There are days when Andrea Arison wonders how her older brother manages to keep a smile on his face.
She wishes that, just once, Jeff Arison would complain about the pain he feels or about how he has to depend on people more than he wants. But that’s not the life Arison chooses to live.
At 33, the former Crystal Lake South defensive tackle is confined to a motorized wheelchair, having lived with amyotrophic lateral sclerosis (more commonly known as Lou Gehrig’s disease) since 2011. There are bad days. Days when Arison feels out of sorts and when he feels like he woke up on the wrong side of the bed.
But focusing on the bad days, Arison says, does no one – himself included – any good.
“There’s two choices: You can either feel sorry for yourself and have a pity party or you can do something about it,” Arison said. “I think I’m where I am today because I have been so positive.”
Outside of the wheelchair that gets him around, Arison remains the same person he’s always been. He’s in the middle of managing through a baseball season on the video game “MLB: The Show”. He oversees five fantasy football teams. He watches plenty of baseball, tracking his beloved Tampa Bay Rays thanks to the MLB Extra Innings TV package.
But there are times when living with ALS gets to Arison. Like when he needs help getting out of bed, getting dressed or finishing a meal on his own. It’s then when sister Andrea, 13 months younger than Jeff, wonders how he holds everything together.
“He handles every day with grace and dignity and humor,” Andrea said. “Where a lot of us would want to throw our hands up and complain, he never complains.”
• • •
Jeff Arison still isn’t used to the minivan.
He misses the Nissan Tundra he drove around St. Petersburg, Fla., where he lived for 10 years, working 60 to 70 hours a week as a restaurant manager at Dan Marino’s and the Green Iguana. He loved his truck, which seemed to fit perfectly into his larger-than-life personality. But as his health started to fail him, Arison’s mode of transportation changed. First to a car, then to the red minivan that’s parked in his mother’s driveway, complete with Cubs and Rays window stickers and the handicapped parking tag that hangs from the rearview mirror.
Part of the worst part of living with ALS, Arison says, is remembering specific dates. Like Dec. 24, 2011 – the day Arison learned he would no longer be able to drive. But ask Arison what he remembers about Oct. 12, 2011, the day a group of doctors walked into a room at the Mayo Clinic and told him he had ALS, and things aren’t nearly as clear.
ALS is a disease that causes muscle atrophy and eventually leads to difficulty speaking, swallowing and breathing. There is no known cure.
“It was like Snoopy’s teacher was talking to me,” Arison says, adding the sound effects anyone who has seen Charlie Brown cartoons immediately recognizes.
Until that fall day two years ago, Arison wouldn’t allow himself to consider other options.
It started in his left foot.
Out of the blue, Arison, then 31, could no longer lift his left ankle high enough to manage another step. His left leg would go limp. By that point, he had moved back to Crystal Lake, admitting that something wasn’t right with his health.
A doctor at a local walk-in clinic told Arison he likely had a pinched nerve and prescribed a combination of ice and ibuprofen. When Arison fell on his way to work, he consulted another doctor, who suggested Arison see a neurologist. When the neurologist told Arison he wanted to run a biopsy, Arison decided to get a second opinion.
He ended up at Chicago’s Loyola University Medical Center, where he underwent a gamut of blood tests and a electromyogram test. When the results came back inconclusive, the specialist suggested Arison make a trip to the Mayo Clinic in Rochester, Minn.
Arison wanted to believe he still had a pinched nerve. He refused to consider other options, staying away from Google, which he feared would bring out the truth.
“I just didn’t want anything to do with it,” he said. “I was just looking for the pill that would make be better.”
After four days at the Mayo Clinic, Arison knew something wasn’t right. That’s when doctors informed Arison he was one of the 5,600 people diagnosed with ALS each year in the United States. And that’s when the “Snoopy teacher” voices started.
“I didn’t even hear what they said,” Arison said.
• • •
The day Arison couldn’t stand on his own is when ALS got real.
The condition that started in his left foot moved to his right. Arison soon needed a cane to walk. Six months after that, his conditioned worsened to the point where he needed a wheelchair to get around. Another six months passed before he transitioned into the motorized wheelchair he uses now.
