Of Spasms and Snow Angels

The days at the beginning of this hard week were extraordinarily rough for Brooke: a suspected pneumonia was overshadowing everything, producing not only physical symptoms and frequent respiratory crises (often in the middle of the night), but fear. It’s amazing how pervasive that fear is, how it eats into everything. Brooke was overheard asking the respiratory therapist—one he completely trusts—“am I going to die?” and getting an answer that reflected honestly the ambiguousness of the situation, “it’s not in my plan”—a noncommittal answer if there ever was one that didn’t just say maybe yes, maybe no. This was the first time I’ve seen something close to despair.
Then there were a couple of good days, followed by another crisis. Now that what in retrospect seems like the comparative honeymoon of the spinal storm period, when the spinal cord just shuts down, this post-storm period is much more difficult physically—there are wrenching spasms, phantom whole-body sensations of things like being stuck with needles, being on fire, pain. When he has spasms, his legs jerk around on the bed, not operated by him but moving of their own in ways he cannot control. The ventilator sighs in and out incessantly, and it is necessary to suction out secretions from his lungs every couple of hours, and sometimes every several minutes. Brooke isn’t a complainer, but he did once, under his breath, say something about “the hell I’m going through.” If you’re in the room with him, you can see that it’s real.

Somebody asked me a couple of weeks ago, not very long after Brooke’s accident, if I was sorry we didn’t live in Oregon. It was somebody who knows how much academic writing I’ve been doing over the years on end-of-life issues—endless papers, books, talks—all taking a fairly resolute patient-autonomy point of view, that it’s up to the (competent) patient to decide when enough is enough, and that physicians should be prepared to provide assistance in dying if the patient genuinely chooses that the time has come to end things. I’ve been a fan of the film Who’s Life Is It, Anyway?, about a man—a sculptor, as I recall, or somebody whose profession involved working with his hands--who is suddenly totally paralyzed in an accident and chooses to die. Brooke has seen this film too, and he has also read (and discussed and argued about) most of my academic work on physician-assisted dying--but of course neither of us could possibly have imagined in any more than an intellectual way that one of us could be in a situation like this, where these issues might seem to be relevant. For me, thus, Brooke’s situation has presented more than an intellectual challenge to the views I’ve been defending over the years—it is a deeply personal, profoundly self-confronting challenge.
What if he were to say he’d had enough? We wouldn’t have to be living in Oregon, where physician-assisted suicide has been legal for a decade; after all, because he is a legally competent adult, he could just insist that the ventilator be discontinued, his pacemaker removed, or any of the various other things that are keeping him alive.
So it’s more than an academic issue, now. But the remarkable thing is that Brooke has never said, even in his darkest moments and even when he was realizing the full extent of his injuries, that he didn’t want to live; even when the intrusiveness of lung suctioning and every-six-hour catheterizing and spasms that wrack his whole body are worst, he still has this drive to keep going. It isn’t fake; it’s clearly real, and deep; and even when he speaks of the hell he’s going through, he keeps going. So whether or not we live in Oregon, it is right in keeping with my background view, that a competent patient should have the right to decide about the end of his or her life—but I’m vastly, vastly relieved that Brooke’s choice, even at the worst moments (and there are plenty of those, including a very difficult episode this afternoon), is to stay alive. I can’t possibly say how I’d respond, as a human being (as distinct from an academic) if it were otherwise, but I know it would be impossibly hard.
Some time ago, the physician here who heads the spinal cord service said that early on, 100% of his patients say they want to die. He says he makes a deal with them—hang on for a year, and if after a year they still want to die, he won’t object—but that in nine years, there’s been only one instance of someone still wanting to do so. He says that most patients revert to the general level of wellbeing they had before the accident—so if we get that far, it would bode well for Brooke. Just the same, there is a lot of what can only be called suffering in this right now.

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So it’s been a hard week. But interlaced with the really difficult stuff something else has been going on. Sensation and motion was detected in his left hand last week. Then he was able to move the toes on his right foot—only if he was looking at them, but move them just the same. There’s a tiny bit of movement capacity in his right thumb. And just a day or two ago some activity was detected in his hip adductor muscles—now, if they put down a rigid sheet of plastic and a little piece of wood with wheels underneath that allows for frictionless gliding, he can make snow angels in bed with his legs. Today, he says, the therapy staff were swarming all over him (five at once, he said) with electrostimulators and muscle vibrators and other contraptions designed to encourage muscle activity—and, he reports, they even got some traces of activity in his quads.
But he cautions against undue optimism. He’s still got lung problems, and still on the vent. And still on two-hours-max-a-day talking lockdown. And it now seems unlikely that he’ll be able to come home in early February, as we’d originally hoped. And he’s still subject to all sorts of crises like the bad one two days ago, crises that erupt almost without warning but, so far, later subside. And in all this, it’s impossible to predict whether the sensation and motion that is returning in some places will mature into any degree of functionality, or just remain as it is. We’re trying to be prepared for it, either way.

At the moment, he’s in wonderful, expansive spirits, though hugely frustrated by the talking lockdown and the damper on visitors—he’d like to see everybody, not just in glimpses but for long, deep discussion—but it can’t be that way just yet. Renewed apologies to visitors who’ve been turned away by the nursing staff—they’re just trying to protect him from himself and from overextending in his huge delight in seeing people. Hang on. And be sure to give me a call, 824-9160, if you want to come, and I can try to give you a read on whether it’s a lucky moment or not—
Peggy