are acts of advocacy for other therapists in a direct way, and ultimately also, I believe, advocacy for patients. Coming out in these ways are antidotes to shame as well, although revealing oneself carries with it a chance of being judged or shamed. Hiding when feeling shame, after all, is a protective solution to those risks—albeit risks that are generalized. Two anecdotes may elucidate.

When a psychologist-colleague found out that I publicly acknowledged my identity as a suicide survivor, he questioned me. He wondered if I were exposing something that “should” be hidden. His sense of hiding was initially justified by the importance of neutral stance and limited self-disclosure. With further exploration between us, however, my colleague came to realize that he felt anxious and even dissociated when hearing about my experiences. His shaming reaction toward me was a coping mechanism for his anxieties.

Another colleague responded quite differently to finding out about my public acknowledgment as a suicide survivor. Her response: There but before the grace of God go I. She too felt anxious hearing my experience, but she remained in communion with me. She shared her anxiety and her wishful fantasy that she would never experience this kind of trauma. Through our discussion, we created a relational home for one another.

In therapy, we create, with our patients, a relational home. While this home is focused on the patient’s needs, it is irrevocably the particular home we live in with our patient. That home continues to live inside of the therapist-survivor after the patient dies. In Trauma and Human Existence: Autobiographical, Psychoanalytic, and Philosophical Reflections (2007), Robert Stolorow writes, “The mangling and the darkness can be enduringly borne, not in solitude, but in relational contexts of deep emotional attunement and understanding.” The loss of a patient or a loved one by suicide is unfathomable, though we know it happens. It is nothing short of a cataclysmic trauma, one that is enormous to digest. The impact of it on clinicians has been compared to the traumatic loss of a parent. It is a leveling experience for it takes us out of our protected role as therapist and throws us into the most humble, bare experience of our own humanity.

Brian, the psychiatrist, only learned of my family history after Jill’s death. He wondered, “Perhaps there is some unconscious way Jill knew you could make meaning of and bear her death.” It is curious whatever Jill may have implicitly known of me—but ultimately that is something I will never know. Importantly, it was not lost on me, her therapist, the relevance of the place she chose to die. What it meant to her, what she communicated to me in her final message, and what she communicated in her choice of place. It was not lost on me, her therapist, the layered meanings in the timing of death. The curious exploration of these among other unspoken aspects of our work together was what I gave voice to in my year of kept appointments. A year of rediscovering meaning. A year of regaining clarity, ground, and clinical voice. A year of examining the soul of the process between us, and what lived on within me.

***

Following is a list of readings and resources for clinicians and clinician-survivors who wish to learn more about, and seek support for, the grief of losing a client to suicide.

The clinician-survivor network of the American Association of Suicidiology provides consultation, resources, support, and education to mental health professionals in the aftermath of suicide loss, personally and/or professionally. The website includes nationwide clinicians available as resources, as well as an extensive bibliography.

Anderson, C. (2013). "When what we have to offer isn’t enough" in Malawista, K. and Adelmari, A., Eds. The therapist in mourning: from the faraway nearby. New York: Columbia University.

Boulanger, G. (2002). Wounded by Reality: understanding and treating adult onset trauma. New Jersey: Analytic Press.

Buechler, S. (2000). "Necessary and unnecessary losses: the analyst’s mourning." Contemporary Psychoanalysis 36: 77-90.

Chodron, P. (2000). When things fall apart: heart advice for difficult times. Boston: Shambhala Publications.

DeYoung, P., (2015). Understanding and treating chronic shame: a relational/neurobiological approach. New York: Routledge.

Gaines, R. (1997). "Detachment and continuity: the two tasks of mourning." Contemporary Psychoanalysis 33(4): 549-571.

Hillman, J. (1997). Suicide and the soul. Connecticut: Spring Publications.

Michaels, A. (1997). Memoriam in The Weight of Oranges / Miner’s Pond. Toronto: McClelland & Stewart.

Plakun, E. & Tillman, J. (2005). "Responding to clinicians after loss of a patient to suicide." Retrieved December 2013 from http://www.austenriggs.org.

Stolorow, R. (2011). "Portkeys, eternal recurrence, and the phenomenology of traumatic temporality." International Journal of Psychoanalytic Self Psychology, 6:433-436.

Stolorow, R. (2007). Trauma and human existence: autobiographical, psychoanalytic, and philosophical reflections. New York: Routledge.

Tillman, J. (2006). "When a patient commits suicide: an empirical study of psychoanalytic clinicians." The International Journal of Psychoanalysis, 87(1), 159-177.

 

Francine Shapiro on the Evolution of EMDR Therapy

When a Cup Isn't Just a Cup

Ruth Wetherford: Francine Shapiro, you are the originator of EMDR therapy, the founder and executive director of the EMDR Institute, and author of numerous books, articles, and other interviews about this process. I want to begin by asking you a basic question: What is EMDR therapy?
Francine Shapiro: Eye Movement Desensitization and Reprocessing, or EMDR, is a form of therapy that focuses on memory and the brain. Every different form of therapy has a different model, a different way of conceptualizing cases and different procedures. For instance, in cognitive behavior therapy (CBT), pathology is based on inappropriate beliefs and behaviors. In psychodynamic therapy, it’s intra-psychic conflicts. In EMDR therapy, pathology is based on unprocessed memories that are stored intact—so if someone has some irrational beliefs or negative behavior, that’s not the cause but rather the symptom.

For example, let’s say we’re humiliated or bullied in grade school, and instead of the brain digesting it and making sense of it and letting it go, it actually gets stored in the brain with the emotions and the physical sensations and the beliefs that were there at the time. One of the functions of the information processing system of the brain is to make sense of the world, so if something happens 30 years later as an adult that is similar in any way, it has to link up with the memory networks to be made of sense of. In other words, if I’ve never seen a cup before, I don’t know what it is or what to do with it. The perceptions that we have about something in the present link up with the memory networks, and if it connects with that unprocessed memory, it gets triggered, and the emotions, physical sensations, and beliefs—“I’m terrible, I’m not good enough, I can’t succeed”—get triggered as well.

People may have no idea why they continually feel anxiety in social situations or when they talk to somebody at work, because the situation is linking them to an unprocessed memory, and those feelings are coming up automatically.
People may have no idea why they continually feel anxiety in social situations or when they talk to somebody at work, because the situation is linking them to an unprocessed memory, and those feelings are coming up automatically. We really are at the mercy of our memory networks, and if an experience hasn’t been processed, we’re just buffeted hither and yon by all of these negative emotions and feelings. With EMDR therapy, we identify what those earlier experiences are and we process them. We bring that information processing system back online. And what happens during an EMDR therapy session is that very rapid associations and connections or insights are made, and the emotions, physical sensations, beliefs—all of those shift to a level of learning and resilience, so we simply aren’t triggered that way any longer.
RW: You’re making the point that the mind and body connection cannot be separated. The cognitions, feelings, and other thought activities of our minds are so integrated with our bodies. This is not new, of course, but it does seem to be getting a lot more attention lately. In a recent interview with Bessel van der Kolk on Psychotherapy.net, he describes having done the only NIMH funded study on EMDR, and as of 2014, the results were more positive than any published study of those who developed PTSD in reaction to a traumatic event as adults. He goes on to talk about the impact of trauma on the somatosensory self, that it changes the insula, the self-awareness systems—which is exactly what you’re saying.

But EMDR therapy is also very easily integrated into other kinds of therapies. In fact, I saw that you won the Sigmund Freud award from the City of Vienna.
FS: People who have been trained as psychodynamic therapists say that EMDR lets them use what they know. They use EMDR therapy to help identify the earlier memories that cause maladaptive defenses and intra-psychic conflicts, and it helps people process those memories and experiences. It’s the same with those who practice cognitive behavioral therapy. EMDR therapy is used to process the memories that are causing dysfunctional behavior and irrational cognitions.

It’s a remarkably efficient treatment. There are three studies that have indicated that for single trauma victims there’s an 84 to 100% remission of PTSD within about five hours of treatment.
RW: That’s great.
FS: A study with EMDR therapy in combat veterans found that after only 12 sessions, 78% no longer had PTSD. Of course, the amount of treatment time it takes depends upon the number of memories that have to be processed, but you don’t have to process each and every event because memory is connected. Instead, you choose one that represents a whole group, and then you have a generalization effect. It rapidly shifts.
RW: This is the phase that has so much in common with all approaches to trauma. Learning self-soothing skills is consistent with all mindfulness meditation and stress reduction methods. It gives people a sense of confidence that they’re not going to be lost when they leave the session. It’s remarkable how fast the dysfunctional beliefs can shift from “it was my fault that I was abused” to “I didn’t deserve that.” It doesn’t happen all in one session, but—
FS: Well, it can.

The 8 Stages of EMDR

RW: Perhaps you could tell us a bit more about the stages of EMDR therapy?
FS: EMDR therapy is an eight-phase approach. During the first phase, the clinician takes an appropriate history of the client, finding out what the current problems and symptoms are, how long they’ve been going on, what the systems issues and the relationship issues are, etc. Then we begin to identify what earlier memories are causing many of these problems.

If you’re coming in with relationship issues like, “I always overreact to criticism,” we try to see what’s causing the overreaction. What earlier memories might there be that are pushing it? Does the sound of your husband’s voice remind you of your father’s voice before he hit you? We have specific techniques to identify these problematic memories.

The second phase involves preparation. We teach a variety of self-control techniques so that people learn to shift from negative feelings to positive ones.
You don’t have to process each and every event because memory is connected. Instead, you choose one that represents a whole group, and then you have a generalization effect.
These techniques can be very useful for everyone, but ultimately we’re trying to lessen the need for them. That is, if I’m always buffeted by these unprocessed memories, and I’m constantly needing to shift out of negative feelings into positive feelings, what I really want to do is process these memories so I’m not getting triggered by them any longer. A preparation technique will allow the person to feel in control so that when we start the processing, if a disturbance comes up, and they feel like they want to stop, we just stop. We use the technique to shift back into feeling good, and then when they’re ready, we go back and continue the processing.

The amount of preparation depends on how debilitated the client is to be begin with. Some people have never had good experiences—they had a terrible childhood, were beaten, ignored, neglected; they didn’t have anyone in their life that they could turn to or count on. These folks can be extremely debilitated emotionally, so we may need to spend more time preparing them. For most people it doesn’t take very long at all, maybe a session or so.
RW: That’s true, it can.
FS: For an individual trauma, it might take two or three sessions. And you simply want the client to be in the best possible state, not only during the processing but also in between sessions.
RW: So they can shift into and out of the self-paced imagery?
FS: Exactly. It’s not homework, as you would get with cognitive behavioral therapies for trauma. But let’s say it’s going to take three sessions to finish an individual trauma—you can do that morning and afternoon, or you can do it three consecutive days. In other words, the treatment can be done in days or weeks, rather than months or years.
The treatment can be done in days or weeks, rather than months or years.
And because all of the therapy is done with the clinician, they don’t have to go out and confront negative feelings and experiences on their own in order to try to make things change.
RW: So the history, identifying the memories, and preparation are the first phases. What happens next?
FS: Then we move into processing. We identify a memory that has been causing the symptoms and then we identify different aspects of it—the image, the negative thoughts associated with it, where they’re feeling it in their body, what the emotion is, etc. And once we access the memory in a certain way, we start the processing, which involves stimulating the brain’s own information processing system that allows the different connections to be made.

