August 8, 2000

I begin this letter on the waiting side of dread and hope. By the time I finish it we'll have crossed through the news of last Friday's MRI. You're welcome to jump ahead. Wish I could. Dread has the upper hand on my guts.

While waiting, the interim news:

We did go to Denver for General Convention and the Witness events. It was a far flyin' piece from familiar medical support, but once home, I was glad we did it. So many folks startled with joy to lay eyes on Jeanie. Momentously, at a board meeting there, her torch officially was passed. Julie Wortman is now editor/publisher of the Witness, as Jeanie intuitively fore-maneuvered long ago. The magazine reception was not designed to honor her, but one of the honorees, a good bishop, did - calling Jeanie into the light of a standing ovation.

The camping vacation with Peace Community families went wondrously well. We kept (and furthered) the tradition of swimming the lake lengthwise by skinny dipped moonlight, though Jeanie accompanied in a rowboat. The kids put on a talent show, with our girls reprising numbers from Music Man. On the last day, however, Jeanie seizured, and frighteningly so. Her right side was left slack and useless, looking for all the world like a stroke. I freaked. We were back-road miles from even a small hospital, but a neurologist by pay phone reassured: this was not uncommon, simply Todd's Paralysis - a typical short-term consequence to which we'd just never been alerted. She revived quickly, though it recurred with subsequent seizures, shifting now to the other side.

A friend of ours, actually knowledgeable and experienced in such things, was recently shocked to understand that these are full-blown Grand Mall seizures. I'll spare the description, but they can last five minutes or more, wrack her body and leave her exhausted. Recovery can take days. The one at Camp Chick was the first of five in little over a week. A new anti-seizure med has been added.

Coincident some drop in function: disorientation to time and occasionally place; more sentences unfinished; wires crossed, even comically so; a couple days of low initiative and motor loss (these seem to accentuate when I'm out of town). No pain, thanks be.

But you know what? Still, thanks be the more, quick of smile; bright in her eye and presently perceptive; full of responsive love; funny and sweet as ever. Still gets overwhelmed with emotion, tearing up when her eastcoast nephew and niece depart from their visit or when young people sing the offertory in church, or as I read her certain parts of this letter. Can you imagine? A constant amazement to undercut the darkest dread.

So then. Is the change in state related to new medication, with which it correlates? Or with breakthrough seizures, likewise? Does it stem from new tumor growth so foreshadowed in the May pictures? Does it stem from shunt blockage? Is radiation catching up with us? Or simply the cumulative effect of repeated interventions on her poor skull? Answers to some of these hang in the MRI balance. If we can rule out shunt and tumor, meds at least might be correctable. The sunny Queen-of-bounce-back might yet again.

We wait.

Meanwhile, I've been mindful that I don't get much solitude these days. When I'm home, even working, I stay close to Jeanie - round the clock in earshot. We ask so much of friends and family to cover for me when I'm on the road, that asking for more so I could get a sabbath at the cabin seems too much. (I do know this is actually wrong, but feel we are straining people and who knows what's to come?). Anyway, several weeks back at the cabin as I was headed off to work briefly on some paths, Jeanie followed me into the clearing with a question that never fully formed. At the far end I turned her around saying I'd watch her back to the cabin where her sister was waiting. As she turned, I said what suddenly dawned on me, "Hey, you never get any solitude either, do you?" "No," she replied wistfully over her shoulder, "I sure don't."

Then again. Last week the four of us were up to the cabin. Late afternoon, we stood at the window watching Lucy dance in a downpour, soaking it all in through her sundress, when suddenly lit, the sky changed. We hustled out to witness a double rainbow, noticing for the first time that the two mirror one another, reversing the order of colors. We stood agog and posed for each other framed beneath the covenant with all creation.

August 12, 2000

I'm slow to finish this because our computer suffers a debilitating bug, viral or otherwise. I can't know when I'll send it along.

The news, however, is good. The shunt is working (ventricles smaller) and there is no visible tumor growth. Essentially unchanged since May. (Actually one interpretation says there is some linear enhancement, but no thickening, so still suspicious but indeterminate - this from folks I thought would have been wowed by the lengthening work of the chicken virus).

We meet Monday with the neurologist who remains reluctant about a med change. We trust her, but we'll see what can be tried. Last night, Jeanie rousing repeatedly, got me up at 4am. The moon was down, but I noticed a subtle shimmering flash through the window. Northern lights! Out back the clearing was covered with this shifting luminous dome. Then, light upon light, a falling star. And another. And again with a long orange tail. Unbeknownst, we'd been waked to the Perseid meteor shower. Through wisps of light trailing up, they fell. We claimed it all for healing aura, to be soaked in though Jeanie's nightgown. Down and up they blessed. Dread scattered to the horizon or forgotten. A different hand, thanks be, upon my guts.

Til the last morning star shall sing,

bill

PS. August 18, 2000: Our lives have been dominated by minor crises, medical and otherwise. At least one a day. Jeanie's port came out over the course of a week and was finally removed. She gets another placed at 6am tomorrow. (In the mean time, she's jumped today at the interim opportunity to go swimming - something she loves and hasn't done for over a year). Her shunt is also functionally in question, so we are watching for behavior signs of hydrocephalus again. The neurologist wants to wait a bit on any med change, so multiple factors play.

And meanwhile our computer's poor brain is crashed or fried. We lost our addressbook. So this comes from a reconstructed list or forwarded from a mutual friend. Please send a note to make sure you are in our "book." Love and prayers day by day.