by Tim Gilmore, 8/25/2017
The front tower might have impressed me more. I don’t know why it didn’t.
The mansion stretches across the lawn, but doesn’t tell me the world here is better.
The scientist spoke with 27 of us, discussed gene mutations, the C9ORF72 gene abnormality, SOD1, and the wife of the man in the wheelchair asked about environmental factors since her husband is one of three ALS patients who live within a mile of each other.
But “environment” is hard to “locate.” Genetics proceed by charts and maps. But most Amyotrophic Lateral Sclerosis, thankfully, is sporadic, not familial, not hereditary.
Lucie Bruijn, Ph.D., not M.D., chief research scientist for The ALS Association, asked me what I recalled of my mother’s symptoms.
One variation presents mostly in lower limbs. I was 10 when my mother was diagnosed. Soon she was paralyzed up to her neck.
“And was her speech affected?” Dr. Bruijn asked me.
“Yes,” I said. “Her speech slurred.”
C9 can “present” in upper or lower extremities. In my mother’s case, it was both. I’ve lived with the death of my mother for most of my life. My concern is for my children.
Decades ago, in Guam, ALS rates soared 40-fold, then dropped back equal, though Guam cases became known as Lytico-bodig, in which ALS symptoms combine with those of Parkinson’s and Alzheimer’s. What was heritable? What “environment” could be “located” there, where, and how?
I know of no one else in my family’s history who’s suffered such symptoms. Dr. Bruijn looked kindly at me and suggested—My family kept me blind of my mother’s diagnosis until her death and afterward only ever discussed it vaguely.— that my mother’s case was probably sporadic.
That means my mother’s disease likely does not threaten my daughters. That means environmental factors touched an accumulation of genetic triggers, constellations of bad-odds variables that remain impossible to map.
We walk the back of Epping Forest by the river. The statuettes of owls and alligators are unimpressive and concrete and chipped. Okay, roaring ’20s. Okay, Alfred DuPont of great wealth. Fine that DuPont married Jesse Ball and the couple lived here in a big house they named for an “ancient forest” in England.
But I do not feel my mother here. In that she’s infused my personality in ways I’ll never know or understand, I feel her everywhere. Something about me is always about loss. Something’s more desperate than I’d like to admit. Something knows that what we don’t know is always upon us and makes us disappear.
Someone at the Jacksonville Historical Society once told me she’d heard rumors that the state’s greatest philanthropist Jesse Ball duPont had poisoned her husband Alfred in early 1935.
I was giving a talk on the history of murder in the city.
“If you could find something on that,” she said.
But I couldn’t take it seriously. Nor now.
In 1976, President Gerald Ford and Secretary of State Henry Kissinger discussed Middle East peace here with Egyptian President Anwar Sadat. Jordan’s King Hussein and late-’70s British Prime Minister James Callaghan met here. I walk here with my wife after this Florida ALS Association symposium among coy and capricious ghosts who won’t “present” as ghosts at all.
Every ALS symptom “presented” in my mother. After this discourse with Dr. Bruijn, and it’s long made sense, I grant that my mother suffered too much for me to expect her “to present” after death.
They gave us chocolates and made me question the neurological maps of my mother’s pain, relaxed the borders of my children in my heart and in my mind.
Today’s the 25th of August. Yesterday, my mother would have been 81. I last saw her at 50. Yesterday, my daughter Emily turned 19.
I knew, when I started this little meditation, that I would end it by saying that Emily is light.
Just now, I opened the 42 page manuscript my mother wrote two months before she died. It begins, dated August 2, 1986, “I was told the other day that I have Motor Neuron disease, which is commonly known as Lou Gehrig’s disease.” It ends with a chapter called “Heaven.” The final chapter’s first paragraph reads, “Today is August 30, 1986. I am getting weaker and I feel tired most of the time.”
The manuscript ends with the sentence my sister Katie typed: “Joan Gilmore went to be with the Lord, October 20, 1986.”
In the first paragraph, my mother writes, “Both of my legs are paralyzed now and my arms are very weak.” She’s having difficulty moving her tongue, speaking, and breathing. She finishes writing just before she’s no longer effectively able to communicate. This manuscript is not her last words, but I hope my writing will so intimately precede my death. After all, my writing is all I am.
I said I knew when I began this meditation that it would end with my saying that Emily is light.
I’d forgotten my mother’s brief note at the beginning of the manuscript: “Dedicated to my son, Timothy, who is the bright spot in my life these last days.”
After my mother died, I dreamt of wandering labyrinthine pathways to find her. I never did. Not even in dreams. When Emily was a little girl, I dreamt of wandering lost in small streets in great cities. I dreamt that she led me by the hand.
My dreams “present” so unfairly to my mother and my daughter.
Maybe I’m not fair to Epping Forest, whose sweeping green lawns and fountains “present” as barren and dry.
But the particles and the waves of my daughter’s light “present” as both, a “theory of everything (ToE),” connecting every far corner and shadow of my universe and filling them with the magic of the random (even with ALS as sporadic) and—for this is everything, Everything!—with love. With love. Nothing else haunts. Nothing else was ever and is right now real.
Emily is love. Emily is light.