Fistful of Beauty
October 7, 2001 (our goddaughter, Theresa's birthday)
Seems like every time Jeanie comes in the cabin door this weekend she's bearing another fall bouquet of weeds and berries and pine. They blossom in jars and coffee cups all over the place, presenting themselves in unexpected corners. Chickeree, high bush cranberries, scotch and cedar, burning bush. When we go for a walk I keep calling her to keep up as the harvest of beauty goes on. She grabs it by the fistful.
Jeanie Wylie is doing terrific on all fronts, not the least her eye for beauty.
She did have a small seizure night before last. That would be unremarkable, except that it was the first in three and a half months! Prior, I'd been despairing. If we had plotted her seizures and our counter efforts on a graph covering the last year and half, you'd have to conclude that no matter what we did she was going to suffer "an event" every ten to fourteen days. Me, I'm thinking let's take her off the meds. If she going to seize, let her be clear-headed betwixt. So I'd been resisting the neurologist's urging to add just a tweek of yet a third medication. We finally acceded following a really big one in July. And they stopped. Four weeks in, however, I was still debating the wisdom since she seemed clouded further, nodding off at the dinner table. Enter our friend Karl Meyer (not the famous Catholic Worker), who every Wednesday brings us brown rice or organic pasta dinners (heavy with garlic and kale and his home grown urban vegetables). He's incredibly well-read in nutrition and alternative health matters. By and large it's his regime of advice we follow for Jeanie's non-scripted supplements. He's also an amazing fiddle player and was president of his class at Columbia, but turned up one course short of graduating. I say too much. We are blessed to know such a bunch of really good human beings.
Anyway, he takes a look at her bloodwork and notices an elevated ammonia level (a consequence of anti-seizure meds and hallucinogenic at toxic levels). On the basis of a study, he suggests an amino acid you only get in red meat. Hence once we don't get. In fact its called L-carnatine. To make this long story short again, it seems to work! Quicker than anyone could expect, Jeanie is tracking, wakes knowing the day and its plan, remembers events the week prior, participates more fully in conversation, initiates projects, recalls names and lyrics when I'm stumped, and proofreads this letter for grammar. She still disorganizes piles and cooks strange meals, but as a friend says of the latter, she's always done that. Granted, the improvements could also be the lack of being in perpetual recovery from seizures, or it could be prayer, cumulative and exponential. Whatever it is, we're sticking with the third med and with the carnatine. Of course we're sticking with the prayers, too.
Meanwhile, midsummer, the neurologist read her last MRI, noted that the picture has been essentially unchanged for over a year, and said, "Don't stop what you are doing. We'll check it again in a year." A year? This is a glioblastoma! "OK," he says, "six months." This is to indicate that things are stable and we are staying our courses.
Last week, Jeanie joined me for a seminary recruiting trip. We showed her documentary, Poletown Lives!, now twenty years old, to a film class at the Mennonite seminary and Jeanie was on hand, a little road weary, but answering questions with me. That was a joy. And I know it will be good news to many of you. We've a couple more trips planned this fall: to Greensboro and D.C. (And to think our last DC trip was abruptly put off when she seized in the isle of the plane, while boarding).
Many of you ask about the girls, so I'll report that Lydia, at fifteen, has completed driver's training and is quite competent even on Detroit freeways at rush hour. She has a small part in her school play as well as continuing roles with Paperbag. She adapted a song from Good Man, Charlie Brown for Day House's 25th anniversary ("Happiness is...welcoming strangers...cleaning a soup pot...getting arrested for the very first time." Like that.) We're trying to arrange a late fall trip to visit her godfather Pio Celestino, at Rio Refugio in Harlingen, TX. It will be good for her budding Spanish, as will new neighbors, a Nicaraguan family, in the downstairs flat. She's had the same boyfriend, Brian, for over a year. Last week was homecoming dance with long dresses and rose corsages. They continue to weather, or deftly skirt, pointed conversations about nationalism and warmaking.
Lucy, who won a "Page Award" last spring and was genuinely speechless when they opened "the envelope please" and read her name, has temporarily bowed out of theater for the fall, opting instead for jazz dance, gymnastics, and basketball. I'm guessing she'll be back in the proscenium when Paperbag plans a musical of Pippi Longstocking in the spring. Following the days of Trade Tower crisis, Lucy had a dream she was bit in the center of her forehead by a giant bee. She grabbed and held it, larger than her hand, and it spoke: "I hurt you. You can't hurt me. I'm too big." but she squeezed and it died. Fear?
I was in the air to Chicago when the attack hit. I saw the first smoke plume on a Midway TV. By the time I trained downtown, the second had struck and the loop began to empty out til it looked like a Sunday morning calm. A friend loaned me a car to drive home. When I walked in the door, Lucy broke into tears. We circled as a family to pray and cry. It echoed our experience of the last three years.
This is to say, I'm mindful that we offer personal good news in a dark time. As I prepare to send this the bombing begins. We are warned to expect it to be long and protracted. Perpetual war, war without end, as it were. I fear the open-ended blank-check war more than I fear the terrorism itself. Trust us, they say. These are the same powers (the CIA through Pakistan) that trained and financed bin Laden and friends when their terror was aimed at the Soviets. These are the same powers who have pioneered violence against civilians: making and using of weapons of mass destruction, anti-personnel weaponry, and the terrors of low intensity war. From Dresden and Hiroshima to Vietnam to the Nicaraguan contra-war and the infrastructure bombing (with a decade of sanctions) against Iraq. We've already stopped noticing how the bombing of Iraq continues daily. How long before the anti-terrorist strikes cease to be news but the routine work of America's global economy? Cruise missile attacks targeting ideological commitments. Anywhere and anytime they say or want.
Miracles walk! So says Jeanie. God is in this history and our lives. So we are ruled neither by fear nor despair. We rejoice and hope and persevere. And grab beauty by the fistful.
Til justice be the foundation of peace and death shall be no more,