One of the procedures in the processing involves a form of dual attention stimulation—meaning the client follows the clinician’s fingers with their eyes as they move rapidly back or forth, or it can be tones or taps. It seems to stimulate the brain’s information processing system, and the client then has different, rapidly moving associations. They may have new thoughts about the memory, or other memories may emerge, or new insights can come up. It allows the brain to do the digesting by making all of the appropriate links that it hadn’t been able to make before.

Eye Movement

RW: After the preparation phase, I usually introduce the eye movement component. First I do the protocol, the target image. Many people don’t want it to be a memory—they’re coming in with some anxiety that they’re dealing with right now, and they don’t necessarily make the connection to memories. So I might start with a target image like, “when my husband’s face gets angry and frowny, I go into a panic.” Then I write down the negative self-beliefs after and rate their anxiety on a scale of intensity from zero to ten. I see where that anxiety is felt in the body. While they’re doing this protocol, they’re identifying what they’re feeling, what their beliefs are—“I’m a bad person. I’ll be a failure. I’ll be humiliated. I’ll be punished.”

And then I draw a line across the tablet and say, “What beliefs would you like to have?” This is straight out of your protocol. It’s often surprising to people, but once they get it, they can really elaborate. “I’d like to feel confident that I can handle this moment.” “I’d like to feel certain that I can stay calm and reasonable”—that sort of thing.

It’s a powerful moment when I move my ottoman over in front of the person and hold my hand up after customizing it for them. The rapidity of the motion back and forth, how wide the sweep is—these are custom tailored for each person, and then they go into that image—they’re seeing the husband’s face, angry and escalating, and they can actually feel their beliefs: “I’m getting ready to be demolished.” It is phenomenal. It’s very different.
FS:
It’s been demonstrated in about 16 randomized controlled trials now that the eye movement also rapidly causes the vividness to shift and emotion to decrease.
It’s been demonstrated in about 16 randomized controlled trials now that the eye movement also rapidly causes the vividness to shift and emotion to decrease. So they may start out with a disturbance, but it very rapidly decreases and shifts to that new understanding—from “that’s how my father used to look at me” to “that was wrong of him” to “It wasn’t my fault” to “it was his fault.” It’s getting liberated from how they felt as a child so that they can see the present more clearly.
RW: It’s so true.
FS: Of course there might be a need for couples counseling, but in many instances, these overreactions are caused by early childhood events stored as unprocessed memories.
RW: We all know that when our sympathetic nervous system gets aroused, clear thinking goes out the window.
FS: Right, exactly.
RW: The point here is that when you’re doing the eye movement part of it, after having prepared the self-soothing and the cognitive component of the beliefs and the desired beliefs, the shift is so remarkable.

The person may have four or five associations: “I see my parents fighting. I see myself hiding behind the door. I feel terrified. I feel like I should stop their fighting. It’s my fault.” The therapist picks out one of those, which I think is an area of the art of the therapist, knowing which one to pick that will lead to the next set of associations. But when it’s very, very accepting, no judgment, no anxiety on the part of the therapist, that calmness is often rewarded. After the next set of repetitions, the person says, “I do not have to rescue. It’s not my fault.” They’ll say it. You never have to say it. They get to it themselves.
FS: Very often the therapist can stay completely out of the way and foster and support the client nonverbally. We’re conveying acceptance because we do accept it. We are conveying unconditional regard because that’s part of the therapy process, so the clients don’t have to be afraid of their own emotions. They don’t have to be afraid, and they can reveal as much as they want.

With other forms of therapy, you have to describe the memories in detail. With EMDR therapy, that’s not necessary. The client says as much or as little as they want to.
With other forms of therapy, you have to describe the memories in detail. With EMDR therapy, that’s not necessary. The client says as much or as little as they want to. As a matter of fact, in many instances, you can do it content free, and the client just gives you enough information to know that it’s changed. So rape victims, molestation victims, who may feel so much shame and guilt that they don’t want to talk about it initially—they don’t have to. You don’t have to force the client to do or say anything that they don’t want to.
RW: Your point about the calm, accepting, unconditional regard is a component you’ve emphasized in the trainings, but I don’t know that it comes across to some people who think EMDR is technique-y.
FS: There are specific procedures about when you continue the associations and when you return to the target, but the beauty of it is to allow that internal, intrinsic healing mechanism to take over and to make the appropriate associations and not take a clinical stance that you know more than the client, that you are the one that has to give the answers. In most instances, the connections are all there for the client and when they’re not, we have specific EMDR therapy procedures to kick start it again. It’s not about clinicians imposing themselves on the client, but rather allowing the appropriate healing to take place.
RW: So what is the next stage?
FS: Assessment is the third phase, where you’re identifying the memory and the different components of it, and then you move into a phase that we call Desensitization, which is allowing the insights and connections to be made until they’re a zero on the Subjective Units of Disturbance Scale (SUDS). It could start off at an eight or nine, but it’s down to a zero.

Then we move to a phase we call Installation, which has to do with concentrating on that desired positive belief the client wants and seeing if we can strengthen it so that it feels completely true to the client.

Then we move to the Body Scan phase, where we have the person think of that memory, think of the positive belief, and scan to see if there’s any disturbance in the body; and if there is, we process it.
We process the memory, evaluate, reevaluate, reassess, and see what else needs to be done until we've basically addressed all of the issues, and the client is feeling empowered.
For instance, a molestation victim who is feeling good and powerful scans her body and notices that there is a strange sensation in her back, and we focus on that. It turns out that’s where she was held down when she was raped. So we process that.

At the end of the session, the Closure phase brings the clients back to the full state of equilibrium. We remind them of their self-control techniques and the in-between-session processing they can continue to do. We also suggest that if a disturbance comes up, to just write down what happened very briefly—“I walked into X situation and I got triggered”—so that they can be targets for next time.

Then the eighth phase at the next session is Reevaluation, where we bring back the memory and see how it feels. See if there’s anything else that needs to be addressed. For instance, I worked with a girl who had been molested by her grandfather, and by the end of the session she was saying, “He was really weak. I ran into the bathroom and he tried to get in, and I just kept telling him to go away, and he went away.”

At the next session when I saw her, she felt fine. She didn’t feel dirty. She didn’t feel shameful. She didn’t feel powerless. She had a good grip on it. But in asking her what else might be coming up, she said, “Well, I was thinking of my grandmother, that she didn’t believe me when I told her I was molested.” So that’s the new target. We identify what else needs to be processed, and that’s how the therapy continues.

We process the memory, evaluate, reevaluate, reassess, and see what else needs to be done until we've basically addressed all of the issues, and the client is feeling empowered. It’s not only that the major symptoms are gone, but they feel like a positive, healthy, resourceful human being and are now able to establish and maintain positive relationships in their life.

Death by a Thousand Cuts

RW: In my own practice, the vast majority of my clients don’t come in to do EMDR therapy. They are coming in with other problems in living—anxiety, depression, relationship problems, etc.—and then I introduce it to them. It’s looking at the current target image, the current source of the anxiety, that then leads to association with past memories of actual trauma. But another source of trauma is the reaction of the social environment to the trauma. Like in the example you just gave, the woman’s grandmother, in her disbelief, was another source of trauma in addition to the molestation.

This is a common consideration in most trauma therapies—that it’s not just the trauma, it’s everybody’s reaction to the trauma that makes it worse, so I think that’s such an important component. It’s all interconnected.
FS: PTSD has commonly been thought of as a response to major traumas—earthquakes, rape, molestation, combat, etc. But the research now is very clear that general life experiences can cause even more PTSD symptoms than major trauma. Childhood experiences, humiliations, divorce, conflicts in the home—these things can be a source of chronic PTSD.
RW: Death by a thousand cuts. All the micro traumas that get accumulated.
FS: It doesn’t even need to be accumulated. You can have individual childhood events, like an individual being pushed away, being left behind, being humiliated in grade school, having people laughing at them. Any of these things can get stored in the brain with terrible feelings and thoughts of, “I’m not good enough. I can’t succeed. I’m not powerful.”
PTSD has commonly been thought of as a response to major traumas—earthquakes, rape, molestation, combat, etc. But the research now is very clear that general life experiences can cause even more PTSD symptoms than major trauma.
They get locked in and run the person for the next 30 years. So it’s important for people to have some compassion for themselves and not just dismiss their anxiety or their depression or their insecurity just because they don’t know where it came from. Many of us simply don’t remember because it’s a long past childhood event, and we don’t recognize that the problems we’re having in relationships or at work are influenced by these earlier events.

Also there’s a lot of research now showing the negative impact parents can have on the lifelong health of their children. There was a study done at Kaiser Permanente that clearly showed that adverse childhood experiences were the leading causes not only of mental health problems in adults, but of physical health problems as well—cancer, lung problems, etc. So I think we need to be more aware of how these experiences are being stored in our brain and constantly pummeling us with negative feelings that impact not only our minds but our bodies. These problems are transferred easily to children because research has clearly shown that mothers who have posttraumatic stress disorder are more likely to mistreat their children—not purposely, but they simply react more harshly.

Research has also shown that highly disturbing experiences within two years before childbirth can prevent the mom from bonding with her child, which has extremely negative effects. Maternal depression is one of those factors that Kaiser Permanente identified as causing these lifelong negative effects for adults because depressed mothers may not be able to bond with their children. It’s not only major traumas that are the problem—all kinds of experiences can have long-lasting detrimental effect on individuals.
RW: That is certainly corroborated by all the new imagery and radiology advances that have been made in which various autonomic processes—not only the body but the brain—are shown to react during negative interactions with people. There is this whole cascade of activity—everything from cortisol to high blood pressure to galvanic skin response to a change of blood flow to the frontal cortex and the amygdala. We all have this sympathetic arousal over traumatic interactions.

What is the latest research on how neurological reprocessing of trauma actually works?
FS:
EMDR processing seems to link in to the same processes that occur during rapid eye movement sleep.
EMDR processing seems to link in to the same processes that occur during rapid eye movement sleep. REM sleep processes the events of the day in order to make sense of them, and it moves them from episodic memory to semantic memory, where you can remember what happened, but you no longer have those emotions and physical sensations locked into memory. Until that happens it’s stored in episodic memory, which seems to get triggered with PTSD.

People who have posttraumatic stress disorder often wake up in the middle of a nightmare. That’s the brain attempting to process the event, but it’s too disturbing, so they wake up in the middle of it. What EMDR therapy appears to do is to take the brain further than it’s able to go in its natural state. The eye movements tax working memory and stimulate REM processes, which allows the rapid shift in imagery, emotion, cognition and sensation.
RW: A possible physiological analogy would be how insulin produced by carbohydrates causes the pores of fat cells to open and take in fat, and it’s only when we have proteins that the cells open and the fat comes back out so that we can lose weight. Similarly, there’s some unlocking of synapses where the memories of the trauma are stored. The anxiety has to go down, but there’s something about the bilateral movement that not only allows the memory to be stored, but also then connect with current, more rational, more safe feelings that give people a sense of identity and agency. It connects together and desensitizes the memory, which loses its power, while the current situation gains power. The current sense of self gains power.
FS: What we say is that it arrives at an adaptive resolution. What’s useful from the event is incorporated and the learning takes place. What’s useless is let go, so the negative emotions and physical sensations and beliefs are basically all gone. But it’s different than the concept of “extinction” employed in cognitive behavioral therapies, where the person is asked to describe the memory in detail as if they’re reliving it, making sure they don’t think of anything else but just stay there with that memory. It allows desensitization to occur, but the original memory that’s being targeted doesn’t change; rather a new one is created. The theory is that the person has been disturbed because of avoidance behavior—they haven’t allowed themselves to stay with it because they believe they’ll go crazy, they’ll die. And as their therapist causes them to tell the story over and over again, they realize they won’t die, and that creates a new memory that competes with the old one—but the old one is still there.

