I set the alarm for 5:30, and for the first time this summer I didn’t hit the snooze button when it went off. T1 and I are staying at a little tourist motel near Hanover New Hampshire. It has a lovely view of the river, and the only update to the motel since the 1970s seems to have been the addition of a 40,000 inch flatscreen TV that occupies most of the usable space in the room. I got up early to grab a shower, laughing hysterically as it became clear that the chrome fixture with the temperature control label was purely aesthetic. it’s not the Marriott, but I don’t think I would’ve had such a giggle there, and we have to be someplace to be at seven where a little levity is necessary.
For most of the last few months of been too tired to get up at my normal time. We’re still driving to the hospital every week or every other week. Today, we have to be at the lab to get him typed and a blood transfusion. None of the six medications he’s currently taking are controlling his inflammation, and he’s been anemic long enough to affect his vital signs. Our doctor was frank with us that his case Is severe enough to warrant a conversation with a surgeon today once we’re done with the transfusion.
T1 has been a rock through every diagnostic procedure and prescription, but recognizing that the surgical option, which could turn out great but also could leave him with a bag for the rest of his life, has been moved from the back burner to the front spooked him. Normally quiet and introspective, he’s been talking about implications and benefits.
We all know this could torpedo his college plans for at least a semester, but none of the conversations involve him asking, “why me?“ Once again, I think to myself how proud I am of him. But when I’m alone, when I’m driving in the car where no one else can see — even though I know these things aren’t about who deserves them and that there are other people with exact same disease are in much worse situations — I cry.
I once wrote how, thanks to a poorly planned and executed school assembly on teen suicide, I suddenly realized that everyone else in the world did not walk around thinking about suicide at least once a day. I did — and still do.
Death has been one of my back burner options for as long as I can remember. Most of the time it’s barely simmering partly because the front burners have been really occupied and partly because I’ve never settled on the right recipe.
Picking a recipe takes consideration and some focus. It used to be the kind of thing that had me saving coupons for sleeping pills. Now it’s the kind of thing I debate while driving home, wondering how to fake an accident so the kids wouldn’t have the knowledge that their mother had willingly left them. It’s also the sort of muddling that is easily interrupted by weighty questions like “what’s for dinner?”
I learned a long time ago that not only were these debates not normal, but they were part of bipolar disorder which had been presenting symptoms since I was two. Like T1’s illness, bipolar is sporadic in its intensity but permanent.
Most days in my car, the tears are exhaustion as much as they are grief for the senior year activities he’s mostly missed, the job he had to quit, and the plans he may need to delay. They are always mixed with pride. What has surprised me this year is that the tears never accompany nor are accompanied by resignation.
My back burner option is still there. Weekly drives to the hospital, work and fully caffeinated creative time, however, have deprived the pilot light of the attention it needs to stay lit. His illness doesn’t make mine go away. I’d keep my debate boiling on the front burner for the rest of my life if it could spare him one more week of pain and fatigue, but there’s a great thing about T1, about both boys.
Even when their antics can’t get through a wet blanket of a depressive episode, they do make my life better. They give it purpose when all other purposes in my life have become trite or meaningless. That purpose switched off the alarm this morning instead of hitting the snooze, and, with the aid of a bit of maniacal giggling under a trickle of shower water that seemed to flow alternately from Alaska or Mt. Vesuvius, it helped send a thoroughly unproductive debate down the drain for the day.