Bingham coach fighting new foe

Diagnosed with ALS at 27, Whetzel still teaching the Miners

By Amy Donaldson
Deseret Morning News
At first, Heather Whetzel thought she was just getting old.
"I couldn't jump very well," said the Bingham assistant volleyball coach. "We'd play pepper and I would see the ball, but I couldn't get to it."
"We teased her about getting old," said Charon Mason, another Bingham assistant. "Our kids started teasing her, too."
The youngest of four children, is no stranger to teasing and took the ribbing — and the new limitations — in stride.
Her inability to jump was no laughing matter, though.
"It got to be really embarrassing," the 27-year-old former UVSC player said. "I didn't know what was going on. When I started having trouble serving, I noticed twitching in my legs."
She began seeing doctors, enduring medical tests. Her husband, mother and siblings feared the worst.
"When we put her symptoms in (webMD.com), ALS always came up," said her husband, Jeff. "I was nervous about it from the beginning."
Heather and some of the doctors dismissed the idea because the typical person suffering from Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease, is a 55-year-old man. They thought it might be MS or a thyroid problem. As doctors tested and retested, Heather's life began to change.
"I couldn't pick up my toes, which caused me to trip," she said. "Every week I was getting worse and worse ... I had a lot of tests and they all came back clean. They were really puzzled."
By the end of the school year, Heather could barely walk without assistance and by June the disease had done enough damage to her neurons that doctors could finally say with certainty that Heather had ALS, a progressive and eventually fatal neuromuscular disease that attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord.
Heather was told most live a few years after diagnosis.
"We felt calm," said Jeff of the couple's reaction to the news five months ago. "As crazy as that sounds, we both felt like it was going to be OK. There was no panic or woe is me. We got into the car and Heather said, 'I kind of feel guilty about this, but I feel OK.' We felt like we should be more devastated, but we both had an enormous amount of faith that she would be OK."
Heather's friends and family are constantly moved but not surprised by her attitude and her ability to live her life just as she always has.
At first, she believed she had to resign her position as an assistant coach. The disease was already sapping her strength and walking was becoming a luxury for the computer technology and business law teacher. She told head coach Melissa Glasker, who accepted her decision to quit at first.
"It was really devastating," Glasker said. "It hit me really hard. I've totally grown to love Heather, and when I thought about what her life could be like ... It killed me. Life just takes turns you're not prepared for. I had no idea it would be something like this."
Glasker thought about Heather's ability to bridge the gap between Bingham's players and Glasker in her first year of coaching at the school. She thought about her love for volleyball, her knowledge of the game and the relationship she had with the players.
"So when I thought about all of that, I called her back and said maybe this will be your last year coaching, but why not go out with a blast?" Glasker said.
Heather was relieved to be called back into service. Teaching a game she'd loved all her life gave her energy she didn't know she had. It also showed her players that you don't sit on the sidelines when the game gets harder than you ever expected.
"She never gives up," said senior outside hitter Camrie Copier. "She just never stops trying. You watch her and everything she does and it's just inspiring."
The players credit Heather with helping them adjust to a new coach, as well as day-to-day teenage stresses.
"She was always the one you'd go talk to if you were having a bad day," said middle hitter Megan Marks. "It puts things in perspective to be around her. Life and friendship is more important than anything ... It's a constant reminder that life can change in an instant. We're so lucky to be in the position we're in and to have the abilities we have."
The girls said she pushes them, even when she's teaching from a wheelchair.
"She can't get up there and do everything anymore," said Alicia Nelson. "But she works hard and what she does everyday pays off."
Her players also believe she will eventually beat the odds and ALS.
"She's really active and she's really positive," said outside hitter Cami Hymas. "She's still taking all of the time out of her day to come and help us. Even when she doesn't feel well, she's here teaching us."
They only have to glance toward the sideline to see that anything is possible.
"She's one of the girls," said Copier. "It means a lot that she would just come to our games. I can't imagine volleyball without her."
Glasker said Heather hasn't complained once despite losing more and more control of her muscles. Even when she fell at a West Jordan game, she just laughed and joked about it as the players helped her to the bench.
Heather's mother, Vicki Whetzel, said Heather's confidence about beating ALS gives her faith that it's possible.
"She's so strong," Vicki said. "She's always been very motivated ... When she told us about it, we were so devastated. She was actually giving us encouragement."
Heather even makes her siblings laugh by demonstrating things she can't do anymore, like sit up. It doesn't surprise Vicki that Heather is more concerned with those around her than she is her own comfort.
"When Heather was just a little girl we gave them each some money (while on vacation) to spend," she said. "There was an older lady begging on the street, and Heather used her money to give it to the lady. She just has that tendency; it's important for her to do for other people."
Heather has been most heartened by how others have responded to her diagnosis. The team and her family helped her raise money for a stem cell treatment she needs in the Dominican Republic. They've pledged to continue to help her financially with events like the recent golf tournament, and the school has an account in her name to help her with medical expenses.
"I have to kick it's butt," Heather said. "I can't stop living my life."
She said it's the seemingly insignificant things that bring home how much her life has changed.
"It's the little things that get irritating," she said with a smile. "I can't turn over in bed, or sleep on silky sheets. I can't pop up out of my seat at a volleyball game. My toes curl when I'm putting on my shoes. It's just little things that are the most irritating."
And when she is too tired to walk, she finds strength in how people have rallied around her.
"Just seeing people come together for me, it's amazing," she said. "I don't even have to ask. It does your heart good."
When asked how she stays so positive, she just smiles.
"It's how you cope," she said. "I have so much on my plate, I can't let little things get me down."


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