Coming to the Terms

A chronicle of living with Charcot Marie-Tooth.

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Click here to support Allison's Leg Braces for CMT by Allison Fischbach

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.

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A Brief Reflection on Hands

This week has been chill and damp, and the A/C at work is continually running in firm anticipation of warm weather soon, soon, soon. I have been finishing up my Stone Lithography class and plodding through Chemistry. All my prints are printed and most of my homework is done. My right hand has been uncooperative these last few weeks. It likes to become unfirm, flimsy, likes to have a soft grip on the pencil on the pen. When it is cold it is worse, my handwriting falls apart and I switch grips like a toddler with a crayon. I am annoyed I cannot control it. It seems to me that it's been getting worse these past few months, this hand, both hands, but mostly this one. I push it to the back of my mind, but it's there, a scurrying thought gnawing amongst all the other stressors of my life. It doesn't hurt, but the muscles ache with cold. I try to wear gloves at work but I hate the loss of my already ailing dexterity. I tell myself when the warm weather finally comes it will feel better, but I don't know if that is true. When I sit still it feels like an extra appendage that I cannot quite control, a lump of flesh on the end of my arm that it is easier not to use. I downloaded Lemonade a few nights ago, and sat in the living room of my house head back on the couch with my good headphones and tried to raise both middle fingers. This is what I knew, this is what I expected. It's hard to do, it's hard to pull my fingers back and stretch them out. To raise one finger without all the others. The muscle won't pull back when I tell it to. It's like a form of numbness, not in the skin but somewhere between the intention and the action. A loss of feeling for movement, a hollow place where I used to be able. I held my fingers up to my boyfriend and showed him the difference, how easily my left hand pulled back, how hard it was on the right. I do not think he saw anything, but he frowned and he touched my hand, rubbed his thumb on the bony palm. I trust myself in this. He asked if there were exercises I could do, this fundamental misunderstanding of the disease. There is no way to exercise the failing nerves. I stretch my hands out on each other, on the tabletops at work, I pull the muscles against each surface and will it to stay pliable. I try to think of my feet the way they used to be, what it was like when everything started failing, that frustration that has vanished since the braces. That doesn't worry me anymore, mostly because I have gained back all those things that I lost, all my freedom and movement, only to have it spring up again in another place. What will I do without my hands? What can I do?

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Click here to support Allison's Leg Braces for CMT by Allison Fischbach

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.

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“Do These Genes Make Me Look Fatless?”

Act One of this episode is a great piece about the various manifestations a genetic neurological disease can take. (And if you don’t regularly listen to TAL already, rectify that.)

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The Baltimore Branch of the CMTA will meet next on March 6th at 2PM at the Towson Branch of the Baltimore County Public Library. Our guest speakers will be Johns Hopkins Neurologist Dr. David Cornblath and GeneDX Representative Alexander Davis. We will also discuss the upcoming Oxford Biathlon. See you there!

When your neurologist is speaking at your branch meeting of the CMT Association, you feel good that you finally found the right doctor.

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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.

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A Story in Many Parts

I am going to start unpacking some thoughts about my father’s MS. This is a subject I do not talk about, but it is something I have to learn to deal with better. I think it has a larger influence on me than I’m willing to admit, and it is probably something I should be seeking professional help for.

So forgive me, things are going to become very raw and very hard to write, but it helps. It really helps.

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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.

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My Grandfather’s Hands

Someone told a few days ago that I had pianists hands. I can see it, they are long and elegant and the skin folds closely over the bone and sinew, the nails are large and thick and clean, vaunting over the tops of my fingers. The wrists are thin and my blue veins shine in the thin skin before flowing in the opaque porcelain of my arms.

My hands are probably my favorite features, and I like decorating them with rings and bracelets and tattoos. They tell a story, more than my face, and it is a story I can read every day. I see my hands more than any other part of my body - they are my first tools for taking and giving and expressing and working.

My mother says they are my grandfather’s hands, her father’s, who had the long, strong, sinewy fingers and wide nail beds. He used them to create screen prints and window dressings, painting and sketches. I did not know him, he died one afternoon during a nap in his living room twelve years before I first took a breath. I am told he was a joyous, humorous kind of man, rash in his youth and supportive of his four daughters, however much he also ascribed to keeping his wife out of the workforce. It’s easy to idealize our beloved dead, so however many stories I hear to his positive qualities, he was also a person as flawed as the rest of us and I see him in my hands.

