We know that our last entry was somewhat disturbing to some people, the part about hate as the shadow side of dependency and therefore as part of a marriage in our new circumstances. Actually, that account was begun over two months ago, after Brooke had come home from South Davis and the initial honeymoon of novelty and gratitude that he was able to come home—as stressful medically as that time was—had evolved into a more realistic facing of the situation that arriving back to one’s home in such drastically altered condition involves. It’s just that we couldn’t finish that account in all these months since then, try as we did, but we still wanted to do so in order to give you a fuller, more honest picture of what this experience involves—even if it means probing into areas that are disturbing, not just for us but for many people—witness the comments made to that entry in this blog.
It’s Easter weekend now, at least it was when we started this new set of remarks (though now it’s a week later), and we want to report to you on all the good things that have happened over the past four and a half months that Brooke’s been home.
First, there’s the physical stuff. Brooke’s been doing heroic workouts at the outpatient spinal cord rehab clinic at the other end of the valley, Neuroworx, and not only is he much much stronger in the physical therapy he gets there, but even the half-hour van ride on the freeway to get there isn’t as much of an endurance trial as it used to be. He can do leg pushes with both legs, snow angels, much much more—that is, much much more for someone who is still functionally speaking almost entirely paralyzed. He does two days a week on land as they call it and one day a week in the therapy pool—this is the hardest, best workout and one he has to do off the pacer, so it is a huge challenge but also a huge thrill. He’s working another two days a week on occupational therapy at the U—also a challenge and a thrill. (When he arrived home a few days ago, Brooke told Peggy that they’d given him a humungous workout on his biceps and triceps—“but I asked them to,” he said.) He’s working on hand motion too. He’s still got much more going on the left side of his body than the right, but there’s action on the right too. Most important, he’s got far greater trunk strength; he can sit almost fully upright on his own, unaided, for a considerable length of time.
But while we’re celebrating these gains certain painful memories intrude: among them, Brooke remembers, an OT at South Davis when I was first there told me I had no trunk strength and would never have any. To cement his point he read something out of a book; I guess I believed it. But now we know better: what he was reading is true for people with high-level cervical injuries that are complete, but my injury is incomplete—that’s what makes any return possible at all. We’ve wasted a good bit of time with therapists who didn’t appear to recognize the difference between complete and incomplete injuries, and who didn’t understand that to get any return at all, you have to keep working and working for it. Now, not only does Brooke have vastly increased trunk strength, but he has enough to spend as much as a half an hour in what’s called a standing frame, something that you begin by sitting on as a sort of chair, but that cranks you into an upright position and holds you there for as long as you want, enhancing bone strength and the cardiovascular system, and perhaps preparing what might turn out to be later developments in function. Still somewhat of a beginner at this, he can already stand as much as half an hour even without medication to keep his blood pressure up, and longer with it.
Seeing Brooke standing is an overwhelming experience, at least for me, Peggy says. There’s something about the magic of being upright. And he’s so tall—I know he’s 6’5”, but I’d forgotten how tall 6’5” seems. He can stand with his elbows propped on the Lucite tray table—and a few days ago when he did it we spent much of the time watching a documentary on the TV screen—a documentary on dirt.
Next, there’s respiratory progress—lots. Brooke’s cough is developing, a little more almost every day, so that it’s gone from being entirely absent to being deep, almost gutteral, and most important, productive in bringing up secretions and effective in clearing the airway. All this is crucially important in the next step in respiratory rehab: getting control of one’s respiratory secretions, so that you no longer need the trach for suctioning or anything else. Brooke’s set his sights high: that’s to have the trach, an upside-down L-shaped piece of plastic pipe that goes straight in through a hole in the throat but angles down into the windpipe, replaced by something called an Olympic button: a little plastic plug that keeps the stoma open but doesn’t block the airway at all. You have to have a good cough to do this, and good airway clearance, and you have to be prepared to be suctioned in a trickier way, but just the same it would be real progress. That’s where he’s headed now, working to reactivate the upper airway by doing his CoughAssist therapies through a mask over the nose and mouth instead of through the trach, starting to move secretions out through his mouth and even nose. He can spit now. His ability to bring up secretions and also aspirated food has improved dramatically; earlier, he says, if something got stuck in my throat it would previously have led to near collapse; now, I cough it up. That’s certainly not easy and it doesn’t always work, but it’s way way better than it has been. One thing that’s contributed a lot to better respiratory function and better general health is using CPAP at night, just like other folks with sleep apnea, only Brooke can do it with the backup ventilator through his trach—but this ordinary therapy has made a huge overall difference in his general health, especially since he now sleeps really well at night. And even though this isn’t Brooke’s highest rehabilitation priority at the moment, he’s also been breathing off the pacer—a couple of hours in the morning, almost every morning, and sometimes in the evening; three and three quarters hours today total. It’s beginning to feel normal, he says.
