Pay tribute

What: Davis High School Hall of Fame induction ceremony and dinner

When: Saturday; 6 p.m. reception, 7 p.m. dinner and awards

Where: Freeborn Hall, UC Davis

Tickets: $55 each; call (530) 756-3679 or go online

When Cathy Speck learned she was to be inducted into the Davis High School Hall of Fame, she was thrilled. But she also had one question. Why?

She actually called a committee member to find out why she was chosen to be among the five individuals who will be honored next weekend.

“I said, ‘I’m getting interviewed by the newspaper and it would be really helpful to know why I’m getting this award,’ ” she recalled with a chuckle last week.

The Davis native, who graduated valedictorian of her class in 1977, was told she was being honored for her advocacy on behalf of those with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, as well as her efforts on behalf of the gay and lesbian community.

But had the Blue & White Foundation wanted to honor an alumna purely on the basis of courage and grace under fire, surely it needed to look no further than Speck.

Because while ALS, the disease that killed Speck’s mother and several siblings, continues its relentless assault on her own body as well, Speck continues to use her indomitable will, her sense of humor and her optimism to champion the causes she believes in.

“I do feel I’ve been given a gift,” she says. “This is the best possible way for me to raise awareness for equal rights and to raise funds and awareness to fight the disease that killed my mom. What better way to honor my mom and the love she instilled in all of us to be compassionate and strong and considerate?

“I have the ability to make a difference. And this is my opportunity.”

ALS first strikes

Cathy Speck was born on Nov. 29, 1959 — the eighth of nine children born to Gene and Dorothy Speck.

It was by all accounts, a typical Davis childhood growing up on Oak Avenue. And perhaps it would have remained that way, had her mother not been diagnosed with ALS when Speck was 11 years old.

Not as much was known about the disease back then, and what was known was somewhat contradictory. The terminal disease was not considered hereditary, she and her siblings were told, yet it seemed to run in families. They would each quietly wonder from then on if they would be next.

But back then, when her mother was diagnosed in 1971, Speck still believed her mother would be just fine.

“My mom was going to beat it because she could do anything,” Speck said. “She was the strongest person I knew. She didn’t get sick. She didn’t have time to get sick.”

But they watched as Dorothy got weaker and weaker.

ALS is a disease of 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 the muscles then begin to weaken and waste away, in the arms and legs and 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.

As their mother’s disease progressed, Speck and her siblings learned to run the household and to take care of their mother, assisting her in the shower, feeding her.

Dorothy Speck would be hospitalized in October 1972, but she still came home on weekends and special occasions. Speck recalls several of them quite clearly. One was when Davis High played Woodland High in the final football game of the season that year. Speck’s brother, Jim, was Davis High’s star quarterback, Speck said, and her parents had received permission to drive out onto the football field so Dorothy Speck could watch the game from the comfort of her car.

She actually made it into the bleachers at another game to watch her daughter, Susan, play in a powderpuff football game at Davis High.

“That just shows you the dedication she had,” Speck said, “the commitment we all had for each other.”

Dorothy Speck would die in December of that year, when Cathy Speck was 13 years old. One of her many legacies would be the creation of the Dorothy Speck Memorial Basketball Tournament at Davis High, a tournament her daughter would play in several years after her mother’s death.

It was through basketball — and most sports, really — that Speck would come to define herself for many years. She was on Davis High’s first section championship teams in 1975 and 1976, playing alongside fellow Hall of Famer Denise Curry.

And she recalls her time at Davis High as among the best times of her life.

“I’m one of those weird people who loved high school,” she laughs now.

Speck played a variety of sports at Davis High, but she also was involved in student government, the yearbook and the HUB. She had many friends from all walks of life — friends who are still a part of her life today.

Coming out

After high school, she headed to Chico State, to play basketball and to study mass communications. It was during her first year there that she took the next big step in her life: She came out.

Since about seventh grade, she says now, she had known she was different. She liked boys — and especially enjoyed playing sports with them — and actually found girls rather boring.

“But that tickle in your tummy you get when you have a crush on someone?” she said. “That wasn’t happening with boys. It was happening with girls.”

But it was a time, she notes, “when it was not OK to be gay at all.”

“I was raised a Catholic, so I was going to hell, and I was torn apart because I knew I was not a bad person,” she recalls. “In fact, I tried hard to be a super great person so people would find it hard to judge me because I was gay.

“By then, a lot of my friends had been disowned because they were gay and I didn’t want to lose my family,” she said.

But she was having a hard time in a relationship, she said, “and I really wanted to be able to talk to my dad about it, because we talked about everything.”

In 1979, she finally did.

“I wrote him a letter,” she recalled, “and he called me and said, ‘I would never disown you. I love you.’ He assured me that he loved me no matter what.”

Despite the acceptance of her family, Speck still had a long and often dark road ahead. It began when her knees gave out on her not long after that.

“When my knees failed me, I fell into a dark depression,” she said. “I had always identified myself as an athlete. Not having that, I got lost.”

She became an alcoholic, developed anorexia and bulimia, and was cutting herself again — something that had started way back when her mother was hospitalized.

“Doing all those things to myself, I was basically trying to kill myself,” she notes now.

It was a culmination of so much — her grief over her mother, her dread of developing ALS, losing her athletic career.

She headed to Auburn and took a job coaching JV girls basketball at Placer High School, but the self-destructive behavior continued.

Back home to heal

Finally, she said, she reached a turning point, and decided Davis was where the healing lay.

“I knew I had to come back to Davis, not to reinvent myself, but clear away all the debris that built up over my true self,” she said, “the part of myself that was who I was before my mom died.”

