It’s not always easy to be proud of your disability

December 8, 2016 | Jessica McHale

“It’s not always easy to be proud of your disability. There will be days when you wish you could take a cure-all blue pill. And there will also be days when you can’t imagine ever wanting to take that blue pill because you are so proud of your disability and who it has turned you into.” Michael Murray, AAPD’s COO.

Just last month you could have caught me lying on my floor gasping for air in between sobs. I was in a state of panic, caught by the spontaneity of yet another migraine and unsure of what to do. I’ve tried every medicine and every diet. I couldn’t bear, from physical pain as well as emotional exasperation, to even look at a digital screen or to listen to my mom give me instructions over the phone. I desperately wanted to go to a hospital and have them stop the pain, but I knew from my past experiences that all they could do was put me in a room and try various cocktails of disorienting drugs before finding something that would only work for a few hours, or conceding that nothing would.

I was going through perhaps the worst migraine of my entire life, and all I could think about was the entrapment I felt because of my condition in high school. Imagine having a jackhammer drilled into all sides of your skull, coupled with an all-consuming fear of missing extended time from school if your illness were to persist that upcoming semester. Meanwhile, a person could look at me at various stages during the attack and not even be able to tell that anything was wrong.

There is a stigma behind these kind of “invisible” disabilities. If there aren’t consistent tangible, visible signs, if a doctor can’t point to a structure and say “that’s the cause, right there!” then surely it can’t be that bad. I get migraines almost every day, and I’ve had to build up the strength to learn how to put up a monotonous front in the midst of suffering from one. Still, it often feels like I’m punished for developing that strength. I’ve had good friends assure me that “it’s just a headache” and that it’s all in my head. Teachers and administrators have called me lazy and hopeless, threatening to fail me without the slightest consideration that this whole thing might not be under my control.

And it isn’t always under my control, but through my condition I’ve learned to better control other aspects of my own life. After my high school decided to fill my transcript with F’s rather than allowing me time to make up my work, I applied to nearly 20 colleges and sent personalized letters to all of them from my doctors, teachers, and mentors explaining my circumstances. While I experienced one ADA violation after another, I never lost sight of my own potential and self-concept, though my guidance counselor and some of my teachers did all they could to break it down. I got into a top 10 undergraduate program for my major, now earning better grades than I ever could have dreamt of. I’ve made time to volunteer, work, teach, mentor, and I’m even starting a moot court team at my university. I constantly plan for the worst-case scenario because I’ve envisioned it so many times. Cramming is not an option, and neither is giving anything but 100% of my effort. I’ve felt what it’s like to lose what others take for granted, yet I also remain aware of the tremendous privilege and opportunities I have that others are never given.

This is the reality of living with a fickle disability. I live my life in ebbs and flows, and I’m working on embracing every aspect of my condition, because I swear I would not be the person I’m proud to be today without it. So I refer back to Michael Murray’s quote at the beginning; although it may be immensely difficult at times, I would never take that blue pill.

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Jessica McHale was a 2016 AAPD Summer Intern. She is currently a student at American University majoring in International Studies with a concentration in Justice, Ethics, and Human Rights. This summer Jessica interned with US Agency for International Development (USAID).

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