The human body is very advanced. In most cases, it lets you know with some sort of outward expression when something is wrong internally. Unfortunately, it’s up to you whether or not you acknowledge the warning signs.
As a freshman in high school I chose to ignore the warning signs my body was giving me for three days. Which, in hindsight, is quite a while to ignore being blind in your left eye. Granted, it wasn’t as though I woke up and half my vision was black. It faded out, blurring from the center until I had minimal peripheral vision and I had to squint and ask for help to read my sheet music in band. It was that night, on the third day of seeing out of only one eye, with no depth perception, and more aggravation over missed notes on the saxophone than concern for my health, that I finally thought to mention my problem to my parents. They were a little more worried than I was.
I discovered then that randomly going blind is something you should probably address sooner rather than later. We went to the eye doctor in town, and they fairly quickly diagnosed the issue as optic neuritis. I assumed that would be the end of it—diagnose me, give me some eye drops, and send me on my way—but apparently not. Optic neuritis is usually indicative of deeper problems; it occurs when your immune system attacks the optic nerve, which causes the blindness. The next day, we drove directly to St. Louis where testing at the Children’s Hospital had been arranged in coordination with one of the university’s research centers. I wasn’t sure what that meant at the time, but it essentially panned out to me being followed around by three to eight med students at any given time. Who knew dilated eyes and optic neuritis were that interesting?
I spent a full day looking at letter charts, spotting flashing lights, and staring back at doctors through an ophthalmoscope. They wanted to assess how badly the optic nerve was damaged and gauge how bad my vision loss was. Then it was time for an MRI. They assumed this was all just an autoimmune response to a virus, but they didn’t want to rule out other causes. The best way to do that was with an MRI. Since 2014, I’ve had another twelve or so MRIs. If someone can be a “pro” at laying perfectly still with a cage around their head while a machine takes images of their brain for an hour, I would venture to say that I am. I’ve grown so accustomed to MRIs that I sleep through them; when I go in for testing there is nothing I cherish more than my hour nap down in the imaging center. Yet that first MRI was not one I slept through.
The first MRI gave me a lot of time to think. It made me realize how much of a security blanket my clothes are; as I was led around in a hospital gown and slipper socks that didn’t belong to me, I felt exposed and even younger than I was. I realized how hard it is to lay perfectly still for an hour, even when there’s a plastic cage around your head to keep it in place. When they put the contrast dye in my arm, I felt the ice-cold liquid flow from my elbow all throughout my body, adding to the overall discomfort of the situation, and I realized for the first time the exact path blood takes from the vein in your arm to your brain. Finally, in that moment I realized just how little I understood about what was going on and just how anxious I was about it. This anxiety hadn’t hit until I was finally alone, listening to the overwhelming hum and buzz of the machine.
Unfortunately, and against most odds, the MRI did find something out of place, although it wasn’t directly linked to optic neuritis. The test revealed that I have multiple lesions on my brain. I like to consider lesions the “anti-tumor,” but in reality they’re just areas of scarred or damaged tissue on the brain. The discovery of those lesions was the beginning of my life sentence.
The pairing of optic neuritis and lesions on the brain in young people is often indicative of early onset multiple sclerosis (MS). I was already going to be in the hospital for a few days while on steroids to speed up the healing of my vision, so this allowed for ample opportunity to run a few baseline tests for MS. Most of those tests are just genetic history, health history, and various questionnaires. One physical test they had to conduct was a spinal tap. At this point, I was still a favorite pin cushion and practice dummy for med students; it’s what I got for being over the age of twelve in a children’s hospital. I’d been in the hospital for two days, my hand was sore from the steroid IV already, the nurses’ check-ins kept me on a two hour nap schedule, I was blind in one eye, and in that moment the very last thing I wanted was a giant needle in my spine. As it turned out, my opinion didn’t really matter in this case: they moved me from my room to a smaller room down the hall, and we met a doctor and three med students. They laid me down on a cot and for the rest of the experience I got to stare at a wall-mounted band aid dispenser. At the very beginning, they explained that there’s some contest in the medical scene: If they get a clean pull of the spinal fluid, they get champagne. I wasn’t really paying attention because I was emotionally preparing to have fluid that I didn’t even know existed pulled from my spine.
