My Body Is Weird — and I Love It

No matter how hard I try, there are things I continually forget.

Take, for example, the few times I’ve hosted parties. I’m an introvert through and through, so hosting isn’t exactly my forte, but I love spending time with friends. I was so excited for my very first dinner party that I completely forgot to buy utensils. When my mom brought the oversight to my attention, I freaked, and proceeded to spend an exorbitant amount of money on a last-minute, same-day delivery.

Then there was the time my friends from Chicago and Indiana came to visit. It was Christmastime, so my house was decorated from top to bottom. I even had presents for each of my friends, handpicked with love. But in my scurry of preparation, I’d overlooked one not-so-small detail.

“Do you know what you’re doing for food?” my mom had asked, fully expecting me to have something in mind.

I didn’t.

It wasn’t that I forgot about food. It was that I forgot the importance of food.

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On average, I eat one meal a day, with some snacks here and there. My G-tube takes care of the rest. I’m not immune to hunger, but my life doesn’t revolve around it, which explains my lapse in judgment. I knew, of course, that my friends would need food, just as they’d need utensils with which to eat the food. It just … didn’t cross my mind, mostly because it’s not something I have to deal with.

I’ve written several columns about normalcy, which is to say I’m not. Normal, that is. There’s the wheelchair, of course, and fatigue, and the suspicious lack of a full-time job, but it’s more than that. Thanks to SMA, I see the world differently. Career, relationships, hobbies, politics — my disability affects each of these in turn, shaping not only my opinions, but also how I move through life.

The other day, I was reminded of just how abnormal I am. A few weeks ago, I wrote about a trip to the doctor’s office due to shoulder pain. I’ve been recovering, slowly but surely. I still have bouts of pain, especially when I move my arm the wrong way, but it seems that, for the most part, I’m on the mend.

Weeks ago, when I was trying to decide whether I should go to the doctor, I told my friends that my shoulder had popped out of its socket. Joint issues are run-of-the-mill for me — my left hip is more a loose hinge than a bone. I’ve experienced the sensation often enough to separate it from injury-related arthritis.

Then my friends lost their minds.

“You WHAT?!”

“Go to the ER!”

I told them it wasn’t a big deal — my joints have been popping in and out of socket for years. But my friends weren’t convinced.

My body has always been “weird,” but after a while, the weirdness loses its luster. Joints pop in and out of socket like they were made to. G-tubes provide the majority of my nutrition, to the point where I forget to eat. Body abnormalities become facets of everyday life — until you describe them to someone else. Then they’re just weird again.

Every morning, I stretch my hip, coaxing it out of socket. Lately, I’ve been doing the same with my shoulder, hoping to work the arthritis from my muscles. My dad waits for the telltale pop, only to grimace, because surely bones aren’t supposed to do that.

I laugh and go on with my day.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.