July 22, 1999
A radiation therapy warfare prayer
In the grove, a drizzle
Later, in a hall outside
Lord of the Universe,
Each of your epistles is carefully placed on the 'bulletin board' in the middle of our Jubilee dining room, a double wall, metal fireplace that provides a central location for the most important communications that come through the community ... All of this is to say that we are ... .cheered by the good reports, led to prayer on your behalf when the reports are not so good--and that we love you. I wonder if any couple has ever been followed by so great a group of well-wishers and loving supporters! I don't think I have ever known of such a thing. (from Georgia)
By way of preface, let me say that if these letters come to seem self-indulgent, we'll trust our friends to stop thanking or encouraging us and let us frankly know. There are to be sure tacit dangers in over-narrating our struggle, but in addition to summoning prayer, it has simply been one of the ways I process and cope with it all.
What to say about where we are? That Jeanie Wylie is dying? That Jeanie Wylie is fighting for her life? That Jeanie Wylie is free to die? That Jeanie Wylie is full of life and hope? All, in one respect or another, are true.
We have begun radiation. It was the hardest decision of this entire journey. There are permanent consequences of brain radiation, but these are a year or more off and the doctors of conventional medicine regard that as a moot point in our situation. We had help from a "clearness committee" of gracious friends, and monkey wrenches from a radiologist who ought to appear before an AMA tribunal. There were 180 degree reversals, more rocks in the stomach, and dark-of-the-night second guessings. But we are doing it. Every working day for six weeks.
Blessedly, Jeanie was able to participate actively in the decision. Following the surgery, she was back with judgement engaged and opinions strong. As the neurologist said in amazement, "That woman has a pair of frontal lobes!" In the course of my own decisionmaking angst, she turned me down a dirt road to pull over and park, looked me in the eye, and explained that she was, in fact, free to die. We held one another and wept.
This is not to suggest that we are resigned or giving up. (In fact, it means just the opposite--free to die is free to live, free to fight, free to bet the farm.) We are exploring some new alternatives, including some exotic long shots. The radiation gives us some time to think.
When the clearness committee met, Lydia got clear too: If people in the community know about Mom's time, then you have to tell Lucy before she hears from somebody else. More thirteen-year-old wisdom. Early Sunday morning on a cereal run with Lucy I began to talk. Then on the way to church, as the reasons we might do radiation got spelled out, she wordlessly climbed into the front seat and quietly cried in Jeanie's lap. In all providence, the eucharist turned out to be a healing service. As Jeanie knelt for the anointing, Lucy began to sob uncontrollably and continued unselfconsciously in our laps back in the pew. The congregation was loving and prayerful. I can't imagine a better place for a child to process hard truth than in worship and prayer.
At present Jeanie and I are alone at the cabin, having moved treatments to a hospital farther north. The girls are in final rehearsals for a youth theater production of Sound of Music. (They play two of the daughters. "Doe a deer, a female deer") In the past week Jeanie has had some unassailable head pain and seizures that overtake her as she walks, but we seem to have finally passed through both with medication and wheel chairs waiting in the wings. Today was wonderful. Walks and talks, kisses and the banter of humor. As I write, Jeanie of the Frontal Lobes is answering correspondence, her fingers flying on the keyboard, writing once again faster than I can think. I couldn't be happier in the moment.