Friday, January 30, 2009

Brooke's first writing

Brooke is learning a hands-free computer program called Dragon Naturally Speaking--you just talk into the computer and it types out what you say. Here's his first writing, an account of the bicycle crash--it may be that some of the details are a bit different but these are his words:

No Title

I don't remember the accident itself. I don't even remember where I was in city Creek Canyon, perhaps at the dangerous corner near where the tanks used to be, but the place of the accident I'm still not sure of, although I could find out from several people I know were witnesses. I have no recollection of the crash, perhaps scream as we both turned in the same direction to avoid one another. When I was on the ground or the pavement (I don't know which it was at this point) the only words I recall uttering were, “I can't breathe.” After that I was unconscious until I woke up in the hospital about thirty-six hours later.

I have talked to someone who was present at the scene of the accident (obviously I haven't gotten all the information from him yet). He appeared in my room at Rehab unexpectedly one morning while I was doing exercises with my therapist on my left hand. He was apologetic for having disturbed us, but he looked like a person I wanted to talk to. He introduced himself as someone who was present at the scene of the accident. He had been riding a mountain bike behind the person I hit. When he saw me on the ground he got off his bike and took my pulse. He told my therapist and me that I had no pulse and that my face was gray. A minute later he told us a woman jogger appeared who introduced herself as a life flight nurse and immediately began to pump my chest. Another witness began CPR almost immediately. They kept me alive until the ambulance came about seven minutes later. My therapist, who oddly has the same first name as I do, stood up during this story and stepped away to be polite. After the story was over I looked up and I noticed that tears were running down her cheeks. I am still utterly mystified by the timing of the life flight nurse's appearance on the scene. She saved my life, and I still don't know who she was. Seconds made a difference in the accident, and minutes made the difference in my being alive to write this. Life is strange.

Thirty-six hours later I woke up in the ICU of the University of Utah Hospital. (I say “wake-up”, but it wasn't really waking up but rather a kind of dim, blurried, horrified, painful dawning of consciousness surrounded by the faces of people I dimly recognized and some I didn't.)


Sunday, January 25, 2009

Just the Facts

No long ruminations today; just a few relevant facts. You can probably get the picture of what’s going on, for both of us.

Number of hours of physical, occupational, and recreational therapy combined Brooke gets, per day: about 5.

Number of hours of preparation for the first outing, Saturday morning, to see the Metropolitan Opera’s simulcast of Orfeo at a local theatre (brilliant and much enjoyed): about 3, including bathing, dressing, transfer into wheelchair, attachment of ventilator and oxygen tanks, travel in van with lift, locating accessible space in theatre, etc. etc.

Number of rehab personnel required for first outing: 3, not counting spouse.

Number of deep suctionings of mucus out of lungs required since introduction of dramatically effective new secretion-clearing device, CoughAssist: down from (at its worst) maybe 20 per hour to maybe 4 per day.

Number of food containers from delicious things brought by wonderful people that I haven’t managed to return, and for the most part now can’t connect them with their owners—maybe 35. (Come and see if I have yours.)

Number of thank-you notes actually written: 0. Number of thank-you notes that ought to be written for amazing things that people have brought or done—huge. I mean huge. (I’ve been exhaling thank-yous into the atmosphere in the hope that they reach you.)

Number of muscle spasms and shock-like neurological events (as Brooke describes them), per hour: plenty, despite the medications. (He says he’s getting used to them, even as unpleasant as they are.)

Number of hours of trach-cuff deflation time allowed for talking: up from 2 hours a day to an official 4, but in practice even more.

Number of nurses and nurse’s aides assigned to Brooke per day, in three shifts: 6. But he knows the entire staff and many of them drop in to visit him even when not on duty.

Number of cards and letters not yet opened since mid-November: undetermined, but we’re still finding them.

Percentage of oxygen in the air delivered to Brooke by the ventilator: down from 40% (with spikes to 100% in times of respiratory crisis) to 35% to 30% and now down to 21% for the whole past day—21% is the same as room air, the stuff the rest of us breathe. Getting down to room air is great news.

Number of musicians playing Sunday afternoon in his room: 4, two blues guitars and two wailing harmonicas. Really good stuff.

