Sunday, February 10, 2013

"What I have stinks, but that’s what I have to deal with"

I discovered that the line of people, bundled against the chill of the February wind, was longer than I expected when I opened the church’s door. But I should have known better as the man remembered on Saturday had touched more lives than he could have ever imagined.

Greg Winn lost his battle against a brutal form of Alzheimer’s far too soon. He was just a month and a half shy of his 60th birthday. Not even 60 years old. Everybody thinks Alzheimer’s is just an “old person’s” disease. It isn’t. Early onset Alzheimer’s robbed an incredibly vital man of an amazing life. Yes, 59 is young. It’s very young.

I met Greg in 2006 at the Alzheimer’s support group for newly diagnosed clients and immediate caregivers. This was that magical group of folks I’ve written about before, this amazing collection of individuals who let me into their private world so that I could educate more families and the public about the wrath and pain of Alzheimer’s.

At first, I didn’t understand why Greg was there. He was a kid to me. I thought at first he was the son of a parent with Alzheimer’s, but no, he was the one with Alzheimer’s, often accompanied by at least one of his devoted sisters, all in search of answers to “why?” and support. There were few answers to “why?” but there was an abundance of support.

Before the start of the October 2007 Memory Walk, which it was called at the time, Greg and I took advantage of the warm fall day to sit down and talk about what he was facing. I wrote in my book about Alzheimer’s:

“Greg is that stereotypical perfect picture of health and vitality. He exercises regularly, eats properly, is hard-working, intelligent, generous, a dad, brother to six siblings, in his early 50s and savoring life with great enthusiasm every day. He has everything he wants and something he doesn’t want … early-onset Alzheimer’s.

“Attired in running shorts and shoes, Greg prepares to lead the crowd at the annual fall Alzheimer’s Association Memory Walk. The gorgeous sky and hot sun make it more like summer than autumn, and that brings out hundreds of supporters who vow to walk for those who can’t and those who are here in spirit only. They all have a common goal: end Alzheimer’s disease.

“You’d never imagine that behind the stylish eyeglass frames and beneath the closely trimmed haircut is a man who’s battling early-onset Alzheimer’s with every source of energy he’s got.”

Greg told me that he had a good life working in Chicago as an accountant, never missing a day of work. Then he noticed some memory problems that were beginning to affect his work. His doctor referred him for an MRI, where the technician told him, “Take it one day at a time.” He laughs at that memory before his world flipped upside down with the diagnosis.

“One day at a time … That’s all I do. What I have stinks, but that’s what I have to deal with. I’m reconciled with it. This is my plight. This is what I have to do. I still get up every morning, still work and drive. That may be a problem at one point. I’m sure it will be. Other than that, I’m doing good, I‘m in great shape, I’ve got a great family. When the news came down, they were all around me. No ifs, ands or buts. They got me down here.”

That support system included four sisters and two brothers, who grew up in a tiny house where the girls shared one bedroom and the boys the attic. After the memory symptoms snowballed, he admits he couldn’t deal with it and moved back home to be close to family.

His siblings offered substantial emotional, physical and financial support as he copes with unexpected life changes, having to find work that didn’t tax his memory skills too much. It’s not the most exciting job in the world, but “I’m doing something.”

Despite everything, he says, “I couldn’t be in a better situation.” Is it hard for him to ask for help?

“I haven’t got to that point yet, but I probably will sometime. Nobody knows. It’s just the circle of life. It’s a tough thing not knowing what’s going to happen or how fast it’s going to go.”

A few months earlier, he had traveled to Washington, D.C., to offer testimony on the need for additional funding and to show the world that Alzheimer’s does not claim only the elderly. “Just get some money. That’s what we need. I feel like I’m contributing something. I feel like I’m helping some people …”

Greg was certainly not the voice or face one would expect to help kick-off the annual walk as the growing crowd listens …

“My name is Greg, and I was diagnosed a year and a half ago.” He pauses. “Hold on. I’m having a Greg moment here and need to stop for a moment.”

“It’s okay,” a female voice calls out. He smiles.

“I have to deal with this every day of my life. It’s tough, but I don’t dwell on it. I’m doing the best I can, and I’ve got a great family. They’re helping me tremendously, and I can’t thank them enough. I’m doing all right now, but I don’t know what the future holds …”

Several of Greg’s siblings cheered him on from the crowd, so proud of their brother who had refused to hide from the world and who had vowed to make a difference any way he could.

I can still hear and see that moment, which seems so long ago, yet was like yesterday. I was teary-eyed then and on Saturday, when I sat in the filled church for a celebration of Greg Winn’s life.

While absorbing the meaning of those two very different occasions, I reflected on my own life mission as I comprehended how well Greg had accomplished his. He put a real face on Alzheimer’s and it’s brutal toll and worked so hard to draw more attention to it. And I was so blessed to know him and help tell his story in my book.

I also realized that I had accepted a calling that would lead to more moments like this, falling in love with so many individuals who would lose their battle against Alzheimer’s. I have and will shed many tears and suffer heartache at loss, but I wouldn’t change what I want AND need to do. I’ve also lost stroke, cancer, traumatic brain injury and brain tumor-brain cancer survivors who had won special places in my heart as I’ve allowed their stories to become part of me.

My soul is constructed stronger because of each of these moments and individuals. I follow one of my firm beliefs: Tissues are cheap; human relationships are priceless. I just keep stuffing my pockets and my heart …

You won the race, Greg!