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Cathy Speck offers lessons on death and dying

Cathy Speck is all smiles after talking about "Dying as Living" with students at Sacramento City College on Wednesday. Speck has been battling ALS for several years. Sue Cockrell/Enterprise photo

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From page A1 | October 04, 2012 | 2 Comments

SACRAMENTO — Cathy Speck may have changed some lives on Wednesday.

In fact, she may even have saved some, said Sacramento City College professor Joanne Moylan-Aube.

Because every time Speck comes to talk to Moylan-Aube’s students about death and dying, inevitably one or more of those students will tell Moylan-Aube afterward that Speck’s message, particularly about suicide, has changed their outlook entirely.

“She is,” Moylan-Aube said, “the best teacher.”

But for Speck, a lifelong Davis resident who surely knows as much about death and dying as anyone, being able to share her message with that audience is what keeps her going.

“This will fuel me for a long time,” she said after talking with students Wednesday. “And it will give me fuel for Saturday.”

Saturday is the annual Walk to Defeat ALS at Raley Field, a cause that has defined Speck’s life for, well, most of her life, beginning with her mother Dorothy’s death from amyotrophic lateral sclerosis when Speck was 13 years old.

ALS, also known as Lou Gehrig’s disease, affects the nerve cells in the brain and spinal column that control voluntary muscle movement. As the nerve cells die, they can no longer send messages to the muscles, and then the muscles begin to weaken and waste away — first in the arms and legs, and then the rest of the body.

The condition slowly and steadily worsens, and when muscles in the chest area stop working, it becomes hard, and then impossible, to breathe. Most people diagnosed with ALS survive just two to five years.

Speck’s mother was diagnosed at the age of 49 and died when she was 52.

“I got it at age 49, and now I’m 52,” Speck said Wednesday.

She uses a walker, is on oxygen around the clock and long ago gave up the singing and dancing she loves.

Two of her brothers, Larry and Paul, both died fairly quickly after being diagnosed with ALS, as did an aunt. All, it turns out, were afflicted with a rare familial form of the disease. Fewer than 10 percent of all ALS cases are hereditary.

Speck pulls no punches when she talks about the disease, how it ravages the body, “taking everything away from you except your mind.”

But in her case, the disease also has ravaged a family.

Losing her mother to ALS was devastating.

“My mom was my favorite person in the world,” she said. “When I was young, I sat next to her whenever I could just so our arms could touch. She was my role model. I wanted to grow up and be just like her. So when she was diagnosed … she wasn’t going to die. She was my mom.”

Dorothy Speck lost the use of an arm first, then her right hand. She started losing her ability to swallow, and began choking on her saliva. She eventually had to be hospitalized when her husband and children could no longer provide all the care she needed, and her condition steadily worsened until she could no long move anything but her eyes.

At 13, Cathy Speck made a deal with God.

“I thought it was a really good deal, too,” she told students Wednesday. “If my mom could come home on Christmas Eve, I would ask for no presents.”

But on Dec. 19 of that year, while Cathy was outside shooting baskets in the rain, one of her brothers came out to tell her their mother was in a coma.

Still, Cathy kept shooting.

Her mom just needed her rest, she told herself.

In the early hours of the next day, the call would come that Dorothy Speck had died.

“There I was, this 13-year-old girl, walking down the hall, and I just kept saying, ‘What do I do? I don’t know what to do.’ ”

What she would end up doing was trying to fill the void left by her mother’s death, first by overachieving in school and in sports, then, later, when her knees gave out in college and she’d lost her identity as an athlete, through alcohol, cutting, bulimia and anorexia.

“We didn’t get any therapy after my mom died,” she said. “People didn’t talk about it then.”

So it all built up inside her — the grief, the fear of losing other family members to ALS, not to mention the anxiety of growing up gay in a Catholic family.

In many different little ways, Speck realized, she was trying to kill herself. It wasn’t until she was hospitalized due to the damage done to her liver from drinking that she decided enough was enough, and entered rehab. She decided to turn her life around, to go back and find that 13-year-old version of herself who was full of joy and happiness.

She even went back to school.

And a funny thing happened when she did: Just as she was emerging from one of the darkest periods of her life, when killing herself seemed the only solution, she signed up for a class on the psychology of death and dying — the very same class she visited on Wednesday.

It was 1986, but the effect it had on her likely was no different from the effect she may have had on students this week.

“This class turned me around,” she told them on Wednesday. “What I was learning here about death and dying … was really about how to live.

“It changed my thinking,” she said. “I don’t want to die. And this is the class that saved my life.”

Even after she was diagnosed with ALS years later, those lessons stayed with her.

“I (had) said, ‘If I ever get it, I will kill myself,’ ” she said Wednesday.

After all, she thought, what’s the point of sticking around for such an awful death?

Turns out, she told students, there is a point.

“All those clichés — ‘Live in the moment,’ ‘Be in the now’ — they are absolutely true,” she said. “I’m going to spend the rest of my life laughing, loving, enjoying. Yeah, I’m sad, but if I try to hold on to the past, I suffer because I can’t have it.

“To have the opportunity to come talk to you … I’ve been given such a gift,” she said. “This is huge. All of you listening out there … it’s huge.”

And Speck will be trying to reach more people this weekend, raising both awareness and money to fight ALS.

— Reach Anne Ternus-Bellamy at aternus@davisenterprise.net. Follow her on Twitter at @ATernusBellamy

Anne Ternus-Bellamy

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Discussion | 2 comments

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  • Richard ClarkOctober 05, 2012 - 1:58 am

    This is awesome and exactly what I need to fuel my hunger and desire to kick the NZ Health 'care' system in the guts. I too have ALS/MND, I too over achieved in my career and now in my later years am fighting for my right to still work at my creativity. I may not win but I will not go quietly into the night, thanks Cathy.

    Reply | Report abusive comment
  • Susan SperanzaOctober 05, 2012 - 10:15 am

    Sometimes it takes a death sentence to learn how to live. Every day is precious, enjoy Cathy!

    Reply | Report abusive comment
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