Let’s Start at the Very Beginning

There really are no words for when you open up your eyes and can see. According to my father, the doctor came out of the near four hour surgery pumping both fists in the air and smiling ear to ear. He said the surgery went perfectly, They sent me home with a DVD so I can give one to my normal eye doctor. Apparently they will be using my video to teach the surgery. What actually happened in the operation room was that he removed scar tissue from both eyes. The scar tissue had been keeping me from getting full range of vision and was pulling the right eye up and to the right. Next, he essentially carved a piece of membrane from my lower lip and used to replace the missing membrane over my left cornea. Both areas were then covered with a lens made from amniotic membrane to help culture the cells and promote healing. It truly is amazing what science can do.

And prayers were with me full force. If nothing else, they made me feel like this surgery was possible, that this recovery was possible. I would not have made it quite so well without them, I am sure. And the next morning, I cried when they took the bandage off my right eye and I could see how many figers the assistant held up. It was an awe-inspiring experience. Almost surreal.

I spent the rest of the day fascinated by my newly recovered depth perception. I suppose it’s like going to your first 3D movie. I was captivated by every small movement. My hands, as a moved them in front of my face, actually went somewhere as opposed to simply getting bigger or smaller!

Of course, it wasn’t all sunshine and rainbows. My mouth hurt immensely, but I was starving! The Nathan’s Hot Dog Stand next to our terminal tortured me relentlessly, and my next pain pill never came too soon. I’m a bit better now, but things still hurt. What can I say? Surgery’s painful! Life’s painful. And we just keep living.

Still, the eye is somewhat zombie-ish, bloody and covered for now by the membrane helping to heal it. This is all good, though. Blood will help my eye to accept the new tissue and things will heal faster. Again, science is truly amazing. And it still seems strange to me that I started this (hopefully) final ordeal three years to the day I got sick. This will be possibly more difficult than recovering from surgery, but I think it’s time I put the words to paper. I think it’s time I finally tell my story. Like Julie Andrews wisely sang, “Let’s start at the very beginning. It’s a very good place to start…”

In spring of 2008 I was a promising young acting student at Wright State University. Pretty, if I do say so myself, and quite talented. I’d just had the opportunity of working with Patrick Tucker, the foremost First Folio scholar, in a workshop at school. I did a bone-chilling speech by Queen Margaret from Henry VI Part 3, and after my performance he had simply applauded. “That’s what it looks like when you take your bravery pills,” he said. “That’s Shakespeare.” Friday, May 9th, I had performed my five minutes exercise for my opposite character and gotten glowing remarks from my professor. Still, I wasn’t feeling 100%.

I was diagnosed with rheumatoid arthritis when I was two, and it went into remission when I was four. Seemingly, the crash course of ballet and jazz class every day had triggered a flare-up. I had begun seeing a rheumatologist in February, but she was young. She had put me on several medications, but nothing seemed to be working. Finally, she wanted to try Arava, an anti-rheumatic. She said it would have some implications for my liver and lungs, but we would watch that. I trusted her.

On Monday, May 12th, 2008, I woke up with itchy eyes and a few bumps in my mouth. I had to dash to ballet class, and was late, but then ended up skipping French that afternoon to take a nap. I felt awful. I had a colonoscopy scheduled for Tuesday because of some other complications with the medications I was taking, so I didn’t get to eat all day Monday, either. By the time I started sipping the Miralax that evening, I started throwing up immediately. For the next 11 hours I was not far from the bathroom. It was horrific.

My boyfriend at the time, we’ll call him Thad, was up visiting for before he went on a cruise with his parents as a graduation present. Poor thing stayed up with me all night, carrying me to and from the restroom. I repeat: it was horrific. The next morning, he called and canceled the colonoscopy for me. He and my roommate tried to talk me into going to the emergency room, but I was terrified of the costs. As a last resort, Thad held up a mirror for me to look at. I immediately agreed to go.

My lips were three times their size from the blisters and my eyes were almost entirely red. I made jokes for the rest of the day that I was the zombie version of Angelina Jolie. When we arrived at the emergency room, the nurse took one look at me before sitting me in a wheelchair and taking me back. The conversation when something like this:

Nurse (looking down at her computer): Name?

Me: Alexandra

Nurse: Social Security Number?

Me: X

Nurse (looking up at me): We have a room for you. Come right over here and sit down.

At the same time, my mother got a funny feeling and called me. As I was talking to the nurse, Thad picked up. All I heard him say was “We’re in the emergency room” before I snatched the phone away and immediately started calming her down. She asked if I needed her to come up. I said no. At least, at first I said no.

They had me in a bed within ten minutes and started admitting me immediately. At oine point, I had to use the restroom. I went down the hall. The nurse said all she heard was a scream and a thump. I had passed out from the pain of it. ***Uncomfortable Material*** Let’s just say I had begun getting blisters and ulcers on every mucous membrane.

When I got back to the room, they started a morphine drip. I spoke to my mom again, and again she asked if I wanted her there. This time, I said maybe. She booked a flight. The next doctor to come in was an internal diseases doctor by the name of Wunderlich. I kid you not. His name, I kept. He was very skeptical as to how I had come to the hospital, kept insinuating I was some sort of drug addict. I would’ve cracked up with laughter if there hadn’t been so much pain.

The next doctor was a third-year dermatology resident. He picked up on my signs right away and called for a biopsy. I remember he wanted to take a sample from my chest and from my shoulder, and I actually asked him not to use my chest because I was afraid of scarring… If only I had known. The results came back positive for Stevens-Johnson Syndrome.

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2 thoughts on “Let’s Start at the Very Beginning

  1. This brings back soooooo many memories… And, I must say, even though I know the story I didn’t want you to stop writing that second update! More, please.

  2. […] for the past seven years – since my SJS episode – have been like waking up with more than a few of those spoons shoved into my eyes. […]

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