Another Year, Another Adventure

You may have noticed I was essentially AWOL throughout the month of December. I certainly wasn’t planning on disappearing, but you never can truly prepare for a two-day hospital stay right in the middle of finals.

I still don’t know what I had. All I know is that, in terms of symptoms, I had pretty much everything: sore throat, fever, headaches, diarrhea, ad nauseam. It took me five days to get over the initial stage of the sickness. Then my doctor prescribed me a super antibiotic, to minimize the risk of pneumonia — a medicine, apparently, to which I’m allergic. I’ve been through some scary stuff; my body and I have been fighting for 22 years. But my reaction to levofloxacin (brand name Levaquin) was terrifying: Nausea and vomiting (which is never a good thing, because it can lead to aspiration), shortness of breath, vision problems and swelling around the mouth.

My parents drove me to the ER on a Wednesday night. Sitting in the back of our van with my BiPap on, unable to swallow, the lights of my city blurry from a distance — I felt like I was 8 again, about to get a pair of metal rods knitted to my spinal column. Every so often, I’m back there again, curled on my father’s lap, the wails of a dozen children piercing the stale air of pre-op. I was barely able to keep myself from spiraling into an anxiety attack.

My dad and I didn’t get to sleep until 4 a.m. that night. My saturations were abnormally low, thanks to the levofloxacin-induced aspiration, so they ended up keeping me another day. I went home Friday afternoon, and the first thing I did was take a nap with my cat.

I knew, at that point, that my body was trying to tell me something. 2017 was a busy year for me — I edited the first issue of the magazine I founded; I took a train to the East Coast, saw my favorite voice actors in Indianapolis, and published several pieces of writing. I accomplished a lot, but I also pushed myself, and it ended up being too much. I kept telling myself that if I could just get through the semester, I would take a break before starting grad school in January. A few more weeks and it would all work out.

But then I ended up in the hospital. I knew I was in good hands. But all I could think — especially on the way to the ER, unable to stop the 14-year-old flashbacks from sending me into a spiral — was how completely unsatisfying death would be now, with everything in front of me, the horizon stretching endlessly.

I was exhausted. I didn’t have anything left in me. But I still had two weeks of school left, three papers and four exams, so I worked — and worked and worked and worked — and somehow managed to submit everything on time. After a particularly grueling semester, I was finally a college graduate.

I had plenty of time to think while lying in that hospital bed, with “Friends” playing quietly in the background. Most of those thoughts were about my impending death, how unready I was to die, general overly dramatic drivel. But I also had plenty of time to argue with myself. And argue I did, mostly about grad school. I didn’t want to drop out of the program. (I lose my mind, usually, when I’m out of school; I go nuts from boredom.) But I also knew I was in no shape to handle a full class load. I thought briefly about taking a semester off, starting full-time this fall, but I eventually decided on part-time. Two classes. Doable.

So, now it is 2018. A new year. I’ve already failed every single one of my resolutions, but with classes starting today and the promise of extra free time, I’m feeling hopeful. My body and I are on better terms. My brain and I, not so much. But mental health is a constant work-in-progress. I’m allowing myself a period of laziness. Doing whatever I want to do, so in the future I can move actively toward rejuvenation. I’m working on my book, putting together a Dungeons & Dragons campaign for my favorite people in the world, considering a new — and, for now, secret — creative endeavor … .

Not everything is great, but I am here. Alive. Like in Sylvia Plath’s The Bell Jar: “I took a deep breath and listened to the old brag of my heart. I am, I am, I am.” A place to start. A foundation for the glittering newness that is 2018.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.