I think every one of us can recall at least a few "worst nights of my life"—those nights of pure agony where sleep is impossible, pain is immeasurable and morning never comes. Last night, for me: Oh my God.
My rapid decline has been as stunning as it is frightening. Just a few days ago I was feeling so optimistic I wrote an update which (in retrospect) I wanted to serve as a capstone or endpoint to me as a patient before my more mercurial side took over again. Apparently, my immune system has begged to differ. My issues are so intertwined I am like a house of cards; one wrong move and everything crashes down.
I am changing my name to Sisyphus.
It was just over a month ago—when I flew to New York to have my hand splint made—that I took my first brave steps out into the real, randomized world. Before then, we were careful that my healing would be as seamless as possible. My environments were controlled and I always had an exit strategy, mapped out hour by hour. I lived in my house in Grand Rapids watched over by MJ. I went back to work at the symphony using a careful plan to reintroduce the amount of stress gradually so the (literal) hole in my head would not open up. The bulk of the summer was spent in near isolation at our cabin in the northern woods. All of this was designed to control my environment so one random element (in the largest, abstract sense) would not derail my straight line of healing. Just a month ago when I flew to New York it was indeed jarring to be back on the streets, inhaling bus fumes and maneuvering past people wearing heavy fragrances. (In a symphony orchestra the use of fragrances is often restricted or banned.)
I survived the trip to New York and was emboldened by the notion that I could do normal things again. So, little by little, I did. I don't know if I can pinpoint the exact moment I decided to throw caution to the wind but sometime during the past few weeks I felt finally good enough to do anything.
When I went to Florida to premiere my new quartet and play the Mozart I must have picked up a germ or infection in the midst of all the plane rides and hotels. My immune system was more susceptible because I was pushing myself to the limit (something I had planned to do). In another strike against me, I had to use my diabetes insipidus medication liberally (the one that prevents me from needing to urinate every ten minutes). Because I didn't have the natural "breakthrough urination" every day, I was more likely to hold germs inside my body as opposed to flush them out. I don't know if I could have done anything differently with that particular medication; it's just the way it is when you travel.
When I returned home, I felt victorious having reached another goal. Yet I knew I was ever-so-slightly under the weather. In what was probably the tipping point, I decided to push myself just a tad more ("set another goal slightly out of reach") and I went cross-country skiing, thinking the fresh air would do me some good. It was only for an hour, and I felt on top of the world. But by the next day something wasn't right.
A cold, I thought.
So I bundled up for the next few days. Then the coughing started. When I played the second rehearsal of Beethoven's "Eroica" Symphony last Wednesday I had to bolt from the stage with the strangest sensation that I had to throw up. Yet I didn't feel sick in my stomach. I just wanted to heave something. I coughed for a while and then returned to the stage. Two nights later I was in the Emergency Room.
After last night (and with the help of antibiotics) it's finally coming out of me. For anyone who has experienced bacterial pneumonia, you know the horrid sensation of a foreign, sticky substance inside your lungs. As you lie still trying not to cough you can hear the air pockets inside your lungs opening and closing unnaturally, sputtering and clicking as barnacles and mussels do after the tide goes out. All night I hovered over the porcelain, my lungs regurgitating chunks of brown, white or red. Bit by bit. It all had to go and there was only one exit.
I must have finally collapsed by 5am. I slept a few hours. This morning I am supposed to go back in to see my primary care doctor for a follow-up appointment. Abdominal muscles, back muscles and especially external oblique muscles are so painful even touching them with one finger is excruciating. Yet that isn't the worst of it. The hernia on my left side (which has been surgically repaired twice and was a major source of pain up until five years ago) is now suddenly searing again. I wonder if the heaving and coughing from last night has caused the surgical mesh to shift or pull out of place again. It hurts too much to feel down there right now, but I will ask my doctor today to check it.
House of cards. The six-month MRI on my brain is still scheduled for Thursday. I never thought I would say this, but the MRI is the last thing on my mind right now.