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“How is she?”
That is, inevitably, the first question people ask me when I tell them that 9 years ago my mom suffered a severe stroke. “How is she?” It’s a simple question, and I’ve had a lot of practice responding, but I haven’t found an answer that works.
“She’s good,” I start sometimes, truthfully, and I can hear their relief. Perhaps that’s appropriate. She is after all in stable condition and good spirits. But it’s a very incomplete answer and I am then forced to surprise them. “She still has significant disabilities, with very limited speech and no use of her right arm.” They are left on unstable footing, not knowing whether to offer condolences or appreciation.
Other times I start with the facts of her ongoing disabilities, her difficulty with speech, and the acknowledgment that at this point she is unlikely to ever make a full physical recovery. When I start this way I often have to rush to cut into the heartfelt, well-meaning, but somehow misplaced sympathies they begin to express.
“No no, really we’re okay,” I say and mean. “She is doing well, frustrated of course but doing well and we’ve all adjusted. For us, it’s the ‘new normal.’” Of course, this leaves them unsure as well. Am I just putting a nice face on a bad situation to move past the uncomfortable conversation? I’m not. “Really,” I say. “She’s doing great. She just wrote a book, in fact.”
There seems to be a binary to “how is she doing” that, 9 years after my mom’s stroke, doesn’t exist in my mind. When most people think about rebounding after a medical trauma like stroke, they are thinking of physical recovery. “How is she doing” translates to “has she recovered her physical abilities?” That’s not how we think of recovery at all. Physically she is significantly disabled, but emotionally and mentally she may be stronger than ever.
My mom’s aphasia prevents her from expressing herself fully and doing many of the things she loves. But her journey and limitations have helped her take stock of what she values and create a built-for-purpose life of meaning that few of us have the clarity of mind to seek. As a family, we have come to believe that recovery is not about regaining exactly what was lost, but about bouncing back from a setback to rebuild a life of meaning — perhaps even of more meaning and richness than before.
Stroke survivors, like many others with disabilities or visible signs of trauma, or even simply with distinctive or minority physical appearances, are often treated with a “master identity” — a single characteristic by which others judge who they are. This tendency overwhelms everything we know about identity: we are not one thing, we are many. None of us can be reduced to a single defining characteristic or even a perfectly coherent ‘true self.’ We are an ever-changing mix of values and characteristics and experiences.
Most stroke awareness campaigns will focus on the prevalence of stroke, how to recognize it quickly, the ability to treat it effectively, and organizations helping survivors recover. All of this is critical to limit the damage stroke does to us. We should also remind ourselves to be more thoughtful and aware of how we think of stroke and trauma survivors. Their medical setbacks and challenges are an important part of who they are and how they are doing, but not the whole picture.
My mom is a stroke survivor, and she is many other things too. She has not been reduced to a disabled portion of her old self, and her recovery is not incomplete because she has not regained all of her physical abilities. She has been transformed, and yes in some physical ways diminished. But in many other ways, she has grown. She is a more attentive friend, an even more caring mother, a teacher in a new way to a new audience, and much of the time a happier person. She is certainly a different person than she was 9 years ago — like all of us as we age, adapt, and live through an unscripted life.
How is she doing? It’s a mix – some good, some bad. Some months are great, others not so good. Some days are fantastic, others incredibly frustrating. Some hours are spectacular, while others are awful. Same as you or me.
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