Doug Brill, the Most Unforgettable YMCA Member You'll Ever Meet

It was a gloomy, rainy Monday morning, and I had just hopped on one of the recumbent bikes down in the Westport Weston Family YMCA’s Wellness Center when the gentleman next to me said “Hi.”

I recognized Doug Brill, one of our loyal daily YMCA members who always has a smile on his face, and I said “Hi” back. Doug and I had never really conversed other than greeting each other when he checked in at the Membership desk. But today was different … in more ways than one.

I introduced myself, adding, “I work in Membership Engagement and I see you when you come in, but we never really spoke.”

“Well, Midge,” he said, “I would love to speak with you but I can assure you I will not remember this conversation, or your name, in the next few minutes.”

Talk about an ego boost! But in all honesty, Doug was not joking. And as we both stationary bicycled into nowhere, he proceeded to tell me his story…

In 2002, Doug was a high-level executive with GE Capital. At 41 years old, with a beautiful wife and four wonderful children, he and his family could have graced the cover of Town & Country Magazine.

“I don’t think I missed a day of work until one day I was feeling ill and came home early.” That one day turned into a lifetime. Doug continues recounting the details that transpired after that fateful day, but bear in mind that he does not remember a single thing that occurred. Rather, these are “memories” that have been carefully re-constructed for him by friends and family.

What began as general symptoms of feeling unwell and not “like himself,” coupled with major stomach distress, developed into horrible, pervasive agony throughout his body. Doug runs his fingers along his forearm to describe how every nerve ending was alight with searing pain.

It was a seemingly unending medical journey involving gastroenterologists, infectious disease specialists and neurologists; months of invasive tests and blood work resulting in no clear diagnosis. His wife, Patti, talks about the utter frustration and confusion at this time. “The doctors actually thought his symptoms were stress related,” she tells me.

Finally, an x-ray would show granulomas on his lung with a diagnosis of neurosarcoidosis (‘sarcoid’), a condition of unknown cause featuring granulomas in various tissues involving the central nervous system (brain and spinal cord). No real treatment for this condition so Doug was put on high doses of prednisone.

By the New Year, January 2003, Doug was getting worse. He had not been able to go back to work. His sarcoid specialist in New York had questions about the diagnosis, because sarcoid does not present itself in the stomach, which was where Doug’s symptoms originated. So, more probing, scanning and a spinal tap scheduled in the midst of a February blizzard. Doug was admitted to the hospital and spoke to Patti that night on the phone.

It was the last conversation she would have with her husband that was in any way “normal.”

The following morning Doug was rushed to ICU with a high fever, incoherent, unable to talk, focus, loss of mobility. He was taken to Columbia Presbyterian in New York, which would be his home for almost two months – brain biopsy, MRI, scans, blood work and still no concrete explanation of what happened to his brain. To this day, Patti believes it was a virus.

The part of his brain where short-term memory is stored was affected. Although Doug would regain his ability to talk and walk, he would never be able to remember anything after the beginning of the onset of his illness, and his retention of any new experience or memories would be short-lived and then forgotten.

Doug seems to be able to remember some long-ago events, isolated experiences, high school friends, his family, but most of his past memories are very foggy. He relies on a special “birthday board,” including bygone days preserved in photos, to help him with this.

If you ask Doug what he ate for breakfast this morning or how he will drive back home, his face becomes a blank. It is like living life in Groundhog’s Day … every day.

Doug wakes up each and every morning, and before he does anything he looks at his calendar/journal. “He lives by his calendar,” says Patti. In it are all the phone numbers of doctors, family, friends; schedule of events, routines of the day, post-it notes with directions to places and things he needs to remember.

The arduous re-construction of memories and patience involved in Doug’s rehabilitation has taken its course on the family. But the Brills are stronger and more closely knit than ever. Patti went from a stay-at-home mom raising four young children to a dynamic businesswoman, having started her own accounting firm.

Her mother was a rock for her in the early days of Doug’s illness, and the children have been instrumental in helping their father in every aspect of day-to-day life. Patti glows when she speaks of her children: “They set up Doug’s private spot in the kitchen where he can easily obtain all his things – phone, iPad, car keys, and they taught him all the modern technology that he would need to function independently.”

The Westport Weston Family YMCA has been an especially important part of Doug’s daily life. He sets his GPS with the directions here and back, and uses his Handicap permit to park in the same spot every day — otherwise he forgets where his car is. “You should see the looks I get running out of the car into the Y,” he says. “I would gladly give up my Handicap space, but …”

As a former 5-mile-a day-runner and all-around athlete, he thoroughly enjoys his workouts. The Wellness Center is in a safe and comforting environment that he has become familiar with.

As I listen to Doug’s story and try to digest all of this, I can’t help feeling so terribly sorry for him and his family. It is difficult not to tear up.

But Doug tells me something important: ”I truly live in the moment, and I’m happy. Please, when you see me again and have to re-introduce yourself, do it with a sense of humor. I don’t like people to be serious about this, I want them to understand that other people have it a lot worse than I do.”

My promise to Doug is that I will introduce myself any time I see him, with a smile on my face, and I will always be happy that I am a new person in his life.