Text by Marie Faro
Art by Lance Uy
A diagnosis of Stevens Johnson Syndrome (SJS), an excruciating, traumatic illness that wreaks havoc on every inch of your body, recently sent me spiraling physically and mentally. But it was the question of my own mortality, and the flimsiness of existence that navigated me towards recovery.
Stevens Johnson Syndrome is a rare, serious disorder of the skin and mucous membranes. It is the body’s severe reaction to certain medicines, and usually requires immediate hospitalization. SJS starts with flu-like symptoms; fatigue, cough, sore throat, and joint pain. Rashes then spread throughout the body, followed by burning, swollen eyes, and mouth sores.
The illness is rare and unpredictable, and the list of medications that can potentially cause it is broad. It ranges from antibiotics, to antipsychotics and even to anticonvulsants. According to a study conducted by Cleveland Clinic, the effects of SJS can be fatal. It results in death in 10% of patients, 30% of which suffer from TEN (toxic epidermal necrolysis) — a much severe version of the illness.
Now, imagine the amount of anxiety and fear I felt, as an anxious hypochondriac, reading the words “rare” and “fatal” over and over again. I was fully convinced that the end was nigh. My days were numbered, I kept telling myself.
I was possibly at my “Season Finale.”
Scaring myself is not exactly a brand new concept for me, however; I’ve been a hypochondriac since I was 10. But this time, I was genuinely sure that I was on the brink of losing my life. I was praying for every god to spare me (despite being an atheist), but at the same time begging for all of it to end as I was in so much pain. To say that my experience was horrible would be an understatement, but I somehow got through it.
My predicament began to unfold during the cusp of a brand new year. You know how it gets between December and January, right? It’s the hustle and bustle brought about by 2022’s unfulfilled resolutions, combined with brand new ones for 2023. During these two months, everybody’s grinding. So it’s normal for days to fly by so quickly.
I promised myself that I would improve my life just in time for the new year, not fully realizing that it would cause me to stop living in the moment. I was so absent — I was practically on autopilot. I began to feel symptoms around late December, but I passed them off as my body adjusting to my new routines. I made myself believe that it was normal to feel nauseous everyday. After all, I did suffer from COVID-19 in the past. I was no stranger to feeling sick.
First it was nausea, then the fatigue and flu-like symptoms. My feet and hands began to itch within that week, then suddenly, out of nowhere, I had blisters on my mouth. I knew something was wrong, but I was too nervous to think critically.
I am afraid of doctors, have I mentioned that? It took me a while to finally schedule an appointment over the phone, after which I was misdiagnosed with a disease that mostly children get: Hand Foot and Mouth disease. In the doctor’s defense, our consultation was through the phone, and not in person. But at that time, I ran with whatever I was told – I just wanted to get better. So, I was advised to take vitamins and wait for the rashes to leave, but the quick progression of the pain that I felt made me realize that I would not survive at home, especially not without medical supervision. For once, I was right.
Life moves much slower when you feel like you’re truly going to die. Suffice it to say, I preferred COVID-19 over Stevens Johnson Syndrome — at least then I wouldn’t be itching and hurting everywhere. Instead of a mouth full of ulcers and a burning tongue, I would simply not be able to taste anything. I wouldn’t be covered in blotches of red, and my lips wouldn’t be covered in dark scabs. And it’s funny, because the first time I had COVID-19, I also thought I was going to die. My experience led me to to understand that the internet was right; there is no definitive “rock bottom”.
Being in the hospital bed for days made me realize a multitude of things. One is, that we humans are extremely fragile, both mentally and physically. On top of that, we are mortals who can barely live up to a hundred years at this point in time. We don’t have a say in what happens to us in the grand scheme of things. It doesn’t matter how healthy you are, or how “correct” you live your life; if the universe says that you’re in your “flop era”, then you are in your “flop era.” And you can’t do anything about it.
Unfortunately, we humans desire to be in control. That is why we’ve had too many dictators throughout history, and world leaders who are so easily blinded by power. But whether we like it or not, we are all tiny specks of dust existing within a continuously expanding, colossal orb of infinite possibilities. We are nothing compared to the heavenly bodies that exist far beyond our reach. But that doesn’t mean we should do nothing with our lives. We’re already here. And each life, I believe, is its own universe of infinite possibilities.
Where am I now? Recovering at home, thankfully. My doctor had told me that it would take a long while for me to fully recover from Stevens Johnson Syndrome, and despite being an easily-discouraged, impatient, flawed human being, I am okay with it. Though, I would be lying if I said that the scars all over my hands and feet didn’t bother me tremendously. I feel ugly. But I’m happy to be alive. I’m happy to be here.
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