Tuesday, May 5, 2009

On the "Bipolar" Character of the Days

(Written by Brooke and Peggy together)



Brooke’s been at South Davis since the 3rd of March, two months now. All the days seem the same, with the seemingly tiniest variations: they all involve turning every 2 hours, straight-cathing 5 times as day, 3 doses of medications (with the sleeping pill sometimes a bit delayed), one suppository and one event of bowel care, 4 episodes of CoughAssist respiratory hygiene, and 2 periods of vent-free breathing exercise. Mondays Wednesdays Fridays, add a shower. Tuesdays and Thursday, physical therapy in the bed; MWF in the chair or on the mats. The doctor is supposed to come on Tuesdays and Thursdays, but he’s more free-spirited than that, and could turn up at almost any hour. The nurses and the aides and the lady who takes the food orders and the folks who collect the trash (at least 4 times a day) all come in and out of the room with predictable frequency.
This pattern might seem monotonous. But there are rhythms in it that might not be apparent to outside observers, rhythms of good days and bad days, cycling along behind each other in a larger forward movement in the process of weaning off the vent and seeking regained function and mobility. The good days are days in which Brooke extends the amount of time he can breathe off the vent: two weeks ago it was almost an hour, then last week an hour and fifteen minutes; today he hit a new record for a single session: 90 minutes in a row, followed by another 30 minutes in the late afternoon, for a total vent-free time of two hours today. This is splendid! But the pattern of progress plays off against frequent failures (though one never hears this word spoken here), when the most he can manage is 30 minutes, 20 minutes, sometimes just 7 or 5 or maybe none at all. The good days are exhiliarating but the bad days, psychologically speaking at any rate, feel he says much like the depressions he used to suffer from for years. Physically these bad days are often characterized by terrible spasms, especially over the last several weeks the severe, vise-like spasms that grip him around the chest, plus a sense of physical exhaustion that is difficult to bear over the course of a day. Of course, the physical and the mental distress are inseparable from one another, and when one of these days occurs it is very hard to hold on to the knowledge that a bad day like this will be followed by a good day, in which energy returns and the world looks beautiful and hopeful. Others have told us about this phenomenon, most notably Brooke’s mentor and friend Dale Hull, but no matter how many times advice is given it never mitigates the enervating feelings created by the spasms and the terrible chest muscle contractions that make him almost rigid, like a board. Depression always accompanies these physical symptoms.
In an earlier entry on this blog, Brooke said, I don’t feel depression, and I can’t afford to be depressed. But the pattern that has emerged over the past two months has made me modify my over-confident assertion. Just the same, I think the fact that I now experience depression is in a way a kind of gain: then, it was true, when my sheer survival was less certain and nothing at all could be predicted about my future, I really couldn’t afford to be depressed; now, as my physical condition is more stable and I have some return of sensation and movement, I am beginning to be able to afford to be depressed. It’s a biological sort of depression associated with spasms and pain, not so much anxiety about the future or grief over the past, and as I said it comes in rhythm patterns—good days, bad days, good days again. But now it is possible to recognize depression, and while I am not so strong as to be able to embrace it, at least I can look it in the face. It’s here, no doubt about it; but so are the good days too.
In the bipolar disorder that I’ve suffered from for about fifty years of my life (now dramatically reduced by wonderful help in trying to understand its developmental roots and also by great psychotherapeutic drugs), depression lasted months, followed by mania that lasted about the same amount of time, but was always accompanied by the gnawing feeling that there would be a terrible payback once the mania disappeared. Here, the pattern is on an almost day-to-day basis, and the days of this physical and mental depletion are the result of exhaustion from the hard work of the day before: breathing, having one’s limbs manipulated, standing at a 30 degree angle on a tilt table in order to strengthen his bones and his cardiovascular function, and so on. You could say that there is progress in bipolar disorder if one decides to learn from it and to make something out of it; but here, progress is much more palpable. The goal is to wean from the vent, and every day—at least, every other day, every alternating day, brings us closer to this goal.
Peggy and I sat on the little balcony of this hospital this evening, I in my wheelchair and she feeding me Mexican food, washed down with beer, to celebrate Cinco de Mayo. The balcony faces west, looking out over the Great Salt Lake and the island in the middle of it, Antelope Island. The sun lowered gradually, reflected so brightly in the shallow waters of the lake that it seemed to make a second sun; it tinged little clouds with luminous edges, and after it sank behind a large dark cloud for some minutes, it reappeared just above the ridgeline of Antelope Island, glowing bright yellow-orange, before it disappeared for good. That ridgeline is one where we have hiked often, one of our favorites hikes; but it’s not missing this that’s the focus of depression but only the physiological bipolarity of these days.

