Debbie Sheehan was in the Air Force when she lost her vision. It was in 1991, Desert Storm. She wouldn’t understand what happened to her until five years later.
“I called my parents and said, ‘I’m coming home, but I’m blind,’” she said, with a laugh that’s allowed by insight she’s acquired since being that scared 25-year-old.
She was diagnosed with optic neuritis, and regained her vision after six months. She thought it had just been stress from the war. It wasn’t until she several more symptoms appeared that she was diagnosed with Multiple Sclerosis, or MS.
MS causes nerve damage that disrupts communication between the brain and the body. The way Sheehan puts it, it’s like a straw with a hole. It doesn’t matter how hard you suck, you just can’t get the liquid through it right.
MS can last years, or a lifetime, and has a variety of symptoms that vary from person to person, including vision loss, pain, fatigue and impaired coordination. There are treatments to reduce or control symptoms, but no known cure.
Sheehan said when she was diagnosed, it felt like a death sentence. But she’s learned to cope with the disease and the importance of having a support system.
Sheehan met Carol Hunter almost 20 years ago on an MS Walk, which raises awareness and money to fund research for a cure. And about seven years ago, they started a team to walk with and fundraise: Carol and Debbie’s Superstars.
Hunter also runs a support group, Northwest Tucson Multiple Sclerosis Self-Help Group, along with her friend Cindy Lewis. The group has over 200 people on its email list, and usually 15 to 30 people show up to monthly meetings.
“However you feel today, you’re gonna’ feel better when you leave,” said Lewis, who was diagnosed with MS in 1989.
Hunter joined a support group three years after her diagnosis, in 1995, because she wanted to learn more about dealing with her symptoms. She also needed support on dealing with loss. With MS, she said, symptoms come and go. You may regain the ability to walk, only to lose it again, making the grieving process a repetitive circle.
“The scariest part of the disease is not knowing day to day,” Hunter said.
In their support group, they connect with others who understand that dread. They share coping tips and advice on doctors and treatments. They also invite speakers to talk on topics, such as traveling with MS. Most importantly, it’s a reminder they’re not alone.
Through support groups, Sheehan can share the scary and embarrassing moments with people who understand. If she’s having a bad day, feeling like she can’t make it, she has people to call who tell her, “Yes you can.”
“It’s nice to have a laugh with somebody who gets it,” she said.
The upcoming MS walk will be Sheehan’s 22nd. She and her friends have all had times where they had varied difficulty walking. She’s needed a cane, a walker, a wheelchair. Currently, she can walk without any assistance.
“All three of us look wonderful,” Sheehan said. “But our bodies are at war internally.”
This year, the MS Walk has two routes through Reid Park. Participation is free, but donations that go to MS research are encouraged and rewarded.
Participants who raise $50, by donating themselves and encouraging others to donate, get free entry to the zoo after the walk ends at 9 a.m. Raising $250 gets participants into a beer garden hosted by Frog & Firkin. The event will include food, vendors, information on local services and support groups and a live band.
The money raised goes to the MS Society and about 75 percent of it goes to research for a cure and services for people with MS. Other money is invested in support services such as fundraising.
Last year Carol and Debbie’s Superstars, with 25 people on their team, raised $5,000 for the MS Society. The entire walk raised close to $60,000. This year’s goal is $65,000, said Hunter, who’s volunteered with the walk for many years and is involved with the planning committee.
After the walk, Sheehan needs a couple days in bed to recover. She smiles remembering it used to be six.
“It’s who you surround yourself with, but it’s also your attitude,” she said. “You really have to understand your body. I have MS, but it doesn’t have me.”
The MS Walk is on Saturday, March 17, at Reid Park, 900 S. Randolph Way. Registration starts at 6:30 a.m. and the walk begins at 8 a.m. Pre-register at WalkMS.org. To volunteer, contact Caryl Jonas at (480) 455-3955. Donations are tax deductible, and can be made at nationalmssociety.org/Donate. Donations will be accepted for 90 days after the walk. The Northwest Tucson Multiple Sclerosis Self-Help Group Meetings are the second Wednesday of every month, from 10 a.m. to noon, at Casas Adobes Congregational Church, 6801 N. Oracle Road. For more info, call Carol Hunter at 797-0405 or email her at firstname.lastname@example.org. It’s an open meeting (and a lively crew).