I’ve mentioned before that I have muscular dystrophy, and I think this Sunday is a day I can write about it without getting all bitter and self-absorbed. I don’t want to talk about it when I’m feeling at all negative, because then whatever I write would evoke pity. And if I’m evoking pity, I’m misleading my sympathetic audience and furthering ideas that I don’t believe in. Disability’s just this thing, you know? It’s always a part of who I am, but I don’t think about it until I have to. And I certainly don’t feel bad about it except for when I’m already feeling sorry for myself about other things.
The particular type of muscular dystrophy that my brother and I have is charcot marie tooth, and the specific type of *that* is dejerine sotas. Those labels are worth mentioning only so you don’t confuse what I have with something more serious like multiple sclerosis or one of the many other types of muscular dystrophy. (MD is not MS, I’m a doctor not a missionary…if you need a mnemonic device to keep them straight) What it all means is that the nerves controlling my arms and legs are like unshielded power lines. The movement signals get there much slower than normal, so my reflexes aren’t so good and it takes more time and energy for me to move. My muscles aren’t used properly, and they weaken. I also have low endurance, poor circulation, and a poor sense of balance. I trip and fall a lot. It’s not fatal but is progressive– I may need to get a cane and/or a wheelchair in the future, but I’m hoping to have a career and family established before it gets to that point. At present I can walk (better) with or (worse) without orthotics, and I can still drive though I am considering applying for hand controls in the next car I get.
| (Ministry of Silly Walks, from Monty Python )
My walk has grown rather sillier over the years, often making me late. As compared to John Cleese in the Ministry of Silly Walks sketch, my silly walk has a bit less leg movement (I can’t lift my foot that high) and my upper body kinda sways side to side like a metronome. Gee, that’s too many words for, “I walk like a penguin,” isn’t it? I lost the ability to run and to ride a bike sometime around the end of elementary school, had a small orthotic inside my shoe in high school, and got plastic braces up to my knees the first year of college. If I misjudge how long it’s going to take to go somewhere, I can’t just move faster to make up time. And I can’t do more than a 10 minute walk without stopping (one or two large blocks), and that takes me more like 20 minutes. Other personal side effects include: * I don’t drink more than one or two drinks at a party (alcohol being a nerve poison). One rum and coke or gin fizz, and I nurse it all evening. * My brother was the local ambassador for the Jerry Lewis telethon for several years. * I hold on to stairrails with both hands while using stairs. * I decided not to pursue an acting career during middle school when I realized acting would require more physical movement than I am capable of. I *have* considered voice-acting, but I have my thumbs in too many other pies for it to be more than a hobby. Did I mention I don’t like my voice? * Most American street curbs are too high for me to step up on without leaning on a friend’s arm or walking allll the way down to the wheelchair ramp. Sometimes the ramp is too steep and will roll me back on my braces, which are designed to roll me forward as I walk. Japanese street curbs are on average lower and more accessible. Yay, Japan! Despite their buildings not having elevators as predictably as American buildings do, and some train stations having nothing but stairs. * I stopped marching in marching band when I started high school, and dropped my flute in favor of xylophone/marimba/vibes/chimes/bells (and timpani, that one time), which were soooo much more fun because I got to play jazz more often, *and* during my junior year I was a co-section leader with my boyfriend the funky drummer : ) Someday when I have my new family life all established, I’m getting a set of vibes or a marimba. * I can’t work in restaurants because I can’t carry heavy trays without dropping them a la the “10 Banana Cream Pies” sketch on Sesame Street.This kinda sucks in a town where fast food is the most reliably hiring industry. Retail is barely doable but wears me out from standing for so long. This is what worries me most right now. I don’t have enough experience to be hired for anything that would use my brain, and I don’t have the physical skills for the jobs that are actually hiring. It seems like it is actually easier to go back to Japan and be an English teacher than it is to get any sort of piddly day job in my hometown. I am currently starting work on a graphic design portfolio for