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.