We’ll call this Day One. I started therapy today. You know, most people won’t admit to that out loud, but I think it’s very important to say it. I think it’s important to let people know that when you need a little help, it’s okay to get it. I did very much like the woman I met with today. We only had 45 minutes, so we managed to get only so far, but we still covered a great deal of history. I had forgotten quite a bit of it, really. I have very specific goals for these sessions, beyond just having someone to talk to. Like many, I have unresolved issues from childhood. And, like some, I have some serious rethinking to do about the coping skills I’ve created for dealing with my health issues. This blog is definitely one of the better ones I’ve come up with. So let’s keep it going…
Blisters and ulcers had essentially removed all the skin from inside my mouth, so I was refusing to eat for obvious reasons. It hurt so incredibly much, even with the morphine. And my salivary glands were overproducing, so for most of the day someone had to hold a suction straw in my mouth to keep me breathing. It was like constantly being at the dentist. But I don’t really remember all that. Instead, I remember the ongoing discussion of getting a feeding tube into my stomach. It was getting to the point that I could no longer take down oral medications, and I desperately needed calories.
I had lost quite a bit of skin by the time they first tried to intubate. See, a feeding tube is actually guided down to the stomach through the nose, and intubation is needed to keep the breathing passage open during the procedure. And for some reason, this was all done in another part of the hospital. I would need to be moved to a rolling bed and taken down to that room. A lift team was called.
A lift team consists of four men who literally lift you up and set you down. They are strong but gentle. If you have ever been burned, think about what it felt like to leave that burn unattended and then touch it. Doctors would later describe SJS to me like burning from the inside out. So imagine that burn is all over your body. And imagine they want to move you. Sliding is not an option. Heck, in my mind, moving the sheet over me was not an option. Let’s just say the morphine kept me from realizing the horrendous immodesty of losing most of my skin and being vehemently against anything touching the new skin.
The lift team came and put me, excruciatingly, onto the rolling bed. A sheet was delicately lain over me, and I was then entrusted to a young man who was helping out at the hospital for the day. I remember that I was hallucinating a million stars as he wheeled me down the corridor. They had asked me to keep my eyes shut in order to minimize damage, so I imagined the most beautiful array of stars and planets in the “sky” above me. Looking back, I can certainly understand why people become addicted to morphine and other hallucinogenic drugs. It was lovely. I tried to explain it to the boy pushing around my bed, but he was quite uninterested and even annoyed. Unfortunately, the doctor refused to intubate. The sloughing had spread down my throat, and he was afraid of doing permanent damage. I’ll admit that I didn’t sing for nearly a year after I left the hospital because I was terrified that I couldn’t. So I was sent back up to my room. They weren’t expecting me back for some time, so not even nurse Jamie was around. The boy was irritated with having to babysit me, so he suggested not waiting on the lift team. I begged him to call Jamie.
“Please, don’t move me,” I pleaded. “Just wait a little longer. Call the nurse. They’ll be here soon. Please, please don’t move me.”
But he didn’t listen. He grabbed a nearby nurses’ aid. We’ll call her Jennifer. The two of them slid the rolling bed up against the stationary one. I was screaming at this point for Jamie, for my dad, for anybody. Tears poured from my eyes as they gripped the sheet, one at my head, the other at my feet. My screams split new rips in my lips, and I could taste the blood. I cursed at top volume, condemning them both to all sorts of awful places, and the salty tears stung my blistered cheeks.
There is a webcomic, xkcd.com, in which one strip a figure is asked to describe his pain on a scale from one to ten, ten being the most pain he could imagine. In the next box, he is drawn curled in on himself, rocking, obviously terrified by the pain he has imagined. The pain I felt as they slid me from one bed to the other, my new skin scraping not only against every tiny ripple in the sheet, but against each crevice between the beds, like knives into an ugly sunburn, this is the pain I will forever imagine at ten.
Afterward, the girl was horrified. I remember weeks later, as I took myself off the morphine and began talking with the nurses and nurses’ aides, she was often assigned to my room. And during her shifts, I never went without. I’m certain it’s because she felt so badly about what happened that day. The boy simply left. It’s strange how unpredictable people can be. Even stranger is how we react to being wrong. For some, being wrong is something we must right immediately, but for many, it is something we must deny and blame on others. I’ve run into this quite a bit at my current job as a customer service representative in a call center. People are always the most angry when they’ve messed up in some way. I didn’t pay my bill for three months? How dare you suspend my service! What a horrible company who has sent several notices letting me know that the bill was past due. They should have known exactly what was going on in my life and reacted accordingly. It’s sad, really. And we all do it to some degree.
Eventually, they had to intubate in order to insert the feeding tube. My uncle would later be unable to tell me exactly how helpless he felt when he walked into my room and saw a giant tube protruding from my mouth. At this point, they had also begun debridements, and pig skin grafts were placed over the new skin to help it heal. But that’s a story for another day.