5/01/2009

But I'm NOT Disabled!

I was born with hip dysplasia. It wasn't detected by doctors until I was already walking. My mother kept telling people that I was walking funny, and she was reassured that it was only because I learned how to walk in a playpen.

But it was real - my left hip was completely dislocated, and I had surgery when I was a little over a year old to correct the problem. I'm not sure what kind of surgery, but the surgeons cut a bunch of bone out of my pelvic bone and built a new joint. My parents speak glowingly about how I never let it slow me down. While I was recovering from surgery, I wore a series of braces that kept my left leg sticking out to the side at a right angle to the ground. I couldn't walk like that, so my father made me a wheeled cart, and I would get around by "walking" on my arms, dragging the rest of me behind.

I remember the first time I really noticed that I couldn't do what other people did, and that was in kindergarten. We were all directed to sit Indian style on the rug while the teacher read to us, and I dutifully tried to do so. And I couldn't. If I put my arms around my knees, and pulled them up to my chest, I could almost sorta cross my ankles over each other. But everyone else seemed to do it with ease! I ended up lying down on my belly with my chin resting on my hands and my feet up in the air, or sitting froggy style, with my knees rotating out and my feet on either side of my butt.

When my grandmother would come visit, she would have me walk up and down the length of the living room for her. "Ach! She's a cripple!" she would say. But I never took that to heart, I just thought it was one of her weird Irish things, and I was clearly her favorite grandchild.

I just accepted that I couldn't kick my left leg as high, and that I couldn't run as far, or sit Indian style or cross my legs the way girls do. It was just the way I was. I still loved gym, was usually the first girl picked for teams, played softball, and was very active. I could do cartwheels and backflips and walkovers, I could do a backbend from a standing position, and I even won a sprinting race at my dad's Irish club's field day. Heck, I was even a cheerleader for a couple of years!

As I started to get older, people would ask me sometimes if I was okay, or ask what happened to my leg. I would always get puzzled for a second, and then remember that they didn't live inside my body, so they didn't know this was just how I was, so I told them that I was born with a dislocated hip. When I lay in bed at night, I would trace the soft train track scar on my left hip.

It wasn't until I was fully grown that I started to have more serious problems. As the pain increased, I cut back on my activities, and I gained weight. I started to be able to predict the weather with astonishing accuracy. Now I had a new problem, osteoarthritis, which was a direct result of my congenital disorder.

About 14 years ago, I was in a car accident, and my left knee was slammed into the dashboard of the car. It took me a week to be able to straighten that leg out again. I went to an orthopedist for follow-up, and he said "you have the hip of an 80 year old." I didn't like him, so I found another orthopedist who was kind enough to take my pain seriously and gave me a prescription for Vicodin, which allowed me to sleep at night and function during the day. I was not Gregory House, dry-popping Vicodin like they were Chicklets - if anything, I was stingey about using them, preferring to save them for when the pain was really bad. I give Vicodin a lot of credit in my losing 36 pounds.

That orthopedist retired, sadly, and I couldn't find another orthopedist who was as forward thinking about treating pain. When I first visited my current orthopedist, he asked me to sign a release so my X-rays could be used to Board test Orthopedic candidates - the combination of my youth and the extremely poor condition of my hip would make an interesting question, he thought. He asked me to start using a cane.

I got a cane and I started noticing a huge difference in the way people reacted to me. People always wanted to open doors for me, or carry heavy things for me, or do things for me. It made me angry, quite honestly. Did they think there was something wrong with me? Did they think I was incapable or incompetent?

And people would always ask me if I needed help, or if there was anything they could do to help me. Well, I would think, I need help clipping my left toenails or shaving my left leg, but no, I can get the door for myself. No one really wanted to give the kind of help that I needed.

My husband would occasionally suggest I should get a handicapped parking pass, and I even went to get a form to do that...but the form asked me to declare that I was permanently disabled, and I couldn't do that.

Because there is a cure for my current problem, and that cure is a prosthetic hip. I'm told that once my hip is replaced, that the pain will be gone, that they might even be able to make my legs the same length, and that I will have my life back.

