Carey Hall’s mind remains as sharp as ever, so he knows the outlook is grim.
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The muscles in his tongue are failing him, and he can’t express his thoughts as clearly as he could before his diagnosis nearly eight months ago. His hand muscles are deteriorating, too, meaning his days working as the refueling specialist for Sarah Fisher’s IndyCar pit crew are coming to an end.
Hall has ALS, a destructive disease without a cure.
There aren’t even that many doctor visits, because there’s just not much they can do to slow the disease’s deadly advance. And there certainly aren’t any easy answers; what do you tell an 11-year-old boy who says he doesn’t want Christmas to come this year because his dad probably won’t be able to speak to him by then?
”I remember the doctor saying to hope I had cancer,” Hall says through slurred speech, a common symptom of the disease. ”We know so much more about that. Seventy years after Lou Gehrig had it, no medication, no treatment.”
The one thing Hall has is plenty of support.
Last Saturday’s race at Chicagoland Speedway may end up being Hall’s final race as a member of the pit crew. So Fisher, the team’s driver and team owner, decided to surprise Hall by putting the logo for the family’s ALS awareness website, careyshope.com, on her race car.
”We’re a family, and we support our people 100 percent,” Fisher said. ”This is something really little in the big picture, but I’m hoping that by doing this, that our fans will go to careyshope.com and support us.”
Amyotrophic lateral sclerosis – often called Lou Gehrig’s Disease, after the baseball star who is believed to have died of it in 1941 – causes degeneration of nerve cells in the brain and spinal cord, leading to poor muscle control and even paralysis.
According to the ALS Association website, half of all people affected with ALS live at least three or more years after diagnosis, 20 percent live five years or more and up to 10 percent live more than ten years.
”It’s destructive,” says Hall’s wife, Carla. ”You try to be hopeful, but you’re somewhat hopeless. There’s nothing out there. And you live each day absolutely second to second. Scary.”
The 40-year-old Hall began having muscle problems near the end of last year. He spent most of New Year’s Eve in the hospital for tests, then was diagnosed with ALS a few days later.
”I was fine in December. I woke up in January with ALS,” Hall says, his voice quivering. ”I never thought about it.”
Hall told Fisher that he would stay on her pit crew as long as he could. During a recent race at Mid-Ohio, Fisher said the team gained two spots with a fast pit stop.
”Carey doesn’t hold up the program whatsoever,” Fisher said.
But as his muscles continue to deteriorate, he won’t be able to perform his duties much longer.
”I’ll work as long as I can,” he said. ”But mentally, I’m prepared for the day.”
Hall also owns Hall’s Motorsports Refinishing, Inc. in Indianapolis, which paints race cars for several teams. He had a special design on his own helmet for Saturday’s race, bearing the names of fellow ALS patients.
Fisher, who also has participated in breast cancer awareness efforts, was surprised by the lack of mainstream attention to ALS.
”There’s obviously a really big need for that,” Fisher said. ”Hopefully, this can help raise awareness that they’re really great, talented people out there that need help. It’s not just Carey, it’s thousands of people. Carey is special to us, but this is something that needs attention.”
As part of their awareness effort, Hall and his family are trying to drum up attention for an Oct. 2 ALS walk in Indianapolis. But truth be told, he’d rather be at the racetrack.
”Homestead is that same weekend,” Hall said of the season-ending race on Oct. 2. ”I want to be at Homestead.”
For now, Hall is trying to appreciate every last moment and laugh whenever he can. He jokes that having his tongue not able to keep up with his thoughts ”keeps me out of trouble.”
”Some people don’t have much to look forward to,” Hall said. ”I’ve been blessed in a lot of ways. You surround yourself with good people …”
With that, Hall’s voice cracks and he doesn’t finish the sentence. Sitting by his side, his wife sobs softly.