Bottom line: things are looking way better on almost all counts (except the thank-you notes)—


Tuesday, January 20, 2009

At the Inauguration

While those of you in Washington were bundling up this morning to brave the cold for the Inauguration, and those of you who weren’t in Washington were sidling up to television sets, Brooke was here in his usual room, beginning a usual day.
A usual day goes like this: waking up at 5 or 5:30, then bowel care, then teethbrushing, then a shave—Brooke has sometimes said that it’s the shave that keeps him from despair, though despair doesn’t seem to be in the air today. Then he usually sleeps for 45 minutes or so, and then has breakfast, fed to him by a nurse. (This morning it was sausage and pancakes, pretty good.) Then nursing care—vital signs, medications, more bowel care, suctioning, and getting dressed—just having a paper brief, loose pants, and a simple shirt put on takes at least half an hour. Then the therapies begin: driving the wheelchair around the hospital using a three-button headrest (forward, left, right, and on the same button as forward, also back—you can imagine the challenges here, but he’s getting good at it); work on motion, including electrostimulation and vibrations—there are some responses from biceps, triceps in the left arm, and motion in the hips and right foot as well;—and then work on the voice-recognition computer. The speech-and-swallowing therapist also shows up, but since Brooke has graduated from dysphagia school and can now eat anything, and since his voice (when he’s allowed to use it) is just fine, she usually just curtsies out the door without anything to do but smile.
But today was the Inauguration. By quarter to ten he was demanding to be transferred into his wheelchair (this requires putting a sling underneath him, then hooking it into an overhead bar, then using a sort of modified forklift to hoist the sling from the bed to the chair, with Brooke dangling in it. There’s a lot written in bioethics about the importance of dignity, and it would seem that there’s not much dignity about many of these things: the diaper (though they never call it that), the sling, as if you were a load of cargo (imagine two hundred-pound bags of cement), or the relentless bowel care, which it really would violate dignity to describe. It’s amazing how Brooke tolerates all this stuff without complaint, except of course on those few occasions where it is ineptly performed. He has an air of patience, usually, when they’re doing things to his body that he can’t move or feel, but just the same knows what is going on.
But back to the Inauguration. Once in the wheelchair, and once the ventilator is hooked up for travel, he drives fifteen feet down the hall to the dayroom, where people are coming in to watch the ceremony on a giant flatscreen TV. It’s about ten minutes to the swearing-in: we’re seeing former presidents ushered in, catching glimpses of the immense crowds on the Mall, hearing the invocation. Here in Rehab, watching it, are people in wheelchairs (though Brooke has the only motorized one), people on crutches, people with huge chest braces, people with IV lines embedded in their arms, and a man on a gurney; and there are nurses, aides, family members who look able-bodied in comparison. The doctor is sitting on the window-ledge, among people who are immensely grateful to him, spellbound by the events in Washington; he understands his patients, because he was once paralyzed himself.
Here, wheelchairs are normal; in the outside world they’re not. Much of the resonance of the Inauguration has to do with racial disparities and people who have been disadvantaged; but here in this room are people who are just waking up to their new disadvantages too. Brooke is scheduled for his first outing this Saturday (last week’s trip to the fine-arts museum had to be cancelled), but this will be the first time since the accident two months ago that he will be in an environment in which he’ll be seen as disabled by people who are not. You have all known him as the person he still is; but the gaze of those who don’t know him and see the giant wheelchair before they notice the person won’t be nearly as kind.

But of course the Inauguration is about overcoming disadvantage, about not letting others’ views of you determine who you are. We could mouth some platitudes about not letting this happen here either—but we have yet to see how hard this is. In any case, he’ll be staying here in Rehab a bit longer—at least up through the beginning of March—so the realities of the world can perhaps be kept at bay and he can continue just to enjoy visits from you, people who already know and love him and will see the wheelchair last.

Yes, visits. His talk-per-day limit has been raised from two to four hours—that’s terrific. The lung problems are less severe. He has some very good days, like today, and he might even show you how he can move the fingers on his left hand. It would still be a good idea to give me a call (824-9160) to see if the moment is a good one if you’re thinking of visiting, and it’s still the case that he has therapy sessions all morning until noon and from 1:00 to about 3:00 or 4:00, so late afternoon and evening are best; but a little more visiting is possible now, at least if (please promise!) you don’t have a cold.
Besides, you might catch us listening to Bob Marley, wiggling our shoulders to each other in time to the music. And celebrating the Inauguration—Brooke had a tear in his eye during the ceremony (as we all did) but now it’s enormously relieved enthusiasm, and we’re looking towards the future in many optimistic ways.


Wednesday, January 14, 2009

Making Comments; Exploring Lungs

Two more suggestions about making comments, in addition to Sara's post: First, it’s safer to write out a comment in an ordinary word file, and then copy and paste it into the blog—that way you can’t lose it if the link goes down while you’re working on it. And second, sometimes we can’t figure out who a comment is from, if just a first name is used as your sign-in and Brooke knows at least half a dozen people with the same name. Of course, if it’s a clever nickname we can sometimes sleuth it out, but unless you’re really shy about using your last name we’d love to know it too.