I can't help but think it will be a completely new life, but I try not to raise my expectations too much.

I went to the orthopedist yesterday for a checkup. They are having me in every 2 months as they chart the decline of my hip. The ortho would like me to lose more weight, telling me that statistically speaking, most people do not lose weight after hip replacement surgery, and that heavier people generally gain weight afterwards. But I am also supposed to cut back on walking and not participate in any aggressive exercise, because that will put my hip on track for a faster decline, and at my age, it's likely the prosthetic will wear out before I'm ready to be done walking. And he said he was reluctant to schedule a surgery because he thinks the pain that I'm living with is not in the driver's seat yet. And it's not, at least, it's not in the driver's seat all the time, although it is my now constant companion.

So I'm kind of in this frustrating place, where I appear disabled, and by most reasonable measures, I am disabled. I know there are things I cannot do. I can't run, for example. My husband and kids have dreams about flying, I have dreams where I'm running - I've woken up in tears because I'm running in my dreams, and I remember how free it felt, and I can't do it in my waking life.

But I don't feel disabled, and I only use that word - or, more accurately, the "c" word, "crippled" - in a self-deprecating manner. I feel competent and capable, and I hate it when people think that they are being kind by offering to hold the door for me. I don't say anything, because maybe that's exactly the kind of help that someone else needs. If I could just find someone to shave my left leg for me, I'd be all set.

9 comments:

Tracy said...

That's what husbands are for. I haven't actually experienced it, but I hear it's sexy to have your man shave you. And your leg absolutely counts.

Are you going to get the replacement? You must be so incredibly frustrated.

Good post.

Crippled Carny said...

"I have dreams where I'm running - I've woken up in tears because I'm running in my dreams, and I remember how free it felt, and I can't do it in my waking life."

I have dreams like that, too. I wake the same way from them, too. When I've talked about them in the past I've referred to them as my favorite nights and my least favorite mornings.

Never That Easy said...

It took a lot for me to accept that I am disabled, and I certainly wouldn't suggest that anybody else has to claim the word as part of their identity - we each have our own experience, and each experience is valid.

I have those dreams too - mine are about swimming. I really miss swimming.

Anonymous said...

I'll be 70 this year and, after a kind of partially successful heart bypass op, can't - even with a heart tablet - carry a bag of shopping up 2 flights of stairs without stopping for breath and all but expiring.

Particularly in winter, just rushing across one road lane, I almost have to get down as if in starting blocks, then hold onto the wall on the other side till I get my breath back. Very funny.

But a great neighbour of ours managed to get what I call my cripple's parking place outside. I love hobbling along and stopping for a breather every now and again.

Pretty perverse I suppose. But we're not our bodies. It's kind of all in the mind. I'm still only about 20. In front of my computer, i.e most of the time, I feel like an Olympic athlete. It's only whe I stand up and stagger around a bit, I suspect all might not be perfect.

As for my wife, she's always favoured adopting a pathetically distressed mien at zebra crossings, in the hope that some boy scout or other kind soul will be moved by her plight, take her arm and usher her across the road!

She has at least five medical conditions that make her daily round quite onerous, but fortunately she has an amzing immune system and is as strong as an ox. Weak arms, but strong enough tendons for her to hold shopping bags, and lungs like giant bellows - which I once thought was a strong draught on my face from the bedroom window.

Your gymnastic athleticism is very, very impressive to me, Maurinsky.

Anonymous said...

I didn't mean to be anonymous. My name is Paul.

Re the gymnastic athleticism, Maurinsky, from an early age, I was always able to sit crosslegged and could also do somersaults.

How do I get to have my name displayed?

Katrine said...

Thank you, Maurinsky. This post was very eye-opening for me. I admit that I am more likely to open the door in front of the person who has difficulty moving, but I am doing that only in attempts to help somehow that unfortunate stranger. Your post made me stop and think.

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Sadie S. said...

I laughed. Because, you see, as a person with a plethora of illnesses, most of them chronic? I don't consider myself disabled. I tried writing about it, but I never knew how to express that.

You did it for me. Thank you.

Anonymous said...

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