Sunday, September 11, 2005

Disjointed memories of connection

Very early in my hospital stay it came to me that I had to form a conscious intent to live. The doctors and nurses and techs working on me in what I felt as darkness couldn’t help me if I didn’t help them, and the only help I had to offer was the ability to form that intent and hang on to it no matter what. I remember saying to Dr. Kilbourn, the oncologist who got my treatment started, that there was something trying to kill me and I wasn’t going to let it, and I remember his voice saying something like, “That’s right,” and his hand touching my shoulder briefly. Earlier—maybe the same day, maybe a day earlier, I don’t know—he had said that the usual thing after a leukemia diagnosis was to discuss treatment options and the preferred sequence. But this time, he said, there were no treatment options and there wasn’t time to follow the preferred sequence. My condition was life-threatening, and they were going to have to perform leucoapheresis and start chemotherapy immediately, without waiting for the leucoapheresis to be finished.

Somewhere in there a bone marrow aspiration and biopsy were performed. I don’t know who actually did the work—probably Dr. Kilbourn.  I remember feeling the pressure on my back, but no pain. I must have been too sick to transport, because an anesthesiologist had apparently come to my room to put me under “Twilight sedation” so I’d be able to tolerate the procedure.

Sometime in the darkness strong arms came up under my armpits and around my chest and lifted me like a rag doll. There was a woman’s voice and an intense pain in my right upper arm as if a hot wire were being pushed through. The wire was withdrawn and the pain switched to the other arm; the woman’s voice kept up a flow of encouragement, though I don’t remember anything specific. I think this was Diane installing a PICC line a Peripherally Installed Central Catheter, though I had no idea of that at the time, and it wasn’t until weeks later that it finally occurred to me to ask someone what a PICC line was—I had been thinking that it was spelled p-i-c-k and that it had something to do with doctors and nurses “picking” a line to use for drawing blood, infusing blood or drugs, etc.  The first attempt to install the PICC line in my right arm didn’t work for some reason—hence the switch to the other side—and in the aftermath phlebitis set in: my right arm became swollen and weak, and I couldn’t use it to feed myself (though for a while I wasn’t strong enough to do that anyway, and in any case I had very little appetite).

I don’t know whether the PICC line went in before or after the leucoapheresis started. I don’t remember much of this part, either, and I was barely aware of what was going on. I have another memory of being lifted and of flopping like a rag doll. There was a pain at my neck (though the memory of pain may come from some later point, after the procedure had been completed), and there were two women’s voices, one high and clear (that was Paula) and the other deeper and huskier (that was Goldie). They talked, to me and to each other. Their voices sounded calm; they were telling me everything was going to be OK, I think, and occasionally I heard Goldie asking a question and Paula answering. At some point for some reason I needed to be upright, I think, and I think I remember Goldie draping my arms around her neck and telling me just to hang on as she stood up, lifting me. But I’m not sure—that might have been Mary, the tech who worked the early morning shift, whom I confused with Goldie for a while. Paula and Goldie were nurses with special certification to perform leucoapheresis—two of just a handful of people in the area who had the necessary training. According to Anna’s first email to friends and family, they did the leuico-aphoresis twice in order to get my white blood count down to manageable levels.  Goldie told us later, when she stopped by the room several weeks later as I was on the verge of being discharged, that they had reduced the count by 100,000 on the first pass on Sunday, and by another 50,000 or so the second time. She said she had prayed for me as she was driving in to the hospital that first day, knowing that I was in deep trouble. I have tears in my eyes as I write this. I had no idea at the time how terribly sick I was, or how close I had come to dying. I heard later that no one with a white count as high as mine had ever come into that hospital and lived as long as I had, and later still that I probably wouldn’t have lasted more than another 24 hours if Anna hadn’t brought me in to the hospital when she did.  I am a very, very, very fortunate man. and I’ll be forever indebted to Paula and Goldie and to all the other men and women whose names I never heard who worked so hard and with such tenderness and strength and skill to keep me alive. And of course to Anna, It must have been some penumbral awareness of how hard they were all working that brought me the recognition that I had to intend to live—that was the one thing they couldn’t do for me. When Goldie visited me in my room later, she recited a poem and said I owed her one. It’s coming, Goldie; I haven’t forgotten. But I can’t write it yet.  In the meantime, here’s a very short poem by William Carlos Williams, a doctor-poet who practiced both his medicine and his writing in Rutherford, New Jersey, in what was then (between about 1910 and 1940) a more rural area:

So much depends

A red wheel

Glazed with rain

Beside the white

That’s it. One of the things I like about “The Red Wheelbarrow” is a story I read somewhere that says Williams wrote it in a farmhouse, where he sat looking out the window of a second-story bedroom where his patient, a young girl, was gravely ill. He watched the barnyard below as he waited to find out whether the girl would live or die—he had done all he could for her. I just now remembered that the poem was published in a book called Spring and All in 1923, the year our house in Austin was built; Williams may have written it that year or the year before, in 1922, the year my mother was born.

The early days in the hospital were surreal, hallucinatory. For several days I would come out of sleep or medicated fog, thinking I was lying in a room at Sisters of Mercy in Buffalo, where my mother died two years ago. I knew that that was wrong but I couldn’t shake the belief. I must have sensed that I was close to death—it was as if I was now identifying with my mother in her hospital bed two years earlier.

And there were the nightly hallucinations. I’m not sure how many days this went on, but it was long enough so that I came to dread impending nightfall. It was as if sundown brought down a curtain or screen that stretched from wall to wall and floor to ceiling. The screen was filled with columns and columns of text. The text was illegible, as most text has been for me since about 1993, but I kept trying to read it. A word would almost come into focus, but as soon as I shifted my gaze toward it would slither and change and become completely indecipherable. This is pretty much what happens now when I try to read anything, but it was bizarre to have it going on in what I knew was a hallucination. I could never figure out what the text was supposed to be—I think it was probably some confused draft of the Web Content Accessibility Guidelines 2.0,, since the Working Group had met just two days before I went in to the hospital to approve the new draft we had created a week earlier at the face to face meeting in Brussels.

One day I came out of a very vivid hallucination laughing. I had just hallucinated an entire meeting, complete with a big conference table, laptops, cell phones, and quite a few people, about the launch of a (non-existent) new magazine called CD Technology or something like that.  In the hallucination I knew I was ill. People were handing me copy to look at. There was something special about the logo, some clever trick that impressed me. But whenever I turned to take what was being handed to me I would get dizzy and topple to my left. Then I came out of it, laughing at myself for having had such a ridiculously realistic and convincing hallucination about a stupid meeting, of all things!

I think it was that hallucinated meeting that helped me put a stop to the damned nightly text projections.  The text appeared again that night, but this time I was able to formulate not just the question What is this and what am I supposed to do with it? But an answer: The answer was that I didn’t have to do anything—whatever it was, it wasn’t a problem I had to solve. And with that recognition, the text went away and didn’t come back. It was a revelation, a way to work to a recognition that I had to (and have to) let go of a great many things. In my waking life outside the hospital, I keep discovering that I’m not there yet.

I don’t know when I got to the point where I could have visitors. I think it was pretty early on—maybe even the first or second day.  But from very early on my room was flooded with love. Friends from Bodychoir came quickly to my side, bringing with them their deep emotional responsiveness and their intense physicality. My brother, Peter, and my father, Myles, came from New York City and Buffalo, respectively.  Ledia and Mason put their long-planned road trip to California on indefinite hold and stayed to help take care of me. Former students called from various parts of the country. Friends and colleagues from the English Department, the Rhetoric Division, and other parts of the University and the accessibility community came to visit, or called if they couldn’t get there. People sent flowers and plants and audio books and music. Oscar brought me copies of the music he played at Bodychoir the night he learned I was sick. It was achingly beautiful, and Anna and I wept as we listened to it.  My friends from the Web Content Accessibility Guidelines Working Group sang a song for me on the conference call that week; Dave Macdonald (who wrote it to the tune of the Beatles’ “Come Together” and sang it the first time through) recorded it and sent me the CD. That had us laughing and crying at the same time, and Anna played it over and over again so that everyone who came to visit had a chance to hear it. There were so many people the hospital moved us into a larger room.  Friends coordinated with Anna to take turns spending the night on a cot near my bed in case I needed something like a urinal or some ice chips or a nurse in the middle of the night, so Anna could get some rest.

