[Noozhawk’s note: First in a two-part series. Click here to read the second story, about the Muscular Dystrophy Association and its services.]
A year and a half ago, Hal Finney didn’t know what ALS was.
At an appointment with his doctors, he was told it was a worst-case scenario possibility as they worked toward a diagnosis of his symptoms. His wife, Fran, said “oh, no” on the other end of the phone conversation.
“What? What’s ALS?” Finney recalled asking. “And she said, ‘It’s really bad, you don’t want to have that.’”
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The progress of amyotrophic lateral sclerosis, or Lou Gehrig’s disease, affects motor neurons in the brain and spinal cord, which control voluntary muscle movement. Muscles begin to get smaller when they don’t receive signals from the failing motor neurons, and people in the later stages of the disease can become completely paralyzed, according to the ALS Association.
About 30,000 Americans have ALS at any given time and the average age of diagnosis is 55, according to the association.
Finney was diagnosed in August 2009 at age 53. The progression of the disease is different for everyone, so there was no guessing what condition he would be in a year later.
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The diagnosis came a week after the Finneys’ 30th wedding anniversary. They met at CalTech, got married right after graduation, and moved to the Noleta area in the early 1990s. They have two children: Erin, who lives in Denver, and Jason, who lives with them and helps out around the house.
On the mantle in their living room, there are pictures of their wedding, their two children, Fran’s plaque for placing first in the State Street Mile, Hal’s lifetime achievement award for his work, and the plaque for their team’s fundraising effort at last year’s Santa Barbara International Marathon.
The fundraiser, which raised money for the MDA’s local ALS research, was Fran’s brainchild.
Both Finneys are runners, and Hal had been training to get a Boston Marathon-qualifying time when he was diagnosed. Instead of racing across the finish line last year, he walked the last two miles with the assistance of a cane, with Fran at his side and surrounded by other members of the South Coast Fights ALS team.
They’re fundraising again this year, at the Nov. 6 Select Staffing Santa Barbara International Marathon/Half-Marathon, but Hal will be crossing the finish line in a wheelchair.
Hal’s speech is slower and more hoarse-sounding than it was a year ago, but he really lights up when he talks about two things: Fran, and his work.
They love running together, which they’ve refused to entirely give up even though Hal will never run again.
Now, when the couple goes on a run down the familiar bike paths near their home, Fran pushes Hal in his wheelchair. It’s their time to be together and talk, just like they used to, Hal said.
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Saying goodbye to more active pursuits was inevitable, but it came sooner perhaps than they thought. On a December ski trip, Hal’s former prowess helped him navigate the beginner slopes with grace, although getting on and off the lifts proved trickier.
“You’re losing capabilities as time goes on, which is, you know, hard, but you have to accept it,” Hal said. “So there’s gonna be last times you do a lot of things, but you’re not always aware of when it’ll be the last time. That time, I knew it was coming.
“It’s kind of nice in a way that you know it, you mentally say goodbye as you enjoy it. So that makes it a little easier.”
Now, walking even a few steps is extremely difficult for Hal, but he still manages to get in and out of his wheelchair and car.
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Hal continues to work and get around the house — or take the bus to do research at UCSB — in his motorized wheelchair.
Casually sipping coffee and tapping on his iPad, Hal is still very much a “cypherpunk” software programmer, although his ridiculously fast typing speed has decreased as some fingers “don’t cooperate” anymore.
Cryptography attracted him as a match for his top-notch technical skills and the political implications that interested him. He was — and is — a developer for PGP Corp., and was one of the first people to work with encryption software. He initially spent his nights writing code for free since he believed in the cause.
“PGP crypto software is used by freedom fighters and journalists all over the world when they go into a Third World country,” he said. “(They use it) to keep their notes confidential if their laptops get confiscated or if their e-mail is eavesdropped. They use our software to keep their data private.”
Hal received a lifetime achievement award this year for his work, which contributed to the creation of the e-mail encryption field, but he is by no means done with programming.
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Meanwhile, Fran works a few hours a day as a physical therapist and takes care of Hal’s medical needs. He can’t help out around the house anymore either, and laments that Fran has taken on the extra work. She, of course, says it all is “hugely worth it.”
The Finneys have remodeled their home to put in a huge roll-in shower and large closet to help Hal stay independent as long as he can.
“You think about not being able to walk, not being able to run ... yeah, I miss that, but really with the wheelchair I can get around pretty well,” he said. “Fran takes me out on the runs, too ... So I miss things, but probably the hardest is the small day-to-day taking care of myself.
“Pulling on a shirt, pants, you don’t even think about it, it takes 10 seconds. For me now, it takes a long time. From brushing my teeth to getting milk out of the fridge is just ... a big challenge.”
For Fran, the hardest part has been acceptance, and giving up the future with Hal she had been imagining.
“Even before we knew anything about how fast or slow, just knowing that what I always assumed was going to be our future wasn’t going to be our future,” she said. “And that was hard, I didn’t want to give that up.”
She didn’t want to believe it for a long time, but is over that now.
“So now, I’m just hoping for a future with Hal, and it doesn’t matter what that future is,” she said. “If he’s there, it’s a really good future.”