“Lord, may your loving power take away all these autoimmune diseases this young lady has.” That’s what an alleged preacher spoke when I was accosted by his prayer in the dank prison of the Capitol Hill Light Rail station. What was I going to do, run? This man didn’t even know what an autoimmune disease was, but he was here, dad jeans and all, trying to tackle the mystery medical challenge that I’ve been living with for close to a decade now. After his prayer, he asked me if it had worked. It had not. “Well, sometimes it can take awhile to expel the pain,” he explained. I’ve been telling myself that for almost a decade.
If I may introduce myself before anyone else would like to try some more faith healing: Hi! I’m Danny Barber. I like writing, drawing, playing video games, animals, aviation, and alliteration. I am also disabled and, at the time of writing this, only have a faint idea why. For a college student, that’s a nightmare. You see, colleges, especially community colleges, are set up for one rather mythical student and no one else. Everyone else has to just struggle through it. There’s a clean-cut, totally independent student with disabilities out there among the unicorns. They know exactly what’s wrong with them and exactly what will be needed. That’s the one student colleges are looking for.
I am not that student. Nine-ish years ago, I began to decline rapidly in health. What started as sour stomachs quickly devolved into a complete dysfunction — sometimes involving shutdowns — of my gastrointestinal tract. Average high-schooler exhaustion turned into debilitating fatigue – flu fatigue. Flu symptoms, too. I’m faint and dizzy every time I stand. I use my walker to keep me steady and give myself an available seat. Anything from lightheadedness to my legs giving out can put me on the floor at any time. My whole nervous system is like a broken pair of headphones you have to hold just right. If I don’t, I have to drag myself across the floor. My body has completely desiccated itself, leading to numerous infections from all the dryness, particularly in my eyes and mouth. Basically, I’m not having a good time.
Have I gone to the doctor? Honestly, which doctor have I not gone to? Rheumatology, neurology, cardiology, gastroenterology, infectious disease…where have I not been? Tell me where to go. I already have all the answers: that there’s nothing wrong with me, what’s wrong with me “is beyond modern medicine,” or that it’s hysteria—er, the stress of being a young woman. I do not have many abnormal blood tests, at least for the ones most commonly run. I do not have an abnormal brain or spine MRI. I do not test badly, for the most part, except when my teeth practically fall out of my skull.
Now try and go to school and get help with that – aye, there’s the medicated muscle rub. Try and get a scholarship, a FAFSA refund, any money at all for “your body is failing you, and we don’t know why.” How do you fill out an accommodation letter for that? Accommodations imply you know what will happen beforehand. I don’t take up more space than any other disabled student, but I sure don’t have a floor plan for the space that I do need. I have not received a single cent from my school, either, despite so much of my money and my parents’ money being allocated for medical needs. I cannot even properly mark myself as disabled on the FAFSA.
Try as I might to set a good example, this is not the part where I tell you I still pulled myself up by my bootstraps and overcame the odds. Instead, I still pay full price for two classes a quarter and struggle through each and every one. I still face crowded elevators full of people going up a single floor. I still get the funny looks, the scowls of disapproval, and the coos of condescension. However, I also get a lot of support from family, friends, and my coworkers here at the Collegian. I don’t have a chintzy feel-good story to fit at the end of a slew of depressing news about how the world is continuously getting worse. But I do have people who love and care about me; that’s all I can ask for and know that I’ll get. This story of navigating mysterious disabilities during college is a work in progress, and I’m on my fiftieth and messiest draft yet. That being said, I have people writing it with me.