Friday, September 4, 2009

Tolle, Lege

This is Peggy writing. Brooke and I often write things together for this blog, but it’s mostly my anguish that you’re seeing here. He hasn’t seen this entry yet, and maybe you won’t even want to tell him.

In the Confessions (an autobiography Brooke wrote part of his PhD dissertation on), Augustine gives an account of his labored conversion to faith: he is sitting in a garden and hears the voice of a child from beyond the wall, “Tolle, lege,” “take up and read,” and he opens the Bible he had laid aside to a random page. His eyes light on a passage from Romans that begins, “not in rioting and drunkenness, not in chambering and wantonness, not in strife and envying…” His full reform and conversion is accomplished at that moment.
The last couple of weeks have been pretty difficult for Brooke, though not for any well-defined reasons. There’ve been ups and downs with the vent weaning, although he’s up to sometimes as much as five off-the-vent hours a day, including three hours in a row; there’s been some discomfort; there hasn’t been much going on the functional-return department—a little more hand movement on the left, about the same on the right, not much new in the legs, yes some actual pain in the butt (a good sign), more chest rises with the breathing, not much at all in the biceps. But nothing spectacular, nothing. We were told by the doctor quite a long time ago that the period of greatest return is between the 5th and the 8th month, and we’re entering the 10th month now. Things are clearly slowing down, maybe stopping.
And there are little episodes of frustration, crossness; nothing major, but something that feels a little like depression. Not big serious cataclysmic depression, though of course depression in these circumstances wouldn’t be at all unexpected, but depression just the same. It’s been a hard time for both of us, not just Brooke, and of course one feeds the other. There are the very subtle, largely disguised messages from nurses, doctors, therapists: while the staff is unceasingly kind, the same interest in Brooke’s situation doesn’t always seem to be there, nor the same enthusiasm for his progress; it’s something more like marking time, time until some point that’s not very clearly defined. It isn’t just the summer doldrums; it’s something more—or rather, something less.
Some old friends of Brooke’s have been visiting from Michigan; it’s wonderful to have them here. But I’d left a copy of one of the texts on spinal cord injury someone had given me early on, the one by Sisto, Druin, and Sliwinski, lying on a table in the dining room, and they were leafing through it. I mentioned that the person who’d given it to me—a physician with experience with SCI—had said that the chapter on psychology adjustment was the best in the book, and I realized I hadn’t ever gotten around to reading it.
Late in the evening, I picked it up. I opened the psychological-adjustment chapter to a random page. My eyes lit on the following table:

Table 5-1 Interpretation of Stage of Grief Theory for Patients with Spinal Cord Injury

Stage Interpretation for SCI; Function

Hope of recovery and return to premorbid functioning; Function: Maintain premorbid identity

Increased awareness; external expression of emotion; Function: Control situation or destiny

Hope of improvement; Function: Maintain motivation for treatment

Uncertainty of future; defeat; Function: Grieving of losses; preparing for future

Willingness to do things differently; Function: Regain quality of life

I’ve done a lot of work on end-of-life issues over the years, so a five-stage account of grief is not at all unfamiliar. It’s drawn originally from Elizabeth Kübler-Ross, and is used frequently with respect to terminal illness: these are supposed to be the stages a patient goes through in moving toward death. No matter that Kübler-Ross took the final stage to be decathexis, a withdrawing from the world in general, and not the sentimental “acceptance” that her theory has been widely sanitized to involve; but suddenly here it is, in my face.
Denial/Anger/Bargaining/Depression/Acceptance, those are the stages that grief over spinal cord injury also passes through. Could it be that Brooke, and I in tandem with him, have already traversed Denial—the hope-of-recovery stage—and it’s now turning to Anger? Or that we’ve been through Denial, some subtle form of Anger, through Bargaining, and are now getting to Depression? The text continues,

“A prolonged period of imposed helplessness with a gradual resumption of limited independent activities puts patients at risk for development of psychological symptoms in general and depression in particular. As a patient becomes increasingly aware of his functional limitations and begins to grieve the associated losses, depression may ensue. Reported feelings of guilt for the effects injuries have on loved ones and the fear of becoming a burden to family members contribute to the development of depression…”

That morning, Brooke had been taken to the U for a checkup with the surgeon who had operated on his neck right after the accident. It was a horrendous trip, he said; he’d been transported strapped flat on a gurney in the back of the van, so that every ripple in the road or turn around a corner produced enormous spasms. He arrived so traumatized that he was dissociating—he asked the x-ray tech and the medic if they were really real (though when I asked him if I seemed real to him, he said, well, a little more so)—but by some great courtesy the head of Orthopedics had come to greet him, and seeing his distress managed to order in the appropriate spasm medication on the spot. But that wasn’t the only hard part of this visit. It was seeing the surgeon himself, as gentle and kind but also honest a man as you can imagine, have nothing to say. This was the surgeon who’d exclaimed an utterly genuine “Awesome!” when he’d seen Brooke move his toes right after the accident, and who’d said encouragingly at the next checkup that with this type of injury, arms come back after legs. But now there wasn’t much to say—the bone fusion had been accomplished and you could see the pins perfectly in place on the x-ray, but there wasn’t anything else to comment on, nothing more he could promise or do. Finally, he did the one thing a doctor can do when there’s nothing else he can change: he said to Brooke, “I love you, man.”

