So here we are having Easter dinner—leftovers of a delicious lunch brought by wonderful friends—salads from Trio, a local restaurant that’s a favorite with the university crowd. These leftovers have been in the fridge down the hall from Brooke’s room, stored away in their doggie-bag take-out boxes, but they’re almost as good as they were at noon. Then there are two glasses of red wine, left over from a much earlier occasion but still enjoyed. It’s a richer Easter dinner for us than any we can imagine—no big ham, no sweet potatoes, no painted eggs, but still wonderful. We would have liked to be at Obama's seder, but here at South Davis, it's Easter.
This may be painting too rosy a picture. Yesterday, the day between Good Friday and Easter, both of us descended into our own private hells, after having had little sleep the night before, and having undergone a rough trach mask trial. It was in the early afternoon. Peggy, exhausted after getting back from her first trip out of town, to a philosophy conference in Vancouver, hadn’t slept, she thinks, because it signaled a return from the everyday world outside to the rarified existence we have here. Brooke hadn’t slept for all the usual reasons: anyone who has ever been in a hospital knows about all the nursing interruptions, though he usually sleeps right through them now. So by midafternoon we were both quite low, and for the first time Brooke felt, he said, that he didn’t want to go on breathing—that is, trying to breathe. It is such hard work. We’re told this feeling is common among people undergoing vent weaning, but that doesn’t mitigate its extraordinary power. Brooke says he didn’t consciously want to die; he just didn’t want to try to be breathing any longer, it was such hard, hard work. And Peggy—having had a first taste of the outside world, an elegant city, out of the country, vibrant in the sunshine, seemed tempted by ordinary life, far away from these troubles.
But by an hour later, after we’d each slept a little, things changed. Brooke said, We have to be strong. And, after a few more tears, we were. Then Brooke had a much stronger session on the trach trials—40 minutes this time—and then Peggy did a little range-of-motion exercises (learned from the pros around here) with his limbs in the bed. Left hand: thumb, forefinger, pinching together the thumb and forefinger, thumb and middle finger, thumb and ring finger, and almost thumb and pinky. These all represent different dermatomes, nerves at different locations on the spinal cord. The left hand can move voluntarily back and forth. No upper arm stuff yet. Meanwhile, the right hand is catching up, slowly, but catching up. And the left leg moves: back and forth, knee up and down, and while the right leg isn’t as active, the right toes move. And he can move his shoulders and some trunk muscles. And when he does this all at the same time, it’s as if he were coming alive again, after these long five months—especially the early months when his entire body, below the tops of his shoulders, was completely inert. Neither of us is particularly religious, but the sense of resurrection is uncannily real—from a body that seemed so completely dead to any sensation or activity, so utterly motionless, so totally paralyzed, to one in which there are stirrings of life. He is still of course nearly completely paralyzed and without any effective function, and there are still terribly difficult moments, but things are nevertheless improving, even if very, very, very slowly.
We had a lovely dinner together that night, leftovers from a wonderful dinner with friends the night before—Morroccan tagine, couscous, beet salad, a spectacular apple tart. We talked, talked. And kissed. And today, Easter, we’re again eating leftovers, but even more fully imbued with this remarkable secular sense of resurrection.
Brooke and Peggy
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7 comments:
Dear Brooke and Peggy...
The Easter Posting is particularly difficult to comment on, as it is both heartbreaking and beautiful all in one.
I remember a time in my life when I "did not want to keep breathing, because it was too hard --" The two of you would have nothing to do with this way of thinking and made me come over for dinner.
You talked my ears off, and I got a big lecture from Brooke about the necessity of celebrating my body, my life.
I cried a LOT, we laughed a LOT, we ate, had wine, and the two of you ran out the door like a couple of teenagers to catch a film at the Broadway.
I went home, sleepy...renewed...and more than ready to Keep Trying.
I listened to the two of you that night, and I began the slow climb "out," -- out of the house, out of my self-imposed junk --
And I started to "breathe" again.
I doubt very much that I am the ONLY person in your lives who has a similar story: "I was at such and such a place in my life, Brooke and Peggy had me over, and I went home ready to face my circumstances, feeling better -- FED."
Brooke -- I will remind you that you did NOT give me the option that night to roll over and stop trying. The ONLY option you gave me (I remember clearly) was that I had to PROMISE you that I would go out DANCING. (Which I did. It took two weeks, but I honored my promise.) My circumstances were not nearly as critical or physically challenging as yours, obviously.
