Welcome to August

Welcome to August. Brooke passed his fifth month at South Davis two days ago and his eight-and-a-half-month anniversary in four different hospital settings—how time flies when you’re having fun (or even if you’re not). (But we are having some fun, believe it or not, even if it is mixed with really difficult times.)
It’s August—you can see the light changing from Brooke’s room, and he’s already noticing that summer is drawing to a close—it’s still dark when he gets his suppository at 5 am, and almost still dark when he gets bowel care about 6:15. Sometimes friends bring him a latte and the New York Times before his trach mask in the morning, but it’s light by then. We’re just halfway to the equinox. By the end of September we will have passed two equini (we’ve been debating about the correct plural) here at South Davis, and despite a lot of difficulties, we have a lot to celebrate today. Brooke passed over the four-hour mark on breathing—two hours in the morning, two hours and 25 minutes in the afternoon—--the former, watching Bringing Up Baby and the latter with a physical therapist working with his arms and hands for an hour of that time. What’s important is that he was able to do something else besides just breathing, like all the rest of us but a real gain for him. But there was also time for a kind of Buddhist meditation during these trach masks, watching thoughts move through his mind he says like clouds over the ocean, evancescing into nothingness. Bach helps. In fact, it would be difficult to do any of this, Brooke says, without Bach, whose music goes nowhere—simply plays with itself, simply enjoys its own endless play, endless variation, endless ingenious pleasure.
We have some sense of turning the corner after an extended (and depressing) plateau. Brooke’s mentor Dale Hull, himself a valiant spinal cord injury survivor, says that “plateau” is not in his vocabulary and constantly reminds us that recovery of sensation and function can go on well into two years and, albeit more slowly, even longer; he just celebrated the 10th anniversary of his own accident (playing with his kids on a trampoline) by running an underwater marathon, but also says he is still having return even if it is less noticeable to people on the outside.
In addition to the four hour and twenty-five minute trach mask today, Brooke is recovering sensation in his right arm, more or less dead until now, and sensation in the instep of his right foot. He can move his left toe almost at will. Those of you whose bodies are under your perfect control may think this is small potatoes, to be able to move your left toe voluntarily, but here it is huge. So is feeling sensation in your right buttock, even if that sensation is pain. Brooke managed to spend seven and a half hours upright in his wheelchair today, also an accomplishment. To add to all this, the occupational therapist and Brooke are working on a joystick to drive the wheelchair, rather than the current head array; this thanks to the patient work of this wonderful and amusing OT who never stops reminding us of his Basque heritage, not the least of which is conducting therapy sessions in Basque dialect.
So why the plateau? That seems to be part of the natural order of things in spinal cord injury. But there are seemingly related plateaus of the emotions as well—or maybe, in this case, plummetings. A couple of weeks ago we had a visit from one of Peggy’s wonderful cousins, Rainy Janus, who lives in New York state; she brought many little treasures for Brooke, including a digital photo frame onto which she’d loaded many remarkable old family photos and other pictures. While she was here, she and Peggy and Polly, Brooke’s long-term hiking (and skiing) buddy, went hiking in the mountains above Alta, just at the peak of wildflower blooms, and Rain took endless pictures, including one of Polly and Peggy sitting on rocks in the middle of a little stream, where they were all three having lunch. We showed these pictures to Brooke later that day, and he enjoyed them and their artistry, but the one of Polly and Peggy sitting on the rock triggered an emotion so strong it’s been with him since then. This is an incredibly painful emotion, he is able to say now, the emotion of not being in the picture where he normally would have been. Then this weekend another out-of-town visitor came, Phyllis Rose, a writer-now-photographer from New York who was a classmate of Brooke’s at Harvard, and she brought spectacular photographs she’d taken of southern Utah trails we’d hiked on many times. Gorgeous photographs, in huge, enlarged size. These are also trails Brooke can’t expect to ever hike again. But somehow, these two sets of photographs frame another part of what might be called the recovery process: the outbreak of a new and more painful wave of realism about what the future may hold, but at the same time an accepting, if not yet embracing, of this realism as a way of moving on. It seems as though these two sets of photographs are bookends so to speak around this painful plateau, a deeply important stage in going on, and we’re grateful (as odd as this sounds) to both Rainy and Phyllis for showing them to us. Reality is important, after all.

Besides, somebody just reminded us about something else Churchill said in addition to “Never, never, never, never, never give up”: “When you’re going through hell, keep going.”

Concluding warning about plateaus: You can’t really tell when they start, and you can’t really tell where they end. Coming to understand this is part of this, uh, ongoing adventure.

PS. Thanks to those of you who are writing in to this blog—this really means a lot to Brooke as a way of keeping in touch with you--and as a way of still hearing someone say “awesome.”