Brooke’s procedure for implanting the diaphragmatic pacer is scheduled for this coming Monday, April 12. We’re in pre-op mode, beginning to wind down from the intensive trach-masking exercises that he’s been doing for the past 13 months vent-weaning here at South Davis, winding down in preparation for the surgery that, we hope, will make it possible to get off the ventilator, at least during the day and perhaps altogether. The idea now is lots of rest, relaxation, calm. There’s nap-taking, mental preparation, and even a sense of preliminary saying good-bye to South Davis, even though he’ll be coming back here after spending two or three nights at the University hospital after the surgery.
Brooke says that for him, it’s impossible not to envision the whole procedure. I can see myself being wheeled into the operating room, being given the first anaesthesia, all the doctors standing around, then waking up after the procedure with doctors and residents hovering around, waiting to see if the thing works. Our own doctor says that he really doesn’t know what things will be like after the operation; after all, it hasn’t been done in Utah before and he only knows about it second-hand, though he seems to be as excited as we are—and we are indeed excited.
But that’s forward-looking; at the moment we’re glancing back. Brooke says he had a episode of nostalgic feeling yesterday afternoon. I’m really enjoying this, he said to himself; I was able to do the chant for five seconds per word, and recite Wordsworth’s “A slumber did my spirit seal” line by line while on the speaking valve—I could go through a trimeter or even tetrameter line with enough breath-force to put real stress on the last word, which I’ve been unable to do before: “A slumber did my spirit seal; I had no human fears...” . I can be hoyered from the chair to the bed or the other way around without the acrobatics of having to switch the vent all around—I just go cold turkey, off the vent for those minutes, just breathing dry, unwarmed room air. I told the respiratory therapist I seem to be getting better and better at this breathing control, talking through the speaking valve with a deep, resonant voice. And today I read a page and a half-long paragraph from Proust’s Swann’s Way. I’m going to miss all this breathing work, frankly. Contrast this with the blogs from last year at this time, when twenty minutes was a triumph, and having an ecstatic experience during five minutes of a twenty-minute period was immense, but only the beginning. I really felt wistful yesterday, a very strong feeling.
Pre-op. This isn’t about the risks and benefits of a surgery in the conventional medical sense, though of course we’ve thought through those. This about something that is clearly a benefit but feels as though it involves a loss, though not one measurable in the usual medical terms. We start over again with something artificial, something that will control my breathing, that will produce regulated breaths, the timing not under my own control although the breaths will be my own, in the sense that it will be my own diaphragm producing them. Of course this is a giant advance over being on a full ventilator, but just the same, it makes me nostalgic for what I imagine will seem like the good old days (as awful as the early trach-masking was). I’ve been waiting for this implant for at least seven months and am extremely eager to have it, but just the same with a tinge of regret.
In the meantime there are three days left to enjoy this breathing process as it is, chanting, reciting poetry, reading prose aloud. We don’t really know what’s coming—who knows, maybe being able to recite a heroic couplet or a series of enjambed iambic lines, or speaking aloud even longer and longer paragraphs of Proust. And then there’s just plain talking, the way regular people do.