With EMDR therapy, there’s a short exposure where you ask the person to think about it, have the eye movement for about 30 seconds or so, and then you specifically elicit associations. They often move right to another memory.
It appears that the original memory is transformed as these connections are made, and the new learning and the new insight is made, and then it’s stored in this changed form.
It appears that the original memory is transformed as these connections are made, and the new learning and the new insight is made, and then it’s stored in this changed form. They no longer feel terrible about themselves. The transformed memory is stored and the original form it began with no longer exists. We call that “reconsolidation,” not extinction. So with exposure therapy, the original memory is still there, but in EMDR therapy the original memory is no longer there in its old form. This may be responsible for certain differences that we’ve seen in treatment.

For instance, there was a study comparing exposure therapy and EMDR therapy for those who had complicated mourning—intense grief that wasn’t changing. When somebody dies suddenly, very often the person who is bereaved continues to have negative imagery, negative thoughts of the person dying, seeing them in pain, guilt about what they should’ve done, could’ve done, etc. When individuals were treated with EMDR therapy and with exposure therapy, the EMDR was more rapid with better outcomes. Interestingly, there was twice the positive recall of the deceased than after treatment with exposure therapy. The fact that the original memory was still intact might be the reason for that.

Another example is the EMDR therapy treatment of phantom limb pain, where accident victims and combat veterans, who lost limbs in a traumatic experience continue to feel pain in a limb that’s no longer there. What we’ve found from the articles that have been published so far is that by identifying the trauma in which the leg was damaged, for instance, and processing it with EMDR, at the end of the treatment, 80% of people either no longer had any pain or it was substantially reduced.
No other form of therapy has reported elimination of chronic phantom limb pain.
No other form of therapy has reported elimination of chronic phantom limb pain.

One last example. In a treatment of psychotic people who had suffered trauma, when treated with EMDR therapy that targeted the trauma, not only were the PTSD symptoms eliminated, but a majority of those who had started out with auditory hallucinations reported that they were completely gone at the end of treatment, which was only about six sessions. That had never been reported with CBT. So there’s a lot more to explore over the next decade or so.

Neurons That Fire Together…

RW: Particularly as we learn more about specifics of the neurophysiological underpinnings of each mind function, like the functions you were talking about just now—extinction and consolidation. This reminds me of the work of Norman Doidge, the Columbia psychiatrist and psychoanalyst who wrote the book about neuroplasticity, The Brain That Changes Itself. He believes that EMDR therapy is one of the greatest breakthroughs in psychology in his lifetime. He would say that there’s probably a neuroplastic underpinning to each one of these very dramatic changes. He talks about how when we are really listening to something, the auditory cortex will make acetylcholine. And when we have a sensation of pleasure or decreased anxiety, there’s a little bit of dopamine secreted, and it’s that combination of acetylcholine and dopamine that creates the brain’s dendritic growth factor, which causes the dendrites to grow a few microns per hour.

Over time these dendrites find each other, which is why a dog will salivate at the sound of a bell once he learns that he’ll be fed after the bell rings. The auditory cortex has absolutely nothing to do with saliva, but the bell creates salivation because those dendrites have found each other. In other words, neurons that fire together, wire together. During EMDR therapy, there must be a lot of firing going on—self-soothing and the reduction of anxiety is getting wired together with the old memories and the new sensations of agency and safety and new cognitions. They somehow get wired together, and that really does replace the old wiring. I believe at some point we’ll be able to confirm this on the molecular level.
FS: I think ultimately that’s where the field is going, but the field of neurophysiology is still in its infancy, so as of yet no one has ever seen a memory network. But there are more than a dozen studies showing how the brain functions both before and after EMDR therapy, and you can see many differences including growth of the hippocampus as well as changes in cortical and limbic activation after EMDR therapy. Why and how that happens will probably take another decade or so to discover, since imaging will need to become much more sensitive.
RW: I just read, I think in Wired magazine, that the new MRI machines can measure 10,000 times greater detail than the current ones, so they can actually see the electrochemical impulse go down the neurons. Isn’t that wild?
FS: Yes. We have a very exciting decade to look forward to.
RW: What about critics who believe that the research is weak because the dependent variables are all self-report? It makes me think about how innovations are accepted in any field, but particularly scientific fields. There are the early adopters, who are just a few, then the middle adopters as more people hear about it, and then there’s a tipping point where everybody jumps on and incorporates the new learning or the new innovation. It seems to me like you’ve been working on this now for 25-plus years. Where do you think we are in that curve of adoption?
FS: I think we’re in the latter stage now. Those critics you’re talking about were responding to research from 15 years ago. At this point, there are more than 25 randomized controlled trials that have demonstrated the positive effects of eye movements, and a recent meta-analysis has shown there’s a significant effect. In fact, one of EMDR’s original vehement critics has completely turned around and stated that it’s clear that the eye movements have been demonstrated to be effective. Critics who make derogatory statements are very much out of date.

The same is true about the research on EMDR’s effectiveness. There are now more than two dozen randomized controlled trials that have demonstrated the positive effects of EMDR therapy with all of the bells and whistles of good research, including standardized measures, interviews, etc. The World Health Organization (WHO) has even stated that trauma focused cognitive behavior therapy and EMDR therapy are the only psychotherapies recommended for the treatment of PTSD across the lifespan. That is for children, adolescents, and adults.

The Trauma of Everyday Life

RW: I want to return to this idea that is so prevalent in our society that if you didn’t have any major traumas, then you should be all right. In fact, that’s not the case at all, as you pointed out. There are so many life events that become traumatic based on cultural influences. There are so many traumatic and worsening aspects of our culture—the increase in poverty and unemployment as wealth is sequestered in smaller and smaller groups; the emphasis on extroversion and positive feelings over fear, anger and grief; the pathologizing of normal problems in living. All of these things are enormously traumatizing, but we don’t think of it as something that our culture needs to look at.
FS: That’s one of the reasons I wrote the self-help book, Getting Past Your Past—to bring attention to the many things that can be causing our negative reactions and symptoms in the present and explain what to do about it. There are so many events in life and so many things about our relationships that can cause anxiety, depression, insecurity and PTSD. It is explainable and it’s treatable.

We have a nonprofit organization that came into being after the Oklahoma City bombing in 1995. We got a call from a FBI agent, who said, “Can you please do something because the mental health professionals are dropping like flies.” There were no empirically validated treatments for trauma back then. We sent out clinicians to do free treatment for the frontline providers and victims, and the program evaluation showed that it had the same positive effects—about an 85% success rate within three sessions—as a randomized controlled study that was published that year. Since that time our Trauma Recovery/EMDR Humanitarian Assistance Programs, has been providing free treatment for victims of natural and manmade disasters throughout the world and low cost programs for inner city areas in the U.S.
RW: How many people do you have volunteering or doing low cost treatment?
FS: There are hundreds. We have responded to all the major disasters in the US such as Katrina, Sandy, the Boston Marathon Bombing and Newtown shootings. Trauma Recovery Networks have been established in about 30 cities throughout the country. And we’ve also sent teams out after the tsunamis and earthquakes around the world. EMDR Asia came into being a couple of years ago, so now they’re able to do the humanitarian work on the continent themselves.

But there are so many more that need help. People who have been hurt can hurt others. Child molesters, for instance, are often viewed as intractable. Many people don’t want to have anything to do with them. We basically keep them ostracized from society.
RW: Further traumatizing.
FS: But a director of a program incorporated six sessions of EMDR therapy for those molesters who seemed the most incorrigible. They themselves had been molested in childhood—which is often the case with those who molest children—and when their own molest was targeted and processed, they came in contact with how they felt at the time.
We can take people that seem intractable and transform them into positive human beings so they’re no longer hurting others.
They recognized that they hadn’t wanted it and empathy emerged for their own victims. They no longer felt sexually attracted to children. It was measured by something called a penile plethysmograph, which measured their arousal, and 90% no longer exhibited deviant arousal towards children. So we’re attempting to conduct more research in this area.

The bottom line is that we’re looking at the potential that no one needs to be left behind. We can take people that seem intractable and transform them into positive human beings so they’re no longer hurting others. We want to make sure that we’re able to get the treatment to all who need it, so that we stop the pain for future generations.
RW: For any clinicians who are reading this and are interested in getting EMDR training, what’s the best way for them to do so?
FS: It’s extremely important that clinicians who are interested in being trained go to a program certified by the EMDR International Association in the U.S or the EMDR Europe Association in Europe. There are people out there offering programs that are not up to snuff. Certified trainings are six days plus consultation. There are international standards that have been developed to make sure that clinicians know what they’re doing before they treat any clients. Non-profit agencies can arrange for low cost trainings from the Trauma Recovery/EMDR Humanitarian Assistance Programs.
RW: Any final comment you’d like to make before we sign off?
FS: I’m hoping that interviews such as this will really allow people to get a better understanding of EMDR therapy and its potential for healing. The unimaginable amount of suffering that’s going on out there does not have to continue. People can truly heal in a comparatively short period of time and move to a state of happiness, strength and resilience, with healthy relationships.
RW: Thank you so much, Francine, for a very good interview.
FS: Thank you.

Complex PTSD: From Surviving to Thriving

Editor’s Note: Following is an adapted excerpt from Pete Walker’s latest book, Complex PTSD: From Surviving to Thriving—A Guide and Map for Recovering from Childhood Trauma. For more information about treating Complex PTSD (CPTSD) and managing emotional flashbacks, read a previously published article by Pete Walker here

Attachment Disorder and Complex PTSD

Many traumatologists see attachment disorder as one of the key symptoms of Complex PTSD. In the psychoeducational phases of working with traumatized clients, I typically describe attachment disorder as the result of growing up with primary caretakers who were regularly experienced as dangerous. They were dangerous by contemptuous voice or heavy hand, or more insidiously, dangerous by remoteness and indifference.

Recurring abuse and neglect habituates children to living in fear and sympathetic nervous system arousal. It makes them easily triggerable into the abandonment mélange of overwhelming fear and shame that tangles up with the depressed feelings of being abandoned.

A child, with parents who are unable or unwilling to provide safe enough attachment, has no one to whom she can bring her whole developing self. No one is there for reflection, validation and guidance. No one is safe enough to go to for comfort or help in times of trouble. There is no one to cry to, to protest unfairness to, and to seek compassion from for hurts, mistakes, accidents, and betrayals. No one is safe enough to shine with, to do “show and tell” with, and to be reflected as a subject of pride. There is no one to even practice the all-important intimacy-building skills of conversation.

In the paraphrased words of more than one of my clients: “Talking to Mom was like giving ammunition to the enemy. Anything I said could and would be used against me. No wonder, people always tell me that I don’t seem to have much to say for myself.”

