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.

Monday, June 25, 2012

Just Another Blog Post About Bullying

I'm reading this book. It's called Nineteen Minutes, by Jodi Piccoult. It's about a school shooting. Wait, scratch that; it's about the aftermath of a school shooting. It goes from flashbacks to current events, to tell the story of a boy and the school he shot up one day.

It's a powerful story. I'm about 3/4 of the way through; today as I was reading, the trial started. The boy's defense is going to be PTSD. We all know what that is, right? It's what soldiers coming home from war experience. It's what happens to women who are raped, people who are in horrific accidents, children who are picked up and thrown around by tornadoes (if they're lucky enough to be alive after). 

So how can someone walk into a school, murder 9 students and 1 teacher, and wound 19 others, and claim PTSD? It's simple. Bullying. There's a huge campaign against it lately. Bullied kids are committing suicide; school shootings are a fact of life now; we can all probably remember at least one incident from high school where we were bullied. 

But for some kids, it's not just something that happens once in awhile. For some kids, there's no need to wait for high school because for them being bullied started early, sometimes as early as kindergarten. Oh, it's normal, kids can be mean, you say. It prevents kids from turning into wimps, you say. I was bullied and it didn't affect my life that badly, you say. 

Well, here's what I say: bullying hurts. Bullying is harmful. Bullying can cause nightmares. Bullying can cause kids to make poor life choices. The girl who has been treated badly by boys for years suddenly gets a little attention from a boy and thinks he's kinda cute...she'll do anything to keep him from leaving her, even if that means putting up with abuse, having sex too early, ending up pregnant. The boy who is teased for years because he's overweight turns 16 and decides he's done with school altogether. He becomes a high school drop-out, and no matter what he does afterwards, that title will always follow him. 

And for some kids, the torture and abuse is so bad, so horrific, they'd do anything to make it stop. They lose their ability to think clearly, because all they can think of is the taunts they'll hear, the pain they'll feel as they're tripped down the stairs or shoved into a locker, the garbage they'll smell as they're tossed into a dumpster, the shame they'll see when they look in the mirror. Some commit acts of desperation trying to stop it all. Some kill themselves. Some decide to kill others; get rid of those who abused them, and possibly anyone else that gets in the way or might have been part of the bullying.  

The truth is, most of us have been part of the bullying. If you've ever watched a kid with glasses get knocked around, his glasses pulled off his face and crushed on the ground, while the other kids call him Four-Eyes, and you didn't say anything, then you were part of the bullying. If you've ever seen a female student crying on the stairs, and another female student comforting her (because Grandma just died and it's finals week so there's no time to grieve at home in private), and you heard the other kids whistle catcalls or tell them to get a room, and you didn't do anything about it, then you were part of the bullying. 

For every vulnerable kid who was bullied in school, on the playground, on the school bus, there were at least a dozen other kids who watched it happen. And...that's it. They just watched it happen. There's someone needing air, with several people around holding oxygen tanks, but how often does anyone step in and help the drowning? Not very often. Not often enough. Out of fear of retribution, most likely. Maybe out of apathy. Because after all, kids can be mean. It's a fact of life. 

Do you know why bullies bully? To get attention. To feel better about themselves, because if someone else has it rougher, life isn't so bad. To impress others. There are probably other reasons, but those are the main ones. So what would happen if bullies didn't get attention, if their friends were not impressed at their displays of "power", if we all gave our strength to those who are bullied so the bully sees that they in fact didn't make anyone's life worse? I truly believe that we could go a long way towards eliminating most bullying if we could find a way to get our kids to stand together and stand up for others.

That kid who seems weak and sensitive might grow up to make a fabulous doctor and help cancer patients get through the worst time of their lives. The math geek might grow up to be a robotics engineer and help design something to help paraplegics walk. The fat girl everyone calls a lesbian might grow up to be a loving mom who spends her spare time creating art that she hopes can bring beauty into other people's lives. 

What if I told you that fat girl, who is not actually a lesbian, almost didn't make it? She was a pair of dull scissors away from being nothing but a memory. And 16 years after dropping out of high school, she still feels the effects of being bullied. She still has nightmares. She still hates herself. 

Don't let anyone tell you the bullying doesn't stick with a child, an adult. It wraps around a person, like a boa constrictor looking for a hug. I'd rather hug my children and teach them love, and tolerance for people who are different than they, and remain hopeful for their future. Hopeful that their future will be nothing like my past. Hopeful that one day, if they see bullying, I will have done my job and taught them to stand up for someone else, stand up for themselves. 

What if schools had more anti-bullies than bullies? More empathy than apathy? Ahhh, what a wonderful thought.