11 comments:

whitem24 said...

such a beautiful piece of writing, Brooke, incredibly profound and soulful . . . you have so much to give. thanks.

much love,
mike

Gale said...

I've seen you up and I've seen you up, Brooke; but I have never heard you characterize a "down" as somehow productive. Hang in there. You are making progress and that's the thing to remember.

Years ago, driving from Lagoon to Salt Lake City, we saw two rainbows against the west facing hills. They intersected with one another, a seemingly impossible occurence! How could it possibly be? It turned out that one rainbow was formed from the sun itself and the other from the sun's reflection on the lake. The reflection was the one you enjoyed on Cinco de Mayo - a beautiful sight

Holly said...

Brooke and Peggy, I honor your candor and the power of your writing. Thank you, Brooke, for sharing that lovely image of sunset over Antelope Island. I'm so glad you got beer and Mexican food for Cinco de Mayo.

Ted and I send all good thoughts. Blessings.

Holly Mullen and Ted Wilson

Brenda Cowley said...

I don't like to say that I have a "favorite" posting from the two of you-- each one presents us with challenges and new ideas...but this one truly is astounding.

Thank you both for continuing to share so much ---

You words are in my heart now, and I'll carry them with me throughout the day. Thank you.

I love you,
Brenda

dsilva said...

Dear Brooke and Peggy,
After months of witnessing your courage and frankness with the nagging sense that I want to say something but do not know what, your last post finally moved me to become a small part of your cyber support system.
My interaction with Peggy was brief. My partner and I spoke to you two after a Kingsbury Hall performance. Charming and intelligent, she led a discussion of medical ethics and we subsequently invited the two busy people to a meal that never happened. The love and intellectual respect between you spoke through the subtlety of body language and facial expression. Peggy did most of the talking and Brooke beamed with pride.
As for Brooke, I enjoyed two wonderful semesters in Brooke's classes. His animation was simultaneously off putting, hilarious, and the result of a teacher's frustration. I hadn't then and likely will never again see an instruction so committed to the truth in those moments. I took two classes from Brooke because he made me feel the essence of creation in the works of Shakespeare, Swift, Wordsworth, and many more. I became an English major because I love the life of the mind and the internal animation that happens with the reading of great writing. Through Brooke's passionate expressions regarding these works, I not only loved the literature, but learned to love the man whose experience was so freely shared. Without perhaps knowing it, Brooke became both cheerleader and mentor for many who question the relevance of literary studies in a world such as this. Long winded but very sincere, if there is any way that my little life can again touch yours, I would be truly honored.

With Endless Respect and Love,
David Silva

R. Alta said...

I thought perhaps you might find this story rather moving.

================

Man who wouldn't walk again finishes marathon



LONDON, England (CNN) -- British soldier Phil Packer was told a year ago that he would never walk again, but on Saturday he finished the London Marathon.

He completed the race 13 days after it started, walking on crutches for two miles a day -- the most his doctor would allow -- in order to raise money for charity.

Flanked by cheering soldiers and supporters, an obviously emotional Packer had defied medical opinion after his lower spine was badly injured in the aftermath of a rocket attack on his base in Basra, Iraq, in February 2008.

The attack sent a vehicle rolling down a sand bank, striking Packer "head on" and dragging him under it.

The 36-year-old was left with no feeling or motor control in his legs, and no bladder or bowel control.

Packer was in hospital for more than four months and it was then he decided to complete three challenges to help raise £1 million ($1.5 million) for Help for Heroes, a British charity supporting wounded veterans.

In February he rowed the English Channel, and next month he plans to climb El Capitan -- one of America's iconic mountaineering sites -- a 3,000-foot vertical rock formation in California.