That love, too, kept me alive. It was like a whole different kind of infusion, filling the room, filling me and giving me the strength I needed in order to hold on to my intent to live. I understood this one afternoon while I was lying in bed, receiving a blood transfusion. I heard the pump going, put my hand on the tubing connecting the pump to the port in my PICC line. Suddenly I felt an overwhelming awareness of and gratitude to the thousands of people and animals who had made that moment possible for me—scientists, graduate students, patients, research animals, technicians, engineers, doctors, nurses, lab techs: all the people who over the years had contributed in some way to the development of the tools and techniques and methods for extracting blood, isolating specific components (plasma, platelets, etc.) that could be infused separately; developing the protocols for ensuring that the correct blood is delivered to the correct patient; and so on.  The line was throbbing with that sense of connectedness. And I still had the memory of how it had felt a little earlier in the day when someone from Bodychoir had sat by my bedside holding my hand. And all of a sudden I got it, got that all of it was necessary—the high tech sterility and rigor of Western medicine and science and the touchy-feely, New Age sensibility of our friends from Bodychoir, with their preference for homeopathic remedies and their intense empathy. Love couldn’t heal my leukemia by itself—but science couldn’t do it without love, either.  They needed each other. I needed both sides, and I was, for that moment at least, the bridge between the two worlds. So here’s to modern science, and here’s to New Age anti-science. And here’s to being in the here and now.

How important that connectedness is came home to me again last Monday, Labor Day, as I listened to Fresh Air on National Public Radio. Terry Gross’ guest that day was Nick Spitzer, host of a weekly radio program called American Routes, which originates in New Orleans, or did before Katrina hit. Spitzer, I learned that day, had been the official folklorist for the state of Louisiana; he was now an evacuee like so many others. He didn’t yet know whether either his home and his studio, with its archives and recordings of Louisiana music, were safe. (He still isn’t sure, but today he broadcast a wonderful program called “After the Storm” from the studios of KRVS Radio Acadie, the public radio station in Lafayette, where he’s taken up temporary residence.) He remarked during his conversation with Terry Gross that New Orleans was a unique and terribly complex set of family and neighborhood networks which, among other things, expressed themselves in the terrific cuisine and music for which New Orleans is so famous, and he talked about the risk that those complex and delicate networks might be damaged or destroyed in the aftermath of the flood as neighborhoods and families are evacuated to shelters in different cities. It seems that almost every news item in the week since that broadcast has made me aware of yet another delicate structure that’s part of a great city—a neighborhood bar, an opera company, dance and theater troupes. Those things can’t be reconstructed, just as hundred-year-old houses can’t be rebuilt to be 100 years old. They have to grow and change and settle, and it’s the connections among them that make the city and its culture. Some of those delicate structures are pretty resilient: today I found the Web site of WWOZ, New Orleans’ wonderful  community radio station (Anna and I came upon it as we drove around the city two years ago when we went for Calum Chisholm’s wedding), still streaming Zydeco over the Web and headlining itself “WWOZ in Exile.” Sometime last week I had heard on either CNN or NPR an anguished comment from the president of the board of WWOZ, who was stranded at the New Orleans Convention Center (or the Superdome) with his 81-year-old mother and his brother, who has Downs’ Syndrome (which perhaps explains why the old WWOZ Web site had a disability awareness page).  Each news story reminds me of how interconnected my own life is, and how life itself emerges from those connections.


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