I won't lecture you in quite the same way that you got to me that night -- but I will remind you to be gentle with yourself, renew your energy and keep up the fight.
And please -- KEEP KIIIISSSSSIIIINNNGGG!!!!!!
Did you see the Water, Peggy? I hope so.
My love to you -- with gratitude that it was the two of you that reminded me how important it is to Keep Up the Fight -- ALWAYS --
Brenda Cowley
P.s. (Me again/sorry)
Brooke -- Your Words:
"You need to LOVE your body, Brenda. You need to understand how IMPORTANT this is!"
(I will remind you that you stood up at this point, and were kind of yelling at me. I am laughing at the memory -- but your words have stayed with me since that evening.)
Brenda
Hi Brooke and Peggy,
Gale's recollections of his travels and adventures with Brooke prompt me to recall a few of my own. I remember the first time we ascended Deseret Peak together. The wild mustangs were up there, and we saw great piles of droppings left by the stallions to mark out their territory. It struck me as a perfect allegory of academia. You leave as big a pile as you can for all to see and smell, and if anyone encroaches on your territory, you kick hell out of him, or try to. The last time we ascended Deseret Peak we returned to Salt Lake to find the roads littered with debris. A tornado had struck Zion while we were up on the peak. We also had some memorable cross-country ski outings. Once we watched a guy making perfect cork screw turns down Maybird. His voice was hoarse, and he was very stoned. Then there was the Pfeifferhorn. On a blazing hot July day in 1979 we climbed it and discoursed on the state of our department. As always, Brooke imposed literary paradigms. One colleague was someone out of Kafka. Another could be found in Hardy, and so on. We also did Twin Peaks together.
We backpacked with our families in both the Uintas and the Sawtooth Mtns. of Idaho. On the Sawtooth trip we became strung out along the trail. Brooke, Michael, and Jill were ahead. Sondra, Chris, and I brought up the rear, and Peggy was between us. At sunset we encountered Peggy sitting on a rock. "Peggy, are you ready for the cocktail hour?" I asked. "Sure," she replied. So I brought out a fifth of bourbon. In a little while, Brooke came back looking for us. "What are you doing?" he wanted to know. "We're drinking," I replied.
We had one Thanksgiving at our house, enjoying a turkey that had bounced down our stairs in a frozen state and gone through the wall next to our front door. ("What was the turkey driving, Sondra?" our insurance man wanted to know.) After Thanksgiving dinner, Brooke and Peggy proposed going up to Lava Hot Springs. We promptly left all the dishes in the sink and headed up to Idaho. That evening, after enjoying the springs, we went to a bar that had its own cowboy band. The place was about to close down permanently after that evening, and we danced their last night away. The next day was Peggy's birthday, and we brought her champagne in bed.
Brooke shared with me some of his memorable mountain moments. He told me about a special time at sunrise up in the Bighorns. The Bighorns are special to me as well. I once heard a cougar scream at sunset while riding out on horseback. My horse seemed to tiptoe in response.
I cherish the memories of the good times we had together, and I believe that there will be more good times when Brooke recovers. Sondra joins with me in sending love. Thank you, Brooke, for always being such a good friend.
Geoff Aggeler
Thank you Peggy for including me in the details of your lives and the ups and downs of this journey. Your blog is inspiring to read and I feel grateful to know you. We will look forward to coming to see you both soon, and I will bring a new Easter gift, alittle belated. Kay Richards
Ouch. You have the knack sometimes for cutting close to the bone. As usual when you do, I’m struggling to respond. I can but admire your honesty in writing so clearly about pain we generally manage to avoid facing; it is a rare ability. I also admire the self-searching and equanimity that allows you to embrace those feelings of resurrection, to discern amid the pain the grain of sand that may become a pearl. There are times when the willingness and ability to do so save our sanity and may even become the stuff of joy.
Peggy, you suggested that I publish here experiences I might normally have written to you privately because, as you put it, they are “part of the larger story of unexpected things that happen in life.” And though there are many important differences in our circumstances, these differences recede in the fundamental struggle to cope with radically altered lives. It’s like being swallowed by the whale and surviving, but not knowing whether one will be coughed up on the shore or what the landscape will be like if one is.
I remember a conversation with my friend one December morning as the fog pressed against my windows, the room cast in shadows, some five months after the onset of his dementia. He was in one of his relatively lucid states, so we were able to converse more or less normally.
“This is so hard,” I said, then stopped, appalled. I meant it was hard for me, and I was horrified by this admission of selfishness. He was the one incapacitated and living a life constrained by enormous hardship. However, being relatively lucid, he tried to comfort me: “It’s hard in a different way.”