Using my hands is important to me; I have never had an ear for playing music, but I tried guitar for a time, and I liked the feeling of moving my fingers into chords and notes, of using my body to create, of nurturing muscles, of training movements to produce sound. I wish I had more of a talent for it.

In high school and college I would use them to embed charcoal lines, smudge shadows, trace graphite tracts and swirl pastels onto cottony paper. For a time when I was young I wanted to be an artist and my youthful attempts at greatness still hang around my parents’ house in frames far too expensive for the amateur content.

But when I found typesetting and bookbinding I found my love, in using them to hold cold metal blocks, to place slivers and squares in precise order, to set heavy wooden furniture, to roll and pull and press and ink, to cut and square and puncture and sew. There is a mechanization and a tactile art, married. I like using the machines, palming the cold metal levers, and I like using my hands to finesse waxy threads through spines and covers.

Since I’ve made bookwork my career callouses have formed across the palm and under the third joint of all the fingers on my right hand, traces in the form of a bone folder. I love them like they are tattoos. My fingertips and knuckles are marked with flicks of scar tissue from every instance of accidentally taking the x-acto to my own skin, a knick or a slice.

What I love is that they are working hands and the satisfaction I take from using them, the zen-like mechanics of repetitive motion that become habitual and seeing the work improve from repeated practice is satisfying on a level I have never had in any other job. Reading and writing, being what I have always loved, pale to me now in comparison to the tactile work. It feels like a true, physical skill.

Which is why they are also not my grandfather’s hands, or an artists’ hands, or anyones hands but mine. They are weak and delicate and thin, and getting worse by the year. Already the fleshy pads around my thumbs are decimated, bony and flat. Sometimes I do not have the strength to hold the needle between my thumb and forefinger, or pick up a piece of paper from the floor without contorting my hand to compensate. The thumb is weak in some movements, the nerve pulses almost nonexistent, and when the weather turns cold and wet they ache and stiffen like hands three times their age.

Compliments for my hands are rare, no one compliments another person’s hands - that is an intimate comment, a personal notice. Hands are objects for the owner, unlike faces, which are objects for an audience. We greet each other with our faces, and communicate with our expressions; we check ourselves with our hands, we reach for our own objects, we smooth our own clothing. Placing hands on another person is intimate; here is a part of me for you, and to have the other person see them is deep and penetrative. My hands are the most intimate part of myself, and a very public one at that.

Here is the story they tell: my fathers, my passions, my condition, myself.

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My Only Carriage: On Naming a Nameless Disability - The Toast

Emma Bolden on finding a name for her disability, and the ways in which it affects her everyday thoughts, actions, and perceptions.

Another beautiful piece about invisible disabilities from the talented ladies at The Toast.

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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.

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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.

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I'm more machine now than man.

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Vegas Update One

We stepped off the plane into a 98 degree night, and rolled into our hotel around 11.30 central time - an easy 2.30 a.m. in Maryland. At night, this city is a disorienting mass of color and movement, even inside the building where there is a pool of slots and video poker machines ringing under a din of thumping music.

We’re staying at the Westgate, a massive three-pronged building set off the strip. Monday morning we discovered our breathtaking view of the sunrise over apty-named Sunrise Mountain.

The first appointment at Ortho Rehab was at 9.30 Monday morning. Michelle was just as effervescently chatty as she was on the phone, but I felt a pang of trepidation as we arrived, a doubt about coming all this way for a set of AFOs. But at a point of no return all you can do is go forward.

Mitch took video of my walking gait, including the supination and high-stepping, and asked me some questions about how often I fall, why I trip, etc. etc. In the grand scheme of doctor-interrogations I have undergone, this was a very casual, comfortable conversation, and brief, but I didn’t feel rushed or as if I was omitting important things.

To my surprise he cast molds that day. I sat while wet casting wrappings were wound around my calves and feet. Mitch pushed my foot into correct alignment and waited for the wrappings to set before sawing them off with a cast saw. The whole appointment took a total of maybe an hour to 90 minuets. He explained he would have trial braces the next day, which I would try on in the office to test fit and pressure points. After that, we were free for the day.