Those with CPTSD-spawned attachment disorders never learn the communication skills that engender closeness and a sense of belonging. When it comes to relating, they are often plagued by debilitating social anxiety—and social phobia when they are at the severe end of the continuum of CPTSD.

Many of the clients who come through my door have never had a safe enough relationship. Repetition compulsion drives them to unconsciously seek out relationships in adulthood that traumatically reenact the abusive and/or abandoning dynamics of their childhood caretakers. For many such clients, we are their first legitimate shot at a safe and nurturing relationship. If we are not skilled enough to create the degree of safety they need to begin the long journey towards developing good enough trust, we may be their last.

Emotional flashback management, therefore, is empowered when it is taught in the context of a safe relationship. Clients need to feel safe enough with their therapist to describe their humiliation and overwhelm. At the same time, the therapist needs to be nurturing enough to provide the empathy and calm support that was missing in the client’s early experience.

Just as importantly, the therapist needs to be able to tolerate and work therapeutically with the sudden evaporation of trust that is so characteristic of CPTSD. Trauma survivors do not have a volitional “on” switch for trust, even though their “off” switch is frequently automatically triggered during flashbacks. In therapy, the therapist must be able to work on reassurance and trust restoral over and over again. I have heard too many disappointing client stories about past therapists who got angry at them because they would not simply choose to trust them.

As the importance of this understanding ripens in me, I increasingly embrace an intersubjective or relational approach. That means that I believe that the quality of the clients’ relationship with me can provide a corrective emotional experience that saves them from being doomed to a lifetime of superficial connection, or worse, social isolation and alienation.

Moreover, I notice that without the development of a modicum of trust with me, my CPTSD clients are seriously delimited in their receptivity to my guidance, as well as to the ameliorative effects of my empathy. In this regard then, I will describe four key qualities of relating that I believe are essential to the development of trust, and the subsequent relational healing that can come out of it. These are empathy, authentic vulnerability, dialogicality and collaborative relationship repair.

1. Empathy

I used to assume that the merits of empathy were a given, but I have sadly heard too many stories of empathy-impoverished therapy. In this regard, I will simply say here that if we are hard and unsympathetic with our clients, we trigger the same sense of danger and abandonment in them that they experienced with their parents.

In terms of a definition, I especially like Kohut’s statement that: “Empathy involves immersing yourself in another’s psychological state by feeling yourself into the other’s experience.”

When I delve deeply enough into a client’s experience, no matter how initially perplexing or intemperate it may at first seem, I inevitably find psychological sense in it, especially when I recognize its flashback components. In fact, I can honestly say that I have never met a feeling or behavior that did not make sense when viewed through the lenses of transference and traumatology.

Empathy, of course, deepens via careful listening and full elicitation of the client’s experience, along with the time-honored techniques of mirroring and paraphrasing which show the client the degree to which we get him.

Noticing my subjective free associations often enhances my empathic attunement and ability to reflect back to the client in an emotionally accurate and validating way. When appropriate, I sometimes share my autobiographical free associations with the client when they are emotionally analogous. I do this to let her know that I really empathize with what she is sharing.

Following is an example. My client tells me with great embarrassment that she stayed home all weekend because she had a pimple on her nose. She is ashamed of the pimple and of her “vanity’’ about it. She moans: “How could I be so stupid to let such a little thing bother me?” I suddenly remember cancelling a date once when I had a cold sore. At the time, I also got lost in a toxic shame attack. I share this with her, minus present day shame about it. She tears up and then laughs, relieved as her shame melts away. Months later, she tells me that her trust in me mushroomed at that moment. Guidelines for being judicious about this kind of self-disclosure will be discussed below.

Of the many benefits of empathy, the greatest is perhaps that it models and teaches self-empathy, better known as self-acceptance. To the degree that we attune to and welcome all of the client’s experience, to that same degree can the client learn to welcome it in her- or himself.

2. Authentic Vulnerability

Authentic vulnerability is a second quality of intimate relating which often begins with emotionally reverberating with the client. I have found that emotional reflection of the client’s feelings is irreplaceable in fostering the development of trust and real relational intimacy.

Emotional reflection requires the therapist to be emotionally vulnerable himself and reveal that he too feels mad, sad, bad and scared sometimes. Modeling vulnerability, as with empathy, demonstrates to the client the value of being vulnerable and encourages her to risk wading into her own vulnerability.

I came to value therapeutic vulnerability the hard way via its absence in my own therapy with a therapist who was of the old, “blank screen” school. She was distant, laconic and over-withholding in her commitment to the psychoanalytic principle of “optimal frustration.” Therapy with her was actually counter-therapeutic and shame-exacerbating for me as we reenacted a defective child/perfect parent dynamic.

Therapeutic Emotional Disclosure
Thankfully, I eventually realized that I had unresolved attachment issues, and sought out a relational therapist who valued the use of her own vulnerable and emotionally authentic self as a tool in therapy. Her tempered and timely emotional self-disclosures helped me to deconstruct the veneer of invincibility I had built as a child to hide my pain. Here are some examples that were especially helpful. “God, the holidays can be awful.” “I get scared when I teach a class too.” “I’m so sorry. I just missed what you said. I got a little distracted by my anxiety about my dental appointment this afternoon.” “I feel sad that your mother was so mean to you.” “It makes me angry that you were so bullied by your parents.”

“My therapist’s modeling that anger, sadness, fear, and depression were emotions that could be healthily expressed helped me to renounce the pain-repressing, emotional perfectionism in which I was mired.” With her, I learned to stop burying my feelings in the hope of being loved. I renounced my just-get-over-it philosophy and embraced vulnerability as a way of finally getting close to people.

I needed this kind of modeling, as so many of my clients have, to begin to emerge from my fear of being attacked, shamed or abandoned for feeling bad and having dysphoric feelings. In order to let go of my Sisyphean salvation fantasy of achieving constant happiness, I needed to experience that all the less than shiny bits of me were acceptable to another human being. Seeing that she was comfortable with and accepting of her own unhappy feelings eventually convinced me that she really was not disgusted by mine.

The therapist’s judicious use of emotional self-disclosure helps the client move out of the slippery, shame-lined pit of emotional perfectionism. Here are some self-revealing things that I say to encourage my clients to be more emotionally self-accepting. “I feel really sad about what happened to you.” “I feel really angry that you got stuck with such a god-awful family.” “When I’m temporarily confused and don’t know what to say or do, I…” “When I’m having a shame attack, I…” “When something triggers me into fear, I…” “When my inner critic is overreacting, I remind myself of the Winnicottian concept that I only have to be a ‘good enough person.’”

Here are two examples of emotional self-disclosure that are fundamental tools of my therapeutic work. I repeatedly express my genuine indignation that the survivor was taught to hate himself. Over time, this often awakens the survivor’s instinct to also feel incensed about this travesty. This then empowers him to begin standing up to the inner critic. This in turn aids him to emotionally invest in the multidimensional work of building healthy self-advocacy.

Furthermore, I also repeatedly respond with empathy and compassion to the survivor’s suffering. With time, this typically helps to awaken the recoveree’s capacity for self-empathy. She then gradually learns to comfort herself when she is in a flashback or otherwise painful life situation. Less and less often does she surrender to an inner torture of self-hate, self-disappointment, and self-abandonment.

My most consistent feedback from past clients is that responses like these—especially ones that normalize fear and depression—helped them immeasurably to deconstruct their perfectionism, and open up to self-compassion and self-acceptance.

Guidelines for Self-Disclosure
What guidelines, then, can we use to insure that our self-disclosure is judicious and therapeutic? I believe the following five principles help me to disclose therapeutically and steer clear of unconsciously sharing for my own narcissistic gratification.

First, I use self-disclosure sparingly.

Second, my disclosures are offered primarily to promote a matrix of safety and trust in the relationship. In this vein my vulnerability is offered to normalize and de-shame the inexorable, existential imperfection of the human condition, e.g., we all make mistakes, suffer painful feelings, experience confusion, etc.

Third, I do not share vulnerabilities that are currently raw and unintegrated.

Fourth, I never disclose in order to work through my own “stuff,” or to meet my own narcissistic need for verbal ventilation or personal edification.

Fifth, while I may share my appreciation or be touched by a client’s attempt or offer to focus on or soothe my vulnerabilities, I never accept the offer. I gently thank them for their concern, remind them that our work is client-centered, and let them know that I have an outside support network.

Emotional Self-disclosure and Sharing Parallel Trauma History
Since many of my clients have sought my services after reading my somewhat autobiographical book on recovery from the dysfunctional family, self-disclosure about my past trauma is sometimes a moot point. This condition has at the same time helped me realize how powerful this kind of disclosure can be in healing shame and cultivating hope.

Over and over, clients have told me that my vulnerable and pragmatic stories of working through my parents’ traumatizing abuse and neglect gives them the courage to engage the long difficult journey of recovering. But whether or not someone has read my book, I will—with appropriate clients—judiciously and sparingly share my own experiences of dealing with an issue they have currently brought up. I do this both to psychoeducate them and to model ways that they might address their own analogous concerns.

One common example sounds like this: “I hate flashbacks too. Even though I get them much less than when I started this work, falling back into that old fear and shame is so awful.”

I also sometimes say: “I really reverberate with your feelings of hopelessness and powerlessness around the inner critic. In the early stages of this work, I often felt overwhelmingly frustrated. It seemed that trying to shrink it actually made it worse. But now after ten thousand repetitions of thought-stopping and thought-correction, my critic is a mere shadow of its former self.”

A final example concerns a purely emotional self-disclosure. When a client is verbally ventilating about a sorrowful experience, I sometimes allow my tears to brim up in my eyes in authentic commiseration with their pain. The first time my most helpful therapist did this with me, I experienced a quantum leap in my trust of her.

3. Dialogicality

Dialogicality occurs when two conversing people move fluidly and interchangeably between speaking (an aspect of healthy narcissism) and listening (an aspect of healthy codependence). Such reciprocal interactions prevent either person from polarizing to a dysfunctional narcissistic or codependent type of relating.

Dialogicality energizes both participants in a conversation. Dialogical relating stands in contrast to the monological energy-theft that characterizes interactions whereby a narcissist pathologically exploits a codependent’s listening defense. Numerous people have reverberated with my observation that listening to a narcissist monologue feels as if it is draining them of energy.

I have become so mindful of this dynamic that, in a new social situation, a sudden sense of tiredness often warns me that I am talking with a narcissist. How different than the elevation I sense in myself and my fellow conversant in a truly reciprocal exchange. Again, I wonder if there are mirror neurons involved in this.

I was appalled the other day while perusing a home shopping catalog to see a set of coffee cups for sale that bore the monikers “Designated Talker” and “Designated Listener.” My wife and I pondered it for a few minutes, and hypothesized that it had to be a narcissist who designed those mugs. We imagined we could see the narcissists who order them presenting them to their favorite sounding boards as Christmas presents.

In therapy, dialogicality develops out of a teamwork approach—a mutual brainstorming about the client’s issues and concerns. Such an approach cultivates full exploration of ambivalences, conflicts and other life difficulties.

