The choice: Anger and grief ... or living to the limits
Leo Greene, Staff Writer
Article Launched: 01/14/2007 12:00:00 AM PST


Leo Greene, a reporter and videographer for The Sun's sister newspaper, the Ontario-based Inland Valley Daily Bulletin, was diagnosed with amyotrophic lateral sclerosis, or ALS, on Aug. 16.
ALS, also known as Lou Gehrig's disease, is a progressive neurodegenerative disease that attacks the motor neurons and leads to paralysis. Most of its victims die within two to five years of diagnosis.

In a monthly column and through videos available online at www.dailybulletin.com, Leo explores his thoughts and feelings as he tackles the disease. He also hopes to educate the public and bring more attention to an overlooked illness that afflicts more than 5,000 Americans each year.

`How are you doing?" the woman at the support group asked.

She meant, "How are you coping?"

"I'm doing fine," I replied, using an assured tone to suggest something more than "fine."

Sure, the dogged arms of Death keep pulling me down. That's what Lou Gehrig's disease does.

My muscles have weakened. My speech grows increasingly slurred. Dressing myself has evolved from difficult to slapstick.

However, this is not about the disease. This is about things still under my control, such
as how I respond to my condition.
All things considered, I'm doing better than fine.

Looking back, this journey didn't start out so rosy.

About five months ago, after a plethora of mostly invasive medical tests, the neurologist delivered his thoroughly considered diagnosis.

The nerves controlling my voluntary muscles were shriveling up and dying. Eventually, I will end up unable to move, eat or even breathe.

This criminal and incurable malady goes by several monograms: amyotrophic lateral sclerosis; ALS; motor neuron disease; and Lou Gehrig's disease, after the Yankee Hall of Famer who succumbed to it in 1941.

I walked out of that medical office into an emotional maelstrom.

Denial is a common initial reaction for the newly diagnosed. The news can be tough to swallow all at once.

Some of us get furious. I met a newly diagnosed man who ranted against the medical profession for taking a year to render a diagnosis, not that an earlier opinion would have changed things.

Others panic, sifting through the Internet for glimmers of hope or something somebody missed.

A few of the desperate spend saved or borrowed dollars on improbable cures.

And then there are those who curl up like autumn leaves and drift away.

Me? I dropped right into grief, bidding tearful goodbyes to family and friends, even to the dog on the corner who never liked me anyway.

For me, the strength to cope was found through human contact.

A few of us seem to handle these sorts of things better. Some are farther along the path of emotional management. Through contact, we learn.

I consider Angel Ayala a mentor.

He showed up at a couple of ALS support-group meetings I attended in Loma Linda. Both times I saw him, Angel lit up the room with his humor and zest.

This 43-year-old former financial consultant was diagnosed with ALS in October 2004.

Angel is now dependent on others, as well as on a motorized wheelchair.

"When I was first diagnosed, I thought my life was over," he said. "I curled up on my couch with my wife and kid. I didn't know what to do. I cried a lot."

The sorrow lasted days. Then, something changed.

Angel didn't want his family remembering him in such a state. He made a choice.

"I said, `I'm going to live every day. Living is to live. Life is to live,"' Angel said. "I'm not going to sit around and wait to die."

Angel's positive energy would likely meet with Fiona Vajk's approval.

A clinical psychologist at the Claremont Colleges, Vajk has helped the ill steer through mortality's treacherous waters.

While negative emotions are to be expected, problems arise when the ill get trapped in denial, avoidance, grief or pain.

For those who focus more on the positives, "their health outcomes tend to be better," Vajk said.

Positive coping can mean taking charge of things. It also includes a live-in-the-moment mind-set, a "focus on awareness and gratitude about what is good," Vajk said.

That's often easier said than done, she admitted, but it should remain a goal.

Support groups can be valuable. Individual counseling may prove beneficial.

Angel encouraged the newly diagnosed to reach out.

Tell your friends, "Don't be afraid to talk to me. I want to talk to you. Let's enjoy our time together," he said.

And, "if you're married and have children, embrace them. And tell them no matter what, you love them and want to be with them."

As for me, get out of my way.

I aim to live life at the edges.

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