October 22, 2000

Dear Friends:

So, a couple weeks back, across the restaurant table, eggs and hashbrowns between us, Jeanie suddenly sets down the front page and asks, "Should we go to the Middle East? to Palestine?" I confess I laughed out loud. Partly for the matter-of-fact and slightly absurd logistics implied. Partly for her over-the-top bold and lucid nonviolent instinct. But above all with joy for her sense of justice equalled by her own sense of freedom, power and self-possession to affect it. This is the Jeanie Wylie we love and a measure of her health.

Another: she's been traveling with me. To New Haven, Cambridge, Elkhart/South Bend. More planned on the horizon. On two of those road trips she's had seizures. One at our friend, Chuck Matthei's place in Voluntown. He lives on the old CNVA farm and makes his land reform speaking and organizing forays from there. Chuck has cancer as well. In his throat. Here is a "voice," rare and singular, a voice rethinking ownership and equity, a voice like Peter Maurin's or Vinoba Bhave's - a voice now under attack. I think likewise of Jeanie's poor head, her mind so rich in editorial judgement beneath the same assault.

These road seizures track one saga of recent months. We did wean Jeanie off the anti-seizure med that was damping her down and even issuing in mild hallucinations. She is, of course, effectively a permanent epileptic, subject to these things for the duration, and clearly needs something more than the primary baseline medication. What's astonishing about ourselves in retrospect is that while we immediately sought out alternatives to radiation and chemo, when it came to seizures we've just been swallowing the pharmaceutical chemicals hand over fist. Our recent hope had been to use some alternatives (obvious things like quitting coffee/caffine and additional ones like amino acid, vitamin and mineral supplements) in place of the second scripted medication. But this string of continuing seizures has forced us into the good neurologist's hand and onto a second med, with consequences noticeable. More lost thoughts and dangling sentences. It seems like were on the horns of this unhappy balance between seizures and fogginess. It's so maddening to have her in there bright and thoughtful, but then damp and doze her down.

The other saga concerns the delivery of the virus. If you're among those who got the August 18 update you know we were just then on the brink of putting in a new port. (If you're not the reason is technological and you can catch up under "contact us" at www.thewitness.org) It turned out we could not as that left vein is now completely scarred and blocked. This is actually less severe than I first imagined upon seeing that abrupt dead-end on the venogram. The body copes, simply rerouting the blood through smaller capillaries. Trying the main vein on the other side was complicated by the shunt line which runs close by there, so we settled briefly for a PIC line (similar to a port, but even higher maintenance) in her arm. This device Jeanie subsequently pulled out as well, be it in a moment of erstwhile confusion or shrewd lucidity. It seemed we were left with but one intravenous option: to risk that right vein connection. Then, pressed with some questions, the doctor mentioned that should that one become scarred and blocked, pressure would back up into her head. This seemed like a bad idea on the face of it, so we pulled the plug on that procedure at the last minute. Now we're relying on a nebulizer (this glorified vaporizer) to deliver the virus. It's admittedly less efficient and we've had more bumps getting unscripted parts, but that's the tact for now.

I get nervous about messing with the viral delivery since the approach has been serving us so well. (When we showed the last pictures to the original surgeon at Henry Ford, he and colleagues averred that they "did not recommend a change in therapy at this time." That, I suppose, is about as close to WOW as were going to get from medicos for any non-AMA-approved treatment option.) It does seem to be working. We're two plus years into an illness which offers an average life expectancy of 6 months. Jeanie is taking road trips with me, rendering fall trees in pastels, and being opinionated or feisty. I get overcome with joy and gratitude, every day a gift free and clear.

This day happens to be glorious in a string of such. Yesterday friends were here at the cabin for brunch, cidering, pumpkin picking, and late evening tabletalk over chili and beer. This afternoon the aspen leaves, green and yellow, flicker and quake against the crisp cloudless blue. When I fix on their shimmering, my body almost hums in tune.

Everyone asks about the girls. Thriving yet. Lydia blooms into high school, putting herself out there in auditions and class elections, making her mark in Speech with a presentation on Nike sweatshops, and finding simpatico friends in the Diakonia club (where they passed around an informational flyer commending both Ched Myers and the Witness magazine!). Her boyfriend (yes) plays Charlie Brown to her Peppermint Patty in the current Paperbag Theater production of "Snoopy." They had a weeklong falling out during the Olympics when he discovered that she didn't particularly support the USA. (I overheard her explaining the Gulf War to him on the phone!). Anyway, she's fine and then some. She does breathe a sigh when I take Jeanie with me on a travel. No matter who is on hand to offer care, our moms or community friends, Lydia feels like she's really the one in charge when I go away. And point of fact, in a crisis she would be the one with the cool head who knows the drill. It's truly a stress.

Lucy meanwhile is enjoying being the only Wylie-Kellermann at her school, stepping out from the shadows. Heir apparent to point guard on the basketball team and sporting a safety patrol belt, she's oddly intent on getting "at least one perfect attendance certificate" - she actually declined to skip for a midday Snoopy performance (she plays Sally) in order to hold her fall record in tact.

A few weeks back she had a wonderful dream: In front of our house, but not our house. She enters by a deep tunnel on hands and knees. At the lowest point she notices something shiny on the ground. It turns out to be a Canadian dime which she pockets. In the house with friends (Mom and Dad are kind of there too) it comes clear they are searching for Valdemort or he for them. (For non-Harry-Potter-literates: Valdemort, he-who-must-not-be-named, is essentially the power of death). On a big oversized bed they throw back the covers, but nothing is there. In relief, the other kids depart. But alone in the room, it is suddenly apparent that he is there! Her ankle is grabbed and she's dragged screaming into a dark closet and locked in. Lydia responds to her screams and rushes in. The bright dime, it turns out, is the key to the door. She is released and safe. Then the kids say, "Let's play it again!" They throw back the covers and leave. Her ankle is grabbed. To the closed and out again. Several times over. (It's less scary each time).

This is a wondrous gift dream for a ten-year old I do believe. Me? My dreams come in fitful snips I neglect to put down. Presumably, my psyche's become convinced I'm not paying attention.

While I was writing Lucy's dream, Jeanie had a seizure in the clearing behind the cabin, her art work with a friend, going unfinished. Such is the rhythm of our life. Somehow less scary each time. Always the fitful summons to prayer. And there the perpetual mix of joy, grief and gratitude.

Til those leaves heal the nations,

bill