Now for Brooke-news: They’re really going after that recalcitrant left lung. He had a bronchoscopy today—this involves threading a tube down inside the trach with both a camera and a suction device. The idea is more or less search-and-destroy, get rid of those pesky residual secretions that have been causing such problems. The procedure was not only a great medical success, but an aesthetic achievement as well: you can watch (if you want to) on a monitor as the camera moves inward—this is through the branching structures that lead into the lung, an elaborate and beautiful interior architecture that recedes seemingly endlessly into deep, mysterious wells as their diameter grows smaller and smaller. (If you’ve enjoyed your own colonoscopy, you’d love this.) Bottom line: you can live with a guy for more than thirty years and think you know everything about him, but you’ve hardly seen anything until you’ve seen the insides of his lungs. Wonderful. And clearing up.


Having trouble leaving a comment?

Mom says there are still a few people who are struggling to leave comments on the blog, so I'm posting these instructions again. Your comments are especially meaningful now that Brooke is on speaking restriction!

Step 1: LOG-IN. Click on the 'Sign-in' link on the top right of the screen. Enter your id and password when prompted. If you don't already have a google account, you can create one by following that same sign-in link.
Step 2: CLICK ON COMMENT LINK. You will find this small underlined 'comment' link directly under the post on the right side. It will say '0 comments' or '12 comments' or however many comments there are.
Step 4: WRITE COMMENT in the box on the right
Step 5: PUBLISH POST by clicking on the button under the comment box that says 'Publish Post'

I'm guessing most people hit a snag if they don't have a google/blogger account so make sure you create one or sign-in before trying to comment.

If you still have questions or are having trouble, please feel free to email me directly at and I will walk you through the process. You can also email me your comment and I will post it for you. Good luck bloggers!

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—

Monday, January 5, 2009

The Penalty for Being Brooke

One of the things—perhaps the thing that’s been most important to Brooke during the past six weeks, both in the acute-care part of the hospital and now in the rehab part--has been the waves of people who’ve come to see him. This has sent him soaring—it’s been phenomenally gratifying to him. You all know how gregarious he is and how he loves to talk—to talk about ideas, to talk about politics, to talk not just about people but with people, and how he’d much rather hear about you than talk about himself. That’s just who he is, a talker. And that’s the problem at the moment: Being Brooke, talking. He’s got another little bout of lung infection (yes, this is a setback) and that means not only a longer, more heavy-duty course of antibiotics (14 days!), but cutting down on the amount of talking. This is because it’s necessary to keep the air pressures in his lungs high, but deflating the cuff around the trach—which is what permits air to be exhaled upward through the vocal cords—lowers this. So here’s the fierce new medical regime, imposed for at least the next few days or until the current infection is under control: a maximum of two hours a day of talking.
Two hours? He used an hour this morning for his computer voice-recognition therapy, and another half hour talking with various doctors and nurses. That leaves half an hour to spare—hardly anything for visitors, well-wishers, phone conversations, or even (I hate to sound selfish) me. Two hours, that’s all? Hardly enough to get started on Being Brooke.
But he is entirely willing to cooperate with this medical regime. So there we are; he’s rendered mute, and confined for the moment to visitors who promise not to ask questions, start conversations, assert controversial political theses, pose challenging philosophical problems, or engage in ripartee. (Will anybody be left?) This is a huge deprivation, as I’m sure you can understand. I guess it’s the penalty for Being Brooke. Of course, he still loves seeing people, so don’t stay away altogether—just bring something to read to him or play for him and by all means phone me in advance, 824-9160, so I can let you know if it seems to be a good time.

Sorry for this bit of strictness. But the doctors are persuading me that he’s been, as they say, overdoing it, and a somewhat quieter existence is necessary for the moment. But we can all hope he’ll be back to Being Brooke, or being Still More Brooke, soon. Keep calling me and asking if you can come. And keep posting to this blog--he loves to have it read to him.

Setbacks are scary. And they may mean that things don’t progress as fast as hoped, so that vent-weaning is delayed or perhaps other things as well. There aren’t any guarantees in this business, except that it isn’t easy. I’m astonished by how one’s natural optimism is always being challenged: that subconscious assumption that tomorrow will be better than today, that one gain will yield another, that things are trending upward. The course of “recovery” is far more jagged, and it’s always possible that the label itself is misleading, since it carries unwarranted suggestions of complete success. Just the same, the physician says that Brooke is doing better than 90% of patients with this level of injury—and get this, irrespective of age!