Saturday, October 08, 2005

A walk with Dillon

It’s a beautiful morning. It was in the mid-50s when we woke up, and by now it’s in the low- or mid-70s. Sun’s out, and it’s very bright; there’s a light breeze, and the air smells good. Dillon and I just got back from a short walk. This is the third morning in a row we’ve done this: yesterday and Thursday we went around the block, first walking east to Duval, then turning south for a block, then west onto E. 34th, north onto Tom Green, and east again onto E. 35th Street and up to the house in the middle of the block. Takes nine or ten minutes. It was so gorgeous out this morning that I wanted to do something a little different, extend the walk a little. So instead of turning onto E. 34th St. I told Dillon to keep going; we crossed 34th and went down to 32d. Each block is so different. From 34th to 33d is a long block. At the southwest corner of 34th and Duval there are hedges growing out over the edge of the sidewalk just as you come up to the top of the curb cut, where the nubbly part of the wheelchair ramp begins; Dillon stops and waits for me to find the branches with my outer arm, then moves forward. In a minute he stops again to let me find the raised part of the sidewalk with my foot, and does so again a few steps further on. A few yards later we have to stop for an overhead branch hanging directly in my path; there are others just to the east of that one, so Dillon waits for me to tell him what to do. I duck low and tell him to go forward, and we continue on to the end of the block. It smells like fall. We pause at the corner of 33d so I can listen for traffic; there isn’t any, so we cross. This next block has a completely different climate. There are plantings on either side of the sidewalk—trees and bushes and ferns, some at knee- or thigh-level, others at eye-level, each a decision-point for Dillon and for me. He sort of goes on tiptoe through this part. We haven’t walked this way for a long time, and he isn’t sure I’ll remember, so he takes it slowly, not quite trusting me to dance with him as easily as I used to. We come out the other side, and in a few steps we’re at the downcurb into the alley that bisects the block running east and west. Unlike the alley that runs along the east side of our house, this one is well paved, with real curbs on either side (so much for people in wheelchairs), but it’s still an alley as far as I know. It’s not as interesting on the other side—just a straight shot to the corner past ordinary lawns. There’s one small patch of sidewalk where someone has put in a flagstone walkway; its slightly uneven, so Dillon stops to remind me. The next block isn’t just a different climate again, it’s a different world. The entire block from 33d down to 32d is occupied by one huge house on a huge lot, with a brick-and-ironwork wall/fence abutting the sidewalk. And it’s on a small hill. There’s no curb cut (again) on the southwest corner, and there are two more steps going up to the sidewalk after you step up on the curb; the first one’s at a slightly awkward distance from the corner, about a step and a half; even knowing it’s there, and even with Dillon leading the way, it’s awkward (the other side of the street is even worse—it’s a good deal hillier, and there’s no sidewalk at all). Behind the big fence are two dogs that set up a frenzied barking as Dillon comes up the stairs and we stop for him to let me feel the branches coming out over the sidewalk. One of the dogs sounds pretty big and has a big bark and a low growl; the other one sounds smaller, with a higher-pitched bark and more frantic running back and forth. Both of them follow us all the way past the house, until they come to the far corner of their yard. I had been expecting them so wasn’t as upset or annoyed as I sometimes get when they surprise me on the way to or from campus. But of course Dillon’s on alert, trying to keep an eye on them and remember that he’s supposed to be guiding me, too. We go past the wheelchair ramp that leads to the bus stop for the #7 southbound, and get to the corner. There’s no real street here, though maybe there was once; it’s a sort of driveway/parking area. Capital Metro put in a wheelchair ramp here, too, a year and a half or two years ago. I check my watch; it’s been about 10 minutes since we left the house, and though I’m feeling good my breath is coming shorter and I figure this will make a good place to turn around and go home so I don’t run out of steam on the way back. So that’s what we do.

I love that walk. I’ve done it hundreds of times in the nearly seven years we’ve lived in this house. It’s my route to and from campus—down Duval to San Jacinto, then down San Jacinto to E. 24th Street and across to my office in the FA C. It’s a terrific walk: every block is different, with different smells, different textures underfoot, different patches of shade and light, different sounds. Some are lined with small private houses (some of which are occupied by students); there’s a big apartment complex or two, a pizza joint where students often sit drinking beer on the porch in the late afternoons as I head for home, and there’s a Laundromat, a Subway franchise, and a bar/burger joint, the Posse East, that’s been there forever (There used to be a Posse West, too, around 24th and Rio Grande, but that’s been gone for years). And that’s just the stuff north of campus.