But wait a minute. That little 5-step paradigm of Denial/Anger/Bargaining/Depression/Acceptance has become orthodoxy in many areas of mental health, but that doesn’t mean it’s true. Or true in general. Or true in this case. After all, it assumes that what’s feared will actually happen—death, in the terminal-illness case; extensive, permanent paralysis in this one. Do we just “accept” that conclusion without any further efforts to try to coax some further return of sensation and movement out of a damaged body? We remember Dale Hull’s ringing insistance that return goes on far past a year, as the old assumption ran. As I see it, giving in to these kind, well-meant messages that, well, nothing much more is coming is utterly defeatist; while you prepare to be content with whatever happens, you never never never never never give up trying to enhance whatever prospects there are for future function. Not now, not at the one-year anniversary, not ever. This is where a kind of resolute, dug-in optimism and an acceptant realism collide. All my life, I’ve muttered the maxim “Never take no for an answer” under my breath in situations of all sorts, and I find I’m doing it now, in spite of the ubiquitous messages that not much more return will come. I feel stubborn. Not giving up is not I think just Denial but a kind of personal policy decision, even when the evidence looks the other way: Keep on pushing, no matter what, even if things seem to be stopping. Otherwise, you guarantee that things will stop.

That’s my anguish. What follows was written later that same evening:
It’s the night before September 3—that will be six months to the day that Brooke’s been at South Davis. There are various ways to tell how much time has passed—not only by the rise and now decline of hot summer weather, or by how many full moons I’ve seen driving home late at night, or by the restlessness of the insurance company, sympathetic but concerned about whether Brooke is making sufficient “progress” that warrants keeping him in the hospital—after all, he’s been an inpatient for nine months now, fully covered, but he’s not off the vent and he hasn’t regained any real functionality except driving the power wheelchair by moving the joystick with his left hand. It would be a lot cheaper for them and all participants in this health-care plan (which include many readers of this blog) if Brooke were home, where all the care is assumed to be done by family members and almost nothing is covered.
After all, progress in vent-weaning has been, like everything else, glacially slow. First it was a couple of minutes off the vent, then 20 minutes, then seemingly months later it was an hour, and over the past months it’s been creeping upward, through many dips and setbacks. Brooke’s been told by the respiratory therapists that when he’s able to do six hours off the vent—reliably, and over a number of days—that they’ll consider downsizing the trach to the next smaller size, from an 8 to a 6, the next big step on the way to vent freedom. But for almost all his time here at South Davis, this goal—six vent-free hours—has seemed impossibly far away.
Tonight, he made six hours for the first time. Two and a half in the morning; two in the afternoon; and hour and a half in the evening, after a very nice meal with a great friend who’d just flown in from Maine, eating Chicken Marengo I think it’s called that had been in the freezer since it was left on the doorstep some weeks ago by an old college classmate. After dinner Brooke settled back into the bed, listening to a recording of slack key guitar that seems to have just the right beat for breathing, fixing his eyes on the photograph of a small but perfect alabaster Buddha he’d taken in a remote temple somewhere in Myanmar when we were there last year.
Six hours! After he made it to the six-hour mark, at eleven o’clock at night, he said that during that last hour and a half off the vent he’d been thinking in a fully mature way. He spoke of a kind of serenity, a serenity he said about how (and now I’m quoting) a very active person, who had always sought to be independent, transitions to depending on support in almost every way. He said he knows he may not regain much more feeling or more movement, and that (now I’m not quoting) there may not be much that develops beyond the only real function he now has, moving the joystick on the wheelchair. He intimated that he knows this and could recognize it while he was trach-masking; but he also said it was a completely serene moment, perhaps (and now I’m quoting again) the most serene moment of his life.

Perhaps we’re not on quite the same page. But then, perhaps that’s not such a bad thing.

1 comment:

norm said...

I think a lot of us want to respond to this entry - Tolle Lege - but there is no wisdom I can bring, no really intelligent response.

I can only say - for both Nan and myself - we are here, we listen, we hope and we care very much. See you soon.