Mary Fuchs, co-leader of the Phoenix Chapter of the National Ataxia Foundation, embodies her signature phrase, “Just because you have a disability doesn’t knock you out of the game; you just have to learn to do things differently.”
What Is Late-Onset Friedreich’s Ataxia?
50 to 100 different ataxias have been identified and categorized based on cause and the area of the body affected. Friedreich's ataxia is a rare, progressive, neurodegenerative disease. Both of Mary’s parents carried a specific miscoding on the gene called FXN; she and her sister have it, and two of her siblings are carriers.
Most diagnoses of Friedreich's ataxia come in late childhood. The disease can cause, among many other things, difficulty with speech and movement, fatigue, loss of sensation in the extremities, and hearing and vision impairments. Often the person is fully dependent on assistive devices before their 20s. So even in a rare condition, Mary and her sister were just a little bit more unique as the first of their 40 to 50 years were unremarkable for symptoms.
Mary Tells How a TBI Led to Her Diagnosis
“My early life was like everybody else’s. I drove a car; I got married; I had children. I was maybe a little clumsy in my 30s or 40s, and I was starting with some balance issues, like I had to grab the rail to go upstairs or a branch or something outside,” says Mary.
When she was 67, after a small car accident with a mild head injury, her increasingly faulty kicking skills got her uninvited from her aerobics class. She went back to the doctor. Mary explains, “They said, ‘well, you don’t get worse from a head injury,’ and that neurologist recognized the symptoms and sent me for genetic testing, and that’s when they found I had [Friedreich's ataxia]."
Making Meaning for Herself, Affordable Healthcare for Others
“I have my LPN nursing degree. After I quit working in hospitals, I worked for eye doctors. When I couldn’t work in an office anymore, I knew how important good care was after my head injury, so I opened my own care center, Home Sweet Home Services,” Mary states.
She laughs as she says, “I called it my legalized love-making business because you could go in and just love on people.” She becomes more serious as she moves on, stating, “Being that I owned [the care home], I would set it up according to people’s income and needs and make it affordable. So then nurses who visited there would refer their other patients to me if insurance was running out.”
She adds, “If I had known how rewarding it would be, I would have done it 40 years earlier. It was the best ten years of my life.”
A “Daring Adventure” on Her “River of Dreams”
Since being diagnosed with Friedreich's ataxia, Mary has been on several adventure trips regardless of her disability. Her favorite outdoor excursion so far was a 16-day trip through the Grand Canyon on the Colorado River. The program was known as the “River of Dreams” and is now called “Daring Adventures.” It has recently moved under the umbrella of Ability360 of Phoenix. With a few edits for clarity and brevity, I will let Mary’s narration stand on its own.
“The whole trip was just awesome. It was like a cruise. We had a fireman and a physician assistant, and two staff who were the directors of the program. We had two men from the Hopi Nation and two of the [Sudanese] Lost Boys with us as our entertainment directors. At night, we couldn’t have a campfire, so they put a flashlight under a transparent bucket, and they would talk about their cultures and their adventures. Everybody on this trip had a disability of some sort and a caretaker. So I had the disability and my husband was my caretaker. One of [the Lost Boys] had even been shot in the leg and had an amputee leg.”
“The meals were also just like on a cruise; we even had pineapple upside-down cake one night. We had six canoes and one pontoon boat [for food and tents]. The food was in bags under the seats to keep it cold, and they’d quickly open it and just grab the bag for the meal. To unload, we would set up like a bucket brigade and to reload in the morning, the same brigade.”
“Like a cruise, there was a craft night, a night where we made a costume, and a talent night. For my talent, I rewrote the 23rd Psalm into a Grand Canyon River Prayer.”
The Grand Canyon River Prayer The Lord is my shepherd I shall not want. He maketh me want to see the Grand Canyon. He leadth me to "The River of Dreams." He restoreth my hope to succeed. Guides prepareth a table before us. Girls anoint my head with river water, with my river mug. Yea though I float thru the Colorado River, I shall fear NO RAPIDS. The guides and support staff they comfort me. Surely good memories and new friends shall follow me all the days of my Life and shall dwell in my heart forever. God Bless and thank you for Great Time. Written by Mary Fuchs September 26, 2003 "Varity Talent Night"
“About halfway through, I think it was like day eight, I twisted my ankle in the sand. I heard my ankle snap. At that time, I was using a walker, but of course, stubborn me, I wasn’t. I literally broke my ankle on day eight. So having a physician assistant and a nurse, we just wrapped it and at night, the river was so cold I would soak it in a bucket of water.” They would give me extra Tylenol during the day and at night, they had some pills.”
When her injury occurred, they were so far into the canyon that the only options were finishing the trip or a $5000 helicopter ride. She finished the trip.
“After that, whenever we went through rapids, I would hold my leg up, and the person inside had to hold my life jacket because the water would rush in under my butt. To get me on and off from the pontoon, I had these gorgeous firemen carrying me, and it was kind of like being a queen.”
The river trip ends near the entrance to Lake Mead but still in the canyon, and buses take them up a very bumpy road to the rim. She was on one bus and the doctor with the pain pills on another, so that was, per her, “the biggest pain in the tush, and the only negative part, and like childbirth, you forget that part.”
Another Bucket List Escapade
Another of her many risk-taking ventures was ziplining in Costa Rica. Her husband, who worked in the Insurance world, won the trip. Here again, is Mary telling her story.
“They took us on a bus to another resort at the top of a mountain, and for the first leg of it, we were on horseback. I used to have horses back in Fenton [Michigan], but when you are going up a mountain, and you are four or five abreast; I am on the outside, and this other guy was so close he knocked my foot from out of the stirrup which kind of made me lean to the side and Woooo! That was kind of spooky!”
“At the top, there were hot springs, but before they let you get into the hot tub, they gave us a mud bath; they wanted us to exfoliate our skin. So we were covered in mud from the shoulder down to the toe, and we let it dry. Then, they took ice-cold water to hose us down.” Here Mary bursts out laughing, “I wasn’t sure if it was me or them that was going to die. I wanted to wrap that hose around the dude's neck.” The hot tub prevented any actual carnage.
Mary continues, “Then we had lunch, and after that, we went ziplining. Costa Rica has great respect for its foliage, and they told me, ‘You can’t touch the trees,’ and I said, ‘If you want me to get to the top then, help!’”
Accommodations Improve the Zip Trip
“So the rest of the group went on the path, and we went a back route where instead of the trees, they could just help pull me up. The funny part is we got to the top before the non-disabled people did. To this day, [my husband] still accuses me of taking an ATV to get there first.”
“Then they gave a crash course on the zipline, and my husband made me go down first. Because of my ataxia, I would grip and put on the brake, and so I stopped about 10 feet short from where I was supposed to disembark.”
She followed the instructions to turn herself backward to get to the platform, thinking the whole experience was a fait accompli, only to discover there were 10 more ziplines. Mary ends her story with her usual humorous twist, “I said NO WAY, and I hired me a human taxi. He used his arms, and I was just kind of strapped into this guy’s lap, and I enjoyed the rest of the ride and the scenery.”
At an awards banquet that night, she and her “taxi” were recognized for being such good troopers.
Never Say No
Mary finished our interview with, “I never say no to anything; I just do it differently, and if I can’t go in with everyone else, sometimes I just have to go in the back way.”