Tuesday, January 13, 2009

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.

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—


George Constable said...

Peggy, your latest posting is beautifully said and excruciating to read, two things that don't often go together. The spirit of both of you is something to behold. I only wish I had words to express my admiration.

Gale said...

Just before Brooke's current trials I was lucky to visit him along with a couple of his other many friends. Brooke was eager to talk about a recent conversation he had had with a friend, explaining how deeply moving and meaningful it had been. He also talked enthusiastically about how profoundly he appreciated some head and shoulder massage he was getting from a trained masseuse. These were accounts of the vividness of his here and now experiences. And in the midst of these eloquent stories he, rather parenthetically, mentioned the day after his accident that he had decided to live! I found this enormously encouraging. Brooke mentioned that he thought it was encouraging to the hospital staff in his rehab unit as well, since they must so often face the despair of their patients.
If anyone can prevail in these difficult challenges, it is you Brooke!

Ryan S said...

I told Max the other day about Brooke's accident and he prayed for him that night. A week or two later, Max had something plastic, I believe it's recycle code was a 6, which Milwaukee does not recycle. Max's plan? Send it to my friend Brooke in Salt Lake, because he remembered that Katie and I mentioned Salt Lake recycles just about all plastics. So...what's the address?

Steve Adams said...

Dear Peggy-- I'm so sorry to hear that Brooke is struggling with pneumonia and phantom pains and that you are struggling with compassion and mercy. I pray both of you will be happy and strong again, and sooner than you think. I am heartened by the movements that Brooke is able to make. Both of you must be encouraged by the experience and advice of his doctors. --Best, Steve

ed ranney said...

Hi Brooke and Peggy,
thank you so much for the update today, reporting the intense difficulties and some advances, as well as honest appraisals of Brooke's suffering and possibilities for the future. I so want for him to be comfortable, and I continue to be so moved by your postings, and glimpses of life with him. I'm sorry for the restriction on talking, but am sure it's very important that he not overdo it, let things settle and see how the body adapts. It sounds like so much is going on in such subtle ways, and like there is so much therapeutic work that is so important. So our thoughts and love are with you, as always, and as always, so looking forward to the postings that are so important I'm sure to so many people, as well as us.
hasta pronto,
Ed and family

Patricia said...

Peggy and Brooke,

The honesty and complete openness in this posting is a gift to all of us who love you both. I know that it cannot be easy to lay your souls bare for us on this blog. Thank you for letting us into your lives even when we can't be there. I only hope that you know that there's no amount of soul baring I wouldn't do for you. I'm so glad that there are snow angels, and I, never above being one of the children whom Hume says kick the stones that hurt them, will kick and curse at the phantom pains and uncontrollable spasms in the hope that it will make them go away.

Mark said...
This comment has been removed by the author.
Mark said...

Peggy, I just found out about Brooke's accident and this blog of yours. I was so touched by this post. I don't know if you knew, but Amy and I spent a lot of time in the hospital with our daughter, Audrey, in her first year of life. (She was born with a serious heart defect.) I know how hard this can be, but I hope you will both hang in there and that things will get better and better with time, as they have for us. Take care of yourself, as well as Brooke.

Ron Barness said...

Peggy, Mary Dickson read aloud your latest epistile last evening as we headed toward Westminster College for a slide show and wept. Your courage and Brooke's courage is both inspiring and moving to me, and most definitely, I honor your honesty. Love, Ron

Liz von Kessler said...


After reading your writing - I just want to read everfything you have ever written - you are a fabulous writer, expressing very real situations, emotions, etc. I have just spent the last 3 days planning the first Rehab Center for the UAE where they have nothing. The expertise in Rehab is absolutely amazing now. but, the underlining most important aspects is psycho-social - You and Brooke seem to have that entirely in your control. I admire both of you. Being a Rehab specilist in one of my lives, I can feel the spasms, pain, fear, and frustration with lock-down that Brooke must be feeling - agony. Please know we are constantly thinking of you.

Nancy and Elliott Randolph said...

Peggy, your entry of Jan 13 nearly did me in. How you're able to do everything and find time to write with such majesty about a horrible situation. When I read between the lines, I'm reminded of a talk on charitable giving I heard last year. The speaker was a Sister Pascal, a remarkable lady who runs the St. Vincent de Paul Center for disabled kids in Haifa, Israel. These are the kids with the worst imaginable problems. Unable to communicate, horribly disturbed and disfigured bodies, some both blind and deaf. I asked her for permission to pose a theological question. "If you believe in a personal God, why would God create such terrible diseases and make suck disfigured and helpless kids?" she smile back at me and said "God created these children to give me and others the opportunity to help them and to 'make us better people.'" Peggy, you're in good company.
Tell Brooke I want to come out to SLC in mid-Feb to see him. We're all pulling for him. Love to all,