Friday, Day 52, and so far a quiet day. Anna and I got to the second-floor Lab a few minutes past 6:30 and waited just a few minutes until I was called back. The blood draw was quick, efficient, and friendly, and when it was done I buttoned up my shirt, picked up my laptop bag and my fanny-pack and went back out to the Waiting Area where Anna was in fact waiting. We took Elevator A up to 10 and walked across to the ATC, near Elevator C; it’s a much easier walk this way since there’s far more human traffic on the lower floors and there are a lot more twists and turns through mazy corridors. We waited a while, but it wasn’t long before the assistant called me in to check my vital signs (blood pressure 125/74, temperature 97.something, pulse 98 (it’s been running high most of the time we’ve been here), weight 188.2). Then she told us we’d been assigned to Room 29—I think that’s the fourth time in a row for this one; they’re going to have to put my name on the door if this keeps up), so we trekked over there and got settled. Julie, the nurse, quickly got me plugged into my IV, then brought Anna a second chair like the one I’m sitting in, and poof! We’re all set. In a few seconds she brought the blood counts for today: overall white count 4.7, neutrophils 2.04, hemoglobin 13.1 (highest it’s been in a long
time!), platelets still holding at 70, where they’ve stayed all week. Liver and kidney things normal, magnesium a little low as always, thanks to the Tacrolimus. So far, so good. Now I’ll wait for the nice lady from Physical Therapy to come and get me and take me down to the gym, on the first floor near Elevator F, the same elevator we rode when I checked in to my hospital room on G11.
We didn’t come to the clinic yesterday. Instead, Anna administered my IV at home (the pump and IV bag fit in a large fanny-pack around my waist—no IV poles!), and while it was running we went down to Infusion Therapy on the 2d floor (Elevator C again) to have them perform the weekly ritual of changing the dressing on my CVC. Then we went back to our place at Rotary House and had an early lunch—Anna has made a wonderful pot roast with onions and carrots in the crockpot, and it was just waiting for us to eat it when we got home. Yum. I spent the rest of the afternoon catching up, more or less, on email I’d missed during what had turned out to be a surprisingly long hiatus. Among all the spam and the bureaucratic stuff that needs attention, or needed it two weeks ago, were some wonderful responses to my previous post, and more recent ones to the post that went out the other night. Anna came back from the gym and we went out to dinner, this time to an inexpensive Thai place called Sawadee (which means “Hello!” in Thai). I had a cup of crabmeat soup followed by a thick yellow curry with chicken and carrots—big chunks of each; Anna had hot-and-sour soup and a Thai beef salad that sounded really good. We fell into a pleasant conversation with the couple at the next table. The man had been an attorney but doesn’t practice; he said his Multiple Sclerosis had interfered with this short term memory as well as depriving him of the use of his right hand. His wife trains dogs for the big dog shows (including, I gather, the Westminster). But their favorite activities are eating well and traveling (hmmmm, sounds familiar!), so we exchanged restaurant recommendations and phone numbers and talked about getting together for a meal somewhere. I vote for Barcelona, but I’m easy… That was a nice note to end the day on, and we were both feeling good when we went home—something had opened up in each of us, not just through that encounter but through our conversations and meditations over the past few days. Then when we got home we opened two letters. One was from Elizabeth Gibson, a usability specialist for AT&T who’s based in San Antonio but drives up to Austin for the monthly TechLunch lunches—gatherings of people from government, industry, education, and various disability groups who have an informal meeting to share news and information about assistive technologies and various accessibility issues. Elizabeth sent a truly mysterious Wallace Stevens poem, one I don’t even remember having read before; I’ll need to re-read and ponder. And then from Tom Roudebush, a recording engineer and photographer we’ve met through BodyChoir, came a card bearing what Anna says is a stunning photo of her and me at last April’s BodyChoir retreat. She