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My name is Allison, I'm a 27-year-old diagnosed with Charcot-Marie-Tooth Disease, a genetic disorder that limits the functionality in my hands and feet. For a fuller story of my life with CMT, visit my blog at: Coming to the Terms. Last summer my symptoms worsened to the point that my doctor reco...
Go Fund Me update.
This is Allison. I don’t actually know Allison, but if you know me you’ve probably heard me say “God gave me legs, so I figured I’d use them.” Usually, in reference to climbing mountains or hiking unrecommended lengths.
God also gave Allison legs. They aren’t the best legs, but she wants to be able to use them. So we’re going to use science and Go Fund Me to upgrade them. Mobility is important, and those of us without barriers to our mobility tend to take the ease of it for granted. Send $5 or $10 Allison’s way, and then go walk up and down some stairs just to celebrate how easy that shit is for you to do.
My name is Allison, I'm a 27-year-old woman diagnosed with Charcot-Marie-Tooth Disease, a genetic disorder that limits the functionality in my hands and feet. For a fuller story of my life with CMT, visit my blog at: Coming to the Terms. Last summer my symptoms worsened to the point that my docto...
I started a GoFundMe to help pay for my leg braces.
There's no pressure for any of you to donate and there are many greater causes out there to support. I'm lucky to have been able to afford these braces at all, but I was only able to do that because of my parents' willingness to support me. I want to alleviate the stress of such a high price, even a little bit.
Atrophy
I stopped wearing them to work this week. I love them terribly, but I woke one day to realize the muscles in my calves were the consistency of jelly, wobbly and loose, all skin and shin. They were atrophying, and scared I pulled a pair of old black boots from last winter out of the depths of my closet, secretly happy they’d survived the post-brace shoe purge.
They are not good boots, worn in the bad way my feet wears down shoes - the left heel off-balance and slick. But they are better then most other shoes I own and they fit my feet without braces.
Once I realized what was happening I went to the gym, three times this week, pushing my legs on the elliptical, feeling the lack of strength in the inability to do calf-raises, in the wobble as I walk from machine to machine, unsure.
As I eased into wearing them, they became a given - they are still a terrific godsend. I find myself trolling around my neighborhood with an ease reserved for athletes. I have no hesitancy about walking two or three or four or five blocks to the bar or the restaurant with my roommate or friends. I am not worried about tripping after a few drinks, not worried about being too tired to get home. They are sweet human freedom made of carbon fiber and plastic.
But I also started wearing them to work every day because I liked floating around the office, motoring myself from desk to desk, shirking the use of my muscles - what minimal use they get anymore - for that feeling. But I don’t think I need them at work, where most of the time I am parked at my workbench peeling adhesive off the spines of books and sewing pages. It is true I feel very tired at the end of the day when I don’t wear them, an overall fatigue that I don’t have on the days I do take them with me. On those days my energy is boundless and I am more alert, more personable and present.
But what is the balance? I cannot wear them all the time, because whatever the future holds I still have my legs and control of the muscles in them. I don’t want to loose what I have, and I’m a little afraid once gone, it’ll never come back.
I am going to call my neurologist next week to set up physical therapy appointments. Until then I leave them at home like a sad pet, who I walk after work, up and down and up and down and up and down the block, walking over and over and over and over again.
What Dumb Pleasures
For the first time today I wore the braces for a full 8 hours, hidden against the background of black jeans, mostly hidden by a pair of tall, black boots. I don’t wear them to work except on Saturdays, when I am the only one in the office and have to carry large sheets of board from building to building for cutting.
It is freeing to move around the office so easily, to carry large shiefs of prints from table to table, or stacks of heavy quartos. To be able to walk across the neighborhood to that one coffee place you like, but is usually always a little too far to get to on your lunch hour.
When I am walking down the street with them hidden in my boots I forget I am wearing them and the world opens with the freedom of walking. I could walk for miles, I have no fear of walking too far, or being too fatigued to get back. I can move and move in the cool, fresh air for as long as I desire. What dumb pleasures this world contains.
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I recently found a photograph of myself from five years ago. I am walking across a plaza in Barcelona, a shawl wrapped around my arms. I am facing away from the camera, the back of my head in a messy bun, and on my feet a pair of brown Chuck Taylors. The most remarkable thing about this photo, and the thing that make me audibly gasp when I saw it, is the angle of my foot. It is mid-stride, pointed at a 90-degree angle to the sky. This is something I cannot do today.
There were things I did in the not distant past that over the last decade have become impossible, slowly, so that I did not notice them fading away. When I lived in Ireland I walked every day, everywhere, a mile to campus, a half mile into city centre. I once walked four miles from a house on the outskirts back to my apartment on the quay while the sun rose over the rooftops and the world woke. I did not struggle to keep up with anyone, or not often, as we spent our lives on our feet.
In a very real way I feel as if all the fading ability had imparted a growing anxiety about everyday tasks - walking to the store, going out downtown, being able to carry a box - that seeped into every aspect of my life. I did not even notice it was there, but now it falls off like so much dead skin. I can silence the tic in my mind, the grain of worry that so often gnawed at my thoughts, always in the background, a low-level buzz.
