Thursday, October 29, 2009

Late October Blues


The changing of the seasons from fall to winter has come quite abruptly this year.  We’re having our first snowstorm today, October 27, while the leaves are still on the trees.  The days are rapidly darkening, and the time change looms, when one finally acknowledges the ultimate loss of those long summer evenings we’d enjoyed sitting on the balcony looking out at the sunset across the Great Salt Lake or following the nesting patterns of that swallows that inhabited the porch.

            I felt it especially yesterday, those late October blues.  It brought what seemed to me to be my first full-fledged depressive episode since my injury almost a year ago.  The episode lasted about twelve hours, finally broken by the actual arrival of the storm that had been threatening. I was afraid the depression was going to be the beginning of something much worse—and maybe it will be--but at the moment it has lifted, as Peggy and I sit together in my bed writing these notes.


The day preceding the storm seems to have affected much of the staff here at South Davis. Indeed, it seemed as if the whole community of patients and therapists was having the blues at the same time.   When I was being given my shower last night it was particularly grotesque, and the shower aides seemed to be feeling the same thing. I ordinarily perceive this as quite a caring community—I know all the nurses, all the aides, all the respiratory therapists--but last night it seemed quite the other way.  It was very late when the preparations for the shower started, well after 9pm, and went on until quarter to 10.  Nobody seemed to want to be there, not the aides, not the respiratory therapist, no one.  They put the sling for the hoyer under me, then hoisted me into the shower chair, disconnected the ventilator and began bagging me with the hand pump that looks like a blue football with a tube on one end that connects to my trach.  But they didn’t laugh, didn’t joke, weren’t their usual lighthearted selves at all.  One of them said that her head was in outer space.  The experience of taking the shower was so mechanical, just slumped there naked and able to see my useless body; no one said anything, and I’ve never felt more like just an object, a thing.


            Today, I asked several people around here in kind of an anecdotal way whether they’d felt the same way yesterday as the storm was approaching, bringing what I was calling the late October blues, and a number of staff members said yes, yesterday had been a particularly tough day.  It felt to me, the patient, like this, this is really getting old.  How can I continue to do this, month after month, with the same therapists, doing roughly the same thing? The therapists too must be feeling what I’m feeling, which is, how long can this go on? How much more of this can I take? What’s the point of working with this guy?  I was sitting in my wheelchair doing leg strengthening and joint compression with my PT and his aide, two people I’m normally comfortable with, but I found I was saying to myself,  how can I go on listening to these banal conversations (this one was about hamsters)  day after day, and how can I go on doing things that are so repetitive:  trach mask trials,  leg exercises, tilt table sessions, day after day.  Nothing distinguishes one day from another, at least with respect to the therapy sessions. 

  But then I reminded myself of the Buddhist notion that everything that I’m seeing or hearing is a product of my own mental constructs at the moment, and that gave me something to hold onto, the recognition that the depression  I was feeling was really my own projection, a projection of my own mental state, and that it would pass, that it would go away.  That gave me quite a bit of consolation.  And indeed the depression did go away.

It came back again when a friend was reading Bob Herbert’s column in the New York Times about the paralysis of the American public in the face of increasing unemployment and other threats of the moment, a metaphor which has needless to say increasingly sensitive resonance for me.  But my trach trial had begun, so I couldn’t speak and hence couldn’t discuss this enormously disturbing piece or the metaphor of paralysis that it employed.  It was yet another version of the powerlessness that is with me all the time. Then there was more:  the seasons are changing around here, and seemingly with greater rapidity than usual: November, December, January, February, March—these are the months ahead, dark months with short bleak days, when partly because temperature regulation is so difficult for quads—they get cold and stay cold, and sometimes dangerously so because they can’t actually feel the cold (it’s the same way with heat in the summer), I expect to be cooped up mostly inside, essentially confined to basically the two or three rooms downstairs in our two-story house.

As waves of sadness rolled over me I felt as if I couldn’t get beyond the first half-hour of the trach mask trial, but somehow I managed to push through the depression.  One way I did this was to think about the eleven-year-old boy I had once been, a boy who emerged from a serious depression while away at summer camp, without treatment, without psychologizing, just suffering through it on his own, but at the end as it melted away, he was strong, triumphant over something devastating and dangerous.  The notion that consoled me was that strength comes if you’ve been strong before, even if it in the moment it seems that you never can be strong again.  And somehow, despite the terrible clarity of this kind of depression, where it seems that things have gotten really old—the grinding insistence that this is all there is and that things will always be this way—I moved into an ecstatic state in the last couple of hours of the four-hour trach mask and saw the whole thing through a different glass, a sort of Buddhist-like calm and sense of wellbeing. It’s all such a psychic creation.  I will, and so will you, go through these ups and downs.

Somebody said they went outside at midnight last night and it was hauntingly, strangely warm, something we’ve learned often precedes a storm.  I saw the trees swirling this morning, and when the snow finally came, it was a relief.  Tonight we read the Coleridge poem Dejection—An Ode, about the depression leading up to a storm, but where the storm blows everything away.


