living with, not dying from disease

We’re kinda taking a different spin from Northwestern Issues today, to write about something that’s important to me.

Feb 28, 2011 was Rare Diseases day. And it’s interesting, you know? I suffer from a variety of “rare diseases.” I’m an alleged “medical oddity.” But when I look in the mirror, I am no different from you or you or you or you. I have two eyes (albeit one is cut off in that picture. Fail). I have a nose, a mouth, ears, and hair. I smile and I laugh, but I also weep and I cry. My disorders may one day take my life, but that doesn’t mean you should be afraid to get to know me.
I may always walk with a limp, even if I don’t always have crutches. I may always suffer from back pain, even after back surgery which will allegedly help it (famous last words, Dr. Dude). There is no cure for my three throat problems, just monitoring. Add in all my other array of stuff, and that’s my life.
But you see – I am just like anyone else in many ways. I laugh and sing and dance and hope. I weep and cry and grieve and mourn. I have passions and dreams. I love anime and manga, monkeys and armwarmers, RENT and The Princess Bride. Take away my health problems, and I’m still very much me.
I think at times, I tend to let my health issues define me, as much as I try not to. On one hand, I claim to not let them define me and that I am still me beyond them all. But on the other hand… they very much are me. I sometimes can’t hang out with friends (and feel like a friend failure) because my health holds me back. I fall behind in class and ask for extra help because my pain flares. I miss on hanging out due to doctor’s appointments. Instead of spring break being a time of refreshment, it becomes an ideal time to fill up with doctor’s appointments so that I don’t have to miss class.
And what I don’t get is how people think I’m strong, how I’m brave. How they couldn’t do what I do. But you know what? When it’s your life, you learn to live and adapt. I don’t have a choice if I do it or not. You don’t know how I do it? I don’t. Some things give. Some things fall to the wayside. Not everything gets done. It’s life.
I don’t know what the true point of this entry is. Maybe to see what discussion it spurs about disabilities. Maybe to make people think of what it may or may not be like. Or maybe because my poor blog was looking just a tad neglected and needs life again.

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