Dialogicality is enhanced when the therapist offers feedback from a take-it-or-leave-it stance. Dialogicality also implies respectful mutuality. It stands in stark contrast to the blank screen neutrality and abstinence of traditional psychoanalytic therapy, which all too often reenacts the verbal and emotional neglect of childhood. I believe abstinence commonly flashes the client back into feelings of abandonment, which triggers them to retreat into “safe” superficial disclosure, ever-growing muteness and/or early flight from therapy.

Meeting Healthy Narcissistic Needs
All this being said, extensive dialogicality is often inappropriate in the early stages of therapy. This is especially true, when the client’s normal narcissistic needs have never been gratified, and remain developmentally arrested. In such cases, clients need to be extensively heard. They need to discover through the agency of spontaneous self-expression the nature of their own feelings, needs, preferences and views.

For those survivors whose self-expression was especially decimated by their caretakers, self-focused verbal exploration typically needs to be the dominant activity for a great deal of time. Without this, the unformed healthy ego has no room to grow and break free from the critic. The client’s healthy sense of self remains imprisoned beneath the hegemony of the outsized superego.

This does not mean, however, that the client benefits when the therapist retreats into extremely polarized listening. Most benefit, as early as the first session, from hearing something real or “personal” from the therapist. This helps overcome the shame-inducing potential that arises in the “One-seen (client) / One-unseen (therapist)” dynamic. “When one person is being vulnerable and the other is not, shame has a huge universe in which to grow.” This also creates a potential for the client to get stuck flashing back to childhood when the vulnerable child was rejected over and over by the seemingly invulnerable parent. Consequently, many of my colleagues see group therapy as especially powerful for healing shame, because it rectifies this imbalance by creating a milieu where it is not just one person who is risking being vulnerable.

In this regard, it is interesting to note a large survey of California therapists that occurred about fifteen years ago. The survey was about their therapy preferences, and upwards of ninety percent emphasized that they did not want a blank screen therapist, but rather one who occasionally offered opinions and advice.

For twenty-five years, I have been routinely asking clients in the first session: “Based on your previous experiences in therapy, what would you like to happen in our work together; and what don’t you want to happen?” How frequently clients respond similarly to the therapists in the survey!

Moreover, the next most common response I receive is that I don’t want a therapist who does all the talking. More than a few have used the exact phrase: “I couldn’t get a word in edgewise!” “How I wish there was a way that our qualification tests could spot and disqualify the narcissists who get licensed and then turn their already codependent clients into sounding boards.” This is the shadowy flipside polarity of the blank screen therapist.

Psychoeducation as Part of Dialogicality
Experience has taught me that clients who are childhood trauma survivors typically benefit from psychoeducation about Complex PTSD. When clients understand the whole picture of CPTSD recovery, they become more motivated to participate in the self-help practices of recovering. This also increases their overall hopefulness and general engagement in the therapeutic process. I sometimes wonder whether the rise in the popularity of coaching has been a reaction to the various traditional forms of therapeutic neglect.

One of the worst forms of therapeutic neglect occurs when the therapist fails to notice or challenge a client’s incessant, self-hating diatribes. This, I believe, is akin to tacitly approving of and silently colluding with the inner critic.

Perhaps therapeutic withholding and abstinence derives from the absent father syndrome that afflicts so many westernized families. Perhaps traditional psychotherapy overemphasizes the mothering principles of listening and unconditional love, and neglects the fathering principles of encouragement and guidance that coaching specializes in.

Too much coaching is, of course, as counter-therapeutic and unbalanced as too much listening. It can interfere with the client’s process of self-exploration and self-discovery as described above. At its worst, it can lure the therapist into the narcissistic trap of falling in love with the sound of his own voice.

At its best, coaching is an indispensable therapeutic tool. Just as it takes fathering and mothering to raise a balanced child, mothering and fathering principles are needed to meet the developmental arrests of the attachment-deprived client.

The sophisticated therapist values both and intuitively oscillates between the two, depending on the developmental needs of the client in the moment. Sometimes we guide with psychoeducation, therapeutic self-disclosure and active positive noticing, and most times we receptively nurture the client’s evolving practice of her own spontaneously arising self-expression and verbal ventilation.

Once again, I believe that in early therapy and many subsequent stages of therapy, the latter process typically needs to predominate. In this vein, I would guess that over the course of most therapies that I conduct, I listen about ninety percent of the time.

Finally, I often notice that the last phase of therapy is often characterized by increasing dialogicality—a more balanced fluidity of talking and listening. This conversational reciprocity is a key characteristic of healthy intimacy. Moreover, when therapy is successful, progress in mutuality begins to serve the client in creating healthier relationships in the outside world.

Dialogicality and the 4F’s (Fight/Flight/Freeze/Fawn)
Because of childhood abandonment and repetition compulsion in later relationships, many 4F types are “dying” to be heard. Different types however vary considerably in their dialogical needs over the course of therapy.

The Fawn/ Codependent type, who survived in childhood by becoming a parent’s sounding board or shoulder to cry on, may use her listening defense to encourage the therapist to do too much of the talking. With her eliciting defense, she may even invoke the careless therapist into narcissistically monologuing himself.

The Freeze/Dissociative type, who learned early to seek safety in the camouflage of silence, often needs a great deal of encouragement to discover and talk about his inner experience. Psychoeducation can help him understand how his healthy narcissistic need to express himself was never nurtured in his family.

Furthermore, freeze types can easily get lost in superficial and barely relevant free associations as they struggle to learn to talk about themselves. This of course needs to be welcomed for some time, but eventually we must help him see that his flights of fantasy or endless dream elaborations are primarily manifestations of his dissociative defense.

“Freeze types need to learn that emotionally disconnected talking is an old childhood habit that was developed to keep them buoyant above their undealt with emotional pain.” Because of this, we must repeatedly guide them toward their feelings so that they can learn to express their most important concerns.

The Fight/Narcissistic type, who often enters therapy habituated to holding court, typically dodges real intimacy with her talking defense. Therapy can actually be counterproductive for these types as months or years of uninterrupted monologuing in sessions exacerbate their sense of entitlement. By providing a steady diet of uninterrupted listening, the therapist strengthens their intimacy-destroying defense of over-controlling conversations. Sooner or later, we must insert ourselves into the relationship to work on helping them learn to listen.

As I write this, I remember Harry from my internship whose tiny capacity to listen to his wife evaporated as my fifty minutes of uninterrupted listening became his new norm and expectation in relationship. I felt guilty when I learned this from listening to a recorded message from his wife about how therapy was making him even more insufferable. I was relieved, however, a few years later when a different client told me that Harry’s wife eventually felt happy about this “therapeutic” change. Her husband’s increased self-centeredness was the last straw for her and she finally, with great relief, shed herself of him.

“A therapist, who is a fawn type herself, may hide in a listening and eliciting defense to avoid the scary work of gradually insinuating herself into the relationship and nudging it towards dialogicality.” If we do not nudge the client to interact, there will be no recovering.

The Flight/Obsessive-compulsive type sometimes presents as being more dialogical than other types. Like the freeze type, however, he can obsess about “safe” abstract concerns that are quite removed from his deeper issues. It is therefore up to the therapist to steer him into his deeper, emotionally based concerns to help him learn a more intimacy-enhancing dialogicality. Otherwise, the flight type can remain stuck and floundering in obsessive perseverations about superficial worries that are little more than left-brain dissociations from his repressed pain.

It is important to note here that all 4F types use left- or right-brain dissociative processes to avoid feeling and grieving their childhood losses. As dialogicality is established, it can then be oriented toward helping them to uncover and verbally and emotionally vent their ungrieved hurts.

4. Collaborative Relationship Repair

Collaborative relationship repair is the process by which relationships recover and grow closer from successful conflict resolution. Misattunements and periods of disaffection are existential to every relationship of substance. We all need to learn a process for restoring intimacy when a disagreement temporarily disrupts our feeling of being safely connected.

“I believe most people, if they think about it, realize that their best friends are those with whom they have had a conflict and found a way to work through it.” Once a friendship survives a hurtful misattunement, it generally means that it has moved through the fair-weather-friends stage of relationship.

Synchronistic with writing this section, my son uncharacteristically got into a conflict at school. During third grade recess two of his good friends, also uncharacteristically, started teasing him, and when they would not stop he pushed each of them. This earned them all a trip to the principal’s office. The principal is a strict but exceptionally wise and kind woman. My son’s offense, using physical force to resolve a conflict, was judged as the most serious violation of school policy, but his friends were also held responsible for their part and given an enlightening lecture on teasing.

My son, not used to being in trouble, had a good cry about it all. He then agreed that a one-day loss of recess plus writing letters of apology to his friends were fair consequences. Two days later, I asked him how things were going now between him and the two friends. With a look of surprise and delight, he told me: “It’s really funny, daddy. Now it feels like we’re even better friends than we were before.”

Rapport repair is probably the most transformative, intimacy-building process that a therapist can model. I guide this process from a perspective that recognizes that there is usually a mutual contribution to any misattunement or conflict. Therefore, a mutually respectful dialogical process is typically needed to repair rapport.

Exceptions to this include scapegoating and upsets that are instigated by a bullying narcissist. In those situations, they are solely at fault. I have often been saddened by codependent clients who apologize to their bullying parents as if they made their parents abuse them.

In more normal misattunements, I often initiate the repair process with two contiguous interventions. Firstly, I identify the misattunement (e.g., “I think I might have misunderstood you.”) And secondly, I then model vulnerability by describing what I think might be my contribution to the disconnection.

Abbreviated examples of this are: “I think I may have just been somewhat preachy…or tired…or inattentive…or impatient…or triggered by my own transference.” Owning your part in a conflict validates the normality of relational disappointment and the art of amiable resolution.

Taking responsibility for your role in a misunderstanding also helps deconstruct the client’s outer critic belief that relationships have to be perfect. At the same time, it models a constructive approach to resolving conflicts, and over time leads most clients to become interested in exploring their contribution to the conflict. This becomes an invaluable skill which they can then take into their outside relationships.

As one might expect, fight types are the least likely of the 4F’s to collaborate and own their side of the street in a misattunement. Extreme fight types such as those diagnosed with Narcissistic Personality Disorder have long been considered untreatable in traditional psychoanalysis for this reason.

With less extreme fight types, I sometimes succeed in psychoeducating them on how they learned their controlling defenses. From there I try to help them see how much they pay for being so controlling. At the top of the list of debits is intimacy-starvation. Consciously or not, they hunger for human warmth and they do not get it from those whom they control. Victims of fight types are too afraid of them to relax enough to generate authentically warm feelings.

Finally, I believe one of the most common reasons that clients terminate prematurely is the gradual accumulation of dissatisfactions that they do not feel safe enough to bring up or talk about. How sad it is that all kinds of promising relationships wither and die from an individual or couple’s inability to safely work through differences and conflict.

Earned Secure Attachment
In therapy, clients get the most out of their session by learning to stay in interpersonal contact while they communicate from their emotional pain. This gradually shows them that they are acceptable and worthwhile no matter what they are feeling and experiencing.

As survivors realize more deeply that their flashbacks are normal responses to abnormal childhood conditions, their shame begins to melt. This then eases their fear of being seen as defective. In turn, their habits of isolating or pushing others away during flashbacks diminish.

