In the quest for answers, I got to the point I didn’t care what was wrong with me, as long as they knew what it was. Knowing is a very small, albeit very important part of effectively managing a disease. Even three years after my initial diagnosis, my symptoms weren’t manageable. They continued to get worse.
I spent a considerable amount of time in the hospital over the past 14 months, and to me, that place is hell on earth. The longer I was in, the more difficult it was to cope.
I had psych consults during all but one of my hospital stays. It made me question my sanity and everything I had done up until that point. I figured I was just a sick girl doing her best who happened to need a little help. My situation concerned them, so I was drilled, washed, dried on high. Big time shrinkage. The result was me being super depressed just in time to be discharged. Fuckers.
One of the psychiatrists got to me on day 13 as an inpatient. By then I was so sleep deprived I was hallucinating. It was difficult/impossible for me to pretend I wasn’t going stir crazy. He asked me “what’s the worst thing we could tell you” in the context of my illness.
“Are you afraid you’ll die?”
“No. I’m afraid I’ll live.”
As I let what I had said sink in, I got the strong sense that I obviously said the wrong thing to the wrong guy. Fuck, I’m busted now. Gone was the fake world of never ending s’mores, fresh air, puppies, and a straight Matt Bomer. I was bitch slapped by reality. Enter the waterworks.
He asked me to explain what I meant. Since I had already dug myself a nice big hole, I figured I may as well jump in.
“I’m afraid I’ll live a long life in the same state I’m in now, which is essentially purgatory. I’m alive, but I can’t live. Dying seems like a better alternative, so make me happy and tell me I’m terminal.”
It was something like that, anyhow. I’m afraid that the hope of “feeling better” that drives me, will eventually decay. (Un)Fortunately, life is terminal no matter what.