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.



T.R. Hummer said...

I knew you'd be watching the inauguration. So much there that was heartening, including the fact that there were so very many people on the Mall and all over DC, and there was hardly any trouble. I heard today on the news that there were no reported arrests: NO arrests. And there were very few injuries of any kind. We've seen a lot of the bad side of humanity the past few years that it feels almost miraculous to be reminded of the good.

I'm not sure why I'm writing this, Brooke, except that for some reason the whole time I was watching this grand phenomenon unfold I was thinking of you: so many of the kinds of things we used to discuss in your classes seemed to be manifest in the day that I wanted to share something of my own impressions with you.

Onward, Maestro.

--Terry Hummer

Lorraine Seal said...

Thank you for description of the crowded day room as you watched the inauguration, the room full of people of varied levels of health and ability rapt and united on an historical day. I like the picture of the once-paralysed doctor, his folding his frame into the window sill. How fortunate are his patients.

We watched it here on CNN as the clouds lowered and the rain resumed after the bright morning. It was an emotional experience. I wept as Aretha sang, overcome by what I can’t name. Denis points out that Obama’s first act as president was to correct the Chief Justice of the Supreme Court. Obama showed remarkable composure, reflecting the presence of mind that will, I hope, serve the country and the rest of the world well.

I also appreciate your candour in describing the morning’s routine. Whatever is written in bioethics about dignity, there are some indignities of personal care that necessarily follow disabling injuries, the truth of which you’ve long come to terms with, I’m sure. All the same, I remember how wrenching it was to watch as my friend’s care required the introduction of, say, the paper briefs, then what must frankly be called diapers. It’s one of the things that resonates in your accounts of your experience, as I follow from afar. It reminds me of the question I asked you, Peggy, two years ago and your answer, that we come to accept in time that which we once believed unbearable.

It’s hard for friends to contemplate the inevitable indignities borne by those who have been so recently strong, independent, proud. Just as it is disheartening to face the experience of going out into the world, the first time Brooke becomes, to those who don’t know him, ‘the man in the wheelchair over there’. It is disheartening to be with someone you love, someone you know as a precious and rare human being, but to realise the world sees only the disability. So you cope not only with the difficulties of awkward physical manoeuvring in public spaces, all the while holding the desire that your loved one be seen for who he really is. These are challenges that cut to the core. I wanted always to say, ‘Don’t you see the man who is here?’ But many could not.

I know, however, Brooke’s natural dignity shines through and will continue to shine through, as my friend’s did throughout. There is courage, grace of spirit and dignity of mind that cannot be diminished or sullied, no matter the physical condition. You and Brooke share that.

I’m glad too that Brooke can eat without difficulty and that talking time has been extended to four hours. Well done!

You both remain in my thoughts and heart. How I wish I could share the moment as you wiggle your shoulders together, accompanied by Bob Marley. It is an image to treasure.


Dr. Lou's Blog said...

Here is what I wrote just after the inaugural...

Inaugural Thoughts

Finally I feel as if I can get on with the rest of my life. Barack Obama is safely ensconsed in the White House and God is in his heaven.

There were ironic and metaphoric images: e.g. the Dr. Strangelovian picture of Dick Cheney in a wheelchair clearly not communicating with anyone in his immediate surroundings. He was no longer smirking.

The untraditional concluding benediction by Rev. Joseph Lowery added a whimsical tone with his concluding words:

…we ask you to help us work for that day when black will not be asked to get in back, when brown can stick around ... when yellow will be mellow ... when the red man can get ahead, man; and when white will embrace what is right. That all those who do justice and love mercy say Amen.

And the crowd said “Amen” thrice.

There was a moment of anxiety when the Obamas exited their limousine to walk along Pennsylvania Avenue; curiously a friend emailed me, “Tell them to get backing the car, tell them to get back in the car.”

The real question is what to do about John Stewart and Keith Olberman. For eight long years the only way I have been able to deal with the Bush Administration is either through humor (Stewart) or outrage and indignation (Olberman). I need a break, at least from Keith. Perhaps twelve-step program.

Just looking at Obama’s face may be enough. I hope.


Ron Barness said...

Peggy & Brooke... off to bed, but just wanted to say thanks and good night. I don't know if I have a cold or if it is just inversion sniffles, but I will await better days to come over. XO Ron

T.R. Hummer said...

Have a look at this link: interesting research happening.