Part 17: Living Proof

When what you've lived through isn't enough...

Demonstrating to other stroke survivors how to gently release shoulder tension

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Stretch one arm out in front of you. Turn your hand palm up. Curl your fingers into a fist. Hold that fist tightly (don't hurt yourself) and move your arm in toward your chest. Turn your wrist so that your fingers are facing away from your chest as you hold it there. Tighten your muscles in that position (without hurting yourself). If your arm was permanently locked in that position do you think it would be painful? Release your arm and relax. 

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Spasticity, Tone. Contraction. This chronic, involuntary tightening of muscles plagues many stroke survivors and people with brain injury. It diminishes their ability to function, tormenting them with pain and spasms. It was my nemesis, but it was also a catalyst that pushed me to find a way to relieve it so that I could regain more natural movement in my affected left side.

Spasticity challenged me and I faced it down by discovering that I needed to do less not more when I worked on my tight arm and leg. I needed to focus on grace, effortlessness and releasing the grip of muscles that had forgotten how to relax. This was how I began to truly heal and recover much of what I’d lost after a tangle of blood vessels burst in my brain. I considered myself lucky to have made this breakthrough.

At ARISE, the program where I taught other stroke survivors the healing techniques I’d developed for myself, many of the people I worked with were dogged by intractable muscle contractions that added to their frustration and despair.

Muriel had one of the most severe cases of stroke-induced spasticity I’d ever seen. She was a big woman in her late sixties who mostly used a wheelchair to get around. She could stand and walk a few steps with a lot of assistance from the staff, but the effort it took was so exhausting that she preferred to stay seated.

Muriel’s arm was chronically tucked upward resting on her chest, her forearm was torturously rotated so that her fingers and wrist were stuck facing out and away from her body. Her fingers were clutched in a tight talon. The contraction of her muscles had deformed her arm into a source of agonizing torment that affected the rest of her body. Her torso was contorted to the right, which pulled her hip up and locked it into an unnatural position. Muriel lived in constant distress, but because her personality was “difficult”, even her reasonable complaints were often dismissed by her therapists and clinicians.

“I haven’t been sleeping much lately,” Muriel said to me one morning as she tried to get herself some coffee. “Can you help me with this?” We were supposed to encourage the survivors to be as independent as possible, so instead of serving her I held the cup steady while she poured.

“Are you anxious?” I asked.

“No, it’s the pain. How am I supposed to sleep with this?” Muriel jerked her twisted arm at me. “They won’t do anything for me. They don’t believe me, you know.”

“Who doesn’t believe you?” I asked.

“The doctors. I’ve told them about my pain, but they don’t believe me,” Muriel answered. Tears rimmed her eyes. “They say I’m making it up. They’ve been giving me injections and I’m on medication, but it doesn’t work. I’m not making it up. Look at me! Do you think I hurt?”

“All someone has to do is tighten their arm like yours and hold it that way for a minute to see how painful it is,” I said.

I touched Muriel’s arm gently and asked if I could work on it. She was grateful for the attention. I slowly massaged her muscles and bit by bit helped her arm into a more natural position. Every time I felt resistance I stopped, then I’d tell Muriel to take a breath and relax before continuing. I explained to her that the contraction in her arm was like a knot and the goal was to untie it. If she tried to force her arm into movement it would tighten further, just like a knot gets tighter if you pull too hard on a string.

After about ten minutes Muriel’s hand unclenched. Her fingers opened slowly like a sea anemone.

“Oh my God!” she exclaimed. “I haven’t been able to do that in ages!” I was elated by the progress we’d made in such a short time. Consistent relaxation practices might have helped Muriel improve, but I wasn’t in a position to offer them. All I could do was work with her in class and help her for a few minutes here and there. I suggested she find a massage therapist who might be able to treat her.

She was interested, but without her doctor’s approval she was hesitant. Even though she was ambivalent about her doctor’s care, she still looked to him exclusively to give her permission to seek out new paths for recovery. He had never suggested massage therapy so she questioned whether it was viable, and she was too intimidated to ask him. Most of the survivors were like Muriel, frustrated with standard therapies but nervous about exploring without guidance from the experts they relied upon.

Bifurcated - drawing by Elizabeth Yoffe

I got along well with the other staff members at ARISE, but because I lacked academic credentials to back up my experiential knowledge I wasn’t viewed as a professional. It was impossible to put my approach to healing into a scientific, clinical model that the therapists understood. How could relaxation, focused attention, gentle retraining using the non-affected side, music, and visualization have any real benefit? What was the mechanism? Where was the clinical research? Where was the statistical proof?

