UTBM Excerpts

“So I could go but I couldn’t stop; I’d get my bike rolling fast and then I’d crash into the house, an effective way of stopping. It drew the attention of my mother; who would appear at the splintered screened door; wiping her hands on a small frayed towel and bleating, Are you all right? You rattled the dishes! “

I tried so hard to fly

“Teetering with the soles of my red sandals on the edge of the picnic table, I willed myself to catch an air current and soar like a flying squirrel. Thud! I hit the ground with my knees… She stood at the door with her hands on her aproned hips and called in her sing-song voice, If you don’t fly in two more minutes I’m going back to my program! She meant it. She was looking at her watch… Every time I set out to fly I was certain I would. With the paper grocery bags over my arms, I ran. I flapped and they ripped and I was back in the house often for replacement wings…

Here, try these smaller bags from the drug store, said my helpful mother who had a ready supply of replacement bags because we didn’t throw anything away. There was no away.“

Grandma’s House

“My older teenage cousin took shampoo with her to Grandma’s Brook and shampooed her long red hair in the deep pool Louie dammed for us. It was the seventies and she was like the kids on TV who were uninhibited; who did things like wash their hair in rivers. I had no concept as to why she’d do that when Grandma had a perfectly good bathtub in the house. Nevertheless I admired her free spirit and her long flowing sunset hair that tried to follow the water downstream. I was happy enough with faucets. And plumbing presented enough problems for me. I didn’t need to visualize crabbies nibbling at my ears.”

A Tree

“I studied the indented place in the crooked pine’s trunk where long ago someone had encircled it with wire… which was now rusted and still clearly visible in places. The resilient tree had grown; in bulges around its belt of rusted wire. I so wished it could catch its breath. Its encroached midsection, like the fat roll on a middle-aged man had been trying to maintain its dignity for all the time since it was crudely defaced. It grew upright proud, though slightly bent, with long graceful pine arms. It was perhaps disfigured compared to its neighbors, but nonetheless thriving. I imagined its voice as that of a breathless, jolly librarian who carried around oxygen. You had to lean in to hear his voice but he was worth listening to.”

My First Advocate, Dan

“Dan made up a list of things my teen son could do to make riding on the school bus easier: He could place his book bag beside him to discourage kids from sitting with him. He could bring a CD player with earplugs, even if it wasn’t turned on, to block noise and appear distracted. He could try to position his body so it looked like he was looking out the window…As for school…why couldn’t we arrange a PPT meeting to discuss arranging a way that my son could participate in oral reports separately, with a video recorder, instead of in front of the class- where he went mute? Why couldn’t we suggest that he take gym class away from the stimulation of the kids, in the weight lifting room instead? And could they allow for an overload room for him to go if he felt stressed? It was all a start. During one ’emergency’ meeting at the school, I was without Dan, and I sorely needed him…”

His Diagnosis

“The diagnosis of ALS (Lou Gehrigs Disease) dumped an arctic slush on us… After hearing about ALS, we two left the office and there we were- walking into a crisp Autumn day, complete with a view of rolling hills surrounding this hospital marked ‘M.D’.

What right have you? I thought, to seduce us with your splendor, with your oranges and siennas, nature had such haughty exhibitionism on this day of days, a day gone as flat as a New England postcard… As Howie blew warm smoke into the air that day and fumbled for car keys, he’d said aloud, I’m only thirty-seven.”

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