Two weeks after our last account of the diaphragmatic pacer, Brooke is now on the pacer for about eight hours a day, usually three hours or so in the morning and five in the afternoon. He is able to be hoyered into his wheelchair and to go downstairs to the rehab gym while the pacer is in action, and he can talk quite well indeed—at low volumes, higher volumes, and in sentences with as many as fifteen syllables. This has happened in just two weeks—rocket time, it seems. He can recite poetry, and he’s working with the speech therapist at making his voice less gravelly and more fluent, to try to prepare it for everyday life and using his voice activated computer again (which he hasn’t used for some time). The psychological breakthrough occurred sometime in the middle of last week, he says, when he broke through his resistance and fears about being physically lifted into the chair with the external pacer battery-pack attached in a fanny-pack around the belly, and decided, what the hell, I have to do it sometime, so let’s do it now.
Oddly, though, we don’t have anything particularly profound to say about any of this, except that it’s uncanny to be approaching “normal” breathing. Life in this room has become a very practical affair; alas, no more deep spiritual experiences in controlling breathing, just breathing while listening to books on tape and sometimes almost sleeping during a session while the books-on-tape voice drones on in the background. The photograph of the Buddha is still on top of the armoire that holds the television, but I don’t relate to it as I have in the past; I’m just working hard at this point to strengthen the diaphragm and push as hard as I can to get to the point when I can be on the pacer for not just 12 hours at a stretch, but 24. The doctor even says that it may be possible to experiment with taking the pacer away for a period of time, to see if the diaphragm has become strong enough to allow me to breathe entirely on my own for a longer period of time. We’ll see.
What happened to that communication with the Buddha image? When I was doing trach mask, I was really conscious of breathing out, breathing in, voluntarily and deliberately, but now the pacer breathes for me. I take deep breaths, at the advice of the speech therapist, but it’s not quite the same. The pacer breathes for me 14 times a minute, no matter what. Of course, I knew this would be different, but while it still requires endurance it takes away some of the beauty of that earlier effort at breathing. Actually, now that I think about it, it’s also peaceful to lie here calmly while the pacer is working, observing inhalation and exhalation, rather that trying to do it: just letting it happen.
I’m also learning how to speak on the exhalation. Poetry seems to sound better somehow on the pacer, perhaps because one has to deliberately pause because of the pacer’s rhythm, and that can give emphasis to the rhythmic complexity of various lines, like the opening line of Keats’ To Autumn: “Season of mists and mellow fruitfulness…” Peggy was sitting in the green chair grading papers (it’s the end of the semester) and I was reciting these lines; they sound pretty good. The speech therapist is trying to get me to talk not with my larynx but also with my face, lips, cheeks, so I’m to speak in an exaggeratedly mellifluent way: SEAson of MISTS and MELlow FRUIT-ful-ness…. We’ve been listening to Tony Heilbut’s new DVD How Sweet It Was of the great era of gospel singing in the 1950’s—now there’s mellifluent articulation, indeed sweet it is.
But none of this leads to deep questions of the meaning of life or the whys and wherefores of accidents, or why the nights should be so filled with spinal-cord pain and sensations of burning or freezing, but just to the goal of being able to breathe and speak normally enough to come home, to teach a class in the fall (which I’m planning to do through OSHER: the topic is Thoreau’s Walden, which needs to be read very deliberately, carefully, perceptively—but that’s another story, for the class). Peggy’s still working on modifying the house, and a wonderful neighbor came this morning and planted pansies in the empty pots sitting on ledge in the front porch, and the early-May snowstorms seem to be over and things are looking pretty good. Eight hours on the pacer. Modern technology. Wow.