Grief and Gratitude: Working with Stroke Survivors

Earn CE Credit

• Together
• An Interruption
• The Group
• The Beginning
• “You Don't Get It”
• Be Curious
• Finding a Community
• A Different Kind of Challenge
• Look for Wholeness
• A Good Boy and a Bad Girl
• Warrior Heart

Together

May we sit with wisdom and compassion
 

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.]