Then there’s progress in communication. Thanks to our great friend Pat Zwick, who’s spent countless hours (and sleepless nights) working on voice-activated computer stuff, Brooke can now check into his email (firstname.lastname@example.org) and, using Dragon Naturally Speaking, dictate replies just by speaking into a little microphone: he talks, and written text comes up on the screen. We gather that these voice-activated programs are being used by doctors, lawyers, anybody who has to do a lot of dictation, even novelists and writers of all sorts, but it’s a godsend for someone in Brooke’s situation, who has a lot to say but for whom something like Dragon makes it possible to say it in a natural way, just talking about stuff that’s important. We’re still having trouble finding a cellphone arrangement that works (although there’s a new lead as of today), since you normally have to push a button on before your cellphone’s voice activation starts, and then push again off so as not to use up the battery. It may not seem like rocket science to find a way to circumvent this obstacle, but so far we haven’t found it.
There’s pill progress too, that is to say, getting rid of some of the medications Brooke absolutely needed at the beginning but which have of course side effects and risks, which you don’t want to take unless you need them. For example, we’re celebrating getting off the last of the backlofen, the drug used for controlling spasms. Brooke had huge spasms early on—vice-like grips around the entire chest, for example, and his legs jumping off the bed—these are the product of nerve impulses so to speak ricocheting back and forth in the lower body when they can’t get through to the brain. Brooke’s been tapering down on this drug for some time now—he started at 40mg four times a day, 40-40-40-40, then a couple of months ago went down to 40-30-40-40, then 40-30-30-40, then eventually 10-10-10-10, then, a couple of nights ago 0-0-0-10 and finally down to 0-0-0-0, period. This is a drug that has cognitive side effects, and so something we’re delighted to be entirely rid of, but of course that it was utterly necessary in the maximum doses right after the accident and can be entirely dispensed with now, even if the decrease has been so slow, is one among other signs of progress.
And there’s progress with, or rather, against pain. One of the side effects of being as immobile as Brooke is is that one’s muscles atrophy. In particular, the muscles of the buttocks, like everything else, atrophy, and the downstream consequence is that the wheelchair which had been proportioned to him originally had become a source of agony, since his buttocks sit lower in the chair, the knees higher, plus many other displacements. The changed position irritates the muscle called the piriformis, the source of what’s known as deep hip pain and knee pain as well. But now, after months of pain, Brooke finally has new leg rests that are long enough to accommodate his lower legs without pressure—he describes it as “liberation,” from pain and from anxiety about the onset of pain. That acquiring these should have taken four months from the time the Seating and Positioning Clinic at the U hospital identified the source of his leg pain is a story in itself, but at least they’re here—and he is enjoying sweet relief.
And finally, there’s progress with some things that may seem like really small potatoes. There was an old skin tear on his ischial sit-bone on one side that had remained open for almost eleven months at South Davis; it has completely healed. We still watch it and everything else about skin integrity, always a serious problem in quadriplegia, like hawks. But even in this long list of things in which progress is being made, it is actually big potatoes that this long-term lesion has healed; healing is itself actually a function of the fact that he’s healthier and so much other progress is being made.