Packer, who was met at the marathon finish line by British Olympian Steve Redgrave, said that he was £370,000 ($558,000) short of his goal but he was hoping for more donations.

Dressed in a white charity T-shirt and desert fatigues, he was emotional.

"It's looking after our injured servicemen," he said. "There's a lot of people that can't do this, so this is for them."

Earlier this week he told CNN that he "wanted to be able to move on in life."

"I wanted to do something for other personnel who had been wounded.

"I don't want to be helped. I want to help other people. Not that I'm not grateful, but... you know... I really want to be able to help people."

He attributed being back on his feet to "fantastic medical support" from Britain's Ministry of Defense and National Health Service.

"So many improvements are being made" in medicine, he said. "It's an evolving process."

However, he did not know whether he would be able to walk without crutches.

"I gotta see how it goes. Take every improvement as it comes."

Packer is far from alone; the six-year war in Iraq has disabled thousands of people.

Britain's Ministry of Defense did not respond to a CNN question about how many service members had been permanently disabled in the war.

In the United States, the Congressional Research Service reported in March that 31,131 troops had been wounded in Iraq. That figure is for battlefield injuries; many more veterans were later diagnosed with some sort of traumatic brain injury, but it is difficult to determine an exact number because of how the data is kept.

It's not clear how many of the injuries are permanent because the Department of Veterans' Affairs does not classify some disabilities that way until 10 years after the injury, said Ryan Gallucci of AmVets, a veterans' service organization.

Statistics for Iraqis are even harder to come by. Estimates of the number of wounded range from tens of thousands to hundreds of thousands. Iraq's Ministry of Heath says one in four wounded Iraqis have lost at least one limb.

Britain's Prince Charles is among those who have expressed support for Packer.

"You are, if I may say so, a credit to the Royal Military Police and to the British Army as a whole," the heir to the British throne wrote in a letter posted on Packer's Web site, http://www.philpacker.com/.

Packer is still on active duty and intends to remain so.

"I've still got a career in the armed forces. I'm going to go back to it."

He has 16 years of service under his belt, including time as an enlisted man before he went to officer training school and is, he noted with a rueful laugh, 20 years from retirement.

He's been asked to be an ambassador for Prince Charles' charity, the Prince's Trust, which focuses on helping young people, in addition to his life in what he calls "the disability community."

After his two-week effort, Packer was asked whether he would be relaxing in a warm bath.

No, he said, "I'm going to have a drink." And with that, the army major lifted a shot glass and toasted his supporters.

CNN's Richard Greene contributed to this report.





Find this article at:
http://www.cnn.com/2009/WORLD/europe/05/09/london.marathon.soldier.disabled/index.html

Patrick Zwick said...

Last night when we got home from visiting Brooke, I sent Peggy an email that she's asked me to share with the blog. I could add so much. Brooke talking about his first hearing of the Late Beethoven String Quartets (Budapest Quartet) as a twenty year old. He was commenting on how few "got" Beethoven and Proust at first. Now they are iconic. A call from a Boston dentist friend. Two beautiful men who support each other with great mutual love as they face the challenges that life has put in their paths. But let the email suffice. This wonderful blog continues to mean so much to so many.
Patrick

Dear Peggy
A fine visit tonight. When we arrived Brooke was finishing up 80 minutes off the vent having done 70 minutes earlier in the day for a total of 2 1/2 hours today. His new schedule is giving him more sleep and sounded like a real improvement. Bowel care and shower at 9:30 etc.
We watched Dick Durbin on tonight's Bill Moyers Journal and switched to the archives on the computer and watched last week's interview with Bruce Fine and Mark Danner. Powerful stuff.
We had lunch at Cafe Med today and brought up some moussaka, Greek salad and rice that Brooke seemed to enjoy a lot. Topped dinner off with the chocolate mousse in the frige. Mary and I finished off a bottle of wine and Brooke had one of those delicious Squatter's pale ales. Yumm.
Mary and Brooke discussed Swann's Way at length. I enjoyed listening. Great to witness Brooke's great knowledge and love of Proust.
I brought up some books on cds (4) that I hope Brooke enjoys. He's loving the "Hemingses of Mounticello" that he's listening to now. When we left, we had that CD on.
Hope you had fun at the Symphony. Schedule us in again soon. We love our visits with Brooke. We would love one with you too or both of you. I'm probably forgetting things but wanted to let you know that all went well. All our love,
Patrick & Mary

Pat and Mary, thanks so much for sending this, it is a real comfort and indeed a genuine delight to hear about your evening with Brooke. In fact, it's so heartwarming I'm passing it around to the family, herewith, so they can hear about both the culinary and the intellectual menu as well, not to mention the spectacular 2 1/2 hours off the vent.

