After the fever subsided, life has returned to normal, or rather, its new normal—routine days in the hospital, working on breathing, physical therapy, socializing with friends, and letting the wounds keep healing. Of course, it’s not entirely normal or even the new normal, since the three bags of antibiotics are still hanging from the IV pole and we’re still on general alert. But things are much better, and the wounds are indeed healing.
The new thing is the speaking valve. Of course, Brooke has been working on the speaking valve for maybe six months, maybe even longer, but it’s only recently that he’s been beginning to take off with it. When he started, it began with the same sensations that trach mask began with—panic, anxiety—but he has gradually worked up from five minutes, then ten minutes, then twenty minutes—now he’s at forty-five. The speaking valve—we’ve described it a bit earlier on—is a small purple plastic cap device that fits over the opening at the end of the trach. It’s got a membrane that’s a one-way valve—it lets air in through the trach, but not out through the trach. Instead, on the out-breath, you have to push the air out through your mouth or nose.
You begin by making simple sounds, Brooke says like aaaaaaah, ohhhhhhhhhhh, ummmmmmm. These sounds were very indistinct at first—I could count to five, maybe, but that’s all. I’m working with a speech therapist who gives constant reinforcement—it’s very easy for your mind to get in the way and you say things like I can’t do it and I hate this and when I get off this valve I won’t be able to continue with the trach mask trial, and indeed sometimes you can’t keep going at all. But you do keep going, breathing in and then holding your breath for two or three seconds, and then breathing out for three or four seconds, until every last bit of CO2 is exhaled. You suck your breath back in through your nose, breathe out through your mouth, then back in through your nose. The anxiety that you feel is held very tightly in the shoulders and the neck, which need to relax as much as possible—this is more difficult than it sounds. Imagine an opera singer who must work with his or her diaphragm to produce extraordinary sounds, often at great length—this takes an amazingly strong diaphragm and great control, both physical and psychological. You have to relax the whole upper body. There’s an analogy to what is going on in this process—imagine if you’re giving a speech or teaching a class, the same applies: if you’re tense your voice sounds constricted, unnatural; if you’re relaxed, your voice comes out with natural intonations. But for me this process as it goes on is constantly being interrupted by voices, almost literally voices inside one’s brain, like cries for help, don’t do this to me, don’t put me through this.
When Peggy happened to come in, this is what she saw: a man in the throes of anxiety, trying to do aaaaaaah, ohhhhhhhhhh, ummmmmm, but it was obviously really hard. Then the speech therapist asked Brooke to think of the calmest, most peaceful scenes—for instance, he recalls, the time when we swam in Lake Florence, up under Lake Blanche, up in the mountains above Salt Lake; it was autumn and the water was almost warm. We floated separately and together, and the whole forest around us was reflected in the perfect stillness of the lake. Then we got up on the bank and lay on the grass with nothing on but the sun on our skin, one of the most delicious moments of my life, says Brooke, and mine too adds Peggy. The speech therapist asked Brooke to feel the sun again and the sensations of the water. Thinking of things like this are classic meditation and calming techniques, but what is not classic is that you’re breathing off the ventilator using a diaphragm that has atrophied, but is now beginning to regain strength. This is what the speech therapist has been trying to accomplish, calming and relaxing so that speech becomes more and more natural off the vent, and she has been doing it wonderfully well. The aaaaaaaaaah, ohhhhhhhh, ummmmm are indeed exhausting, but then Brooke and Peggy tried doing them together, Brooke eventually holding the sounds almost as long as Peggy could, a matter of great progress. And they morphed into Om, Ah, Hung, the sacred syllables taught by the lama and posted on the wall so that we could chant ommmmmm, ahhhhhhhhh, huuuuuuuuuuuung together.
The speech therapist left us alone together when she had to go on to another assignment—that reawakened the panic, even though Peggy was in the room with Brooke, but repeating ommmmmm, ahhhhhhhhh, huuuuuuuuuuuung succeeded in restoring calm. Brooke finally finished the session after an hour and forty-five minutes, a new record, a full hour longer than the previous speaking-valve time. It’s one more step not only in strengthening the diaphragm but towards normal breathing and speaking function, something the rest of us all take for granted but for Brooke has to be entirely relearned.
In the meantime, however, he uses his vent-voice most effectively: when Peggy arrived this morning she found him teaching English to one of his favorite Spanish-speaking aides, one who gives him the most gentle and understanding care. The aide’s English is already pretty good, but Brooke was pronouncing exquisitely carefully for him all the various difficult English words in a talk he was preparing to give. Here, Brooke’s vent-voice was virtually perfect and the aide’s English genuinely enhanced, and it was a moment of genuine exchange between two people mutually caring for each other even if in different ways.