2.04.2008

Alzheimer's Story Brings Writer a New Bond
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It is not as if our jobs are anonymous. Our names, after all, are conspicuously slapped above our work. We identify ourselves before we interview people, before we ask for the facts or urge others to bare their souls.

So why has my equilibrium as a reporter, a sportswriter of 25 years, been so thrown out of whack these past three weeks?

It is not the reason that seems most obvious: simply because I turned the proverbial tape recorder on myself.

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Yes, writing about my parents' decline from Alzheimer's disease, in a piece that ran Jan. 13 in the Chicago Tribune Magazine, was an emotional undertaking. But there remained a comfort level there, a familiarity with an audience I had imagined had read my coverage of the Bulls championship runs and the Bears mediocrity, who came with me to Wimbledon and the Olympics. They did not always like what I wrote, and sometimes told me so with brutal candor. But that is where it stopped.

Readers wrote. I wrote back. And we both walked away.

But baring my own soul on a topic that profoundly affects so many people involves a lot more than one story on one day, I have learned.

The sheer volume of mail was enough to set the Alzheimer's story apart from any I had ever written. But it was what people wrote that has perhaps forever changed my relationship with readers.

"The dog got a very long walk this morning," wrote Joan, who told me her mother resides in an Ohio Alzheimer's residence. "I cried ... and that was a good thing. I don't allow myself to cry enough. Your story helped me to know that it will be painful and difficult, but we will all get through the journey. Even though I cried today, I am not feeling so alone."

No longer could we walk away from each other. No longer could I hit delete and move on. How could I not get emotionally involved when a man asks me, as one did, how to tell his father that it is OK to die?

Or when another reader asked if I could persuade her siblings to forgo a feeding tube for their dying mother?

I was left with a headache and a stomachache each night as I read heartbreaking stories; brought to tears by those who told me they were brought to tears; and inspired to do more by those giving so much of themselves.

Younger people wrote of their lingering fear for the future, of dealing with their own aging parents or of perhaps developing the disease themselves. Others, in their 60s and 70s, described a dread that all but leaked through the computer and onto my lap.

There were amazing tales of love, painful honesty and aching guilt.

There was Pat, who described her father, Jim, writing love letters to her mother for the last several years of his life, something she would not discover until her mother shared them with her the night of his death.

In the letters, the family could trace the disease's progression, the early letters "beautiful and sentimental," the later ones apologetic for "all of his forgetfulness and mistakes." He asked for his wife's forgiveness and thanked her for still loving him.

"As the years passed, the letters made less sense," Pat wrote. "By the end, you could not even read them."

I thought of my own mother's letters to me during my first two years of college, a stash I found when we were cleaning out the house. They were so smart and funny and revealing, her voice all but jumping off the page. I thank God I hung on tight to them, like the handful of recipes also written in my mother's own hand -- hilariously imprecise measurements scribbled on paper by a wondrously imprecise cook -- but her voice once again back in my head.

I read the words of Alissa, who was just 23 when her mother developed Alzheimer's at 53.

"[She was] also the sweet, adorable, needlepointing, mah-jongg-playing, newspaper-reading, matzo ball-making, selfless 4-foot-11 Jewish mom who always thought for others, and never herself," the daughter wrote.

"When my mom lost all of her friends to the disease (it was too 'hard' for them to hang out with her ... and 'embarrassing' when she made mistakes)," the daughter wrote, "we joked (because that's how my family also deals with stress), that if she had breast cancer, they would all band together, wear matching T-shirts and walk for three days in her honor.

"But with Alzheimer's, people seem to run away as far as possible."

Finally, there was the man named Robert, who said he stopped reading my story after the third page, calling it "ludicrous and boring."

"My wife has the disease, and it is not the hilarious picnic that Melissa describes," he wrote.

In the past this would have annoyed me, probably angered me. I would have been tempted to whip off a sharp reply. But this time, all I could see was a man's pain. And all I could feel was sadness.

Am I left with closure, to use a word I can't stand? I don't think so. I really don't. What I am left with is a strong sense that even in a cyberspace world of infinite space and time where the story of my parents reached well beyond the audience I had imagined, there is still community. There is compassion. And there is great comfort in that.

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