It is not just about being able to walk better, it is about feeling secure in my ability to take care of myself, to get where I need to go, to do anything asked of me without the anxiety. Something had begun to weigh on me and I did not even feel it, but now that it lightens, now that I have the ability to control it, so much is lighter.
So much is gained by wearing the braces, more than I could have imagined.
Training Wheels
On Saturday at 8 am, I stumbled into my house, rickety moving up the concrete stairs to the porch. The night was spent at 30,000 ft. in a metal tube wedged between my mother and a stranger who would not stop squirming in his seat.
I wore the braces onto the plane, since it was easier than carrying another bag, and stowed them under my seat as I slept. From the first step I took to them like a fish to water and the more I wear them the more I find myself able to guide my feet and feel fresh confidence in my movements. When they are on I stand straighter as I walk, I look up more at the things around me, I see people’s faces when I pass them.
I have made a conscious decision to have no shame about wearing them. If I want to wear a short spring dress and the braces, then I will, which I did on Sunday when I bought sweet corn and a baguette at the farmer’s market under 83. A man with a cane and a limp stopped me on the sidewalk there and asked me about them, and I handed him Mitch’s card.
Driving makes me hesitant since I cannot press down on the gas pedal when they’re on and instead have to move my entire thigh. This is not so very different from how I drive normally, except that judging the pressure on the pedal is harder with the brace on and I find myself driving slower out of sheer lack of force. Mitch assured me other patients learn driving quickly, but I would rather take off the right brace when I drive.
My one qualm is about wearing them to work. I would love to walk to work in them, but wearing them all day is tiring. (Regardless of the fact that I am still getting used to them.) On Monday I wore them under a pair of jeans and it became annoying very quickly. When I’m standing, or walking, or moving they are like a dream, but sitting is different and I sit a lot at work. The fixed 90-degree angle pinches the vein on the top of my foot and I long to stretch out my toes. Crossing my legs causes them to clank and refuses any comfortable position, while I normally sit with one foot folded up under me anyway, which is impossible with the braces.
I have also yet to tell my coworkers anything about them, which I know I’ll have to mention sooner or later, but it’s an odd thing to bring up. I simply don’t know how to do it. They are good people and I love working with them, but I really have no desire to dredge up all my troubles. Not that they will ask for more information than I volunteer, but still, I have pause.
On Monday I also noticed how weak I felt after wearing them for an extended period. Getting used to my normal flop was hard after the ease of movement while wearing them. Maybe the weakness is simply more noticeable in contrast to the strength I have while in the braces, but I also know overusing bracing can cause muscles to atrophy faster - the brace is effectively replacing the muscles that no longer receive nerve signals. At Mitch’s advising I didn’t wear them to the gym, because the stability of the elliptical gives my natural muscles a chance to work without the fear of falling down. He also advised that they are not Excel braces, which are made for sports, but I/E braces, which I chose because on the whole I am not an overly active person. (Not to say I cannot use them when I’m active, just that I don’t do that level of activity very much.)
On the whole I am excited to wear them. I have such a rainbow of leggings to buy, and I found a beautifully complimentary pair of black boots over the weekend. Today I took a 10-block walk as if it was nothing - a stroll in the park. I was hardly tired when I got home. My god, is this what it’s like to move? I want to walk everywhere.
Vegas Update Two
I have them. They are standing in my shoes next to a chair in the hotel room, like robotic legs at attention. My appointment was at 3 pm today, so mom and I took an early morning scooter tour of Red Rocks Canyon, where I tipped over the scooter once and fell twice, luckily without breaking skin. (A VERY HIGHLY RECOMMENDED tour nonetheless. If you are in Las Vegas, do it.) I am hoping it will be my last fall for a very long while.
The braces are lightweight black helixes that cross around my calves and swoop right below the knee. They are elegant, in a way. After taking out the insoles, Mitch installed small foam lifts in my shoes and I put on the orthosis. Standing is stable and the foam cradles my foot in an unexpectedly cushioning way. The most surprising part, though, was that nothing irritated my left ankle. I cannot name a shoe I’ve had in the past 10 years that did not irritate my ankle, but the carbon fiber on the brace is roomy and my foot no longer rolls, so there is nothing to hit or irritate.
Mitch had me walk back and forth between the parallel bars for a few minuets, and the heel-toe stride came back in an instant. I didn’t have to hold the railings at all, and I was pacing the hallway soon enough. They feel strong and steady and solid, like working casts. It is easy to rely on them, which is the purpose, but which also goes against my nature. There is much more of a mental block than a physical one, but I ignore it and stick my feet out into the air. To move in them I am fast and my upper body glides, but my feet and legs feel clunky and stilted and I worry I am bowing out my knees, but Mitch and my mom assure me that my gait and appearance looks entirely natural.
I am ready to wear them everywhere, around the room, around the hotel, around the casino, around the street, but Mitch said only an hour tonight and tomorrow I will learn such advanced movements as curbs and stairs.
I’m excited to wear them everywhere, to get up early and walk to the farmer’s market and get coffee at the cafe and do many, many things that have been terribly stress-inducing for far too long. Tomorrow I eave this town with my beautiful new helices.
I'm more machine now than man.
