Photo by Benoit Cortet

My son's illness is eight years old and has no name. It started when he was 14. He is now 22. It is taking away his ability to walk and to reason. It is getting worse, some years more rapidly than others …

These words begin the first section of Blue Peninsula (Farrar, Straus & Giroux, April 2006) -- a narrative of my son's degenerative illness in 33 parts. The voice to speak those words began with a conversation at my 25th Reunion at William and Mary, where I graduated as a government major in 1977.

"It's always fun to catch up," Professor of English Robert Scholnick had e-mailed in response to my request for some of his time. He and I met in his Tucker Hall office on the Friday afternoon of Homecoming weekend in 2002 and were quickly caught up in a discussion of the connections between literature and medicine. He had developed a freshman seminar and an American studies course on aspects of the relationships between narrative and medicine. I had turned instinctively to poetry during the years of my son's undiagnosed degenerative neurological illness.

After college I completed a master's degree in international affairs at Johns Hopkins School of Advanced International Studies. A string of interesting jobs, which fit in around raising two sons, had landed me finally teaching International Baccalaureate history at Atlanta International School -- in many ways my dreams came true. But in 1997, just as our older son, Isaac, approached his 15th birthday, disturbing signs appeared -- first, in his walk. Within months, we were in a maelstrom of medical tests.

We had begun the leap across the divide from "before" and "normal." We had no idea that eight years later we would still be suspended, waiting for an "after," a diagnosis, a place to land.

We began working our way down a differential diagnosis of more than 40 disorders. The obvious ones were quickly ruled out. We flew to major medical centers in different parts of the country and spoke on the phone with specialists at others. We kept up with our work, and Ike, as he became known in high school, continued with school. In the fall of 2001, symptoms of cognitive loss became apparent and what had been chronic became, for a brief while, acute. I withdrew from a teaching schedule that had already become interrupted.

I became a poetry addict -- collecting, consuming, ripping poems out of magazines, buying slender volumes that would fit in my pocket or pocketbook, stashing them in loose-leaf notebooks, on shelves, stacking them on the floor. In the midst of all this grief, I had fallen in love. With words. Poems, especially. And just in time.

When I met and spoke with Professor Scholnick in the fall of 2002, he validated my instincts and he encouraged me to keep reading and writing and implied that what I was creating would be worth my while and maybe that of others. I ultimately completed a manuscript that was purchased by Farrar, Straus & Giroux in February 2005 and published as Blue Peninsula in the spring of 2006.

Much of what has challenged me about my son's illness has revolved around questions of knowledge and knowing. So much is unknown -- the cause of his symptoms, the name of his illness, the prognosis. With his progressive dementia, the border between known and unknown is further permeable and moveable. The sense that we were not alone in this and wishing, at some level, to connect underlay my months of writing Blue Peninsula.

Poems became almost all I could read. I tucked them inside the thick file of Ike's medical records when we headed for Mayo again, then to a geneticist, and to Children's Hospital of Philadelphia. I read and reread them in waiting rooms and exam rooms and sometimes hid in them when the world I could touch was too much. Poems spoke to me and sometimes for me.
With a diagnosis, like it or not, you belong somewhere. Without a diagnosis, nowhere. There is no group for Those Waiting to Know. No national organization. No informational brochures. But you can curl up in a poem and sometimes find there what you need -- a way to wait, humility, perspective, love -- to go back out.