Earned secure attachment is a newly recognized category of healthy attachment. Many attachment therapists believe that effective treatment can help a survivor “earn” at least one truly intimate relationship. Good therapy can be an intimacy-modeling relationship. It fosters our learning and practicing of intimacy-making behavior. Your connection with your therapist can become a transitional earned secure attachment. This in turn can lead to the attainment of an earned secure attachment outside of therapy. I have repeatedly seen this result with my most successful clients, and I am grateful to report that my last experience with my own therapy lead me to this reward.

Encounters with Suicide: A Psychotherapist Remembers Not to Forget

Forgetting Begins

Back when phones had cords and I was sixteen, my mother’s friend called our house one afternoon and told me that she had a shotgun across her lap and asked me if I could give her one good reason why she shouldn’t blow her head off with it. I was alone in the house because I had not joined my family that year on our annual summer vacation in Maine. Instead, I was flirting with an eating disorder by trying to live on iceberg lettuce with low-fat blue cheese dressing and getting up each morning at 4:30 to ride my bike two miles to the Holiday Inn just outside town where I was working as a waitress on the breakfast shift. So there I was, all by myself, trying really hard to think of the right good reason. Already I was imagining the explosion roaring through the headset, the result of my inadequate and faulty answer.

I am quite certain that I did not give her one good reason, but I must have said something that furthered the conversation, because I remember her saying, “Do you know what it is like to live with a man who hasn’t touched you in years?”

Well, no.

I think we talked for a while. I tried to imagine what a compassionate adult would say to her, and tried saying it. I offered her my mother’s phone number in Maine. There was not a telephone in the cabin, but the owners could deliver a message. My mother’s friend refused. “Oh no, I couldn’t bother her on vacation.” I was thinking that bothering my mother on vacation was the best possible idea under the circumstances, but clearly it was not going to happen. My mother’s friend told me that she was feeling desperately lonely now that her youngest child had gone to college. She told me her husband of thirty years was having an affair with a woman in her twenties. I did not want to know any of this, at least not first hand.

Gradually she came out of herself and seemed to remember that I was the kid her daughter used to babysit for. “I shouldn’t be saying all this to you,” she said. I couldn’t disagree. I made her promise that she would not shoot herself.

“You don’t need to worry,” she reassured me. “I’ll be fine. It has been a really bad couple of weeks, but I’ll be fine. My neighbor will be home from work soon. I’ll go see her.” I felt a lack of sincerity in this. “It is quite a distance from blowing your head off to visiting a neighbor, and I was quite sure our conversation had not traversed it.” But there was nothing I could do, so I said, “I’ll tell my mother to call you when she gets home.”

“Don’t call her,” she said. “Don’t bother your mother. I’ll be fine.”

I hung up the phone and put this conversation so thoroughly out of my mind that I nearly forgot to mention it to my mother when she returned from vacation, and when I did tell her I found myself experiencing a sort of delicacy and shame that precluded any mention of the shotgun. I suspect I did not even mention the threat of suicide. I can’t quite remember, but I imagine myself saying that her friend seemed unhappy.

Forgetting Returns

I remembered this incident only recently when I was sitting in session with a client who was telling me about how she was going to buy a gun in order to shoot herself. This client, now in midlife, has been suicidal to varying degrees since she was sixteen, so her thoughts were not new, but the method she was proposing was far more likely to be lethal than anything she had considered before. At one level, I was working hard to assess her immediate safety and devise a plan. At another I was aware that I was feeling oddly wooden, disconnected, and ashamed. I knew I was irritated with her, as well as anxious. She is coy, deceitful, challenging—there is a way in which she teases me with the drama of her death, a drama she has been crafting with loving care for decades, a narrative in which her final explosive act of rage sears all of us who know her. It is a story she caresses like a beloved, spoiled pet, but also one that frightens her, and I have found over the years that she is readily diverted by small gestures of empathy on my part, or that she inserts her own delaying tactics, such as the need for a pretty death dress, or her plan to be honest on the permit application for the gun regarding the purpose of her purchase.

What she will not do is explore how this story serves her, what its purposes are in her life, what it helps her to avoid. I struggle to find some way toward this conversation, but as often happens, my own thinking is muddled by anger, anxiety, and that odd sense of shame. The only question I seem to be able to articulate clearly to myself is, “Will she kill herself now?” I believe she would not, and extract a promise to that effect. The promise comes easily, almost too easily, and prompts a new discomfort: I worry she is lying because, after many years of experience, she knows what would happen if she acknowledges an active plan. In the end, we contact her husband together, and afterward I let her leave.

And when she leaves, I forget completely—not about her, but about her thoughts of suicide. At our next session, fortunately before I have a chance to reveal my forgetfulness, she reminds me, but I forget again anyway. Or maybe forgetting is not quite the right word. It just seems to fall out of my mind. I start having defensive little conversations with myself about this forgetfulness. Maybe, I tell myself, it is because I am not really worried. After all, I am as confident as I can be when she leaves that she will not kill herself. She has been doing this for over 30 years. She can’t live in a hospital. But then I worry that I should be more worried. And then it falls out of my mind again, until our next session.

Of course it is hard for all of us who are clinicians to think about suicidal clients. It is frightening. It is a sad, hostile, violent act, in which we stand to lose a great deal at many levels: most importantly our client, but also self-esteem, self-trust, and professional reputation. We fear losing our livelihood if we fail these clients. We fear blame from ourselves and others. We choose not to think about it in many ways, including by resorting immediately to hospitalization as a way of ensuring not only our client’s physical safety but our own emotional safety. We insist on safety contracts before exploring deeply with the client. We find excuses and the means to get rid of them. “We rush to make repairs before we have the courage to examine the injury, slapping bandages on wounds so deep we are afraid to see them.” We increase medications, we loosen boundaries, we are afraid to ask questions, we demand answers we want to hear. With those who make chronic threats, we can become impatient and irritated. Some of these actions are of course sometimes necessary and desirable. But often what we are feeling first and foremost is a need to put a lot of distance between ourselves and the thought of a client’s suicide. These intense feelings and avoidances are common in one way or another at one time or another to all of us as clinicians, and certainly in this case they were part of mine, but I was beginning to suspect that for me, there might be something else coming up as well.

The Roots of Forgetting

On the surface, it seemed obvious. My father’s family worked very hard to forget my grandfather’s suicide. This dramatic issue, however, seemed so far from my direct experience I wasn’t sure if I could legitimately connect it in any way to what I was noticing about my feelings and behavior with my client. On the other hand, it seemed risky to assume my own even indirect personal experience with suicide was irrelevant, so I gave it some thought.

“My grandfather hanged himself when my father was four, and my grandmother did all she could to erase every memory of him.” I know a couple of things about my grandfather that I am pretty sure are true. He was a rumrunner in Pennsylvania during Prohibition, and he brought big bands like the Dorsey brothers to local hotels and night clubs. I have seen only one photograph. He is a broad-shouldered, dark-haired man standing next to a three-year-old version of my father on a merry-go-round horse. Once after my grandmother died I went on a search of her house for evidence of his life. I thought I had hit the jackpot with a pile of photo albums in the closet of an extra bedroom. It turned out that in each of the scalloped-edged photos from the 1930s, every one held carefully in place with little black corner pockets glued to the page, she had ripped out the images of my grandfather, leaving the others standing and laughing and smiling in front of buildings and cars, unaware of the torn edges framing the emptiness where he had been.

My grandmother lied about her husband’s death for more than 30 years, claiming he had died of a variety of unlikely ailments, including back problems. Nonetheless, her feelings of abandonment, rage, and shame were palpable to everyone who knew her. Even once she had admitted the real cause of his death, her explanations were dislocated and strange, and for me, always at least secondhand. In one version my grandfather was in a mental hospital and had what we now call bipolar disorder. In another, less likely but still my preferred version, he was also in a hospital, but possibly hiding from mob associates who murdered him.

There is no one left now who knows what really happened to my grandfather, or who can really even guess why. Like in the children’s game of telephone, the stories I have heard are probably distorted beyond recognition from their original source as they have been whispered down an almost century’s long lane. Even my own memory is confused by odd and inexplicable distortions and images. I remember with crystal clarity, for example, driving with my father and hearing him tell me that my grandfather probably had an affair with one of my grandmother’s many older sisters. I remember seeing the colors out the passenger side window, rural New York in the fall: the fields yellowing, bark darkened with rain, leaves brown and drifting, hints of lavender and red, the steady green of conifers. There was only a little gray in my father’s beard. I remember not just envisioning but knowing, remembering, the dark-haired older sister I never met, more settled than the younger, more beautiful red-haired one my grandfather married. I imagined her specifically. I could see her hanging laundry on a warm day in her flower-patterned dress. I could see the intense sexiness of the seam of her stockings drawn along her slim calves from the fall of her skirt to her square-heeled shoes.

But my father is bewildered by my memory of this conversation and has no recollection of any such affair. Why have I imagined it? Why has he forgotten? I am reminded of another children’s game, where one child draws a head and folds the paper over so the drawing can’t be seen, another draws the arms and folds her part in turn, another the legs, another the feet. Once unfolded, a figure is revealed, a crazy patchwork of imaginings. This is my portrait of my grandfather.

He is for me essentially fictional, his only reality in my life the shadow he cast on those he chose to leave behind. There is no pain in his release of any claim on me, although the long, slow-burning coals of the suppressed rage that were his legacy have in their way come down to me. Yet I think that in these odd moments—with my mother’s friend, with my client—I become aware of something else my grandfather has left with me. He lives with me in my unreasonable, inherited loyalty to my cranky little gnome of a grandmother, who demanded that my father never remember, never even try to remember, his father. He lives with me when my client’s words obediently fall out of my mind. In my father’s family, it is an act of loyalty to erase my memory and bury my anger and fear. Even though he died 20 years before I was born, my own memory of my grandfather is in its way constant and precise: “I remember him by forgetting.”

Awareness and Remembering

As so often happens in therapy, it is hard to be certain that this subtle, internal shift in awareness that I experienced thinking about my inability to hold my client’s suicidality in mind produced a change in my client. The role of therapist self-knowledge and self-awareness in the course of therapy is really immeasurable, in both senses of the word—certainly not readily quantified, but equally certainly a source of lasting, profound growth for ourselves and for our clients. I know it has become easier to get past my anger, fear, and denial when my client is suicidal, and this has created a change in the quality of our conversations about it. We are less focused on management and more focused on meaning. Usually by the time we wrap up with a safety plan it has become unnecessary, more of an addendum than a centerpiece of our conversation. Between sessions, I do not forget how she has been feeling. I know I will feel deeply angry, sad, betrayed and, yes, guilty, if she kills herself one day, but whatever happens, it will not be because I have allowed that possibility to fall out of my mind. She still holds on to her fantasy of killing herself, but for some time now speaks of it not as a plan, but as a feeling. “I am feeling suicidal” for her is no longer a threat of immediate action, but a description of despair. Like partners in a dance, we have both taken steps away from the concrete and into the symbolic, for I have replaced the concrete act of forgetting with engagement and curiosity.
 

Grief and Gratitude: Working with Stroke Survivors

Together

May we sit with wisdom and compassion

at the ancient fires
of dashed hopes
and lost dreams.
May the pain which brings us together
become the cave we enter
in reverent descent
and surrender
to what
IS.
May we have the courage
to bear this rebirth
together.
—Carol Howard Wooton

 

An Interruption

In 2005, our circle of six met in a poorly lit room of a community hospital. This afternoon, Tom had the floor. A former surgeon, he had been looking forward to cutting back his practice to spend time with his grandkids.