In the early 1990s, neuroplasticity wasn’t part of the clinical landscape. If the therapists and I had known about it, I would have been able to explain my work in a way that they understood.

When I discussed the physiological benefits of my techniques, I was often met with kind but dismissive replies. Ironically, I was living proof that these methods could be effective, but none of the therapists asked me how I’d done so well, even though they knew how severe my stroke had been. I was considered an anomaly.

The tension between our different approaches comes to a head one day at a staff meeting while we were planning for the upcoming term. I wanted to offer a class that combined body awareness with gait training. When I was in the hospital and the physical therapists had let me practice walking between the parallel bars, I’d felt safe enough to try to do it without my cane. I had moved slowly, paying attention to my steps, and if I lost my balance I could grab onto the bars. I understood from that experience that in order to focus on proper mobility, the body needs to be able to relax and not automatically tighten muscles in a fear reflex. I imagined some kind of hanging harness that could be used to give survivors a sense of safety, but at the time nothing like that existed.

I’d seen how well the survivors responded to body awareness techniques and knew that many of them wanted to practice walking more intensively. My class would give them a chance to observe each other and see how their bodies compensated for loss of function. It was important to develop those analytical skills so they could apply their observations to themselves. ARISE was based on an educational model, and my class combined learning with doing. It should have been a perfect fit.

“I just need the parallel bars and one assistant for this class,” I said, after explaining my idea at the staff meeting. “I really think it could help some of the more motivated clients.”

The physical therapist, Janet, disagreed.

“I don’t think we need a class specifically for walking,” she said. “I mean, some of the higher- functioning clients already have their daily assignment for walking.”

“I know,” I replied. “But this class wouldn’t just be about walking. It would also be about observing. It would help them slow down and concentrate on proper movement. They could experiment safely because the parallel bars would give them a sense of security. I’ve tried it before and they really loved it.”

“But we don’t want them to get dependent on the parallel bars,” Janet insisted. My proposed class crossed over into physical therapy territory, so I needed Janet’s agreement to make it happen. I tried to explain more clearly.

“When you’re learning how to walk again it helps a lot if you feel safe. It’s like when a baby is learning to walk and holds onto their parent’s hand. That doesn’t mean that the kid will become dependent on holding onto their mom or dad. The inner motivation is to be independent.”

“Well, I just don’t think it’s necessary. I’m already doing mobility classes. Anyway, walking is overrated,” Janet stated.

I stared at her in disbelief. Walking is overrated? I didn’t know how to answer without losing my cool. The audacity of the statement spoken by an able-bodied person left me speechless. How could someone who had never lost their mobility say such a thing? I understood that it was counterproductive to spend a lot of energy pushing severely impaired survivors to walk. Many of them might never regain function in their legs. However, I wasn’t gearing my class toward those survivors.

We weren’t talking about people who were born with disabilities, who used assistive mobility devices and lived perfectly functional and productive lives. Yes, in their case, walking could be considered overrated, but at ARISE, the survivors all had acquired disabilities. I could guarantee Janet that they wouldn’t agree with her assessment about the importance of walking.

I was trying to go beyond the approach to rehab that prematurely settled for adaptation and compensation. Most therapists I’d encountered seemed to feel that if a patient could limp awkwardly down a hallway or lift their arm as high as their chest, their recovery was as good as it was going to get. Conventional therapy was adept at getting patients to that awkward, somewhat useful level of healing. But it was the ease and subtlety of natural movement that was sorely missed by those of us who had lost access to it. My walking class was designed to help survivors reconnect with those nuanced parts of mobility. Janet didn’t agree, so I was overruled.

It was becoming clear to me that unless I got academic credentials, I wouldn’t be taken seriously by professionals who were in direct contact with stroke survivors. Personal experience wasn’t good enough. My goal of bringing ease and natural movement into the rehab process would continue to be dismissed unless I could back it up with book learning.

I started thinking about going back to school so I could gain more knowledge and put those crucial post-nominal letters after my name. If that’s what it took, maybe that’s what I’d have to do. Another choice was to view my time at ARISE as a rewarding detour and make my way back to the world of theater and film. I was at yet another crossroad.

To read the whole series start here:

Part 1: The Bleed - June 1990