So I have actually melted back toward vegetarianism today. I ate nothing with a face, but did enjoy some feta cheese. Mmm… I must say there really is nothing like meeting up with people you care about and people who care about you, especially when you feel down. To have them ask “how are you?” and actually want to hear the full answer is not common, and it feels nice. Also, it’s amazing how simple a smile can be, but it can change your entire day.
I did some yoga this morning, first time in… six or so months? I really needed that. They tell you that if you smile while doing the yoga, it helps you relax even more. Well, I was just a mess. I kept smiling and ended up crying, but I kept doing the poses. I kept breathing through everything. And by the end? I was actually smiling for real. It was a nice change. So here are some funny stories (at least to me) from the first week in the hospital…
Catheters ***In case the title wasn’t enough of a warning: Uncomfortable Material***
The thing I most remember about the first day in the hospital, truly the most horrific experience I believe anyone will go through in a hospital (if that person is the patient) is having a catheter inserted. I think this is the experience God must have had in mind when he gave us the ability to say, “aaaaauuuggghhhhhllll!” Add a lot of blisters, several nasty ulcers, and so much swelling the nurses have no idea where to begin even looking to put it, and no amount of morphine can disguise that pain. The procedure would be repeated four times during my stay. Delightful!
When I was first wheeled up to a room, I met a lovely male nurse we’ll call Jamie. He was my man for my first few days there. At this point, I was still just in the main section of the burn unit. As it had been hours since I’d been able to use the bathroom, I was begging for a catheter. I had no idea what insertion would entail, so I was simply focusing on the part where it would be able to pee. The dermatologists came back up and began blahblahblahing about various types of treatment. Again, I was more interested in a catheter and higher doses of morphine.
They immediately had me start drinking this awful cinnamon stuff to try and flush the Arava out of my system. Let’s just say spicy cinnamon is not what you want flowing over your blistered, ulcered lips and tongue. It was excruciating. The doctors told me there was a treatment that had no proven results for helping SJS work it way through your system faster, but we should try it anyway. Each treatment was $15,000. I told them they were crazy.
When two female nurses finally did arrive to insert the catheter, Jamie ushered everyone else out the door. They were very nice ladies, I’m sure, and I liked them very much when they came in. After they started, however, I was pretty certain they had been sent from hell to torture me for some unremembered wrong in my past. One held me down while the other tried to figure out how to make it work. The first few tries were unsuccessful and left me screaming a string of curses with tears drenching my blistered cheeks. On the third try, they finally made it in, and while everything still stung, I was immediately grateful. And almost as immediately, I was asleep.
I slept a lot those first few days. Doctors would stream in, ask a bunch of questions, and then I would go back to sleep. I only vaguely remember my mother showing up, and I made Thad leave pretty quickly. He was so worried, and I just couldn’t take him staring at me all the time. We’d been fighting for months, and I finally realized that if you don’t want the person you’re with to be with you when you feel your worst, you probably shouldn’t be with that person. So I convinced him to leave and go on the graduation trip he’d planned with his parents. I sunk back into my morphine-induced dreams.
The entire time I was in the hospital, I continually told all the doctors and nurses corny jokes. Chuck Norris jokes. Knock knock jokes. My favorite at the time seemed to be blonde jokes. And they were happy to return the favor. Humor has always been a sort of coping and defense mechanism for me, so I suppose laughter was my way of fighting through the pain. But the funniest stories we have from my time in the hospital were my hallucinations. I was lucid enough to realize I was hallucinating, so I would tell whoever was in the room what was going on.
My mother’s favorite hallucination was when I told her we were all in a big spaceship. I looked out the window, and all the Disney villains were there to fight us. There was even a LEGO Elvira. My favorite was when she and I were sitting down to tea with Darth Vader. He and I started quarreling and then there was a hand coming out of my chest. Needless to say it started a coughing fit, but I still think it was pretty cool that I got to sip tea with Darth Vader. Don’t ask me how he managed with the mask and all. He’s just that awesome.
When my mother had to go back to work, my father flew up to take over staying with me. He would get there around 6 am and stay until midnight or so. I’m pretty sure he ate pizza at least once a day. He said that I would keep telling him to get two ladies out of my room. Of course there were no ladies in my room when I said this, but he found it amusing nonetheless. I like to think they were my two psyches, arguing about how on earth I got into this mess and what should be done to get out of it.
Other hallucinations involved the elaborate hospital rooms my mind would create. In one room, the bed was a giant mahogany four-poster with fluffy pillows and soft black sheets. Another room was entirely themed in Pirates of the Caribbean. I was dressed as Elizabeth Swann in The Curse of the Black Pearl and everyone looked like we were going to a party. On that day, for some reason I thought I’d gotten stuck in the bathroom. Apparently they’d wheeled me out somewhere, and left me for just a moment. I spent the rest of the day convinced they’d left me locked in the bathroom so they could party without me.
For more than one day, I thought my bed was a clear bubble. I was stuck upside-down in it, so my head was near the floor. That was my reasoning for not being able to see anyone’s face. In trusth, they had me keep my eyes shut for the first few weeks. Without knowing what SJS would do to my eyes, they were fearful of scarring. And rightly so. Scarring on my eyelids scraped off the epithelium, or “eye skin,” from my eyes. It mostly grew back in my left eye, but the stem cells were completely destroyed in my right eye. I would spend the next three years trying to figure out how to make it better.
It truly is remarkable how the body reacts to losing a sense. I began to recognize people from the sound of their voices. Even after they had me open my eyes, I would have to have the nurses talk to me before I knew who they were. If nothing else, I definitely appreciate the sound of someone’s voice far more quickly than I ever did before.