What It’s Really Like: I Have a Rare Neurological Disorder

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First things first: I have a very rare neurological disorder. Rare as in there are 50 cases in the world.  TwitterLogo_#55acee

This disorder renders me unable to feel pain, temperature and touch in the same way most people do. I don’t have reflexes and can’t regulate my own body temperature. I’m deaf.

I also can’t do things like tie my own shoes, wake up on my own, button a shirt or coat, walk very far without getting winded, and eat in public without being extraordinarily self-conscious about how messy I am.

Did I mention I just moved away from home?

I’m a first-year journalism student at Miami University in Oxford, Ohio. My college experience thus far has certainly not been typical. TwitterLogo_#55acee

For one thing, I might live in a single room, but I’m not alone: my hearing service dog lives with me. I got her this past summer as somewhat of a necessary measure.

Even though I wear cochlear implants during the day and function very well with them, I can’t hear anything when I take them out at night, so a traditional alarm clock doesn’t work for me. Neither do the vibrating bed shakers typically used by people in the Deaf and hard-of-hearing community – that I owe to my severe case of Restless Legs Syndrome.

I’m still training my service dog to be able to wake me up each morning and alert me to emergency alarms at night, but until then, I’ve had to resort to other methods of getting up for classes. For the first two weeks of the semester, my parents took turns driving two hours every day just to come wake me up. Luckily, I’ve since been able to hire a few women in my residence hall to pick up the slack.


As you might imagine, my transition to college hasn’t been the smoothest. There have been several occasions on which my wake-up call failed to show up in the morning, causing me to miss my 11:30 am class. And then there was the time I was shaken awake by a concerned paramedic at 4:30 in the morning because I was kicking the wall in my sleep and waking up my neighbors. Or, the lovely afternoon when my dog decided that the middle of the student center was the perfect place to defecate.

But the thing is, I expected nothing less. (Well, OK, maybe a tiny bit less.)

I’ve taken the bus to get home after a meeting – not because I’ve had an eventful night out on the town, but because my body simply won’t allow me to walk more than a block at a time.

I’ve fallen asleep in class – due to my Restless Legs Syndrome not granting me a moment of REM sleep each night, not because of some rager the night before. Instead of gaining the infamous “freshman 15”, I’ve lost it, thanks to my digestive issues.

Against (seemingly) all odds, I’ve dealt with a handful of mini-crises since arriving to college – as has every other first-year student I know.

When I stop to consider it, it occurs to me that my college experience, at its core, hasn’t been too far out of the ordinary. From late-night cramming sessions (or, more probably, Netflix binging) to Chipotle runs to lazy afternoons with friends in the dorm and periodically agonizing over my future, I’m pretty much like any other 18-year-old whose world is expanding as she starts to discover what adult life is like.

Megan Zahneis is a journalism student at Miami University in Oxford, Ohio. She works as a correspondent for and a staff writer on her university newspaper. She aspires to put her passions for writing and public speaking to good use as a professional storyteller.

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