Monday, July 26, 2010

Bonnet's syndrome and reality

HUH?
That was my reaction, late last year, when I was contacted by a production company in England and asked to appear in a documentary. With my family.
The company, Firecracker Films, has made documentaries for the BBC, Sky, The Learning Channel and Discovery. And, they wanted me and my family for ... what?
I immediately conjured up images of my mother wandering around her yard like Edie Beale in "Grey Gardens," wearing turbans made of old green dishcloths.
Instead, it was my FATHER they wanted. In October 2007, I wrote a column in The Record about his first bout with Bonnet's syndrome, an unusual side effect of his macular degeneration.
Dad woke up one morning, looked out the window and saw non-existent shrubs on his front lawn. Other strange hallucinatory images followed.
Later that morning, in a nearby hospital ER, he saw balloons, polka dot curtains and, most eerily, his late mother walking toward him.
He was vague to doctors about what he was seeing because he was frightened and wanted to go home.
He assumed he was dying. I assumed he was experiencing a medication-related problem. But, that night, I went online, searched "macular degeneration/hallucinations" and discovered Bonnet's syndrome (identified in the 1700s by Swiss naturalist Charles Bonnet), in which patients with severe visual loss see vivid and seemingly real images of landscapes, patterns (plain white walls turned into busy brick walls) and even cartoon characters.
Dad and Bambi became great pals there for a while; Bambi still writes, periodically.
The problem comes in sieges, then disappears for months.
After the column ran I received letters from people all around the country who have dealt with this. And, when the folks at Firecracker began to consider a documentary on this strange condition, people they spoke to mentioned my article.
A month after that call from Firecracker, my father and I did telephone interviews and, later, Skype interviews with the production team. A few more months passed. Nothing. I assumed the shoot had been canceled.
But then, we were interviewed all over again. Dad. Me. My mother. Dates were tossed around.
"They're talking late August," I told my parents. "We're all going to be on TV!"
My father growled, "What are they paying me?"
"Dad, it's a documentary," I said, "they're not paying you. They'll be shooting here for a few days and ..."
"A few DAYS?" my mother screamed. "And I have to cook for all these people?"
"Who said anything about cooking?"
"Well, who's going to feed them?"
"Ma, they'll eat somewhere. And, stop complaining! This is huge! After it airs, our family will become synonymous with bizarre and occasionally grotesque hallucinations!"
Days later, the producer called again. Could I send him some photos of the house? He also wanted to know if it was possible for us to plan a "normal family dinner" with my entire abnormal family so they would shoot some supplemental footage. And, could he interview my 13-year-old niece, Talia? And ...
My sister-in-law OK'd the interview with Talia for July 16. On July 15, Tal warned her friends on Facebook that she would be busy the next day, "being interviewed for my TV show."
Naturally, her friends were curious, so she subsequently explained, "My grandpa has a desease where he sees people as like something diffrent and I hang out with himm so I'm gunna be on the documentary."
I still can't believe she spelled "documentary" correctly.
Her friends were thrilled. One explained, "I've seen those! When you're onscreen it will say, 'Talia. Grandchild.' "
My parents, meanwhile, were suddenly warming up to the idea. So was everyone else we know. Within weeks, our little onscreen "normal" family dinner grew to include, according to my mother, "Aunt Irene, baby Dominick, Marie from next door, cousin Caroline ..." and assorted other relatives who would get mad if they weren't included.
"Ma," I said, "we're shooting a documentary, not 'Gone With the Wind.' "
On Thursday, a letter arrived: "See you next month at dinner! Sincerely, Bambi."
When he's onscreen it will say, "Bambi. Fictional Deer."
After supper on Saturday, Mom asked me to drive her to the supermarket. En route, she said, "Your father won't admit it but he's excited. It's the only good thing to come out of this whole mess. I mean, we never even heard of this condition. No one in our family ever had vision problems."
She then pointed out the window and sighed, "Oh, look. A full moon. How nice."
"That's the sun," I corrected.
She squinted through the window. "Oh. Ha-ha. Where was I?"
Frankly, my biggest fear after people see my wacky family on TV is that we'll wind up getting a weekly series on Bravo.

No comments: