One year post Stevens-Johnson Syndrome (SJS)

How do you commemorate a traumaversary?

An entire year has passed since I was hospitalized for Stevens-Johnson Syndrome (SJS)/Toxic Epidermal Necrolysis (TEN) — a rare yet severe allergic reaction to a medication that began my month-long ICU stay.

While blind and intubated for those first few weeks, I felt helpless and captive in my pain as the disease burned me from the inside out. Time moved so slowly that I could feel every second of the clock ticking in that chilling hospital room.

Though the acute phase is long gone, the road to recovery has been just as challenging. I’ve had 52 doctor’s appointments — exactly one a week — with a whole suite of eye, skin, and lung complications I face daily.

When I finally left the hospital, I spent the first few months isolating indoors, only leaving my apartment for doctor’s appointments. I was not only physically and emotionally drained, but I was instructed to avoid the sun at all costs while my wounds were still fresh.

It felt eerily like the early stages of the pandemic again — except this time, I was the only one quarantining in my own nightmare. I couldn’t help but feel that my health had become my detriment, all too young at 23.

Yet, in the face of such hardship, I had no choice but to persevere. While time was critical in my recovery, it was a balancing act between giving myself grace and letting my body heal at its own pace.

“Grief is an experience that moves through waves in the body and begs for expression.”

Rob Bell

Once the dust settled, my grief was gnawing at me to make sweeping changes in my life. It’s amazing how resilient the human body and mind are when you step aside from your feelings of indignation. Like the signs of early spring, I started to notice sprigs of new hair growing where clumps had fallen out.

Right around the new year, I took up running. Although I had lost 20 pounds in the hospital and my muscles completely atrophied, I proved to myself that I was just as capable of bouncing back. What started with one daily mile turned into 600 cumulative miles and counting.

My grief also encouraged me to design a new routine, something that would nourish my soul first. I took a giant leap in my career and quit my corporate job, taking up freelance writing and editing instead. I rekindled my childlike love for learning with Spanish lessons in the mornings and falling asleep to audiobooks. I even picked up piano after 15 years, stumbling over the keys for no other reason but to learn to play my favorite songs.

As I approached a year of my recovery journey, I knew it was also time to say goodbye to New York, the city I had called home for three years. Before my official move, I wanted to stop by the hospital. I imagine that most patients who survive the ICU never want to return, but after all this time, it felt like the closure I needed to lay this chapter to rest.

“Who are you here to see?” asked the security officer.

“I’m actually a former patient,” I replied nervously. “I wanted to see if I could drop off a few thank you cards to my nurses and doctors.”

“Go right ahead.”

On the day of my discharge, I was still blind, so I had no idea where I was headed. This was the first time I navigated the hospital by myself, sans wheelchair. Once I took a few wrong turns in the maze of hallways, I arrived at the packed elevator. It moved unhurriedly — stopping at every floor — until I found myself alone again.

I took a deep breath as I entered the burn center, not knowing what would come next. The unit was unmistakably quiet that day, interrupted only by the beeps of the in-room monitors.

“It’s Stella,” I said as a few of my nurses passed by. “Do you remember me? I was here a year ago…”

They had never heard my voice before this day, let alone seen me without a feeding tube or covered in blankets of gauze. But I remembered them vividly — how they held my hand and encouraged me to keep fighting.

We all cried.

I even saw my room, the crime scene no longer at play. It was free from all the taped-up pictures on the wall and birthday decorations from when I turned 24. I’d like to think the room stayed this empty after all this time, although I recognize this level of peace and stillness in a critical care hospital room is anything but ordinary.

I peered out the window overlooking the city from the Upper East Side, the sky as bright blue as the September days I spent here, and gave the Empire State Building one final goodbye.

2 responses to “One year post Stevens-Johnson Syndrome (SJS)”

  1. Hey Stella I just happened to stumble upon your twitter account first and just read your story here. First of all it’s very inspiring and touching to see how you’ve been able to overcome your obstacles with SJS. You have great talent in writing and I hope in this chapter of your life you get all the best blessings moving forward. Stay strong and keep going you got this!

    1. Brian – thank you so much for reading and your kind words. Appreciate it dearly.

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