In addition to the physical stuff there’s Brooke’s teaching; he’s always said it was his lifeblood. He’s teaching his third OSHER course of the year, this one on Homer’s Iliad. Last fall, in his first course, teaching Walden, he was still on the ventilator, talking with considerable difficulty; he’d spent weeks training with a speech therapist to be able to talk in full sentences and with enough volume to actually teach a class. Then he taught The Winter’s Tale; that went much better, and he missed no classes, unlike the first time. Now, his voice is fluid and large, resonant, so that even though the class size is still limited to 15 students and he still teaches at home, with the students packed into our living room, he can actually make himself heard and conduct a back-and-forth discussion with students. The Iliad is not an easy text to teach, especially when you can’t riffle through the pages of a 600 page text, and a number of people were amazed that Brooke had chosen to teach it, including, he says, himself in the weeks prior to the beginning of the course. But the text has unfolded nicely over the past weeks, and he’s looking forward to the final two sessions. Not only hasn’t Brooke missed a class, knock on wood, but neither have any of the students except they might have brought infectious stuff into the house—they all seem fully involved with this course. It’s a mighty text, and it takes a mighty effort to grasp it, but both Brooke and the students are doing it—that’s what makes a great course. Already, he’s planning to teach a course on the Odyssey in the fall, and maybe after that Virgil’s Aeneid, Dante’s Divine Comedy, and who knows what after that. In the meantime, because the summer stretches out in front and there are no OSHER courses offered in the summer, he’s thinking about conducting an informal reading group, possibly on Romantic poetry, maybe once a week—(if you might be interested please let him know; our living room still only holds 15).
Strength is returning every day and so is confidence. Peggy is not as afraid of leaving Brooke and Brooke is not as afraid of being left. Over the last couple of months she’s been to London, Belgium, Wisconsin, Portland and Seattle, a fraction of her former travel but only what she wants to do. Brooke says he has greater emotional happiness. It’s still not any fun to be quadriplegic, with pain, spasm, hot and cold flashes, and 900 things that one misses, but just the same it’s extremely encouraging to experience this progress, and he says he has the sense that all the pushing that’s been going on has been moving in the right direction. He speaks of increased selfconfidence and pride in what he’s been able to do. He talks of a general sense of optimism despite all the losses, a sense that both of our efforts have been rewarded. And he can concentrate now on things other than his own physical situation; he’s been watching Marcel Ophuls’ The Sorrow and the Pity with our friend Dave Mickelsen, four hours of intense focus on the French resistance, and while nobody could watch it all at once and it will require at least four nice dinners as well as viewing sessions, this is something well outside one’s own inward sufferings.
What’s the bottom line in a progress report? It’s about progress, however slow, and the continuing awareness of how much the physical and the mental are intertwined. The new surge of physical progress, clearly a product of the extensive physical therapy Brooke’s been getting at Neuroworx and also the occupational therapy at the U’s outpatient rehab department, has enormous benefits for his mental condition. It’s like restoring the mind/body relationship to what it normally is, or some approximation of it. Did Descartes get it wrong, to take the mind and body to be entirely separate, connected only by the tenuous fiction of the pineal gland? Well, in a sense, yes, and in a sense, no. Right after the accident Brooke was fully paralyzed, during that spinal storm period, with no motion and no sensation at all in his body below the level of the injury: he was only head, and had no body that he could use or be aware of. Then some things started to come back, but slowly; then there were long setbacks and backsliding from inadequate therapy; now things are moving forward again. Of course this means pain and frustration, and sometimes the edge of despair. But for the most part it is a climate of energy and optimism, with small but significant amounts of new function and sensation appearing nearly every day. It’s exciting again—even though we’ve learned that one can survive without connecting with one’s body at all, as if the pineal gland had withered away—because being able to work on one’s body, to get it to move however slightly, to discover new sensation that it feels, is after all a source of real pleasure in itself.
Brooke had a dream last night about walking—he found himself, to his amazement, able to feel his limbs and make them move, and by the end of the dream he was looking for somebody to go backcountry skiing. While walking, let along skiing, may seem extraordinarily farfetched, his previous walking and motion dreams all involved impairments—broken skis, uneven legs, always about to fall down. This dream is more optimistic in its subconscious wish-projections than any of the previous ones. Of course there are still bleak moments, sometimes very bleak, but not nearly as many as some time ago. He’s actually better, healthier, happier, even despite everything. And that’s not just because spring is finally on the way.