NMO. I often wish that acronym stood for something more interesting like “No More Oreos,” but it doesn’t. It stands for something that is much more significant and not quite as tasty: Neuromyelitis Optica. Since my diagnosis freshman year, I’ve visited 34 doctors in over six different states. I’ve also had 58 blood draws, 17 MRIs, and 23 IV infusions. I didn’t get it back then, but I understand now all those visits were good for something. I mean, it’s a peculiar feeling to feel half of your body go numb and not know whether you’ll get it back. It’s also unnerving to experiment with a cocktail of different medications during the heat of a competitive tennis season, or even during finals week.
But honestly, I can deal with all that. What’s really annoying is the fact that my Google search results have been forever changed. Just type in “Ali Guthy” and what used to be my latest tennis ranking and statistics, is now overshadowed by NMO. Don’t get me wrong, I have come to embrace the NMO side of my life, but still, I would like to at least enjoy a nice Google search without being reminded of my condition! Then again, being an NMO patient isn’t all bad. For starters, I really discovered how supportive all of my friends could be. Initially, I kept to myself about the whole rare-disease thing, but once word got out there, I was able to see how amazing and understanding my friends truly are (and I thank all you guys for that!).
But on the other hand, I do have a few complaints. I know there are a select few out there who know what I’m talking about when I say flying on a commercial airliner has become increasingly problematic. Most passengers get stopped by security for having a bottle of water, where as I get detained for carrying an emergency IV drip and packet of steroids (which, unfortunately for me, bear a striking resemblance to cocaine). On a more serious note, I feel like I live two different lives. In one, I am being probed and prodded by doctors left and right; in the other, I am a high school senior with a lot on my plate and a lot to look forward to. Being diagnosed with this disease has certainly challenged me, but has yet to overwhelm or define me. And yeah, it sucks to get stuck with a needle for MRIs, IV infusions, or just routine blood draws, but life goes on, it always does.