Supplemental information for the article with the same title published in the January/February 2010 issue of Stroke Connection magazine.
My name is Arthur Gottlieb, and I reside in Long Beach, Calif. I have worked as a teacher, an industrial engineer and an attorney, but those identities are long gone.
However, there is another identity that will be with me forever: stroke victor. When the disease first struck, I was a stroke victim. When I was able to leave the hospital with my family, I became a stroke survivor. Now, after 27 years of involvement with stroke support groups, I see myself as a stroke victor. Let me explain.
I knew almost nothing about stroke before I had one. I had heard the word used to describe something that injured people when they got very old. Even my doctors, who saved me life after my stroke, didn’t teach me much about this cruel, mysterious and dangerous illness. My education began the day a stroke-survivor friend took me to my first support group meeting. Looking back, it is incomprehensible to me how anyone can overcome the psychological and emotional setbacks of a stroke without the help of a support group. And that goes for caregivers as well. The forced identity change from loved one to caregiver can be as stressful as a stroke itself. For that reason, at our support group's weekly sessions, caregivers come together and meet separately.
During my 27 years of stroke survival, I have made acquaintance with dozens of support groups and many hundreds of people affected by stroke. My fortunate recovery made it possible for me to become a facilitator of one of the oldest groups in the country. At our meetings here in Long Beach, the survivors identify with each other in ways that do not exist in the outside world. Each person patiently waits as someone with aphasia, for instance, struggles to formulate and communicate the thoughts that exist within a still healthy mind. Each member assists others along the path to recovery, commiserating over their disappointments and cheering their successes.
Perhaps most important, we become a new and loving family for those attempting to win the most ferocious battle of their lives: the struggle to return to a meaningful life. We help each other find ways to adapt to losses and move forward. The word “can’t” is struck from our vocabulary. It is replaced with words such as “I’m working on it” or “I’ll beat this thing.”
What could be better than witnessing a woman in our group, whose right hand had been a claw for years and whose speech had been limited to a single word, stand before us, her friends, and say, “Watch this, everybody,” then raise her hand, open it fully and then close it softly. Nothing could be more satisfying than the shouts from those of us with voices, the applause from those of us with workable hands, or the foot stomping of those with neither.
That, my fellow survivors, is why 27 years post-stroke, I still attend a stroke support group.