Deb Sarkisian was living a wonderfully charmed life, retired at 54 years old after a successful career at Honeywell Aerospace in South Bend, she and her husband moved to Florida where she finally had time to pick up a hobby, which she promptly did.
She latched onto the sport of pickleball, and she became a phenom.
There was something that clicked as Sarkisian wielded a paddle on a miniature-sized court, and she quickly catapulted to a high-level player, though she downplays her 4.5 skill rating on USA Pickleball’s 1 to 5.5 scale, with 1 being a beginner and 5.5 pro.
Either way, Sarkisian was talented enough to earn a pro-level certification to train others in the sport. She gave formal lessons, tips on the sidelines and became the president of an 800-member pickleball club. She made so many amazing friends in that community, they became like family.
There was camaraderie, tournaments and heated competition. Some days playing once wasn’t enough for Sarkisian, so she’d return to the club as evening fell for a second go round.
“But that was before the diagnosis,” Sarkisian said this week. “That was a day I will never forget.”
Deb Sarkisian, who spent her life in South Bend, is now retired living in Florida battling ALS. “What’s not to be thankful for?” she says.
It was May 20, 2022, when Sarkisian’s doctor at the Mayo Clinic — after running countless, agonizing tests that involved needles being poked into her body and having ruled out every other neurological disease — told Sarkisian she had amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease.
There is no way to sugarcoat an ALS diagnosis. It is always terminal, but there is also no way to know how quickly the disease will progress. ALS causes nerve cells in the body to break down, which reduces function in the muscles they supply. For some, the progression happens quickly, 18 to 24 months. For others, it can be decades.
When Sarkisian got her diagnosis, she didn’t know much about the disease other than the documentary, “Gleason,” she had watched years before that followed the life of former NFL player Steve Gleason as he battled ALS. She watched the disease progress and take so much away from Gleason.
In just two years, the disease has also taken so much away from Sarkisian, including the sport she loved. Pickleball is behind her now.
Deb Sarkisian with her husband, Rick. Sarkisian earned a 4.5 skill rating in USA Pickleball’s 1 to 5.5. rating system. She downplays just had good she was at the sport, says her daughter Kailey Sarkisian.
On Tuesday as Sarkisian, who was born and raised in South Bend and spent 54 years of her life there, talked to IndyStar on a video chat, she sat in a wheelchair in her Florida home with a view of a beautiful canal, where boats pass by and palm trees sway.
Most of her body, she cannot control. Her right hand is the only part of her body below the neck that has not completely failed her.
Still, some mornings, she wakes up and her right hand won’t cooperate, either. Sarkisian cannot drive, has in-home care for showering and bathing, getting dressed and doing her hair.
“Imagine. It’s so hard to think of yourself sitting in a chair for 12 to 14 hours a day with very limited range of motion,” Sarkisian said. “I mean, I can’t do anything, basically, for myself. I can motorize my chair around, but I can’t leave the house, I can’t …”
She cannot do most of what she used to be able to do.
Some would say Sarkisian’s charmed life is behind her. That is not how she sees things at all.
She says she was “given” ALS, that it has been a gift, that it has made her stop and breathe and soak in the Florida air and appreciate the people who have surrounded her with love and support.
Deb Sarkisian (right) with her daughter, Kailey, on her wedding day. Since her ALS diagnosis, Sarkisian said she has learned to “stop and smell the roses.”
“It is progressive, and I think that’s the beauty of it. You don’t get hit with it all at once. You have a chance to adjust daily,” Sarkisian said. “And that’s what you have to do is just stay present and don’t look back and really don’t look too far ahead, just kind of stay in the moment and appreciate the day and take time to smell the roses.”
‘I don’t believe you’
The symptoms started subtly and evasively about three years ago when Sarkisian was taking her daily walk with her dog around the neighborhood and her left foot began to drag. The next day, it didn’t drag. Then a few days later, the drag was back. Sarkisian shrugged it off.