They started by injecting a few shots of numbing fluid—which is when my mom left the room—and then the first med student attempted the spinal tap., A failed spinal tap manages to hurt more than a successful spinal tap, and you can actually hear the difference. A successful tap makes the most terrible pop sound imaginable, which, while horrifying, signifies that something was achieved. Failed taps just hurt and bleed, with no satisfaction of completing the job. During the second med student’s try, the nurse left the room, and it was during the last student’s attempt that I decided it was ok to cry.
There I was, silently crying as the doctor gives the three failed spinal tap prodigies a lesson in which I’m the living test dummy. The doctor managed to successfully steal my spinal fluid (which is when I learned what the pop sounds like) but not without getting blood in it, which garnered a, “Shucks no champagne for us” from him. That was probably the real tragedy in the whole situation.
The spinal fluid tests confirmed me as “high risk” for MS. I left the hospital a few days later with a bruised hand where they’d stuck the IV, a schedule for check-ins with a neurologist, and the knowledge that I would spend the rest of my life waiting for a confirmation diagnosis. That was the part that really stuck with me. And even though there was still the faint white mark on the back of my hand from the steroid drip four years later and my depth perception is still a little off because of the scarring on my optic nerve, it’s the awareness of the internal scarring that is the most present part of my life.
It would be inaccurate to say I’ve overcome my struggles concerning this, but I have come to terms with it. Throughout the years I’ve had a lot of stress and anxiety relating to the potential diagnosis, and I’ve funneled that nervous energy into researching multiple sclerosis for the benefit of my own understanding. I figured if I was going to assume the diagnosis to be inevitable, then I should be prepared for it. As I’ve gotten older it’s become less of a worry for me, both because I’ve had more time with it and because I’ve gone longer with no medical change. In no way would I say that I’d be fine if the next time I went in for a check I found out that I had MS; it’s not necessarily acceptance but a level of preparedness for something I don’t want to happen.
I never expected to go through one of the strangest medical journeys a person can take. When I was young, I was always the “sick kid,” but that doesn’t necessarily have to correlate to mysterious autoimmune issues as a teen. Now that I’ve reached the point in my “sick kid” career where I’ve grown accustomed to chatting with radiology techs about which arm has better veins for the contrast injection, it’s safe to say I’ve learned some things.
I’ve embraced one of the qualities that is a large part of my life now; living life moment by moment because of what I went through. If worst comes to worst, I could have decreased life expectancy or a decreased quality of life as I age. Therefore I think it’s important to take advantage of opportunities and time I have now. Along with that, I like to think I’m more self-aware than I used to be. I’m more conscious of what is going on physically practically speaking, and, mentally, it’s just as important to know how you feel. The main thing I took away from all this was an acceptance that I can’t be in control of everything. Some things in this world are just out of my control, and while I can do everything within my power, that won’t matter. The acceptance that it was out of my control was the hardest part.
For this particular narrative, I worked through the writing process in much the same way as I do for most papers or written projects. I began by choosing the topic. With the writing prompt of “scar narrative,” I remember feeling like there were a few easy choices I could pursue, but the interesting story was also the most obvious, so I went with that. After choosing the topic, I spent a good amount of time creating a timeline of events. Most of my papers start as lists of topics and key points, so beginning with a list of events and dates was a comfortable starting point. Having established the timeline of events, I went through and bulked up the list adding emotional flashbulb memories and specific points I knew I wanted to mention or specifically discuss within the narrative.
From there, it was easy enough to take the detailed list/timeline and make the events and bullet points into proper sentences and paragraphs. I remember struggling to seriously portray emotion within the narrative; I wanted the paper to feel sincere and honest to my experience, but I was also writing about being 14, so it created a strange dynamic. At some point, I decided to embrace the uncomfortable way the narrative unfolded, with its strange balance between an oddly serious topic and the tone of dry humor that I could never bring myself to fully erase. Once I accepted that the serious story had to be paired with tongue-in-cheek commentary, then I came to an honest telling of my experience. That was what I found was most important, finding a way to honestly talk about my own life in a way that didn’t feel gimmicky or too impersonal. For me, it’s that balance that made all the difference between an effective telling of a personal experience and just another paper for school.