There has been a lot of down time here, which I noticed when Michelle sent me the schedule, but I don’t think my mom registered, so we ended up cruising up and down Sahara Blvd. looking for a grocery store. In the end we would up out in Summerlin, an upscale suburb to the north the creeps into the mountain foothills.

I barely glanced at a map before we arrived, so it was a shocking surprise to wake up Monday morning to find myself surrounded by mountains. A part of me itches for bare rock and the drastic striations in the mountains are breathtaking. They are sandy tan and saffron and sienna, richly colored clay-like shades. I want to touch them, they seem so close but at night I know they are far, where the flat expanse of city light ends abruptly at their base. Today clouds floated over their tops, casting dark spotty shadows on their sides. Capturing them on my iPod camera is impossible, they are beautiful and distant and eternal in their circle.

Last night we traveled down to the Strip and wandered through the maze of casinos and sidewalk. It felt futuristic and surreal to pass through hotels loud and bright, each part jockeying for your attention, winding from building to building without ever stepping outside. The buildings seem massive and monolithic, but they must be comparable to the skyscrapers of New York, and yet against the background of flat, wide desert they seem larger than anything I have ever seen, their shadows stretching out in long lines. Four- and five-story neon signs are commonplace. The sign for our hotel could be it’s own hotel in Baltimore.

The scents here are noticeable too - in any other city I have smelled sweet trash and sweat and rot, but here the air is perfumed. Along the Strip everything smells like new sneakers, and in the Cosmopolitan there is a circulating scent of freshness, not sweet but pleasant, a little like men’s cologne. Our hotel has a lingering cigarette smell in the lobby, but outside the air is dry and clean, unless the wind is blowing from the hotel grill and then everything smells like cooking meat.

Today we slept in, and arrived at Ortho Rehab around 11.00 a.m. for our appointment. The trial braces were white shells that cupped my arches and heel and ran up the back of my calf, before circling around just below my knee. They do not look like the finished product and they are made of a harder, less flexible plastic. Mitch had me stand for about 5 minutes to see my posture and test the feel and I noticed my arches touched the bottom of the brace as my supination was corrected. They felt incredibly comfortable and steady. You don’t notice your habits, or your compensations, until someone points them out, and I noticed now how often I shifted my weight, or locked my knees, but for the first time in maybe 12 years I didn’t have to do either.

I took my first few steps around the room, up and down between parallel bars, walking heel-toe. I began to lift my head and straighten my back and my hips fell into alignment. I cannot believe how smoothly I moved - I could have held a cup and not spilled. My gait was still stilted by the inflexible plastic, but I was ready to walk out the doors with the test braces nonetheless. Before I left I was pacing the office hallway in loops. The relief was amazing, swelling, I wanted to run. I could have walked forever.

There were a few pressure points on my left foot and ankle, which Mitch marked for creating the final brace, but my right foot felt as if it was in a glove, comfortable and cradled. Taking them off left me disoriented with my old flopping gait.

In the car in the parking lot my mom started crying, and I began crying in a madness of tears and joyous laughter. I hadn’t walked that well in years, the idea that I could ever walk that well was an astounding, relief-inducing cause for wide-eyed excitement. Thursday cannot arrive soon enough.

Mitch recommended a place to find new shoes that will hold the braces and we headed over there for another fitting. I feel trepidation about these new shoes mainly because they are brightly-colored running sneakers, and I’d rather they were some innocuous solid black if I am to wear them most of the time. I suspect I’ll be exchanging them for something less flashy in the end.

I spent the rest of the afternoon in the pool, where you could order drinks and the bar and lounge around drinking them in the water, under a light blue sky dotted with the silhouette of palm fronds. The air conditioning in the hotel often gets so cold my legs ache, but the dry heat is rejuvenating and the sun de-thaws my frozen limbs. The high today was 105, but I felt comfortable and hardly sweated at all. There is no humidity to the temperature, no swampy mass of air to cling to your limbs, no over-saturated air to breath through. I can see the appeal of this kind of climate.