Then, one day, she started feeling tired after those walks which soon turned to fatigue after those walks. Then one day, Sarkisian stumbled. Not long after, she tripped. Then she tripped again. Then she took a fall. Then she fell again.
This wasn’t normal for Sarkisian. She knew something was wrong. She and her family started searching for answers. It took what seemed like forever to get them. It took three neurologists before Sarkisian got her ALS diagnosis. And when she did, she fought back.
“I told the neurologist, ‘I believe you’re wrong. I don’t believe you. I’m not buying into it, and I’ll see you when I reverse,'” Sarkisian said. “And you know what? I truly believe that this thing is going to turn around whether it’s through positive thinking, through drug intervention or a combination of the two.”
So far, the disease is putting up its own fight.
“My journey in this illness is just the daily loss,” Sarkisian said. “That’s the hardest part is the progression and the recognition of progression.”
Kailey Sarkisian with her mom, Deb, who is battling ALS.
As Sarkisian has battled ALS, her daughter, Kailey, has been by her side putting up a fight of her own through research and fundraising, which is a crucial piece of the ALS journey. Wheelchairs, accessible vehicles, treatments and medications are expensive, and, in most cases, insurance does not cover.
Kailey, a local beach volleyball player, will help put on a sand volleyball tournament fundraiser for her mom at iBeach31 Saturday in Westfield, which will commemorate the 10th anniversary of the ALS Ice Bucket Challenge.
“I feel like I’m one of the lucky ones. My mom, she was always there when I needed her,” said Kailey, who lives in Westfield. “One of the things that is the most amazing to me and inspiring about my mom is her ability to maintain that positivity even through this awful diagnosis.”
Before players take the courts Saturday, Kailey has a message she wants them to hear. Sarkisian wants them to hear it, too.
“I want to remind everyone to appreciate the fact that they can be out there playing a sport, doing something they love, running around, getting exercise,” Kailey said, “because some people don’t have that gift, and it truly is a gift.”
While Sarkisian said she tries to say positive, there are days that are tough. She always turns her attention to the here and now.
“You just have to be thankful for the present and thankful for things that you have,” she said.
Like her Florida pickleball community who has supported her any way she needs — cleaning the house, helping prep meals or coming by just to chat over lunch.
“This diagnosis does take a village. It truly does and I’m blessed to have found that village,” said Sarkisian. “I believe that all things happen for a reason. I’m a firm believer of that and I believe that everybody who is in my life was put here for a reason.”
Just as Kailey’s volleyball community is in Westfield supporting her hundreds of miles away. Sarkisian wants those people to know she is thankful for them, and she is OK.
Deb Sarkisian with her daughter, Kailey. “I’m one of the lucky ones,” Kailey said. “She is my best friend.”
“You can exist daily in a miserable state, or you can choose to be happy,” she said. “It’s been a good journey. It’s really slowed me down in terms of taking time to see and hear and do some of the things that you normally wouldn’t do, that you take for granted.
“What’s not to be thankful for?”
Join Deb Sarkisian’s ALS fight
Sign up to play the ALS Ice Bucket Fundraiser at iBeach 31 in Westfield 9 a.m. Saturday, a coed quads beach volleyball tournament
Create an Ice Bucket Challenge: Bring your own bag of ice to iBeach 31. Buckets will be provided. The team/individual with the best ice bucket video will win a prize. If you can’t be there in person, e-mail your ice bucket challenge video to katie@ibeach31.com before 9 a.m. Saturday.
If you’re not playing in the tournament, come out to enjoy the festivities, watch some volleyball and go for raffle prizes. A Union Jack food truck and mobile bar will be on site.
Donate to Sarkisian’s GoFundme link: https://gofund.me/06f8d765
Follow IndyStar sports reporter Dana Benbow on X: @DanaBenbow. Reach her via e-mail: dbenbow@indystar.com
This article originally appeared on Indianapolis Star: ALS: She retired at 54, became a pickleball star then the disease hit
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Publish date : 2024-09-04 21:46:00
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