advertising, and am going to have to start cold calling people to offer them advertising designs. You don’t need physical ability to be an artist, but you do have to work hard and put yourself out there. I also have my longterm dream of being a concept artist or animator in the game industry, and I’m learning Flash to become more hirable in that arena. But I’m going to have to move to a town with an industry scene before I have much chance at that. And the portfolio has to improve a lot before I can get hired in the art department. * This is also the main reason that I’m shy offline. I don’t feel like I can just ask people to hang out with me, or invite myself when my friends are going out, because if I’m along the transportation time doubles and there is a lot of waiting added to the evening. And if they invite me, I have to know how far away everything is and how far we have to walk and can I drive and is there parking near where we’re going to be and…. at this point I’m exhausted from trying to work out the details. I hate being such a control freak slave to plans, so I almost never initiate group outings. But the most common one that annoys me? Shoes. I hate shoes. No shoes are awesome, all shoes suck, and YouTube’s Kelly can fight the lady in TV’s car commercial for them. It’s hard enough for me to find a pair I can walk in every day, and dress shoes are a nightmare. I added the Shoes application on Facebook just so I could start riffing on them. Why do women put so much pressure on their feet that they need botox injections to stop the pain??? And Chinese foot binding? That’s actually kinda close to what my weak tendons are doing to me– I’ll spare you the gorey details, but my feet would hurt all the time if my brain weren’t sending so many endorphins down there. Why would anyone do that to their feet on purpose? I had fun laughing at the girls at my middle school when they asked my friend and me to watch their platform shoes while they went to dance barefoot, and I’ve revived that cynicism in my daily shoe riffing on Facebook. My feet have high arches and have naturally grown into the shape of a Barbie doll’s feet. I could wear heels, but I couldn’t do much better than the doll does at standing by myself in them. I approve of my sister’s ballet flats, but I can’t wear those either because there’s nothing to keep my feet inside them. Sandals used to work as long as they had uppers that covered the heel and straps over the arch, but my ankles are really too weak for them anymore. I might try them one more time for my wedding day, hmmm… What I actually wear everyday are black Chuck Taylor high tops, which are nice and flexible over my braces and also hide the plastic. And for dressy occasions, I go punk rock with my huge goth boots (I’ve posted a picture of them before when talking about my senior art show). The boots also look natural over the braces, as opposed to most formal shoes which are too narrow or look like boats if they actually fit the braces. I might just wear the goth boots to my wedding. Who says wedding shoes have to be white? They’re heavy, but I can walk in them and can stand in them for a long time before they start hurting. Punk rock. What I want to make absolutely clear is that I am not waiting around for a cure. Sometimes my brother is told that people are praying for him, as he is in a wheelchair and is more visibly mobility impaired than I am. In my case, the word bravery comes up a bit more often. That’s so weird!!! I don’t know what to say to them. I can honestly thank them for caring about us, and I suppose “Thank you for the kind words” is reply enough. But I believe bravery involves a personal choice to take on a dangerous situation. There’s no courage or bravery about muscular dystrophy– we do what we have to do in our daily lives, same as anyone else. My brother studies psychology and I am an artist. We aren’t Jerry’s “kids” anymore. It would be stupid to expect a magic sugar pill to change our gait overnight. That said, there are some interesting things on the research front — the gene for muscular dystrophy has been identified and some Japanese researchers are working on something very mecha looking to strap on to one’s legs and improve walking. I think that at least assistive technology is on the horizon. But I’m not waiting for a cure. I’m not waiting for anything other than for my boyfriend’s Navy contract to end. And Christmas. He’ll be home for Christmas! If you read all this, I’m amazed. Sorry to rant so long– I don’t talk about this often and there’s a lot to cover if you’re hearing it for the first time. I just wanted my online friends to know that the words “Mind if I tag along” are not in my vocabulary and if I ever waddle up to you in person, I swear I’m not drunk. E->}}}*> |
