Originally written by Lori Gilbert for Recordnet.com
He can’t swipe an ATM card in and out of a machine fast enough to use it, but his blue eyes that would have made Paul Newman jealous light up when he speaks of showing off his wife, Gina, at his upcoming 35th high school reunion.
There’s no manual for living with amyotrophic lateral sclerosis, or Lou Gehrig’s disease, but DeBartoli’s approach is to live his life to the fullest.
That means showing up at the ALS fundraiser in Tracy where he lives with Gina and her two children, Savanna, 9, and Brandon, 8, in a shirt that reads, “This is what ALS Looks Like.”
A snapshot of last week includes his drive to Sacramento to testify for a second time on behalf of the Right to Try bill that would allow patients like himself to use drugs that might help them before they’ve gone through the full study process required by the Food and Drug Administration; coaching the 9- to 11-year-old girls’ basketball team, which had its first game Saturday, and stopping along Interstate 680 to help people who’d been involved in a car accident.
Retired after 28 years as a firefighter because of bad knees, the 53-year-old is exuberant and laughs easily. He also cries easily, something the one-time college basketball player at Southern Illinois University finds appalling.
“I don’t know if it’s the disease or the medications, but I blubber all the time,” he said.
There is no specific medication for ALS. He takes antidepressants and something to help him sleep and a new prescription believed to help late-stage ALS patients breathe easier. He’s not there, but doctors told him taking the pills now won’t hurt him.
There is an experimental medication DeBartoli is hoping to begin taking in a few months. There are lots of drugs that might help him, he said, which is why he testified on behalf of Right to Try bills proposed by State Sen. Jeff Stone and Assemblyman Ian Calderon that would allow patients, with advice from their doctors, to try new drugs after they’ve been proven to cause no harm.
“I said at the Senate hearing that if Lou Gehrig was here and saw there hadn’t been any progression, he would be pissed,” DeBartoli said. “It’s been 75 years since he made his speech, ‘I’m the luckiest man on the face of the Earth,’ and there’s been nothing.”
Not nothing, exactly. Last summer’s ice bucket challenge raised more than $220 million to fight ALS and raised awareness.
“I was thinking, awareness? I don’t want awareness,” DeBartoli said. “I want money, lots and lots of money to cure the disease. Now I know awareness means more focus on helping, not just patients but caregivers, because it’s such a debilitating disease to have.”
A progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, ALS strikes about 30,000 people a year in the U.S., according to the ALS Association. Life expectancy is two to five years, although some live much longer. There’s no known cause, no known cure. It is difficult to diagnose.
DeBartoli first felt twitches and numbness in his left hand in fall 2012. When a doctor at the University of California, Davis, told him in early 2013 it might be ALS and he’d need more tests, DeBartoli didn’t have them done.
“I was scared,” he admits.
Eventually tests and more tests and more doctor visits to various places ended with a confirmed diagnosis in July at Stanford.
“It’s terrifying,” DeBartolo said.
But the native of Illinois, who moved to California in the mid-1980s to pursue a career in firefighting, hasn’t stopped living.
“People who are terminal still have value in their lives,” he said.
Tracy native Gina DeBartoli, who met him after he’d learned he likely had ALS, married him in March.
“A lot of people said, ‘Are you serious?’ she said. “I love him and I’m going to be taking care of him whether we’re married or not. You love who you love.”
At the Tracy ALS fundraiser put on by Eric’s Vision, a foundation started by Shonta Scoggins in memory of her late husband, DeBartoli met Dee Norris, widow of neurologist Forbes Norris, whose Forbes Norris Research and Treatment Center in San Francisco has specialized in treating ALS for more than 25 years.
A doctor there told DeBartoli his ALS seems to be progressing slowly.
“I was elated,” Gina DeBartoli said. “Mike kept a level head.”
He’s heard too many opinions from too many doctors to hangs his hopes on this pronouncement, she said.
“When you face your own mortality and you have time, it’s weird,” Mike DeBartoli said. “There’s good things and bad things. The bad thing is it’s a slow process. I’m supposed to be a rough and tough fireman, and your muscles start fading away. Most of the time I wear long-sleeved shirts to cover my arm. On the other side you still have time to do things. You have time to see people. All the grudges I had before, I have no grudges anymore. I forgive everybody.”
He has faith.
“This can’t be the end,” he said.
And until the end of his time here, he’s making the most of it. He and Gina are going to Europe and taking his 17-year-old son from his first marriage. He plans to visit New Orleans, New York and Washington, D.C. His daughter will graduate from the University of Nevada, Reno, next year.
On their honeymoon to Cabo, Mike and Gina attended a timeshare presentation in order to get a free massage. When Mike said he didn’t want to buy a timeshare because he had ALS, the salesperson said, “Well, you can still get it and leave it as a legacy for your kids.”
Testifying at the Capitol, Gina DeBartoli posted on Facebook, is his legacy.
Putting his life on the line as a firefighter for 28 years is his legacy. Showing his children how to courageously face his mortality is his legacy.
That’s how those who know him will eventually remember him. Along with those piercing blue eyes.
