Friday, July 6, 2012

Melorheostosis, or as I like to call it, Crappy Leg Syndrome

It hurts. In more ways than just one, it hurts. There's no joy in being able to say you're truly one-in-a-million, when that means that you get to watch everyone else do normal everyday things, like run and jump...and walk.

I've Googled my disorder/disease quite a few times over the years. I was interested to find out that Ryan O'Neal's son has Melo. I was also recently shocked to discover that the bone lesions caused by the disease are considered tumors, although intellectually I know that not all tumors are cancerous, it's always just been a word I association with cancer.

The USA Today article that talks about Griffin O'Neal does a pretty good job of describing the disease:

     When it comes to melorheostosis — which afflicts just one in 1 million people — there   
     are more questions than answers.

     What doctors do know is what melorheostosis does: It causes new bone to grow 
     irregularly on top of normal bones.

     On X-rays, bones afflicted with melorheostosis often resemble dripping candle wax. The 
     new growth is often extremely hard — hard enough to actually break surgical equipment  
     — and erratic.

     It can range from fairly benign — some patients don't even know they have it until an X-
     ray reveals it — to excruciatingly painful and disfiguring when the bone grows into soft 
     tissue and other bones. It often affects just one bone in the limbs. But sometimes it 

     And sometimes, it can get worse over the course of a patient's life, as with O'Neal.

It hurts. The article sure got that right. When I was a kid, the pain wasn't all that bad. What bothered me most as a kid was not being able to do all the other things kids got to do. The ability to jump went away by the time I was 8 or 9. If I was ever able to run, I don't remember what it felt like.

If I could have a superpower, I'd love to be able to fly. But if I could have a "normal" power, it would be the ability to run.

Track-and-field days at school were like torture to me. Maggie, a girl with Down Syndrome, and I had our very own starting line for running events. It even had our names on it. Even with a 15-yard head start though, I was never going home with a ribbon for racing. I don't remember if Maggie ever won any of the races, but I hope she did.

Now that I'm older, and the disease has progressed into more of my bones, the pain ends up taking up most of my days. I take medications for it, but no amount of pain-killers is going to keep my bones from aching from deep within. I've pretty much lost the ability to walk more than a few feet at a time. As a teen, I used to take walks down Summit Avenue in St Paul and wish that I lived in one of those beautiful mansions, and go swing-dancing with friends on the weekend. As a young adult I could go to the store and walk around grabbing what I needed and make it back out to the car with only a little pain. A few years ago, I could walk the equivalent of a couple city blocks, with a lot of suffering, but it was doable. These days I'm lucky if I can make it the 20 feet from the living room to the bathroom, especially on bad days. Unfortunately, the bad days seem to be almost every day now.

And stairs. Don't get me started on stairs. There are 25 to get from our garage to our back door. Everyone else is always settled in by the time I finally make it through the door, ready to collapse into a chair, with a loud cry that's a mixture of extreme pain and extreme relief. I have to close my eyes and count the stairs as I climb, because if I have to see how far away the top of the mountain is, I'll never make it up. I'm terrified that one of these days I'm going to be attempting to go up the stairs and find myself unable to get all the way. I guess that's when I'll have to resort to going up backwards on my butt. For now, I take the torture of climbing using my feet over the embarrassment of using my behind. The day when I no longer have a choice is coming though; I can feel it everytime I struggle to take another step upwards.

There's no cure for Melorheostosis. Heck, doctors aren't even exactly sure what causes it. One site,, says that one theory is that it's caused by an irregularity in the nerve that services a body part. So for me, the irregularity would be in my leg nerves. Mostly my right leg, but my left is affected as well, just not to the same degree. I've also heard over the years that it's something genetic that skips a few generations, so perhaps somewhere back there in my family tree is a branch that's as twisted and weird looking as mine. Of course, I've also heard that it's not genetic, it's just a mutation, which for all anyone knows could be true. I could be a mutant. Just not one as hot as Storm or Jane Grey (dangit).

Sometimes, I joke about possibly being a dancer in my next life. You know, to make up for the lack of mobility in this current incarnation. I'm grateful that I was given intelligence and a sense of humor to compensate for having to sit on my duff all day making friends online instead of in person, but gosh I sure would love to dance.

In my heart, I do it all the time.