When the sun began to set we went to the observation tower of the Stratosphere - at 109 stories the view of Vegas is incomparable. I am a sucker for thrill rides, but the wind shut down the spinning gears of the Insanity, so I rode the X-Scream off the side of the tower and into the air of oblivion, staring at the sun over Mt. Charleston and the ground far below. It was a good ride, but not as mind-obliterating as I expected, but then again I was not in the front seat facing the ground head-on.

Tomorrow is Wednesday, fabrication day, which means I don’t have to be there at all. Instead we are headed to the Grand Canyon for sightseeing.

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Viva!

I’m here! A lot’s been happening. I’ll update you all when I get back from dinner/hurling on the Stratosphere.

[comingtotheterms-blog]

Bon Voyage!

[comingtotheterms-blog]

Size of Self

When it comes to body image I like to think I have a pretty healthy one, which is remarkable for the extended period in my life (see: most of it) in which I did not like my body very much at all.

I know I was an average size kid, but there was a point in late elementary and early middle school were I was constantly uncomfortable in my skin. Whether I was actually overweight or whether I just felt that way is hard to me to figure out even now. There are photos of me that are not egregious in their heft, but I was not a slim. I hated gym class and organized sports, because I knew I was not going to be the fastest runner or the best player, not even in the top 50 percent, and that kind of self-awareness can be demoralizing at a young age. Not that I was demoralized in other aspects of my life, but physical education was rarely something that I enjoyed, more often that not it was something to be endured.

My parents even enrolled me in little league baseball for two excruciating years, in which I protested every game and practice. At one I game I simply refused to play and had to be coerced onto the field. I recall a coach asking me how I would feel letting the team down, and I remember thinking “I am no benefit to this game! No one else cares if I play or not!” To this day I stand by that sentiment.

Even playing with neighborhood kids my own age I was always one of the heavier kids. I didn’t fit into other kids’ clothes and I couldn’t run as quickly. At some point I stopped wearing shorts altogether, supremely self-conscious about my thighs. I had a pudgy stomach and shirts constantly clung to my skin, showing off the extra weight.

In hindsight, I’d like to attribute my lack of athletic skill to the CMT. There are times when I am sure it affected me - no matter how hard I pumped my legs my stride was never very wide, and I ran slowly as a result. Maybe the lack of speed morphed into a hatred for the entire enterprise. Maybe I could have been a healthy, or at least relatively average child if I had the ability to perform, but I can’t say anything for certain.

When I had my first surgery, before the diagnosis in 2004, I was a junior in high school. I can’t say I was overly self-conscious in high school, even when I continued to have reservations about my size. I was not popular and I did weird stuff like dye my hair neon orange and wear my homecoming dress to class. I can’t say I did these things for attention, I was shy and reserved around most people - I didn’t often answer questions and I dreaded class participation grades. I don’t recall ever being harassed or bullied, but I knew I was not thin or pretty, so at a point I simply stopped trying to be either of those things. Really, I think a part of me always wanted to be a bit of a badass, but my personality never got the nerve to be mean, so I ended up in a weird flux of personal style. To her credit, my mom let me wear whatever I wanted and didn’t say a word (even when she probably should have.)

After recovery and cracking the cast off I signed up for weightlifting to fill my gym requirement, mostly because I figured it would be the class with the least running. Most of the class was populated by football players and members of various sports teams, and then there was a small contingent of awkward girls and me. To it’s credit, it was a good course and no one ever made me feel unwelcome or intimidated. The teacher was the football coach and went hard on his players, but taught me a lot. I really liked weightlifting and it gave me the confidence to continue a regimen. It’s a form of physical activity I can do, that challenges me personally, is noncompetitive, and the CMT gives me no palpable disadvantage. It was the first time I had found that kind of physical outlet.

A year after surgery, going in to my senior year, I was diagnosed with CIDP. I began the IVIG treatments that would plague my next ten years, and I started taking prednisone daily, in bitter pills whose taste stuck with me for hours. Prednisone, if you have never taken it, is a steroid used to manage some aspects of IVIG treatment. It’s biggest use is to mitigate nausea from the IV drugs and it is said to prevent nerve pain.