The symphony tonight--which you'll hear tomorrow night--was terrific, if you like a talented young violinist in a spectacular red dress and a rigorous, utterly rousing performance of Tchaikovsky's 5th. Thanks for making it possible for me to go, even if I did miss the moussaka. The Mickelsen/Kuhlmans went along and Dave is volunteering to help manage the van/wheelchair end of things in getting Brooke to the symphony next year, this is absolutely wonderful, and I know you Pat can arrange some trial runs at rehearsals--

it all seems like progress, maybe even coordinated progress, amazing.
Peggy

ed ranney said...

Hi Brooke and Peggy,

Touching and beautifully put, the discussion of depression and bi-polarity. So many have become victims of this affliction, for Melanie and me in particular, one of our former students in Vermont, sadly lost. But it's clear to me, Brooke, you've not just endured it but used it as a vehicle for understanding, attachment to others ( as I have felt from so many years past), and as your student David put it so insightfully, definitely a key component in your way of provoking that "internal animation" in the mind which we all cherish so.

What an amazing thing that ou can see from your place of recovery such intimately charges sights as the lake and rainbows, places in your mental landscape, that are so important, definitely nurturing, even when you cannot see them. Keep them vivid, cherished.

Happy May, and splendours of spring.

Love from all,

Ed

Dana Wilson said...

Lynn and I have been like dsilva who posted a comment earlier. We've been checking in on you frequently, telegraphing good Karma, praying for you in our own secular way, but reluctant to put our comments amongst those posted by your close friends.

This post struck me. You mentioned the monotony of days. Others spoke of your interest in and expertise on Proust.

I couldn't help but think of The Magic Mountain which I read more than 50 years ago, but often revisited in my mind as I took care of patients with chronic illnesses. I can still see Hans Castorp, cavorting with his girlfriend and her whistling pneumothorax. I still have a visceral sense of the time-compression that one feels with a chronic illness in an institutionalized environment.

When my Dad was an inmate at Doxey-Hatch, we got a sense of that time distortion. There was energy-crushing routine. One day was much like another, indistinguishable from the last or the next, in fact. We'd come in from the hustle and hurry-up of everyday life on the outside and time would immediately slow down.

There was a sense of peace in it. With each visit to see Dad, my clock would slow down. We'd connect with the day-to-day lives of the residents, and get in touch with the things that were most important. But you know all that.

The other resonant note for us in the latest blog is the Bipolar dimension. BPI is a potent stimulus for creativity and genius, just as it can be a curse for it's bearer. You are a genius to be able to parse what's useful about it and turn your back on what isn't.

Hang in there Dude! The Good Days are the Truth. The bad days are a distortion. That may or may not be true, but that's the way we survive.

Dana Wilson

Lorraine Seal said...

Brooke

As Gale noted, I come away from your post feeling fundamentally optimistic, not just because of the lovely image you leave us with but from your understanding that your depression arises from directly from your work toward healing.

It takes tremendous courage to go within oneself and face one’s demons. You have done so, both before your accident and now, as you wrestle with the twin demons of depression and physical disability. This metaphysical excavation is difficult, and I honour your courage in doing the work.

As we’ve remarked before, there are vast differences between your experience and that of my friend’s, but among the similarities are some you note in this posting: exhaustion arising from the hard work of striving for function and the rhythm of bad days offset by good. I couldn’t tell what caused the cycles: his temperament, chemical imbalances, fatigue or simply the vagaries of life, with or without dementia.

I continue to follow your progress avidly and check your blog daily. Thank you for the honesty with which you and Peggy are sharing your experience. To end, I give you the image of our fleet swallows, having at last returned from Africa, soaring and swooping in the long Irish evenings, dancing in the clear pale light as the day yields up its soft blue sky to a lingering dusk.

love to you both,
Lorraine

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