Wednesday, October 27, 2010

Step Down: From the MICU to the IMCU

Brooke’s condition has improved enough to be transferred from the MICU to the IMCU, acronyms that label the unit of most intense care and the step-down unit that provides intermediate care. This might seem like progress; but there are still challenges. He was (by his own account) going crazy yesterday, when he was required to have the cuff on his trach fully inflated and so couldn’t talk at all. He was desperate, anguished, fearful, depressed, and I think it’s fair to say existentially frightened, since it felt not only like going backwards from the MICU but robbed him of his greatest asset and strength, the ability to communicate. It was awful to watch, and surely more awful to endure.

But the unit put a solo nurse on with him last night, and then changed his medications and ventilator settings today. He’s been perking up throughout the day, and tonight, just before bedtime, a friend—the assistant for the OSHER class he’s been teaching—is reading aloud to us from Walden, preparing for class next Monday. Brooke looks as if he’s peacefully asleep, but actually just has his eyes closed while he listens, intently. She reads; he corrects her pronunciation. Vitiate, for example, not vittiate. She remarks on how extraordinary it is that he’s paying this close attention when he’s been so sick, but he keeps right on going, letting her read, commenting on the text, demanding keep going. Brooke has all of Walden memorized. (He protests this characterization; he insists, “I just know my way around it.”) They’re reading “The Pond in Winter,” describing Thoreau’s soundings of the pond, and then the section on cutting ice, and Brooke is talking about the ways in which ice was cut from Walden Pond, sometimes as much as a thousand pounds a day, and shipped all over the world including to India, to ports Alexander only knew the names of, but never actually reached.

It turns out Brooke’s got the footnotes of the scholarly edition pretty much memorized too. And, it seems, he’s getting pretty much back to where he was before. The doctor apparently says he can expect to go back to South Davis this Friday or Saturday, to regain enough strength after this pneumonia to come home.

But Brooke is already thinking about how to teach his class there if he can’t do it this week in our living room.

Either way, he says, he hopes the class will come to some consensus about this enigmatic chapter. “The Pond in Winter.” I never promised this class an easy book, he says, It’s what takes us out of our lives of quiet desperation. It’s the real thing. And this accident, it’s what also takes us out of lives of quiet desperation: it’s about suffering and pain opening up friendships. It opens up worlds and worlds, and Walden only complements those worlds it opens up. It’s the perfect book for this situation.

Thoreau says he went to the woods to face life squarely, to live life deliberately. I didn’t do this deliberately, but now that the accident has happened, I’ve wanted to face life squarely too; it’s like a scimitar cutting me in half. And here I am, living, breathing, with my dear dear friends. This is the real thing. This is not a joke. I have to keep reminding myself. There’s nothing to think about, nothing artificial; this is the real thing. You try to extract every morsel of meaning out of life, and if you die tomorrow, you will have extracted as much as you can. I treasure my breath, even if it’s painful; I go on teaching, teaching—no, he corrects himself, I go on learning, learning.


Lorraine Seal said...

To Brooke and Peggy

Peggy, you recently suggested I again try to post the comment that follows. I wrote it in response to the conversation about the dinner party, sometime in mid-September, a conversation revolving around your use of the term ‘adventure’ to describe Brooke’s changed condition and that of his friend, Roger. After writing the comment, I had trouble posting it for technical reasons, so I sent it to you privately, and now you’ve suggested I try again to post it.

I’ve been reluctant, though, to do so because it seems somehow inappropriate, given this most recent crisis. However, on reading Brooke’s reflections on facing the reality of his life as it must be lived now, his reflections on how to live deliberately, breath after sometimes painful breath, I think maybe it is relevant. It is after all about framing the narrative of one’s life and finding within the suffering some morsel of meaning that may, perhaps, make it bearable.

The friend about whom I write below, a Buddhist, wrote me at a time when I was grieving: ‘Now you are living out the pain [of life] and when you get a chance, perhaps you can somehow transcend it and find something, some wry truth, to hide away to a secret recess of your life; something which will somehow get you through the day.’

And that’s about what we can do, what we must do, and it is in that spirit that I try again to post the comment below.