And it is for both you as well, moving forward, each of you carrying a different end of an incredibly heavy burden, like two people straining to carry a piano upstairs. Who is to say, at times, who has the heavier burden?
Peggy, you wrote several months ago that the only unfairness you acknowledged was that “Brooke has to pay the whole price.” While that it is true that Brooke’s loss of mobility a terrible, even tragic, loss, it is not true that you are not sharing the cost as well. You and Brooke know that, your family, friends, colleagues and the readers of this blog know this, and the medical and rehab staffs know this. Right now, I imagine that you are feeling the realities of the ordeal in a new way. After the initial shock, terror and horror shift to relief, hope and even acceptance. You’ve shared that with all of us with remarkable optimism and, as I said earlier, equanimity. But I know too there are times that the dull grind of grim daily reality threaten far darker moods.
I remember the despair of this period, five or six months into the adventure. I said to my favourite nurse one morning that I just wanted it to be “over,” a wish that seemed an egregious betrayal. My friend was not receiving remedial therapy, his death was the only way the experience was going to be “over.” Certainly I didn’t want to lose this precious friend, nor did I mean I was giving up on him. But the grey daily dullness of his condition, given up by most as irremediable, felt impossible to bear at times. However, as with climbing any mountain, the only thing to do was to keep taking one step after another, and, as you have found, every so often in the bleakness there would be a bright open spot flooded with joy as brilliant as colour, and that would transcend all the rest. Even now that’s how I hold in memory the 18 months of his disability, awful as they were.
The outlook is brighter for you, Brooke, as you build on tiny, incremental improvements. I know, as all your friends know, that you’re not going to give up. But I also understand that you’re engaged in an effort beyond what we who are not disabled truly can’t comprehend. I witnessed my friend’s exhaustion after he managed, as he did with some regularity, to maintain relative lucidity or have a grounded conversation. In these states, he’d hold confusion more or less at bay for brief periods. Then he’d collapse mentally, retreating into a world where primal terror conquered what traces of rationality had remained. I came to see these breakdowns as the aftermath of debilitating effort. In a parallel way, your exhaustion must lead to profound discouragement. Just as in one of my friend’s comparative lucid states he told me he felt like giving up, because, it seemed, there was no one around him (in the nursing home) to talk to, there must times when it seems too much work to go on.
But as he carried on, to the extent he could, as will you, just as I did when once, foolishly and unprepared, I climbed a mountain by myself, on an August afternoon in Southern California. After reaching the summit and reeling, disoriented by the glare reflected off its bare stone face, I could think of nothing to do but to collapse and wait . . . until what? A helicopter rescue? A stray state park ranger? I didn’t know, but I knew I had no more reserves to go on.
But, of course, I did. I staggered on my own down the mountain and even managed later to climb it two more times. None of which, of course, compares with the heroic efforts you make when you complete a trach trial or pinch together your forefinger and thumb. You are Heracles, dispatching the many-headed beast, breath by difficult breath. That you continue to embrace bounty of life – wonderful food, music, shared joy with Peggy and friends – speaks to your courage in transcending this tragedy.
With love to you both,
Lorraine
Okay, now that's just not fair. Lorraine's comment was WAY better than mine.
And beautiful. Thank you Lorraine.
Brenda
You’re very kind, Brenda, to comment on what I’ve written, and I’m glad if my thoughts moved you. It’s just that I’m aware of how very difficult these life-changing accidents can be.
Here’s what my long-time therapist wrote about her former analyst:
“Thank you for sending me Peggy's quite amazing letter and your response to it. I am reminded of my analyst's experience almost 10 years ago, when he slipped on the shiny wet tiles of his front porch and sustained a terrible head injury. He regained his use of his body quite quickly, except for his sense of smell and taste, but his mind was another matter. After trying to go back to work and being told by one of his patients that he was NOT OKAY, he had to go into a rehab and learn to be a person again. I remember his tears as he told me of crying from exhaustion and shame day after day, fearing he would never come back. And his family was terrified and in despair -- they had lost their loved one completely even though he was present bodily. Every time I would walk on those now sanded-down tiles and feel the slick bits where the glaze was still peeking through, I would feel the possible loss of someone whom I now love, but didn't even know then.”
It’s harder than we can realise without experiencing it how difficult it is to regain a faculty that was once as natural as breathing.
By the way, Brooke and Peggy were there for me to when I was at the end of my tether. They are amazing friends whose influence stayed with me long after I left the university.
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