Sunday, October 18, 2009

Tubes and Machines

Brooke's still on the vent, of course, but among the various tubes and machines he has been dependent on, there's one less: the feeding tube that permitted liquid feeding directly into the stomach is out, gone, history. Of course those of you who've been visiting and bringing amazing breakfasts, lunches, dinners know that Brooke hasn't been interested in liquid tube feeding for a very long time now and that he has an extraordinarily varied and wonderful diet--the best of all the things all of you cook--but that the feeding tube itself is gone is one more bit of concrete evidence of progress. After it was taken out, one of the aides remarked, "most people die with these things in," so there's a certain sense of critical achievement in getting rid of it even if it hasn't been in use for quite a long time.

The Photograph Itself

Tuesday, October 13, 2009

The Photograph

            Facing my bed, on top of the tall cabinet that holds the television and the drawers with various nursing supplies, is a photograph I took of a statue of the Buddha at a monastery in Myanmar.  I wrote the name on the back of the photograph: it is called the Bagaya Kyaning monastery; it is in Inwa, near Mandalay.  I took the photograph on Wednesday, December 19, 2007. 

            The monastery was first built in 1593, but the part has survived various moves and fires is from the 19th century.  It is made entirely made of teak:  286 huge logs support the roof and other parts of the structure, and very dark panels form the walls.  When I walked into the empty room where the statue was kept I was stunned by its beauty and dignity.   The Buddha figure sits on an elaborate throne covered with gold leaf, under a tasseled canopy of silk, but the figure itself is remarkably simple, self-contained, seated in a posture of perfect meditation with the right  hand in an iconic gesture, reaching downward to the earth.  The figure itself is made of translucent alabaster, a work of transcendent beauty. 

            It seemed then that this was what I had been looking for throughout the entire trip we took to that country, the former Burma.  I snapped a couple of photographs of the statue, the way a tourist might, but there was something more, something compelling and absorbing, deeply engaging, about this image.  One of the photographs came out almost perfectly, and I had it enlarged and gave copies to a few friends—the ones who might tolerate or even understand my interest in Buddhism—and of course kept a couple of copies for myself.  One still hangs on the wall near our kitchen, and one had hung from the door in the attic room I’d used for meditation, but is now on top of the television cabinet in my room at South Davis.  It’s not framed, but rather pinned to the back cover of Richard Holmes’ The Age of Wonder with a small butterfly clip; the book is fanned out half-open as a kind of makeshift support for the photograph.

I have an uncanny feeling about this photograph now, as if it had been taken in order to preside over this room I’ve been living in for the past six and a half months.  The photograph doesn’t picture me or any other people, just the Buddha figure, but just the same it allows me to remember myself then, so different from what I am now.  I was healthy and strong then, moving like everyone else unconsciously in my body, instead of now being paralyzed still almost completely and undergoing perhaps the most difficult exercise I’ve ever undergone in my life—learning to breathe again, to strengthen lungs that have atrophied during almost a year on a ventilator.  But it’s not the physical capacities that I remember as much as the moment when I was transfixed by this small alabaster statue.  It’s still almost the same, the effect that this figure has on me. The contrast between myself then and myself now is so stark to me, so weird, but that’s not what creates the feeling of uncanniness.  It’s rather the weird, counterintuitive, utterly irrational feeling that I somehow took that the photograph then because it would be so important to me now.   It’s important now partly because I read it as reminding me that the Buddha never gave up—a sense that’s crucial when I’m doing the trach mask trials.  I look up from my bed and see it during the day; I look at it in the low yellowish light of the ventilator the middle of the night when they turn me, or at four in the morning when I’m lying awake.  Perhaps I need something like this—maybe that’s my background childhood Catholicism speaking, as if this Buddha image were some kind of Asiatic crucifix.  But that’s not it, exactly.  Rather, it’s the uncanny feeling of prescience, as if I took this photograph in order to give myself a gift for enduring what I’m going through now.   Logically, of course, this can’t be the case; I took the photograph first and then the accident happened later, almost two years later.  Just the same, it feels  that way to me, as if I were preparing for something momentous, something in my future I couldn’t possibly anticipate but was nevertheless working toward, and this feeling is somehow consoling as I work my way through four hours of breathing in silence. 

Monday, October 12, 2009

Visit from family

Brooke's granddaughter, Kendra & her father Mike, visited last week.

Thursday, October 8, 2009

In His Own Voice

No news—which there hasn’t been on this blog for awhile—is good news, if you have the patience to think of slow, incremental, watching-grass grow news as good news. (It is.) Brooke’s had the trach downsized; this is good, and he's almost back up to where he was before, a bunch of hours off the vent. But the new development is the introduction of a speaking valve: this is a one-way cap that’s put over the opening to the trach, allowing him to breathe air in but forcing him to breathe it out through his mouth and nose, the way we normally do. This is of course extremely difficult when you’ve been doing it another way for almost a year, and also when your diaphragm hasn’t built up enough strength yet to exhale with real force. Just the same, when he’s on the speaking valve—just a few minutes at first, then a handful more, now about 45 minutes at a time, he can speak with his own voice. In sentences. Even paragraphs. And that’s the good news.

Son Mike and granddaughter Kendra (just finishing high school, looking carefully at colleges) will be here Friday and Saturday while Peggy’s away giving a talk in Frankfurt. If you want to arrange something with Brooke over the weekend, e-mail Mike at or Brooke’s new Personal Assistant & Nurse Julia Strompolos at, or try cellphoning me 801-824-9160 if you don’t think it’s the middle of the night in Europe.

And soon, it’ll be possible to talk to Brooke directly even while he’s trach-masking off the vent.