I am with you as you recover from this latest setback and am, once again, deeply moved by your courage. Thank you for sharing the beauty of your soul in these pages.


Lorraine Seal said...

I smiled as I finished reading the dinner party post. I felt a sense of camaraderie and peace, as though I pictured the four of you in the glow of candlelight, warmed by your longstanding friendship and courageous acceptance of your ‘adventure’, as Peggy termed it.

That’s certainly one way to create the narrative. But as you point out, it’s not the whole picture. The florescent lights snap on. Your caregivers once again subject you to the indignities of cathing, suctioning, bowel care and more, and the realities of your condition and what Roger faces become as harsh as the light.

So, yes, clarification is important.

I wondered at my own comment. How inappropriate, I thought, to comment on the sense of peacefulness, given what Roger and Brooke must endure. But it is one way of framing the story.

I’ve shared with you both privately and in these comments the experience of seeing a friend drowning in dementia. Its onset was as sudden as Brooke’s accident, and over the course of 18 months, initial hope for some return of normalcy was replaced by a bleak awareness that he would only deteriorate.

It was painful to witness this, aware of my helplessness to do anything substantive to help. What made it slightly more bearable was being conscious of the occasional moments of grace or lightness. There were quite a few of these, in fact, if one was able to detach from the image of who the man he had been before the brain damage and be open to the man who remained after it.

Like you, he had been a man of tremendous physical and emotional courage, always putting himself on the line. After the damage, among the fragments that remained was the courage with which he carried on in spite of limitations and indignity. But seeing those moments of grace was not something everyone could do. Many of his friends could not get pass their own grief and shame about his condition. Because they were unable to see past the degradation, they were unable to see the humanity and the dignity of the man who remained. It was, in part, a question of which narrative they were open to.

His life had been marked by more than physical stamina and courage. He had also shown emotional courage in facing down his own demons. Peggy’s use of adventure reminded me of how, before the dementia, he tried to reconcile himself with the sometimes crippling pain those demons brought him.

‘Always an adventure,’ he’d say when it was all he could do to cope. So that’s what I said to him in his dementia – ‘Always an adventure’ or ‘Keep climbing the mountain’ – to reinforce the connection between his old self and the self that remained. It framed it in a way he could understand.

In fact, of course, it wasn’t an adventure. It was a hopeless slog toward death, by turns desperate, boring, terrifying and hideous, leavened at times by humour, tenderness and those chance moments of grace. No one would wish it on anyone. But, however disingenuous, framing it in positive, even hopeful, language rather than as a blunt expression of the reality created a narrative to keep despair at bay. Which had been his habit when he had been fully mented. All he could do, all I could help him do, was keep going, one awful day after another.

As you and Roger are doing, going forward with great courage and intelligence. Whether it is framed as an adventure or, perhaps more honestly, as complete disaster, you retain your humanity and dignity. You are adding to the meaning to your lives, creating legacies, in fact, Brooke through your writing and plans to teach, Roger through his research and publishing on ALS.

When I tell my friend’s story, I don’t frame it as an adventure; I add my own construction, making it a tale of redemption. Doing so makes it bearable, makes of it something other than a story of waste and loss. I do it, I suppose, to protect myself. I don’t know if the narrative I tell is objectively true, whether it is based in reality rather than wishful thinking, but it gets me through the day.

Anonymous said...

thanks Brooke. I'll go find The Winter Pond tomorrow and read it. Then it's to the Fall Festival at Sophia's school, where we do various Halloween-y things. I'm signed up to chaperone the Cake Walk. But this weekend I'm by myself, so I can read and reflect. You're my hero, more now than ever. Thanks for your continued courage and the words.


norm said...

Peggy - at dinner last week I read to you a quote which I had discovered in the comments to your blog. I believe it was Lorraine Seal who originally posted it, a statement from a friend, but I may be wrong in that. At any rate I found it thought provoking.
It is this

“I start from the premise that life is meaningless, a complete void, without redemption, and that you, I, one, responds by imposing meaning on the world by creating a reflection of one’s character on the world.


Lorraine Seal said...

Yes, Norm, those are my friend's words, the same friend about whom I write here.