We’re back from our “listening tour” of transplant institutions.
DFCI it is.
By the time we left the hospital it was all but decided that this would be the place. I felt understood, safe and for the first time in a while, really and truly hopeful. Not only had the transplant doctor actually heard of my disease, he had treated two patients with my exact disease and they had just passed their one year anniversaries. How do you ask for more than that? It was a welcome relief from telling doctors with twenty years under their belt, “See, it’s a disease called…, discovered in…caused by…” Here was a doctor finally telling me something I didn’t know. Yippee!
But as with most blind dates, the first five minutes of our meeting would not have presaged that outcome.
The doctor was not at all what I was looking for. What, in retrospect was him checking me out as a potential patient, came across at the time as standoffishness. He seemed to be questioning my presence there, my diagnosis, everything. Because some of my medical records hadn't arrived there yet (I shake my fist at you, Hopkins!), he asked me if I was sure that I had such a rare disease because, as I may know, diagnosis is not a simple undertaking. I said, "Yes of course", but was really thinking, "Are you effing kidding me with this?!!" Yeah. I just like to drive around with a mask on to random health care institutions, randomly claiming to have a rare disease so that they'll give me chemo for fun. Having an ordinary disease is so not my style, so I figured I'd come up with something arcane and challenging just to keep it interesting for us both.
I immediately decided I didn't like him very much. Which meant that I couldn’t possibly work with him on the (flawed?) theory that a guy you can't stand to be in a room with can’t possibly be entrusted with your life. He was very officious, quite cold, and obviously dealing with some serious lack of social skills, in my most humble socially-skilled opinion.
And then came the Red Sox. It came up in stilted, awkward, fill-the-silence, small-talky discussion that, being so close to Fenway, there would be opportunities for baseball games. He immediately came alive, talking about how he and his wife were trying to get tickets, being a fan, the whole Red Sox Nation discussion. He became a person; a rather warm and engaging person at that, finally connecting with me as a non-stranger. I considered it a sign from G-d himself. Or at least from David Ortiz.
Of late I have been becoming more attuned to things I consider signs. Perhaps it’s the natural human reaction to a lack of control over major aspects of your life. Your brain becomes primed to find meaning in randomness, to assign significance to seemingly unconnected or insignificant things, perhaps as a way to reassure yourself that the universe does follow some kind of order, that whatever is being hurled at you is part of some grand plan that you will someday look back on with wonder and humor and “I knew it would turn out fine as soon as I saw that '69 Chevy on Arbor Day 1986…blah blah blah.”
Whatever the reason for doing so, I like going with my gut, with my signs, with my instincts. Especially when the quantitative side of the equation is equal no matter what, as it is in my case. This way I will never look back and say I made the wrong decision, because having studied all the facts, sometimes the only way to finally move forward is to go with your intuition. Even if it's about baseball.