Iron Will

Professor and athlete faces down ALS diagnosis

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In this screen shot, Mary Zavanelli completes the Kona Ironman competition with a smile on her face.

The shivering started halfway through the 112-mile bike ride.

Mary Zavanelli, a teaching professor of biology at UC Santa Cruz, had already completed a 2.4-mile swim and was anticipating a 26.2-mile run but the uncontrolled shaking that ran through her body in the 95-degree Hawaiian heat was unexpected.

“I was fighting the winds, which was annoying, and when the shivering started, I knew I was going into heat stress,” Zavanelli said of her participation in the 2001 Ironman World Championship triathlon on the Big Island of Hawaii. “I pulled off the road and sat under a bush and drank all the water I had and ate a Power bar.”

Then she got back on her bike, completed the marathon-length run and crossed the finish line in a little over 16 hours.

“You learn a lot about yourself when you’re out there. I guess I’m just too stubborn to quit.”

Zavanelli says this as she sits in an upholstered recliner in her Santa Cruz home. Her hands rest still in her lap, her legs are motionless against the raised footrest.

Two years ago, Zavenelli, 60, was diagnosed with Amyotrophic Lateral Sclerosis, a progressive neurodegenerative disease that robs its sufferers of movement, speech and eventually breath. Baseball player Lou Gehrig and physicist Stephen Hawking made it famous. Only about two people out of 100,000 are diagnosed with the disease each year and most are given a life expectancy of two to five years. There is no cure.

For Zavanelli, who taught last year from a wheelchair and plans to return to the classroom this fall, living with ALS is not much different than facing the rigors of an Ironman triathlon.

“You just deal with things as they come up,” she says. “There are so many things in an Ironman you can’t control. So if you get a flat tire or the wind comes up you just change your strategy. You deal with it. You have to basically get over yourself, get over the ‘oh, poor me.’”

Zavanelli came to UC Santa Cruz in 1994. She’d worked in hematology, oncology and neurobiology labs — ironically studying nerve muscle junction failure.  At Santa Cruz, she taught a variety of courses, including the popular classes on female physiology and the biology of AIDS.

Zavanelli also was a key researcher in a 2007 study published by Terrie Williams, UC Santa Cruz professor of ecology and evolutionary biology, which looked at how seals, dolphins and whales protect their brains from conditions of low oxygen while swimming underwater for long periods of time.

Zavanelli developed the lab techniques used to measure the amounts and types of oxygen-carrying proteins, called globins, in animal brains.

Meanwhile, Zavanelli also began doing triathlons, contests that include swimming, biking and running. She says she thought they would be a fun challenge.

Her first race, one day before her 40th birthday, was not auspicious. Zavanelli was kicked in the head during the first moments of the swim and proceeded to swallow huge gulps of seawater. She did the rest of the swim breast-stroking and coughing, then rode off on her commuter bike surrounded by racers on much sleeker equipment. She jogged through the run, thought about quitting but willed herself to finish and, a few days later, signed up for a triathlon training clinic.

“I like challenges,” says Zavanelli. “I’ve never done anything that came easily for me.”

Zavanelli went on to enter 14 more Ironman-length triathlons, completing all but two.  During one race she was pulled off when her heart started beating wildly and her blood pressure fell. The second time, a hip and knee injury caused her to miss the halfway cutoff point.

“I always say, “I’m just too stubborn to quit,” she says.

She also ran a number of marathons, including a 2011 half-marathon in Antarctica — a wild and chilly race tradition at the McMurdo Station, which was chronicled by the New York Times. She was fit and strong.

In 2013, however, Zavanelli began to notice something was wrong. While training for an Ironman triathlon in Idaho, she began tripping and then falling. She sought help and was diagnosed with advanced osteoporosis, then a lumbar spine compression — none of which were born out by subsequent tests. Finally, she was sent to Stanford where a neurologist told her she had a 50/50 chance of her symptoms being related to ALS.

“I was hoping for a brain tumor,” Zavanelli says with a quick smile.

At first, Zavanelli said she was angry at the diagnosis and then frustrated.

She’d see joggers and want to shout at them to enjoy every minute of their exercise. She’d see people smoking or eating junk food and get upset at how they were abusing their precious health.

“I wanted to say, how could you do that to yourself? You could cut off my leg if that meant I could move again,” she says.

She also grew tired of fighting her insurance company to get the equipment she needed as her strength failed.

But athletic training and what she calls her Midwestern sensibility took over. “I said, you can sit around being sad and angry or you can just get over yourself and do what you can,” she says.

“I came to the conclusion that being angry and sad takes way more energy than being happy.”

Sitting in her sunny living room, Zavanelli said she is looking forward to returning to the classroom “as long as my voice holds out.” (One of ALS’s side effects is the loss of the ability to speak.) She also is part of an ALS research study into the relationship between gut biomes and neurological diseases. Not for herself but for those who may find themselves with the same diagnosis in the coming years, she says.

She spends her days watching television, reading emails, doing as much physical therapy as she can, and hanging out with her two dogs, a Samoyed and a husky named Karhu and Merlyn. Aides see to her needs. Her husband is Dan Costa, UC Santa Cruz professor of ecology and evolutionary biology.

“I think I’ve been fortunate in so many ways,” Zavanelli says after a quick phone conversation with a friend who plans a visit the next day. “I’ve done a lot in my life.”

She’s competed in athletic events on three continents, traveled around the world, done important research, met wonderful people, made close friends, and exposed thousands of students to the world of science.

 "That’s why,” she says, “I can’t say ‘poor me.’”