Tom had lived his life in constant motion. He had been a football star in high school and college before going to medical school. Now, at 67, he was paralyzed on his left side: his left forearm contracted in spasm, his once-dominant left hand clenched into a permanent fist in front of his belly, his left leg rigid below his knee. His chiseled face still handsome, he sat straight in his wheelchair, strong muscles supporting his torso—a powerful presence. But his eyes always gazed down; he barely looked at anyone.

“I used to be able to ski, drive, do everything around the house,” he said. “I loved my work. This summer, I planned to take the grandkids to the ocean, show them how to dive into the surf. What can I show them now? Nothing.” The other group members listened quietly to his grim litany; all of us recognized his truth.

One day in 2004, Tom had come home from work and eaten dinner as usual. His wife was in the next room when he felt himself lose balance and topple over. He called out to her.

“I’ve had a stroke. Call 911,” he told her from the living room floor. She made the call, then came back into the living room and sat her petite frame on Tom’s head until the paramedics came, knowing he would try to get up.

“I had it all planned out,” Tom said to us. “And now I can’t do any of the things that I want to do. All that time I spent in medical school and working hard while my wife raised the kids—this was supposed to be my time with my grandchildren.” Each week he repeated these thoughts while gazing at the fingers of his left hand, pulling each one out as straight as possible, then resting it on the arm of his wheelchair or in his lap. On this day, the door banged open, interrupting him.

In barged a large woman in a motorized wheelchair, which she drove fast and well. Her left leg was swollen huge, the bare right foot discolored, her skirt hem hardly covering the Foley catheter bag strapped around her calf. In a croaking voice, she declared, “There’s only two kinds of people in the world: keepers and assholes. And you’re all keepers!”

Everybody, including Tom, guffawed. Amidst the belly laughter, she zoomed over to our small circle, which had opened to give her room. She told us she had been sitting outside in the warm air for 45 minutes, thinking she was early. When no one else arrived, she’d opened every unlocked office door until she found us, arriving with only 30 minutes left in the session.

“Hi there,” she said with a wide grin. “I’m Alexandra.”

None of us could have guessed that day how much Tom and Alexandra would change each other’s lives.

The Group

When I’d spoken to Alex on the phone for the group screening, I hadn’t been sure whether I should allow her in at all. I could tell immediately that she would be a handful. She spoke nonstop. Her history included two violent deaths in her family and probable childhood verbal and physical abuse. There was no way to determine what aspects of her personality resulted from the innumerable medications she was taking, and what was caused by her stroke and or by PTSD. The nurse case manager referred her to me because of her complex medical conditions and because the psychosocial situation at home was especially difficult. Along with the stroke, which had left her completely paralyzed on her left side, she suffered from diabetes and lymphedema. Her husband was away at work or commuting during their waking hours, leaving Alexandra isolated at home with only the companionship of a part-time caregiver.

Any group therapist would have been concerned about the severity of her situation, her apparent need for attention, the feasibility of containing her, and the unpredictable impact she could have on others. However I also realized that she needed the group and had many stories that needed witnessing, as well as much wit and spice to offer her groupmates. And this was my mission: to create a community of belonging for stroke survivors to grieve, heal, grow, and keep hope alive—the space I wished I’d been able to find in the first years of my own “recovery.”

The Beginning

“I had a stroke in 1985. I was 38, with no high-risk factors.” Having just been minted as a licensed MFT, I was living a typically stressful existence building a practice and taking whatever jobs I was offered. It happened at a work-related event, a friendly barbecue for a support group of women Vietnam veterans which I co-facilitated. All of a sudden, I grew dizzy and wasn't sure if I was sitting up straight; the world receded to a distant buzz. I slept on the hostess’s couch that night, unable to drive home. When I woke to find I couldn’t stand, or even crawl, she brought me to the ER, where my husband met me.

The neurologist diagnosed me with a cerebellar stroke or CVA, etiology unknown, and gave an excellent prognosis: I would be fine, and it would take a while to learn to move again, to walk, to have a brain that worked at “normal speed.” When I asked what “a while” was, he hedged. “Six months from now, you and your husband will know,” he said finally, “but other people probably won’t be able to tell.”

Six months later, that was not true. Two colleagues who had suffered a stroke and a traumatic brain injury, respectively, told me, “Don’t worry about your progress for at least a year or even two. Just keep at it, no matter what.”

“You Don't Get It”

Before my stroke, I’d consulted with a therapist named Helen on my own cases. She was a smart, warm, empathic woman several years older than me with a well-established practice. Within 24 hours of my hospital admission, I asked my husband to call her: I needed her help in formulating a plan for handling my caseload. After we made arrangements, she continued to call me during my rehabilitation. Our regular contact reminded me of my professional-self while being a patient.

Returning home a month later brought me face to face with my new limitations outside the safe hospital environment. I was frequently overcome by waves of strong emotion, mostly frustration and sorrow. I determined that weekly psychotherapy would assist my physical recovery. My therapy with Helen began on the phone; when I was able to leave the house, my husband or a friend would drive me.

My neurologist had advised to me to wait six months before driving. After about nine months and many practice drives with my husband, I drove myself for the first time to Helen’s office. “During the entire drive from San Francisco to the East Bay, I held onto the steering wheel so tightly that my knuckles turned white”—not out of fear, but because I wanted the pressure of my hands against the steering wheel to anchor my attention. Without that strong sensation reminding me to keep my eyes on the road, I might have become so riveted by anything moving alongside me—the beauty of leaves dancing in the wind or the blue BMW passing me—that I might forget about looking straight ahead.

I was drained by the time I reached Helen’s office. “You made it! How was it?” she asked.

When I mentioned that it was hard for me to concentrate, she replied, “Oh, that sometimes happens to me, too. I’m driving and thinking about what I’ll buy at the grocery store or the calls I need to make.”

With a pit in my stomach, I realized, “She doesn’t get it. It’s not like that now.” I didn’t have words yet to tell her how it was for me, or to explain to her what she was missing. So I said nothing.

It happened that I also knew a therapist who had suffered a traumatic brain injury in a car accident. I knew he would understand, so I began to meet with him. Together we explored and named the difficult parts of our experience: slow thinking, unreliable memory, trouble concentrating, having to relearn everything, wanting to be “normal” while also being impaired. He supported me with anecdotes from his own experience and comments indicating that he understood. This was enough to allow me to go back to Helen and have the words to talk with her about our rupture.

“No, no, no, you didn’t understand,” I told her when I returned. “Part of me wanted to pass as normal, as someone who’s simply distracted by making a mental shopping list. Not being able to rely on my capacity to direct my attention was frightening.” As we talked, I came to understand that her well-intended response grew from her wish to join with me to help me feel understood and less flawed. Later, we also spoke of her fear and grief in the face of all my sudden losses.

Be Curious

As I learned with Helen and would keep learning in my group work, it’s essential for a therapist to acknowledge discomfort in the face of the sudden profound loss of physical, communicative, and cognitive capacities, all highly valued abilities that may lead to loss of social, family and vocational roles—loss of identity. Making assumptions that he or she understands is a great defense against that discomfort, but it doesn’t help the client.

Therefore, it is especially important to practice curiosity. When clients say something’s hard for them, ask, “How,” or, “What’s that like?” or “What’s that mean to you? Exactly what part of it is hard?” “Asking questions like these gives the survivor an opportunity to attend to inner experience and attempt to articulate it.” Stroke survivors’ process of authoring their own new stories enlarges rather than diminishes their sense of self.

The process of articulating a narrative doesn’t happen during rehabilitation, which currently averages 16 days in the U.S. There, the focus must be on the rapid regaining of lost function so the discharged patient can perform as many ADLs (activities of daily living) as possible: the basics like sitting up, transferring from bed to wheelchair, standing up, walking, toileting, climbing up and down stairs, swallowing, feeding yourself, putting your pants or bra on.

Since there is little time and training for rehabilitation staff to focus on enhancing the patient’s new identity, we therapists have a big job. It is all too is common for patients to feel diminished and “less than” in medical settings: imagine having to focus most of your attention on exactly what you can’t yet do. How we respond as therapists, friends, and family makes a big difference in the healing process.

Sometimes it can be hard for a therapist to remain curious when a client seems to simply repeat the same story over and over, as Tom did. But consider this: it’s exhaustingly hard work for an already injured brain to develop new neural pathways. This spurt of neuroplasticity is nonetheless necessary for both physical and emotional recovery. No wonder survivors often repeat the same stories; pure neurological exhaustion can lead anyone to opt for the better-established neural route. If you keep hearing the same story, you might want to say, “I hear you. You are working so hard just to stand up again.” Follow-up questions will prompt clients to experiment with new thoughts and stories.

Finding a Community

Even though I had loving friends and a devoted husband and family, I felt isolated when I returned home. After the crisis, my life consisted of weekly physical therapy—learning to walk again, regaining strength—and resuming tasks like buying groceries, balancing my checkbook, making dinner. Meanwhile, my friends and family went back to their busy lives. I was left moving through my day incredibly slowly, and mostly alone.

“I began to wonder: “Where do I fit now?” What were my chances for a career, or any role in society?” Would I be able to resume a full professional life like my colleague who had a traumatic brain injury?

Three months later, with the help of my therapist Helen’s consultation, I resumed seeing one client a day in my home office. Despite lingering but outwardly subtle attentional difficulties, I discovered that I could still listen deeply and skillfully to one person at a time. After walking my client to the top of my long stairwell, I had to rest for several hours before a simple dinner with my husband and bed. Still, this was a personal triumph, and the beginning of reclaiming my professional confidence.

I also began to search for a community group where I might find guidance and a place I could belong. City College of San Francisco had a program for Acquired Brain Injury survivors, but the organizer told me I was too high-functioning. Yet I was not high-functioning enough to occupy my own life in the way that I had before.

Through friends, I found my way to the Stroke Club, which met monthly at a local YMCA. First I was a guest speaker, then I became the volunteer co-leader. The group provided the opportunity to test my ability to perform professional functions I had used before my stroke. I was pleased to find that my attentional difficulties didn’t interfere with my ability to lead the group. In fact, I proved to myself and to others that I could still conduct a group class for a few dozen adults, using my skills as a counselor and educator as well as my personal experience to serve others as we learned to cope with life after stroke.

The Stroke Club provided social connection, education and some support. It was perfect for some, but it didn’t satisfy the therapist in me. My professional experience as a therapist working in a psychiatric halfway house and with Vietnam vets had taught me how potent small group intervention is for marginalized and stigmatized populations. I wanted to start a small group for stroke survivors. But how?

After hearing a local neuropsychologist give a talk to mental health professionals about his group work with brain-injured adults, I called him and told him my idea to organize a group for folks who’d had strokes. He suggested we talk more over lunch. He was very encouraging.  After we discussed logistics and recruitment, he asked me, “Are you going to volunteer to do this?”

“Well, I’ve been volunteering for the last two years and seeing clients in my private practice,” I responded. “I’d like to ask people to pay me. I am a therapist, after all.” In response, he expounded on the rewards of volunteering. It was as though he was saying, “Oh, you’ve had a stroke? I’ll let you volunteer. Oh, yes, I think you’re competent, but you want to charge money?” I held my ground, and was proud of myself for doing so, despite my own still-shaky sense of self-efficacy.

