Whether caused by birth defect, vascular disease or traumatic accident, the Amputee Coalition predicts 3.6 million people will be living with limb loss by the year 2050. KLCC’s Tiffany Eckert recently met four amputees in the Willamette Valley and she brings us their stories of struggle and accomplishment.
When Kristi Mattes was 19-weeks pregnant, she learned that her baby boy had Spina bifida and sacral agenesis. She wanted to give him a strong name.
Kristi: “So I looked through the baby name book, and was looking through ‘J’ names and came across the name Jaya which means victory and over-comer.”
Jaya Mattes was born without a spine from the rib cage down so he’s paralyzed below the waist. His little legs were fixed out in front of him, hindering mobility. When he was seven, Jaya’s mom and doctors decided it was best to amputate both legs.
Kristi: “They went through the knee joints and used his tibias to fuse his spine.”
That surgery gave Jaya the ability to sit up straight in his wheelchair.
Jaya likes sports: “I like playing basketball.”Jaya plays on the basketball team at Agnes Stewart Middle School. He’s also joined a wheelchair b-ball team.
At 12, Jaya has the upper body of an athlete: a barrel chest and powerful arms. He and a few other wheelchair athletes volley around the court at the Bob Keefer Center in Springfield. They’re here for a special event for amputees and their families put on by a new non-profit called “Power On With Limb Loss.” People with prosthetic arms and legs are participating in archery, court sports, yoga…
Jaya wheels off the court at a quick clip to talk.
Reporter: “Are you in your own chair right now?”
Reporter: “Describe it.”
Jaya: “It’s made for the skate park so it has shocks and stuff on it.
Reporter: “So, do you go in the bowls?”
Jaya: “Not yet.
Reporter: “But I can see you thinking about it though right? So what do you do at skate park.”
Jaya: “I go down the other ramps and stuff.”
Every sport Jaya wants to play pretty much needs a different wheelchair and Kristi, who is a single mother of three, says each one can cost between $3,500 and $5,000. Sports chairs are not covered by insurance.
This day’s event was coordinated by Paula Free, founder of Power On With Limb Loss. After a motorcycle accident, she had to have her left leg amputated. That was six years ago. Today, Free is 63, little as a minute and brave. She just scaled a 30-foot climbing wall with a silver studded, blinged out, prosthetic leg. (hear cheers)
Free:“I got my foot stuck in cause there’s just no give and no movement like your regular foot…you can tilt your toes or flex or arch.”
Free: “Yeah, it’s getting over the fear of heights and then you gotta learn to let go.”
Free says dealing with the loss of a limb requires a whole new thinking process.
Free:“You know, I knew instead of taking me twenty minutes to run to the store it was gonna take me an hour and a half.”
After her amputation, Free says she relied on a strong support network. It’s something she wants every amputee to have and the reason she started a monthly support group.
48-year old Todd Butcher had cancer as a kid and radiation treatment weakened the bone in his leg. Three years ago, while working out, he fractured his tibia.
Butcher: “Then I was out in the woods elk hunting, I stepped in a bit of a hole and it just broke all the way across. And I found out that the bone was in such bad shape that it just wasn’t gonna heal back together again so I chose to do the amputation.”
Butcher was a delivery driver but after the amputation he was unable to return to work. He used up his sick time and vacation.
Butcher:“I had applied for unemployment and I was turned down because I was told I didn’t have a good reason to leave work because I lost my leg. So I had to fight for that.”
Without a hint of sarcasm, he says there were “a lot of hoops to jump through.” Butcher lives in Philomath, He’s a health-conscious, single father of three and now he has a young grandson to keep up with. Butcher says his older prosthetic leg is uncomfortable and sometimes it hurts. Above the knee amputees require prosthetics with sockets that attach at the crotch.
He wants to replace it with a carbon fiber leg with a micro-processor knee. But, even if insurance approves it, his coverage under the Affordable Care Act health exchange is 80%. The leg he hopes for costs $50 grand.
Butcher: “The insurance companies are gonna fight you on what you need--what’s really needed and what’s not. I think a lot of them have the view that limbs are more of a luxury than a necessity.”
Dauntless: “The prosthetic leg has got a mind of its own. The foot talks to the knee and the knee talks to the foot but it doesn’t talk to me.” (laugh)
That’s Greg Dauntless. He’s 66 and has lived in Eugene all his life. Seven years ago, he also had a motorcycle accident. He almost died.
Dauntless did lose a leg, but he feels lucky to be alive. Amazingly, when he and other amputees attend Power On support meetings, as many as half say they lost limbs in motorcycle wrecks.
Six weeks after the amputation, Dauntless was back in the gym. He applied for a prosthetic leg but says his insurance company baulked at the cost.
Dauntless:“It came down to writing letters to the insurance company saying, ‘Hey, I want to be able to do something besides walk around on a wooden peg.”
Paula Free says the issues amputees face run the gamut. In addition to the physical and psychological adjustments of losing a limb, many people also suffer financial consequences. Yet, each of the amputees in this story have found ways to not just cope but thrive. And they help others in their own ways.
Greg Dauntless volunteers at PeaceHealth Medical Center and veterans groups.
Todd Butcher is working toward financial success with his business selling water ionizers. When he gets there, he says he plans to start a foundation to help other amputees.
Though she’s just starting to think of herself as an advocate, Paula Free and her Power On With Limb Loss group help in countless ways.
Young Jaya Mattes says he wants to help people realize that even though he is missing parts of his body, he is still just a regular 12 year old boy. He goes to public school, hangs out with friends, plays hardcore sports. And what does he do when he falls down?
Jaya Mattes: “I just get back up and keep playing.”
(See more about the Amputee Coalition, Power On With Limb Loss and Jaya Mattes below)