The healing took some time, and some therapy, but Speck emerged in the end healthier and happier. She worked for a while at Davis Lumber, then at the Davis Food Co-op where she still works today. She decided to take some classes, among them voice and choir, and she began singing all the time. They even started calling her “the singing cashier” at the Co-op.

She got involved in the local music scene and eventually met and fell in love with fellow singer Linda Duval. They’ve been together since 1993, making music as the popular duo Duval Speck, and eventually marrying.

Back when her relationship with Duval first started to get serious, they had a serious discussion about ALS. Speck described what the disease had done to her family and said if she ever learned she had ALS, too, “I would kill myself.”

“What’s the point of dragging something on if you’re just going to die this horrible death? There is no point to it,” she said. “I told Linda, ‘I can’t explain ALS in a way that you can understand … there’s no way to explain the horrendous (downward spiral) of your body while your brain stays intact.’ ”

Duval understood where she was coming from, Speck said, but it all seemed so far removed from their lives right then to really worry about.

In 2008, Duval would come to learn exactly what Speck meant about the horrendous progression of the disease when Speck’s brother Larry was diagnosed with ALS.

Speck and Duval began caring for Larry in his Lodi home.

Larry confided to Cathy that he always knew he would get ALS one day.

“I asked ‘Why?’ ” she recalled. “And he said, ‘My thumb,’ and I knew exactly what he meant.”

There was a kind of muscle wasting at the base of his thumb that Larry Speck remembered seeing in his mother, and that he saw in his own hands as early as his 20s.

“He just always had a feeling that he had it,” Speck said. “And he didn’t want to pass it on, so he even had a vasectomy. He didn’t tell anyone.”

Sitting beside him on the couch, watching what was happening to her brother’s body and listening to him describe the progression of the disease, Speck had a revelation of her own: “Oh, shoot,” she said. “That’s happening to me, too.”

“Linda said later that she’d seen it for at least a year, and I knew it, too, but there’s nothing you can do,” Speck said.

A drive to do more

She would receive her diagnosis in January 2009, but by then, she had already become an activist, working to raise money and awareness to fight the disease. She used her music and every chance she had on stage to spread the word and even traveled to Washington, D.C., to speak before Congress.

Genetic testing would confirm that both Larry and Cathy Speck had inherited a rare familial form of the disease. Fewer than 10 percent of all ALS cases, it turns out, are hereditary. Larry Speck would die in July 2008. Another brother, Paul, would be diagnosed not long after Cathy.

When Paul died earlier this year, he left behind children and grandchildren, any of whom may well have inherited the genetic mutation.

“I can’t imagine how that would feel, since I’m not a parent,” Speck says. “But I have eight great-nieces and nephews and when I look at them … I’m giving everything I’ve got to ALS awareness and fundraising so that maybe by the time they’re grown up, there will be something for them.

“That fuels me to do more,” she said.

And that fuel keeps her alive. An earlier belief that she would take her own life rather than live through the progression of ALS gave way to the belief that she can make a difference in the time she has left, and that ALS would not steal her spirit.

Everything she went through in her life would serve to help her.

“Going through all of that — the alcoholism, all of that stuff — helped me become more compassionate and understanding, so I can help people,” she said.

When she could still sing, she would use every opportunity she had on stage with a microphone in hand to spread awareness about ALS. Now that she can no longer sing, she uses her words — blogs, columns, emails and even public speaking.

“I feel like I’m still helping people, and that’s the biggest thing for me,” she said.

She’s still a tireless fundraiser as well. On Saturday, she and her team of “Specktaculars” participated in the Walk to Defeat ALS at Raley Field, with Speck planning to ride her tricked-out tricycle.

Equal rights

She’s driven by a sense of injustice as well.

“I’m dying from a really horrific disease, and the federal government doesn’t recognize my marriage to Linda,” she noted. “We’ve been together 18 years, we’re married, but when I die, she can’t receive my Social Security benefits. That is real. It’s not a hypothetical ‘What if?’ situation. People don’t believe we deserve equal rights.

“I am the perfect poster child for ALS and equal marriage rights,” she adds. “And knowing I have an expiration date helps me stay focused on the things that we all know matter.”

When the end does come, she expects it to be at night, in her sleep, when even with an oxygen mask, she struggles mightily to breathe.

“If I die tonight, or tomorrow night,” she said, “it won’t be a surprise.”

But she’d very much like to make it longer than that. She’s especially looking forward to the Hall of Fame celebration next weekend.

“It will allow me to honor my friends, my mom and dad and my whole family,” she said. “And the wonderful experience of being a Davisite.

“What I’m being honored for is giving back to the community, which is the same community that gave it to me in the first place. The Davis schools, Davis High, my friends and family. They gave it to me and I’m giving it back.

“It’s the circle of love and light, of giving and accepting, of helping and being helped.”

Follow Speck on her blog, http://www.cathydyingasliving.com.

— Reach Anne Ternus-Bellamy at [email protected] or (530) 747-8051.

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The Speck family gathers to smile for the camera. Clockwise, starting with dad Gene Speck, are Cathy Speck, Barb Speck Salonius, Mary Pat Speck, Peg Speck Grady, Jim Speck and Paul Speck (who died May 16). At Gene’s feet is Belle, who died in February. Courtesy photo

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Cathy Speck — wearing braces to battle the effects of degenerative ALS — feels most comfortable behind a microphone, performing as part of Duval Speck and with other bands over the years. She is being honored with induction to the Davis High School Hall of Fame. Courtesy photo

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