Slowly, the man Andrea Arison calls “Mr. Independent” was having to depend on others more than he wanted. Suddenly, routine daily tasks required help.
“It’s almost like you lose your dignity,” he said.
Andrea, who lived with Jeff in Florida and who now travels back and forth for regular visits, could tell that ALS was starting to take its toll. On the surface, Jeff remained gregarious. Deep down, Andrea knew, he was struggling.
“I see that as one of the biggest hardships for him,” Andrea said, “just having to depend on other people.”
Suddenly, the former athlete who had picked up golf after high school, who had played intramural basketball and beer league softball, was forced to adjust to living with a disease few of his friends even understood.
Arison had seen a story on TV about former New Orleans Saints safety Steve Gleason, who, like Arison, was diagnosed with ALS in 2011. Gleason, a former undrafted free agent, had spent eight years in the NFL, first with the Colts and the Saints before retiring in 2008.
Looking for an outlet, Arison emailed Gleason, trying to understand the road he faced ahead. Two months later, Gleason wrote back.
The email started this way: Jeff … Sounds like we’re in this journey together.
In 207 words, Gleason conveyed how difficult life had been since he was diagnosed with ALS, a disease he called “brutal” and “terrible.”
“I have moments where I look at myself and see myself as if I’m in some tragic movie or living someone else’s life,” Gleason wrote. “I don’t often have moments where I’m not thinking about how this happened, how to heal, or how this can be real.”
Over the course of the email, Gleason encouraged Arison to live in the moment, suggesting he focus on the things he can do rather than the things he can’t. The message, Arison knew, was a road map for how to handle the manner in which he lives.
At the end, Gleason signed the email with the words “No White Flags”.
That’s the life Arison wanted.
• • •
Over the past two years, ALS’s progression in Arison’s case has plateaued. For a year now, the 6-foot-1, 350-pound Arison, who worked as a bouncer and who “held his own more than a few times” as a student at the University of South Florida, has maintained his weight.
It’s a sign, his doctors tell him, that he is managing living with ALS the best he can. Outside of check-ups he has every three months at the Les Turner/Lois Insolia ALS Center at Chicago’s Northwestern Memorial Hospital, Arison maintains as much of a normal existence as he can. He is convinced that a cure for ALS is coming and that his time in a wheelchair is only temporary.
He’s long moved past the illusion of his 20s that he is invincible and that nothing can take him down. Ask him what he’s learned about himself over the past two years and he doesn’t take much time to respond.
“I’m a tough [SOB], I’m a good guy and people care about me,” Arison said.
Arison concedes there are days when he needs help. But, like he did immediately after he was diagnosed, he asks that people treat him like they always have. Six days out of seven are good days: days when the sun is shining, when he’s able to get out and do things, days when he can take in a Cubs or Rays game on TV.
His support team – made up of his mother, three sisters and a host of friends from Crystal Lake and Florida – keep him going. Like Jeff, Arison’s family has become accustomed to the life they live. Andrea says when people stare at Jeff in his wheelchair in public, she feels like screaming that he’s living with ALS.
But that’s when she realizes it doesn’t do anyone any good. And as she has learned from Jeff, she focuses on the positives.
“My mom kind of jokes that we all have [ALS] because it’s our life and it’s the life we’re all blessed to have,” Andrea says. “We’re blessed to all be here, and we’re all blessed to be with one another. The best part is that [Jeff] is still himself.”
Arison has seen to that, relying on humor to keep things in perspective. The only difference?
“I just sit a little lower now,” he jokes.
Arison depends heavily on social media, FaceTime and text messages to communicate with his friends, amazed by the way people have rallied around him. He learns lessons every day: to live in the moment, to appreciate each day for what it is and to take nothing for granted. Each day, Andrea receives messages telling her how much Jeff has inspired others.
“I think everyone takes things for granted until they’re faced with something like this. You don’t realize what you’ve got until it’s gone,” Arison said. “You have to count your blessings and know something can be taken away as quickly as it was given.”
No white flags.