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In my dreams, I walk. My gait is unreliable, the terrain always tricky, but I walk.
I used to be five feet eight inches tall. Now I am four feet two, eye level with your arse. Mull that over. I’ve been sitting for four years. I chose a chair with red spoked wheels to communicate something other than tragedy. Chairs speak so loudly, it’s hard to get a word in, but I tried.
There is no treatment for primary progressive multiple sclerosis; the market is too small for Big Pharma, since only a sliver of people with MS have this malignant form of it. I do not have an Option A.
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I'm raising an unusually kind, empathetic child. She’s five now. She likes to know that the places we go have ramps for us. When her little friends have questions about my wheelchair (and they do), she wants to give the answers, not me. Whenever she spots someone else in a wheelchair—on TV, on the street, in a book—she yelps and makes sure I see it too: Mama is not the only one. She likes helping. I don't make my problems hers, but I want her to know she always has the power to help.
My Option B was moving from a Victorian duplex I loved to a single floor that an architect, my spouse Elizabeth, and I redesigned for me. I’m grateful every day that I could change my environment like that. Many people can’t. I’ve grown to love our new home more; even if I miraculously woke up tomorrow morning and didn’t see the wheelchair next to the bed, I’d still want to be here.
I believe technology will help me walk again before medicine does. People suffering from many medical conditions and the military want exosuits for different reasons. In a couple of years, a lightweight exosuit for people with stroke and MS ought to be available; I'm watching its progress. If I’m to be ready for it, I need to be stronger, learn to be upright again, and reactivate all the standing muscles that sitting has put to sleep. So I am starting an aggressive rehab program this summer. I’ll show the therapists pictures of the exosuit and ask them to share my goal.
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