A year after my stroke I decided to start a stroke support group in our town. Being an introverted person with a demanding job, I really didn't want to do it, but as a stroke survivor who had escaped more or less physically and mentally intact and had learned a great deal about stroke after the fact, I felt an obligation to help in any way I could those who were trying to navigate the great dark unknown of stroke recovery.
Our town has a hospital that serves as a regional medical center for surrounding counties, but I had participated in a stroke support group in the inpatient facility where I had rehabbed, and had found it boring and uninformative, so I decided to form one that was independent of any institution. Fortunately, the leaders of our church were enthusiastic about the idea and offered the use of a community meeting room with tables, chairs, and a kitchenette. They even made sure the group's location and meeting time were publicized in the community news sections of the local newspaper and radio stations.
So at six p.m. on a Tuesday, Polly and I opened up the meeting room, set out brownies, made coffee, and waited. One person showed up. Her sister had recently survived a stroke, but had suffered significant physical and cognitive impairment that included aggressive, combative behavior. Her husband had put her in a local nursing home, but her disruptive behavior had led to her being kicked out, and now she was in a smaller nursing home in another county that offered no therapy programs.
Polly and I listened to her and sympathized, but neither of us had any useful advice to give, so after an hour she left with the leftover brownies. We kept the support group going for another six months, but no one else came. I was disappointed, since dozens of people in our town had strokes during that period, including several in our congregation, and I believed that Polly and I had useful information to offer survivors and caregivers.
Later on, though, I thought more about it and decided that it was for the best that the support group hadn't succeeded. The reason I had started it was to offer advice about stroke recovery beyond the platitudes and clichés offered by stroke professionals. But could I have been so honest? Could I have punctured the optimism of recent stroke survivors and their loved ones by telling the truth as I've come to know it?
Could I have told a woman whose sister was in the same situation as the woman who came to the support group that her sister's situation was bad and would only get worse? Could I have told her that unless someone in the family was wealthy enough to pay for her sister's care that the only option for her was a facility that accepted Medicaid and would accept anyone, no matter their condition, and in such a facility she had no chance of ever improving and the best they could hope for was that she wasn't abused before she died a quick and peaceful death. No, I couldn't have said that, but it was what I believed.
Could I have told survivors that if they couldn't use their arm, they almost surely never would; that if they couldn't walk, with a lot of work and the use of AFOs, canes and walkers they might sort of be able to, but not the way they envisioned walking. Could I have told them that they likely would never work again, or probably never drive again.
Could I have told caregivers that if their loved ones had significant cognitive impairment, it would probably always be that way. If they couldn't eat a regular diet, they probably never would be able to, that if they were impatient and abusive, they probably always would be.
Could I have said all that? No. Maybe if I ever try a support group again, I'll name it a Stroke Reality Group and issue a disclaimer saying that attending could lead to disappointment and depression and hope that I get lucky again and no one comes.