Every morning during his trach mask session, Brooke works with his speech therapist on intonation and breath control by reading aloud while off the vent and on the speaking valve—the exercise here involves using the diaphragm to produce variations in intonation and emphasis, and learning how to pause while one is speaking. The therapist calls this prosody—a label that of course has a familiar ring to an English professor. The two texts that Brooke has been working on over the past month have been Wordsworth’s short lyric “A Slumber Did My Spirit Seal” and the Overture to Proust’s Swann’s Way.
The Wordsworth involves metrical considerations and the ability to complete a tetrameter line in one breath:
A slumber did my spirit seal:
I had no human fears.
She seem’d a thing that could not feel
The touch of earthly years.
No motion has she now, no force;
She neither hears nor sees,
Roll’d round in earth’s diurnal course
With rocks, and stones, and trees.
What the speech therapist praised him for the last time was the passion he managed to put into it—you’ll recognize Brooke in this—and managing to do it with his own real voice.
The Proust contains sentences of enormous length and complexity, the articulation of which is a test of endurance more than anything else. The most recent reading involved a paragraph of about five sentences that’s over a page and a half long; the idea is to read in one sitting, as it were, the whole long paragraph as one coherent, sustained expression.
All this work is in preparation for the implantation of the diaphragmatic pacer, about which we’ve been talking a lot in this blog. The work on intonation and articulation contributes to strengthening the diaphragm and achieving voluntary control. The curious thing, and something we don’t quite understand fully about the pacer is the relationship between the training Brooke is doing now and what the effect of the pacer will be. After all, the pacer paces. It paces at regular intervals, which can be programmed at various speeds, but as we understand it the pacing pulses will be at regular intervals, not the long and short patterns of ordinary speech, the variations in speed and depth of inhalation and exhalation, and many other real-life features. The fact of the matter is that we just don’t know what will happen after the operation, in the weeks that Brooke will spend back again at South Davis, completing we hope his weaning from the vent—what his breathing and voice will be like on the pacer. Will the delights of practice in prosody still be possible? Indeed, like everything else in medicine, nobody can predict exactly what the pacer will make possible—after all, this will be the first surgery for this particular model of pacer in Utah—so everyone here is entering somewhat uncharted territory. Of course, the device has been approved and has already been used in over 150 patients, but it will be the first time an implantation has taken place in this state.
It will be the first time in Utah, but not the last: the implantation, to be performed by a specialist from Cleveland, will also involve training a local surgeon to implant the pacer—not just for people with high-level spinal cord injuries, but, potentially of great significance, for people with ALS or Lou Gehrig’s Disease, to make it possible to stave off needing the vent for an additional year or more. So part of what’s involved in looking ahead to this operation is the sense of contributing to keeping life better for other people, including a close friend of ours, in a way that wouldn’t have seemed possible not so long ago.
Brooke says, it’s a tremendous adventure, and I feel tremendous excitement about heading into this territory. I just can’t wait, he says. Of course this makes it frustrating that a date hasn’t been pinned down yet, though we’re hearing rumors that it’ll happen sometime during the first two weeks of April. It feels like a cure, in a way, a cure for having been tethered to the vent for over a year, and while the vent of course has been life-sustaining, it seems time to move beyond it. Whether this will be possible we don’t of course know, and one is always aware of the missteps that can happen, but at the moment it seems, as Brooke says, like a tremendous adventure, a tremendous, optimistic, eagerly awaited adventure.
Oh, and speaking of cures, Peggy’s pneumonia seems to have disappeared.