Not only is each block different, but each trip is different too. You can’t step in the same river twice, as the saying goes, and evidently you can’t quite walk on the same sidewalk twice, either. Because Dillon is so beautifully trained to stop or at least slow down for changes in elevation, overhanging branches, etc.—anything that might trip me up-- a shift of just a few inches to right or left of where we walked last time can make a difference in what he encounters—a bit of sidewalk angling up over a tree root, a branch coming down, a gate open in a fence.

It’s been a long, long time since we did that walk, or even that part of it. It felt wonderful, like a rediscovery of my neighborhood and a re-expansion of my world. Dillon seemed happy and proud. He loves doing guideword, and I haven’t given him nearly enough of it over the past three months, and even before that, because Anna had been dropping me off at the office a lot after we’d gone out for breakfast. So there was a lilt in Dillon’s step, too, and a definite wag in the tail when we got back to the house and I told him what a great dog he was.

Writing this, I’m reminded of how liberated and excited I was when I first went out to San Rafael back in 1998 (Tuesday will be the seventh anniversary of the day I left for Guide Dogs, I realize!) to get the dog who turned out to be Dillon. On my first walks with Dillon I was startled to recognize how much I had slowed down in the preceding months and years, as I wrote in the Dillon Chronicles. Today’s walk prompts me to think—not for the first time—how I’ve allowed my world to shrink in the months since I became ill.

For the 28 days I spent at St. David’s this past June and July, the world shrank for me to the compass of my room, with occasional expansions out into the corridors for short “exercise” walks or rides on a gurney down to the radiology floor for x-rays and CT scans and ultrasound. The same thing had happened in Buffalo two years earlier, in the hospital room where my mother died. There was nothing but that room. And that was somehow comforting—I couldn’t have handled a bigger world on either occasion. And in recent months, I guess I haven’t been ready for a world much larger than the house and the distance between here and the Cancer Center (about a mile to the west) and St. David’s (about the same distance to the east). There have been a few forays beyond these spaces—a drive out FM 222 one evening to have dinner at Siena, on the verge of the Hill country; a few trips to Bodychoir and Artz Rib House, both in South Austin; and a few others. But not many. Partly it was the weather—it’s so damn hot here in the summer (record-breakingly so in the last week or ten days of September, which is technically not summer at all) that the idea of going out into it was just less appealing than ever. But it wasn’t just the heat.

It’s the fear, the fear that I talked about the other day. Fear of not being able to handle it, fear of becoming exhausted and not being able to get to my bed and lie down when I need or want to. Fear of running into someone who has a cold or some other relatively innocuous but infectious thing at a moment when my immune system is seriously compromised by the chemo; fear of having to go back to the hospital. And fear of finding the hidden places in my life, the lurking questions. What are my priorities now? Which of the many things I did before I got sick do I still want to do? Which of them can I do? What if I don’t want to do them? What if there’s some part of me that likes this slowed-down life? What if there’s some part of me that likes being sick, that hides behind it, uses it for a shield?

Well, no. There are many things that matter, things I want badly to do. I want to help bring the Web Content Accessibility Guidelines to publication, and I want to stay with the project after that to do what I can in the effort to get them adopted as the international standard they’re designed to be. I want to grow the Accessibility Institute into larger, more active research group that’s a major force in the drive toward making online information accessible to everyone. I want to dance with my friends at Bodychoir, and I want to do another piece with Allison Orr and Yacov Sharir, continuing and expanding the work we did with Sextet two years ago. I want to travel with Anna, not just to Spain for the Accessibility + Usability conference where I’m due to speak next month, but to France and Italy and Greece and Mexico. I want to go to Cape Cod and stay there for a whole summer, alternating between writing and going to the beach. And I want to sit here, in my pleasant study in my comfortable house, listening to the birds outside and to Anna putting together the music for tomorrow’s Bodychoir. I want it all, and maybe that’s what I’m afraid of, since of course I can’t have it all. I’m afraid of becoming complicit in the shrinking of my world, to protect myself from the sadness of knowing that I can’t have everything I can imagine wanting. This of course isn’t about leukemia, though maybe the leukemia and the process of treating it makes it more real than I’ve allowed it to be before. It’s about being human and about being alive, and about loving it and not wanting to let it go, about being afraid that I won’t know how to take responsibility for my own life and live it as fully as I can, however long or short it may be.

Son of a bitch. But for today I’ll take what I’ve got—a beautiful day, the kind we’re supposed to get in the fall. No trips to the hospital today (went in for yet another transfusion yesterday, the second in three days, but that was yesterday), and only a quick trip to the Cancer Center for a CBC this morning, and that’s done with: hemoglobin up (to 10.7) and platelets up too (to 44—they were down to a mere 4 yesterday, dangerously low, before they gave me two units of platelets along with a unit of red cells; never mind that I had another allergic reaction). It’s lunch time. We’ve got friends coming for dinner tonight, and we’ve got dinner plans for tomorrow and Monday, too. I’m full.


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