I love your development
From the answer to a simple query to a state of peace
That has the world by the throat…
--from “To ‘Yes’”
by Kenneth Koch
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. Doctors continue to look for a name to call it. Until they find one, it is known to us by the names of its symptoms -- progressive spastic paraparesis, Bence-Jones proteinuria, subcortical dementia – and intimately by its subtle violence, the anonymous thief ravaging our dreams and twisting our son’s life.
He had been healthy and characteristically happy, our firstborn. We had named him Isaac; he chose to be called Ike when he became a teenager. During the second half of 1997, as he approached his fifteenth birthday, his walk became stiff-legged, progressively awkward, lurching. The pediatrician referred us to an orthopedist and he to a neurologist, and we began the leap across the divide from “before” and “normal” with no idea that eight years later we would still be suspended, waiting for an “after,” a diagnosis, a place to land.
More than forty disorders on the original differential diagnosis were considered and eliminated in the first months. Brain and spine MRIs, a skin-muscle biopsy, blood tests, gene scans -- we were in good hands. I did not know that “none of the above” was among the multiple choices of modern medicine.
Ike left home for college in September 2001, four years into his illness. No longer living with the day to day of Ike’s illness, I began to write, and it was then, as Pablo Neruda puts it, that…Poetry arrived / in search of me. 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.
In November, the college called. Ike was disoriented, confused, approaching paranoid. Enter the third symptom, dementia. A detailed neuropsychological exam confirmed cognitive decline in most areas, chunks of IQ lost, substantial drops in speed of processing, retrieval. MRIs showed brain atrophy, loss of gray and white matter, and still no known cause.
Poems became almost all I could read. I tucked them inside the thick file of Ike’s medical records when we headed for more doctors. 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.
In Kenneth Koch’s poem, the question and the yes are intertwined. Ike is still very much alive; he continues to be a yes in spite of unanswered questions and losses that scream “no.” There is development, unfolding, ambiguity and strength. A state of peace / That has the world by the throat…