Yesterday, I was able to spend a (very) late night working on my CS 61A project. Two days ago, I couldn’t feed myself dinner because my arms were too tired. And today is yet to be determined.
If there’s one thing I’ve learned over the past 18 years, it’s that I can never predict how my body is going to behave. While my spinal muscular atrophy doesn’t necessarily flare up like a lot of other medical conditions do, my energy level fluctuates constantly, and I can go from intense concentration on CS problems to utter exhaustion in a matter of minutes.
I’m a workaholic. I’ll study for the whole day straight if there’s no reason for me to take a break, and I tend to forget that I have a physical disability requiring me to take more rest than the average student. But that never lasts long — my body always reminds me of its limitations.
One week during my junior year of high school, I was swamped with hundreds of calculus problems, two intensive English essays and a Model UN position paper. Just as the due dates for all these assignments approached, I caught a cold. The cold, combined with the weather, stress and lack of sleep, transformed into something much uglier. I ended up missing an entire week of class, huddled under layers of heavy blankets, desperate for heat and rest.
It’s a slow build and the cycle is very much the same each time. I take a “light” workload, find myself handling it easily, then pile on more and more to the point where I am stressed and exhausted. Then my body says, “Nope, you can’t do this,” and a simple infection wipes me out.
Sure, it’s frustrating sometimes, but I’ve had to just accept the fact that my body has highs and lows. I think that’s one thing that differentiates disabled people from nondisabled people — we tend to be more cognizant of our physical or mental boundaries because the risks are greater if we push ourselves too far.
My sister, who is not disabled, is the only freshman girl on her high school’s varsity cross country team. She works so hard to run as fast as she can, to build stamina as well as speed, but lately she’s been walking with a limp and complaining of leg pain. I want to tell her that her body is only human and that she can’t necessarily expect to be a Prefontaine, but I’ve realized that she’s never had to confront the fact that her body can’t always do what she wants it to.
The delicacy of our physical state is just a fact of life for me and for others like me. It’s unnerving to watch everything I’ve spent so much time working on unravel so easily from someone’s sneeze or from particularly harsh weather.
Personally, I deal with this uncertainty by putting my full effort into controlling the things that I can. I dive deep into the CS concepts we cover in class and contemplate the big ideas in my human rights seminar. I plan out the days and times when I’m going to do homework or hang out with friends far in advance, and I constantly readjust the state of my physical surroundings.
It’s a coping mechanism, I know. I grapple with the fragility of my body by asserting my will over the things that I can directly influence. I want to do as much as I can within my limitations. That’s the thing — I need to live my life to the fullest despite any restrictions I might have over my physical state. Adversity is no excuse for lack of effort.
That’s a major misconception held by anyone who’s ever called a disabled person “inspirational” just for living their life. As a frequent recipient of such “praise,” I find myself repeating over and over again that what I’m doing is not remarkable in any way — it’s just what I need to do to get by.
But maybe I’ve been thinking about this statement the wrong way. Maybe nondisabled people aren’t using disabled people as a “lesser” point of reference. Maybe, like my sister, they have unrealistic expectations for themselves and need to accept their less obvious personal limitations the same way they accept those of disabled people. Because yes, it’s impressive that my sister got on the varsity team her freshman year, but it becomes even more so considering the unique restrictions placed on her by her individual situation.
I’m inclined to think that it’s not just disabled people who are particularly impressive for doing certain things with our limitations — everybody is, and we just fail to acknowledge it for those whose difficulties aren’t as obvious.
We all have things that we cannot control in our lives, and we all seek to do what we can with what we have. I’m doing the best I can by eating pizza at the dining hall on days when I can’t grip a fork, and you’re doing the best you can, too. Smile, relax and take a second to appreciate yourself — what you’ve achieved is truly inspirational.
