Jane in Maine is this evening's diarist. Welcome to all!
As disabilities go, it could be worse. Mine is a hereditary condition called lipedema. Occurring almost exclusively in women, it affects the way our bodies store fat and circulate fluid. It means these things:
1. I am fat, with particularly thick legs and lower body.
2. I cannot lose weight below the waist – not through dieting or exercising or surgery.
3. I am prone to skin infections in my legs because my body doesn’t do a good job of circulating fluid in that area.
4. I’m in pain a lot of the time.
As I say, it could be worse. I am capable of working, I am able to live a full and interesting life, and I’m not going to die anytime soon.
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And yet, and yet. Because of my weight, and because physics works, my joints have taken on a lot more than they were meant to, and I now have to equip myself with such outward signs as a handicap parking placard and, most recently, a walker.
When I was diagnosed seven years ago – I’d had the disease since puberty, but it is rare and often misdiagnosed as “normal” obesity – I read up on lipedema. I knew that I would need to prepare for being less mobile, to build up job skills and contacts so I could work online. I found and moved into a building where I don’t need to use stairs, where I have access to a pool so I can keep exercising.
And then there are the things I didn’t expect.
I’m 47. I’m the only person I know under 75 who uses a walker. I hate that I have to have it, and I have a love-hate relationship with it. My friends had all kinds of suggestions for naming it – “Texas Ranger,” “Junior,” etc. – but I chose “Mary” after Mary Walker, a Civil War doctor who was the first and only woman awarded the Congressional Medal of Honor.
Mary and I get attention wherever we go. To deflect some of it away from my disability, I dyed my hair a brilliant red. Yet seeing me (us?) pings a lot of people’s prejudices. To many observers, a fat woman with a walker is a sign of All That Is Wrong With America.
Strangers aren’t the only ones. I won’t ever forget the day in the counselor’s office when my soon-to-be-ex-husband exclaimed, “But what if you end up in a wheelchair?” The fact is, I may well end up in one. I had thought he would be the kind of guy to stick around and push – I certainly would have done it for him, if the situations had been reversed. I’m still wrapping my brain around the idea that I may be single for the rest of my days. A walker is scarcely a turn-on, and it’s not like fat middle-aged ladies with strong opinions are widely in demand anyway.
All other things being equal, I’m not the kind of person who sits around and waits for help. I charge in, get things done, slay dragons, rescue princes. Today there are a lot of situations where I can’t act according to my nature, where I have to wait, to ask someone to help me, to let someone else do it, to admit that I can’t add one more thing to my schedule.
Strangely, there are some positives to having a disability, especially one that’s increasingly visible. No one now looks askance at me when I use the handicapped parking spots. I’ve had some … opportunities, let us say, to find out who my real friends are. (And the ones who are real are AMAZING and wonderful and much appreciated.)
I almost ended this piece with a paragraph about how grateful I am to the people who, whether they know it or not, have been my teachers as I learn this new language of disability. The gratitude is real.But I’m also aware of the stereotype of the cheerful, grateful disabled person. Believe me, I’m not that person. There are days when I’m grumpy, depressed, anxious, and inclined to use language unsuitable for polite society. There are days when I’d give anything to have a different body, or a partner by my side to help me through, or even a job with benefits.
But I’m here. It could be worse.
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KosAbility is a community diary series posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.