Son, father find different vehicles for living with crippling, deadly disease
Nov. 24, 2010 at 5:24 a.m.
SUPPORT GROUPThe Crossroads Area ALS, MD and Motor Neuron Disease Support Group meets:
At DeTar Hospital Navarro, 506 E. San Antonio St., in the first-floor classroom, on the second Monday of every month from 6-8 p.m.
The support group is open to people living with amyotrophic lateral sclerosis, muscular dystrophy or other neurological diseases, as well as family and caregivers. Meetings include group discussions on living with motor neuron diseases and speakers from the medical community.
For more information, contact Bill Hassel at 361-574-8303.
'Breadth of Hope' film premiereThe Advocate will debut "Breadth of Hope," an inspirational documentary by filmmaker Drew Stewart, a former intern at the newspaper, and reporter Erica Rodriguez.
The film tells the journey of three Victorians living with ALS:
Former pastor Bill Hassel
Craig Fox, a retired electrical instruments designer
Carolyn Shimek, once a teacher's aide
In the film, the three discover how faith, family and courage combine to create the hope to live. You'll laugh, cry, cheer and be inspired as you watch these remarkable individuals live in the face of death and find the true breadth of hope.
Purchase tickets at the Leo J. Welder Center for the Performing Arts box office from 9 a.m.-4 p.m. Monday-Friday or call 361-580-6315.
WHERE: Welder Center, 214 N. Main St.
WHEN: Doors open at 5:30 p.m. Dec. 1. Filmmaker Drew Stewart will introduce the film at 6 p.m. After the movie, the filmmaker will lead a panel discussion featuring Craig Fox from 8:15-9 p.m.
COST: $5 admission. A portion of the proceeds will go to the ALS Therapy Development Institute.
Tanner Fox wipes cheese from the corners of his mouth and contemplates life.
His dark eyes are soft and hopeful, as he stares from behind the wheel of the new family car, a place he's been able to occupy for only a couple of months.
"I've kind of learned how to be a man at such a young age," he said, pausing at a fast-food drive-thru to break from driving. "I could probably help kids or young adults with it."
Tanner's learner's permit means much more to him than to the typical teen. It means giving his disabled father the one thing that ebbs away more rapidly each day: his freedom. At 16, Tanner is a Victoria East sophomore driving headlong into an uncertain future.
"I guess I'm just along for the ride," Tanner said, taking another bite of greasy hotdog. "Whatever my dad needs me to do, I'll do it. . OK, I guess I'll just be the chauffeur."
During the past two years, Tanner has cared for his 42-year-old father, Craig Fox, who lives with amyotrophic lateral sclerosis. The motor-neuron disease eats away nerve cells that control voluntary muscles, slowly killing them. The disease is fatal. There are few treatments and no cure.
The average lifespan for someone with the disease is two to five years. Fox was diagnosed with the rare disease a little more than two years ago. He is one of four people in the Crossroads known to have it.
Tanner lost his mother to heart failure in 2005, three years before his father's ALS diagnosis. After that, sleep and health at times came second for Tanner as he watched his father slowly lose his strength. He has helped his father button a shirt, cook his little sister breakfast or turn on the TV, all the while braving depression and adolescence until, finally, the whole family moved into Fox's parents' home last November.
A year after the move, Tanner has learned to re-focus on growing up. His grades have picked up, he's learning to drive, and he's found a desire to help people as a psychologist or counselor.
"I would hate for a kid to be going through the same stuff that I'm going through," he said. "That would probably be the one thing that I could not cope with. The exact same situation just running into my office just 10 years after I start my practice. I would probably just lose it."
Tanner re-buckles his seat belt and drives away carefully so as not to rattle his two most regular passengers, his disabled father and 71-year-old grandfather.
While Tanner is learning to drive his own set of wheels, his father confronts a different sort of freedom.
Fox watched from his recliner as a grinning salesman rolled a black-and-blue power wheelchair into his living room like a new bike. He hardly spoke as the man explained the high-tech sensors that would let him steer the machine at the tilt of his head.
His mother, Peggy, and his father, W.J., squinted as the man explained the computer and motor that powered the vehicle.
The chair cradled his 315-pound frame as Brandon Edmondson, the wheelchair man from Houston, buckled him down.
Fox paused and asked his mother to wipe his face, something impossible for his dead-weight arms.
ALS has stolen his strength. His shoulders, once broad and looming, now poke out bony and immovable from the sides of his shirt. His left leg, which once kicked footballs for Victoria High School Stingarees, won't support his weight for long.
He holds fiercely to the abilities that remain.
"To get out of this chair, to go sit down at the table, getting fed, get something to drink. Everything is up to the caretaker," he said. "Then, you only got your legs."
Learning to drive the chair could mean taking a roll outside without caretakers or shopping easier, but Fox doesn't see it that way.
"I don't know if it bothers me as much as it's another step, you know. I don't want to end up in a wheelchair," he said. "If I still got my legs, I still got my legs."
In the street, Edmondson jogged alongside Fox as he jolted around using the head controls as erratically as any student driver.
The wheelchair is the only vehicle Fox can legally drive. He lost his driver's license shortly after trying to renew, and he couldn't lift his arm to the counter to sign for it. After the license was gone, he couldn't have insurance or a car in his name, which is why Tanner's new driving means so much to the family.
"We'll be more independent to go and do whatever we want to do. Him to drive us around, me and Bailey," he said, referring to his 12-year-old daughter. "Of course, Bailey's going to probably have a blindfold," he added, smirking.
'In the driver's seat'
Tanner's struggles have given birth to determination and focus.
Tanner stays updated on stem cell research, which could mean a cure for his dad, and thinks often about his dream of helping others.
"I can help someone probably through that," he said, about his own struggle as a caregiver. "But I would like it not to happen, which is why that I'm praying for the money that we're raising everyday all over the country for ALS, and I'm praying that stem cells works out."
Peggy Fox, like any wise grandmother, has noted Tanner's subtle changes.
"He has matured as a student," she said. "He has matured as a 'I've-got-to-start-thinking-about-my-future kind of thing."
While the family continues prayers for a cure, each member looks to the future. Fox makes plans to take his family on a cruise in the spring; his parents anticipate a Christmas getaway; and Tanner stays focused on the things he thinks really matter - like Titans football, his rapping hobby and discovering his own identity.
"I'm starting to find myself very slowly...," Tanner said. "Just very slowly trying to figure it out just one step and one day at a time. I'm in the driver's seat here and, metaphorically, my life."
A Father's Strength: An Ongoing Series
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