says we look ecstatic in the photo—apparently we’re standing in front of the West House at Dancing Waters, leaning into each other, my arm around her, grinning to beat the band. It was wonderful to be reminded of that—it was such a beautiful, happy occasion, and, though we didn’t know it at the time, just a few weeks before the recurrence of my AML, the diagnosis that launched us into the current stage of this journey. Tom’s envelope also included a CD of songs sung around the campfires at the Kerrville Folk Festival several years ago—some great tunes, all the more powerful because they so strongly evoked memories of going back into the woods, the campgrounds, after the main show in the big amphitheatre had shut down, and going from place to place, campfire to campfire, to join the circles of listeners surrounding the circles of players who’ve been coming to Kerrville for years and years to share their new work with their friends and play the old ones for memories and laughs. I could feel the cool air, small the leaves and sticks and earth underfoot, hear the laughter and the singing, the joy of listening to terrific songs and singers until the wee small hours of the morning; it was lovely. One song that really opened me up was about a guy sitting in his regular place at this regular bar, nursing his beer, watching a young couple, not regulars here at all, who’d come in with a carefully wrapped pair of crystal goblets and a bottle of champagne (or maybe they bought the champagne at the bar; I might have missed that part). They poured the champagne, and drank, and held hands, and looked into each other’s eyes, oblivious that the whole bar is watching them, that everyone, including especially the narrator, is wishing his partner would still look at him
that way. And then the narrator realizes that the whole bar is watching him now; something’s going on behind his back. He feels a hand on his arm and turns, and there’s his wife looking at him the way the young woman is looking at the young man, and that’s it. It made me cry—with gratitude and joy, because Anna looks at me that way so often and I’m so lucky to have her love and give her mine.
I’ve never doubted for a moment that her love, and yours, is a healing force, and that love is also what expresses itself in a very different form through all the medical procedures and protocols and rituals and equipment. Yesterday Larkin (who visited with Leonard a couple of weeks ago) forwarded me an essay from Tuesday’s New York Times
that points in some very interesting directions about how that healing works. The article, “Friends for Life” by Daniel Goleman, takes its starting point from research demonstrating better recovery rates for patients who are surrounded by loved ones, then describes a mechanism called “mirror neurons,” cells distributed throughout the different centers of the brain, that actually allow us to take on another person’s attitudes and feelings, so that if you come into my apartment cheerful, confident that you see me doing well, my mirror neurons will start moving me toward sharing your attitudes and beliefs. As Goleman writes, mirror neurons “track the emotional flow, movement and even intentions of the person we are with, and replicate this sensed state in our own brain by stirring in our brain the same areas active in the other person. “ One implication of this work is that medicine needs to start addressing not just the patient, but the patient and his or her beloveds because they are not merely discrete individuals; they are a pair,
a couple, a family—a community. This must be what makes it so powerful when visitors come—including not just the scheduled visits like my dad’s, but also unexpected ones, of which there have been two since I last wrote. One of the visitors was Barbara Monroe, who came into the CWRL 15 or so years ago as a grad student needing summer employment and willing to give anything a try, then stayed for several years; she now teaches at Washington State in Pullman, where she does superb work with Native American tribes in the area. The other was Shawn Henry, a friend and colleague from the World Wide Web Consortium’s Web Accessibility Initiative, whom I’ve seen at conferences (including the one in Spain last November that marked the end of my chemo treatments and wrote finis
to what turned out to be just a chapter in the leukemia saga. No man is an island, entire unto himself. No, nor woman.