However, the laundry list of side effects is long and I was unfortunate enough to manifest most of them. In my final year of high school and into my freshman year of college I started to have headaches, insomnia, dry mouth, severe acne on my face and back, water retention, “puffy face”, loss of appetite, and a dizzying spiral into depression. To top it all I gained about 20 pounds between starting the drug and finally stopping it, over a little more than a year.

I entered college with all these myriad effects in play, knowing no one and frightened that no one was actually getting to know me. I felt as if I was existing in a false suit of myself - I was not this puffy faced, acne covered girl who cried all the time. I was a smart person, with a optimistic disposition, but I was trapped in a well of self-consciousness. None of my clothes fit and I lived in sweatshirts and jeans, sitting in my room all day worried my formative college experience was crumbling around me. When I first voiced concerns to my doctor he told me the drug wasn’t that bad and I just needed to exercise more. I did for awhile, but it was foolish and shortsighted of him to think I was over-exaggerating my experience.

Eventually I found relief at the student health center, started counseling, and went on antidepressants. It was six more months before I has the impetus to stop taking the prednisone. I later learned just how dangerous this was; prednisone is a drug that mimics the body’s products of certain natural steroids. Sometimes when the drug is suddenly stopped the body doesn’t pick up the slack and you can get very sick. Doctors wean their patients to help kickstart the body’s processes, but I just stopped. I flushed the pills down the toilet and I didn’t tell anyone. I have no regrets.

The water retention and the puffy face disappeared, but I was still overweight all through college, which is not uncommon given the ease of the dining hall and the lack of physical activity. I didn’t play sports and most of my spare time was spent lounging around the campus literary center. I figured at some point this was how I was, I was heavy, and I was going to have to live with it. I can’t say it didn’t bother me, it really did, but I didn’t talk about it because I figured it was an exercise in futility. Why show your insecurities to a crowd? It was a body I had always lived in, and I wished I could be thinner, but I saw no road there.

My junior year I studied abroad in Ireland, where for the first time I had to buy my own food and make my own meals, on a student’s budget no less. My eating habits changed drastically, mostly because I couldn’t afford much more than oatmeal and beans. In also had to walk everywhere - to campus, to downtown, to the grocery store (to the bar.) My roommate got me into a gym regimen and I found myself eating better and being more active than I ever had in my life. There were many revelations of self while I was abroad, but the idea that I could be relatively fit given the opportunity has stuck with me. I lost a lot of weight abroad and I have tried to keep it off in the years since.

But it was not until after my second surgery that I realized a lot my future health and mobility depended on how well I took care of myself now. Granted, extra weight is not great for any body, but if I wanted my legs and joints to continue to function one of the best preventative measures for the progression of CMT is exercise. Granted CMT is a nerve disorder, and if the messages are not making it to the muscles they will atrophy, and no amount of exercise will prevent that, but keeping my joints and tendons flexible and keeping my working muscles in order is extremely important.

In the four years since that surgery, and since living on my own, I have been maintaining myself fairly steadily. There are rises and falls - at one point I made it to size 8, a good proportion to my height, my hips and ribs were hard under my skin. I won’t lie about how good that felt, how confident I was, or how I noticed people’s response to me changing, but I realize now I wasn’t eating nearly enough protein to prevent headaches and I was often edgy or grouchy from hunger. I stay about a size 10 now, but it is still weird to get called “thin” by dress fitters or coworkers. I do not consider myself thin, and I admit I stare at my body in the mirror a lot, scrutinizing that pouch of skin around my belly, or the jiggle in my thighs. I know I can be prone to obsessive bouts of exercise and restrictive dieting that can last for months, but I will fall out of it again and not enter the gym for weeks at a time. The only thing that really keeps me in check about fitness is the CMT.

There are rough days in which the last thing I want to do is work the leg press, or run on the elliptical, but I do it because if I don’t today, then I might not do it tomorrow either, and in the long run that is one of the most important aspects of managing a potentially debilitating disorder. I have the choice to either use my ability to be mobile, or to lose it.

I don’t think I’d be in the shape I am now unless I had CMT. Without it I don’t know that I’d have the drive to keep up a responsible diet and exercise regimen. Then again, maybe I would love organized sports or jogging, I simply do not know. I can’t go back and change my genes, so I live with this, and I want to live with it responsibly.