LYNETTE'S STORY:
So often when a famous person has a stroke or another brain injury, the general consensus is that the only possible happy ending is for that person to regain every bit of their former self. No one wants to believe in an unhappy, or merely a different, ending.
That became obvious to me in the years following my husband Rob’s severe left-brain stroke. Answering the question, “How is Rob doing?” with “Improving slowly,” or even worse, “Not good,” was always a fast way to get rid of someone or at least transform their expression into the classic “deer in the headlights.”
When former Congresswoman Gabrielle Giffords was shot and began her long recovery process, to cite just one example, media reports were full of Pollyanna platitudes about her inevitable return to Congress. When Rob and I saw her on television, though, we recognized her lopsided smile, lack of speech, and dependence on another’s arm for what it was: obvious signs of a serious brain injury. But when we tried to share that view with others, we were quickly shut down as naysayers.
I have no idea, of course, what the doctors told Giffords and her husband in the early months following her injury, but I hope at least one physician was courageous enough to tell them what Rob’s doctor told me: Professionals with severely damaged left hemispheres rarely return to work.
I was ultimately grateful to receive this information, though it was damn hard to hear at the time. It allowed me to help Rob with his recovery without holding onto the vain hope that he would return to practicing architecture. It allowed me to close his business instead of leaving his clients hanging. It allowed me to (repeatedly) tell his friends, family members, and would-be customers that, no, this talented architect, though just 45 years old, would never design their dream house or their new kitchen. So please stop asking.
In the dozen years since Rob’s stroke he has relearned to talk (haltingly), walk (with a brace), read (slowly), write (with his left hand), and drive (better than me, according to our daughters). He is living his life, traveling, riding a recumbent bike, taking photos, attending church, being a husband, raising his kids. He is an important part of our family and a stalwart companion to his stroke buddies and those friends brave enough to stay in touch.
I hope that Gabrielle Giffords’ family and friends are pleased with how well she has done in her new life, despite it being so different from her old one. She is no longer a politician, just as Rob is no longer an architect. But is their professional identity really the only important question to ask about them? Is it the only meaningful gauge of their recovery? Is it, truly, the only measure of their human success?
REFLECTIONS:
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This story points us to one of the chief difficulties of life with disability: the projections of others. This is the source of isolation, not the illness or disability itself. It’s ironic that disability seems to bother those who don’t have one more than those who do. Maybe, that’s over simplified. Maybe the problem is how rare and difficult a skill it is to put oneself in the shoes of another, to empathize. And when we do, we tend to simultaneously flatten and fetishize the experience of the other. We give too much power to the disability or illness, and not enough to the persons actually living with it. Enter the wisdom of withholding judgment, and instead cultivating the quiet skill of sensing.
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Strength is not the same thing as invulnerability. If something or someone cannot be hurt, there is no valor to their perseverance. A positive attitude that can only stay positive by not allowing in the tough stuff is not so impressive or helpful; it’s more akin to blindness or deceit. Daring to look and feel hard truths, and then responding with love, that is impressive and helpful.
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One of illness and disability’s great gifts is the permission it gives to change who you are. It even forces the issue. The idea of a person as unchanging or monolithic is only ever true if a person insists upon it, and then likely only from outside eyes looking in. We are squishy things, changing all the time if we dare to look. And how wonderful! We are affected; if illness or trauma shows us anything, it is that we are affectable, sensitive to the world around and in us. Part of—not separate from—the world. Imagine how lonely or boring the inverse would be. The least we can do for each other is to let each other change.
-BJ Miller, MD