It can work at a distance, too. I think this is what the 130 Letters have taught me—people using their creativity to send themselves here to us in emblematic form. A CD compilation from our niece Sarah, her husband John (another Buffalo boy!), and their baby Sophie, who’s closing in on being 10 months old. A wonderful letter from Rino Pizzi together with a CD containing one of his favorite pieces of music, the adagio
from a late Beethoven string quartet, a piece so slow, so controlled, so beautiful that it’s almost unbearable—until suddenly it brightens, picks up, advances a while before returning to the slower, more wrenching pace. From Gail, another friend from BodyChoir, a nice note with a beautiful, beautiful poem by Naomi Shihab Nye about kindness. Bruce Shotkin, BodyChoir dancer who, at 70+, is committed to the goal of living to be 150 (like Ray Kurzweil, creator of computers that can scan printed text and read it aloud for people who are blind and others), sent a moving letter, as did other BodyChoir friends Alejandra Diaz-Beria and John Van Strien. There’s a CD of the poet W.H. Auden reading his work, sent by Tonya Browning and Mairi Reyer, who also sent a lovely card that appeared in a separate envelope. Tony Hilfer, a longtime colleague in the English Department (he came to Austin years before I did) and his wife, Jane, sent Christopher Smart’s mad, wonderful poem about his cat, Geoffrey. Mark Van Gelder, a friend from BodyChoir who has been wrestling with diabetes since he was a young boy, sent the powerful poem he’d read at our celebration back in August: “Hoping for a Cure” is about the discovery that the cure, the healing, isn’t somewhere off in the distant future but here and now, at hand, in the body and breath. Sabrina Barton, friend, feminist film theorist, and former English Department colleague, wrote from Berkeley to wish us well and enclosed a gorgeous James Wright poem called “Blessing,” about watching a young horse in the pasture; the quiet explosion of its ending took my breath away. Anne Forrest, a former environmental economist who for several years made powerful and deeply moving presentations to my accessibility students about the effects of the brain injury she suffered in an auto accident almost 10 years ago, sent me a very funny invitation to “Camp Disability,” including a t-shirt with a built-in excuse on the back: “Too disabled to attend!” The package also included a book about the delights of napping, something I vow to pursue—in fact, I tried it this afternoon! From Gene Rodgers of the Coalition for Texans with Disabilities comes a collection of inspirational quotations, and from Randolph Bias, a colleague from the School of Information who works in the field of usability, there’s a hymn modeled on one in the Presbyterian hymnal but substituting new words. Olin Bjork, a graduate student who’s worked with me in the CWRL and beyond, sends a letter about his personal commitment to accessibility and the efforts he’s made on an award-winning project about Milton’s Paradise Lost.
From Judy Sokolow’s grandson Jeremy Ollagnon, now living in Moscow with his parents and three sisters, came a card that made me laugh for a long time: it shows a squirrel who says, “When I heard that you are what you eat I realized I was nuts.” Clare Heinzelman, with whom I’ve happily shared a birthday for what will soon be 21 years, sent a sweet card; this year’s will be a big one for both of us! Anna’s mom, Marge Rogers, also sent a nice card from her new home outside Albany, NY, where she moved last year to be close to Patti and her family; another card came from Marsha, Patti’s husband’s ex-sister-in-law and her husband Rich, whose wedding reception we attended in Maryland a couple years ago. Another card came from my dad’s friend Ruth, who is now undergoing radiation treatments of her own; we wish her well, too, of course. Sheila Armitage, a friend and fellow-consultant of both Anna and my accessibility friend Kathy Wahlbin, sent a note with a wonderfully funny story about a woman she’d seen on a recent trip to Paris—smartly and professionally dressed in an elegant gray suit with what Sheila called a pencil skirt, meaning I assume that it drops in a straight, tight line from the hips, climbing onto her motor scooter and zipping through the Paris traffic; I imagine her zooming around the Place de la Bastille, headed for the rue St. Antoine, snaking her way among the Peugeots and Renaults. David Rose of BodyChoir and the Living Tarot troupe sends an astonishing Tarot reading, my first ever, with copies of the three cards he drew for me: the Fool, the Lovers, and the Chariot. And finally, Marc Holzbach of Zebra Imaging and his partner Dana Fries-Hanson of the Austin Museum of Art sent a fascinating and beautiful piece that’s been in their personal collection for more than 15 years—Stardust
, a sound-sculpture by a New England artist who, in his 80s and suffering from Alzheimer’s, no longer produces new work. Stardust
is a round, rough-textured object which is made of metal but feels like a stone; shaken gently, it makes a gentle, ethereal sound like music of the spheres faintly heard; the sounds get louder and take on a different quality when the piece is shaken vigorously, and there’s a resonant chime if it’s struck with a harder object.
So the mirror neurons work both ways. I send a post about the difficulties of waiting, waiting, and within hours the voices come back: we’re here with you, we’re waiting too. How astonishing. How beautiful. “What sap. Went through that little thread/ to make the cherry red!”