To his credit, he listened, thought about it, and said he would try to work out payment. A few weeks later, there was an envelope waiting for me in the staff mailroom of his hospital, St. Mary’s, where my group had begun. He had written me a personal check.

When I asked him about it, he told me, “We can’t get the money from St. Mary’s yet and I often make donations. I know you and think this is a good idea, why not help you launch this? Seems more important than giving to United Way.”

This was a pivotal moment. Not only was it a kind and generous gesture, but even more than that, it was a sign of the neuropsychologist’s professional dedication and esteem. Neither of us knew for sure where I belonged in the medical model—star patient or competent professional. The donation moved us both across an invisible threshold.

A Different Kind of Challenge

The loss of competence and control over his daily life was understandably trying for Tom, the former surgeon. During his first years with the group, he said no to every suggestion that his loving family offered, most especially his wife. He refused physical therapy. He refused occupational therapy, though his wife had already arranged his eligibility and prescription. “No, no, no, no.” The only suggestion he took was coming to this group, which his wife had also recommended, worrying about how little he left the house. She had to learn to tolerate Tom’s “no.”

It was easier for me, as the therapist, than for Tom’s family to see that “saying no was the only control Tom could exert in his life.” Still, I advised them that if they could just let it be and stop pushing, maybe he would say yes, but on his own schedule.

Of course, I did break my own rule occasionally. Countless times over the course of the group, I had given Tom the name of an extremely talented and competent physical therapist who specialized in neuro-rehabilitaton. Each week, I would ask him, “Did you call her?” And, like a high school student, he always had an excuse. “I spilled coffee on it.” Or, “I’m going to call. I just haven’t gotten to it.”

Finally, I called the physical therapist and asked her if she would come to the group in order to provide a short lecture and demo to all the members. She knew that I had referred her to Tom. When she came, she made a special pitch to him. We watched her use all her strength and skill to pull his contracted left arm as straight as she possibly could against the resistance of all its spasticity. His look of surprise grew into a smile as she uncurled his fingers one by one and placed them on his lap. It helped, of course, that she was confident and attractive. Finally, he asked her in front of the group, “When can you come over?”

Over the next several months, Tom progressed from being wheeled into the room in his wheelchair, to walking while holding onto the chair with his caregiver nearby, to using a four-pronged cane while his caregiver wheeled the chair in behind him.

The group witnessed and applauded his progress week after week. Nevertheless, Tom’s grief trumped all: “Yeah, but the wheelchair’s still here.” “Yeah, but this isn’t really walking. Walking would mean that I would be out there on my own again.”

Tom’s despair did lead him to make a suicidal gesture. I classify it as a gesture, not an attempt, because he did it at home, with his wife in the other room and the physical therapist scheduled to come.

After this incident, Tom didn’t return to the group for a while. When he did, it was clear something had shifted. Before his stroke, he had always been healthy and well adjusted. He had lots of great coping skills that had enabled him to focus on achieving external goals; he hadn’t had a reason to reflect on his interior life. Now, even though it was physically and emotionally painful, Tom was learning how to face and cope with his own despair. He began to see a cognitive-behavioral therapist who helped him utilize his intellect to gain insight into his own thoughts and feelings. In this way, he learned about depression.

When Tom came back, he was initially subdued, and at the same time, sardonic—a new sign of energy appeared in his eyes and voice. His mantra became, “Well, I guess I’m not going to be taking the grandkids to the ski slopes,” as opposed to wishing he could. He hadn’t yet fully accepted his new life, but he was getting there.

The arrival of a new group member soon afterward gave Tom the push he needed. George was also in his late sixties, a medical professional, and paralyzed on his left side. Only several months post stroke, he was still wheelchair-bound. But George had explored his dark side prior to his stroke: he’d been in a 12-step program for years.

One day in group, George addressed Tom point-blank. “You were a surgeon,” he said. “You knew what to do if you wanted out.”

Tom had met his match. No more BS. George called him on his actions, and set him some new expectations. He wanted Tom to be a role model. “How long did it take you to stand up on your own?” George would ask him. “What do you think about stem cell transplants? Neuroplasticity?”

They met man to man, and began swapping golf and football stories and off-color jokes. With George’s support, Tom not only became the group’s in-house physician and renewed his medical license: he had found a new role for himself.

Look for Wholeness

Tom’s struggles exemplify the profound grief and loss that can engulf a stroke survivor’s perspective. As the facilitator and a fellow survivor, it was hard for me to hear Tom’s despairing litany week after week. While the group had made space for Tom to speak his dark truth, I also knew from personal and professional experience that it was possible to move beyond the focus on what had been lost.

It is crucial for survivors and their therapists to know that recovery doesn’t stop at six months or a year, or even at two years. Now, with new research into neuroplasticity, we know that people can continue to progress 10, 15, even 20 years after a stroke. Although, there is no way to know how much healing is possible for an individual survivor.

Oftentimes, people become focused on regaining their capacity to ski, like Tom, or to go back to work. But if the goal is too concrete and narrow, they might be severely disappointed. It took a couple of years to go from mastering the stairs to my apartment to being able to walk six miles; in order to appreciate my successes, I had to stop comparing myself to who I had been.

Grieving is necessary, along with the acceptance that there’s a new normal. That’s why I hate the word “recovery”: it implies a return to a prior state. But moving forward from a stroke is not as simple as trying to get your life back to the way it was before, because it will never be the same.

So instead of aiming for the impossible goal of returning to a previous state, clients must re-imagine themselves and their lives. The term I have chosen, for lack of a better one, is “revisioning.” And neither feeling—the sense of loss nor the sense of possibility—ever goes away completely for a stroke survivor. “I think that the best outcome for folks with strokes is that grief and gratitude live side by side.”

A Good Boy and a Bad Girl

As the group progressed, Tom and Alexandra formed an unexpected bond. They seemed like polar opposites: he was the quintessential altar boy, the high school football star, the successful surgeon. He did the best he could at whatever was in front of him. On the other hand, Alex was a troublemaker who questioned authority, and who gave everybody a hard time probably from her first words. Tom and Alex had actually gone to the same religious school, but Alex had been suspended for asking questions about birth control.

When, week after week, Tom was stuck in his “yeah, buts”—“I walked a little further with my physical therapist this week, but it’s still not throwing a football” —Alex would finally be the one to say, “I’ve had enough of that. You’re just feeling sorry for yourself. Come on, I’m happy for you! You’re out there walking. If I could walk, I would be really happy.”

Tom would break his self-absorbed downward gaze at his spastic left hand and look at Alex, in her motorized wheelchair, who hadn’t stood on her own two feet in who knows how long and wasn’t going to be walking two inches. That stopped him dead in his tracks.

Alexandra’s directness and her outrageous sense of humor unfailingly got her the attention of the group, along with her stream of hilarious stories about her past traumas and clever triumphs during her checkered career. Her level of her socioeconomic dislocation and physical disability was also the most profound in the group. Her husband ended up losing his job, so they lived on food stamps and MediCal.

When Tom had been absent from the group following his suicidal gesture, I used the opportunity of that emotional upheaval to ask, had they ever felt suicidal? We all talked about our own moments of despair and discouragement. Alex’s half-joking response was, “Suicidal? Heck no. I might have felt homicidal.” And the truth was, that’s how she dealt with things. Because of the extent of her disability, she was constantly undergoing humiliating and painful medical treatments. Instead of becoming passive and defeated, she chose to be a “difficult patient.”

Alex had a suprapubic catheter, which went through a hole in her abdomen directly into her bladder and had to be changed weekly. Sometimes, predictably, this routine procedure was very painful. Once, Alex related a story about a nurse who replaced the catheter especially roughly, jamming his elbow in her face in the process. She begged him, “It hurts! Stop! Please stop.” When he ignored her, she bit his elbow hard enough to draw blood. She laughed raucously as she told us this story. And while we appreciated the comic relief, we were horrified at what she had been put through, and awed by her behavior.

Though I had initially worried about Alex dominating or disrupting the group, I learned to let her have her way and to let her speak. She also learned to restrain herself when I glanced her way. The group’s attention began to transform her. Alex was always self-aware enough to know that she played the role of the bad girl, and that she used her own humor as a defense. Over time, she began to able to talk about what was really difficult for her, without the defenses.

For instance, in order for Alex to get out of bed and be put in her wheelchair, because she was large and because she was completely paralyzed  on one side, a machine called a Hoyer lift had to be used to move her around. After several years, Alex began to talk more about her own sense of humiliation and discomfort around this device. She once told us that, moving her from her chair to her bed, her husband had dropped her by mistake. She told this story without her normal humor and outrage. She let her sense of vulnerability be seen and felt. The empathy and resonance in the other group members as she shared was palpable.

She also began to name some of the things that were especially difficult for everybody to talk about: What it’s like to be incontinent. What it’s like to wake up in a bed filled with your body fluids, and have to wait for somebody to come change you. Her bringing up these difficult moments in turn freed up some of the more reticent men to comment on the reality of those experiences for them.

So, as it happened, Tom, the good boy in the group, was learning from the “bad girl” about how to resist passivity and defeat in the face of his condition. And at the same time, the bad girl had gained the attention, respect, and admiration of the surgeon, the archetypal good father. Thanks to these relationships and the support of the group, Alexandra gradually moved from being the negative leader who challenged authority—mine and everybody else’s—to becoming a positive leader and thinking about herself in a constructive way. I believe that the group’s curiosity and openness to her perspective of the world allowed Alex to fully own not only her story but her personality, her own way of being.

Warrior Heart

The extent of Alexandra's transformation became clear to me when she organized an award ceremony for the group. She came up with the idea of awarding a former group member with the Warrior’s Heart Award. The award had been inspired by a group conversation I initiated about what it means to have a strong heart and be courageous. In that discussion, most of the members, including Alexandra and Tom, had agreed on John.

John was in his early forties, with red hair and an elfin smile. He used to be a chef, and still loved food. He was partly paralyzed and had expressive aphasia, which means he understood almost everything, but his verbal capacity was limited. He spoke primarily with gestures and facial expressions: his hand on his heart, wide smiles, quizzical looks. He had joint custody of his eight-year-old son, for whom he prepared meals with his one functional hand. And even though he was partly physically disabled and his speech was limited, he was always out in the community, swimming, grocery shopping, helping with events at a local community center. When people saw him around, he was always happy.

When Alex brought up the idea of the ceremony, I agreed it would be wonderful. I decided to wait and see if she was serious about putting effort into helping to make this happen. Several months later, Alexandra approached me about it in the group. “What about the celebration, Carol? Are we going to do this? I really want to.”

And so, with the group’s help and Alexandra’s leadership, we put on the First Annual Keeping Hope Alive Warrior Spirit Award Ceremony. It was moving to see her in her new role: as a leader, an organizer, an eloquent writer. For the award ceremony, she composed a poem that captured for all of us the strides we continue to make together as a group:

“John, you stand tall
your head above others, your back straight.
You are universally liked, your friends, legion. You inspire
us with your dogged
persistence in the face of challenges that defeat others.
Your warrior spirit proves to the rest of us, you are our representative
as we stand upright against the vagaries
of our conditions, and proof we will recover,
and contribute to each other’s success.
Thank you for being who you are:
Our warrior spirit.”

[This article was written with the consent of the group members portrayed therein.]