Last year, at the beginning of CMT Awareness Month, I wrote about changes in my life — with my Charcot-Marie-Tooth disease, with my routines, with my career. This year, as CMT Awareness Month comes again, I’m in the midst of more — and more unexpected — changes.
My new personal care assistant just left for the day, and the last thing she said is still sitting here with me.
“It’s been a really long, really hard day,” she said. “It was so nice to end it with you.”
Somewhere in there, in a way I can’t quite remember and so (always a journalist) can’t directly quote, she called me “positive” — not, if I’m honest, a word always associated with me. At least not lately.
A few months ago, very quietly, finally, at the end of a Tuesday-night dinner, the relationship in which I’d been — loudly, messily, happily, strangely — ended.
It was not what I’d planned.
Of course, after living with Charcot-Marie-Tooth disease for 16 years, I know a few things about the unexpected. I know about change, and disappointment, and loss. Last year, fully unable to flex my ankles, I lost driving — that was a big loss. New finger contractures meant I lost changing the bed sheets, too, and zipping back-of-the-dress zippers.
I have rare problems. I have common problems, too.
In six weeks, I found a new apartment, formulated a new plan, or at least a rough draft of one, for it: new bookcase, new bed, new desk, new throw pillows (too many new throw pillows, really). Everything slipped into place.
That was the easy part.
Harder was finding a way to make up for what had been my everyday. Like most couples, my ex-partner and I had our own routine; the needs my disability required were built in. During nearly three years, we adapted together — I didn’t really have to request much, and if I did, it was already known, anticipated, accepted.
The first week in my new apartment, I did things I’ve since hired someone to do. I mopped. I vacuumed. I made the bed. “Do I need someone to do these things?” I asked myself. “Am I just being lazy?”
I fell doing each of the tasks — twice when I lost my balance walking backward with a wet Swiffer; once during vacuuming when I caught the toe of my high top, which with CMT always hits the ground before my heel, on the bedroom carpet; twice again on the carpet while bending over to make the bed, a stumbling process that’s more accurately an artful arrangement of sheet beneath duvet as I can no longer make my hands flat to tuck in a flat sheet.
This is, admittedly, daunting. I have quirks and ways; I’m learning I don’t have to apologize for them. I can assure you: The people you know are actually wondrous. When I reached out to people I hadn’t before — couplehood is very insular — I suddenly, unexpectedly, found myself with a wide, willing network.
Through it I found my personal care assistant and an agency through which I can enlist additional assistance when I need it plus support navigating insurance coverage. I found Uber drivers who offered to move me from here to there off duty, acquaintances ready to pick up groceries or help with heavy lifting. I found my best friend is, actually, the second sister I always believed her to be. I found my parents are, 35 years in, still parents — they ask about my days and listen, encourage me, include me.
The hardest parts of life, now, are the unremarkable parts — sleeping, eating, sitting on the sofa. The things I do alone, again, newly, in the quiet.
I have only normal attempts at adjustment to this — self-care, nutritious food, new routines. Every other day, I do a chair-based workout (more difficult and more energizing than one might suspect). I cook most of my own meals and eat each one at my high white counter without my phone or a book, challenging myself to chew mindfully, to savor. On Sunday mornings, I put on a new or favorite podcast while I browse recipes and meal plan for the week ahead. I’ve started to schedule one outing every week that’s not an errand or a doctor appointment — a dinner or an art event or a movie or just a wander through Target, sometimes with a companion but mostly, essentially, by myself.
These are not new things. They feel new. I feel new to myself again, after all this time, remembering things I did before, things I like that require just an impulse and, most of the time, just my own two hands (such as they are).
This is not what I planned.
But I’m still here.
I don’t know, yet, what life will be now, what I will be. But today, in the moment before that discovery, there’s reason to believe things might be OK.
I might be OK.
I might be, after the longest, hardest day, positive. Hopeful. Happy.
Maybe today. Maybe, in a little while, again.
Lindsey Baker is the digital marketing manager for MDA’s National Office. She lives and works in Omaha, Neb.
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