Monday, November 5, 2007

Thank you

As somebody who is constantly asking others for help, with pretty much everything, I am generally appreciative of the connectedness of the world and the importance of many different people in my life. On the other hand, I think that I can also take for granted the dance between myself and all of the people around me who support me. I can forget how incredible it is that everything has fallen together as it has. People enter your life when you need them, and this adage has been proven time and time again with each major challenge I have faced.

When I was born, no one knew what was wrong with me. In fact the doctors had no idea there would be any complications, and since my condition is so rare, nobody could diagnose me. I have arthrogryposis, which occurs in roughly 1 in 3,000 births. There is remarkably little information on it. Actually, when I was a kid, my parents explained it in such vague terms (because there is little to tell), that I became convinced for years that I was terminally ill but nobody wanted to tell me. In reality, arthrogryposis just refers to a condition where something (and it is still unknown exactly what) impedes the development of skeletal muscles in a baby before birth. This causes some stiffness and joint deformities, in addition to the underdevelopment of arm and leg muscles.

Basically, when I was born, among other things, my legs were turned completely around and bent up so that my feet were against my chest.

My mom's obstetrician told her that I would never be able to function normally and would probably die within a year or two. Why should she subject herself to such difficulties? There was a state institution to care for severely disabled children. She and my dad should send me there and move on with their lives.

"Gee, thanks Doc," I said. Or at least I would have if I could, but I was a newborn. Thank goodness I got my common sense, stubborn tendencies, and general disdain for naysayers from my mother!

She fired him, and another doctor referred us to a specialist in Seattle. I've always known this, but it really has just hit me recently. This specialist literally changed my life. He performed nearly a dozen aggressive surgeries before I was two years old, effectively straightening out my entire body. Orthopedics is like mechanical engineering. We're not talking about mixing chemicals, administering shots, or mending blood vessels. He broke my legs and turned them around. He ripped and stretched tendons to loosen up my joints. Basically, he had to tear my little infant body apart and put it back together again. That takes some serious guts. But if it weren't for him, while I would probably still be active and living life, I'd just have to deal with some serious deformities in addition to everything else.

Someday, I would like to think back and try to remember more of those people who impacted my life. There are so many people who did big and little things. There was the childhood friend of my grandmother who let my parents and I stay with her and her husband during all of my surgeries. They would pick me up at the airport and take care of me when I had to fly up alone for follow ups.

I sometimes get so caught up in the minutia of my current self-centered life, that I wonder..am I neglecting my own duty to help others? I usually just assume that the opportunity hasn't presented itself. Is that just a weak excuse for not seeking those opportunities? Have I turned away from situations where I really could have helped?

I just think that sometimes, we who have disabilities, or who have otherwise been significantly impacted by other people who've periodically entered our lives, should not forget them. And we should keep our eyes opened so that when the moment comes when we fortuitously enter another's life who needs us at that moment, we won't let them down.

4 comments:

Donna said...

Hi. Every once in a while, I do a search for "arthrogyposis blog". Today, I landed here!

My daughter is two and a half and has arthrogryposis. Distal AMC is the actual diagnosis. She isn't severely affected, but isn't walking and has very stiff fingers, etc.

Glad to find your blog. You are a wonderful writer and I look forward to reading more about your life. Are you familiar with amcsupport.org? Great support group and they have started having conventions every year- Ohio in 2008.

Thanks for sharing about your life!
Donna

Nora Wiles said...

Thanks so much for visiting, Donna. I need to post more, but have gotten a bit busy. I wish you and your daughter the best of luck. I know it can be scary to face a condition that is so little-known. I have come across amcsupport.org, and in fact, I just reconnected with my former doctor, and he was at the convention I think.

Please let me know if you'd like any more informaton from me about how I've dealt with Arthrogryposis. My email is on the site.

Justin Kownacki said...

I suspect each of us is here, living the type of life we lead, thanks to the intervention (or not) of a few key people. Considering we meet millions of people in our lives, to realize that 2 or 3 of them are probably the keys to why we are who we are, it really puts your daily interactions into perspective, no?

Kimari said...

Hello.

I came across your blog by pure chance and must say that your words are truly inspiring. I do not have the same physical challenges in my life as you do in yours... perhaps you don't see your situation as a challenge. The message of thanks that you share instills a sense of hope and delivers a much needed counter to a world that attacks our psyche with negative images of violence, sex, hatred and fear. Thank you very much for helping me realize that life is a wonderful, cherished gift.

G-d bless you!

Greg