Malleability of Memory, Permanence of Family
Before he coaches a youth basketball game, Westporter Doug Brill spends at least half an hour reviewing some key information. He isn't working on defensive schemes or determing the starters for the game. Rather, he's learning the names of all his players even though he's learned them all before.
In a couple hours, he'll forget all of them and have to repeat the process in the next game.
Brill, a 49-year-old husband and father of four, has no short term memory. Some people have known him for years, but each time he sees them it's the first time he's met them.
"I'll tell you, I have a lot of senior moments," said Brill.
Brill was addressing a packed crowd of listeners in the Westport Public Library with his wife, Patti. After introducing himself and speaking a little on his condition, he paused to take a photo of the audience.
"The picture is so that I can have some memory that I have been here with you folks tonight," he explained.
His memories are kept in extensive notes and a calendar that summarizes what he does in each day of his life. His family, with their loving patience, also helps. He knows he's changed since his short term memory disappeared, but according to him it's not necessarily for the worse.
"Not that I was a bad person before this illness, [but]if I was on the road and saw somebody broken down I might have just driven by them because I had to get to a GE Capital meeting," he said. "Nowadays, I usually stop when I see people broken down."
Keeping Up Appearances
Brill picks up his kids from basketball practice with the guidance of a GPS. Otherwise, he'd be lost. Crossword puzzles are one of his passions, and he runs five miles a day. He laughs and jokes as much as anyone else -- even when the stories involve his memory loss -- so his good nature makes it hard for people to realize his lack of short-term memory.
"All of this has taught our family that you can't judge people," said Patti. "My friends ... say `oh, I saw Doug running' but they don't know that he's reciting [directions in his head]."
Prior to 2002, Brill worked a high-level job with GE Capital. His career was going well, and his four kids had been born. All of a sudden, he started to feel unlike himself. Days off from work turned into weeks when he was admitted to Stamford Hospital. A variety of tests came back with nothing, and he was released.
"After the release I came back home and things went from bad to worse," he said.
Brill was in excruciating pain, and the slightest bump in the road would cause him pain. He was hospitalized once again and doesn't remember any of it. He doesn't even remember the pain.
It was frightening for Patti see what was happening to her husband.
"When we were in the hospital, I remember saying to my mother in law `I just want him to remember who I am'," she said.
Soon, he was diagnosed with neurosarcoidosis, an inflammatory reaction pertaining to various tissues. The part of the brain where short-term memory is stored until transferring to long-term memories was affected. The path that bridges the two was essentially blocked off, while his memories of his childhood in Darien, his colleagues at GE and his family were maintained.
He knows what days of the week he plays hand tennis with friends. He also knows that his oldest son, Matt, 17, is going to college.
"In high school I definitely realized how much it changed the family, but I've definitely learned to adapt to it," said Matt. "It's something we just all had to live with and we made it work."
The Brill's only daughter, Nicole, 16, was in fourth grade when she got the news about her father's condition.
"Back then, I didn't realize how big it was and how different my life would be," Nicole said. "Obviously now, he's sacrificed so much for us ... and now he can spend more time with us and I realize if he was at work I wouldn't get to see him all the time."
Brill admits that his condition can be humbling since he's often at the mercy of a Post-It note or the GPS in his car. He doesn't work, but his wife started her own business and insurance also alleviates the burden. Still, Brill doesn't let anything that has happened to him get him down, and he credits the support and patience of his family.
"I'm not looking for sympathy, but if you did look at some of the plusses to having an illness like this, it's that I was able to spend more time with my children than if I was working until 1 o'clock in the morning at GE," he said. "For that, I feel appreciative.