September 5 is World Spinal Cord Injury Day, kicking off a month of injury-focused content, educational resources, and awareness efforts. This is your opportunity to better understand spinal cord injuries and how they affect the people who live with them. Here are four things you should know.
A spinal cord injury affects every single part of your life.
Spinal cord injuries can flip your entire world upside down in an instant. That impact extends to your family and friends, too. As the World Spinal Cord Injury Day website explains, “paralysis has devastating physical, mental, social, sexual and vocational consequences for the injured. The injury increases the burden on his or her entire support network.”
“The average person doesn’t realize that I am not just sitting,” said Danielle Watson, living with paralysis since 2011. “Sitting is the easy part. I constantly have to think about my bladder, my digestion, my bones, my joints, my body mechanics, avoiding pressure sores, my temperature, my water intake…the list goes on!” Danielle revealed one of the biggest challenges of managing these risks: feeling pressure to keep health issues under wraps. “I usually keep all of this hidden from people,” she said. “I try to portray that I have everything together.”
As father-turned-caregiver Dennis McGonagle explained, supporting his son Sean’s health following a spinal cord injury “is a minute-to-minute task. We have therapy three times a week, doctor’s appointments, and daily care and companionship needs.”
“When the physical manner by which you relate to the world is changed, the emotional nature of that relationship changes as well,” explained Theo St. Francis, living with a spinal cord injury since 2013. “There is an overwhelming feeling of loss that accompanies a paralyzing injury to the spinal cord. In some ways, one’s sense of self fades with the loss of our subconscious daily patterns.” Theo has found it “immensely satisfying” physically and emotionally to pursue specialized therapy to strengthen his body after injury.
…but it doesn’t mean you have no life.
You can have a full life after injury that includes everything people without disabilities enjoy, from having a family to pursuing a meaningful career to living an independent life and engaging in hobbies you love with friends by your side.
Mary Ruth Armbruster strove for independence after her 2011 spinal cord injury – and she found it. “I am employed full-time, am a homeowner, and spend my summers camping and enjoying the warmth and my winters downhill skiing.” John LeMoine has enjoyed off-roading, fishing, rock climbing, biking, competing in athletic events, and even skydiving after sustaining a spinal cord injury in 2014.
Alex Paul, Richard Travia, and Jeff Sachs can all attest to the possibilities of having a loving and committed relationship or raising kids after a paralyzing injury. “The injury has brought us challenges,” Katie Travia explained, “but our relationship is stronger than ever. Richard is my best friend and soulmate.”
Though a freak accident left Kirk Williams with paralysis, “my injury hasn’t stopped me from doing what I love. I still do photography, camp, mountain bike and enjoy wheelchair rugby, scuba diving, hand cycling, and traveling.” Kirk founded a UAV-powered production company and continues to remind himself “that anything is possible.” “Get out there and try everything you can,” he urged.
Paralyzed from the neck down with little movement or sensation, Elizabeth EB Forst still actively travels independently, attends concerts, goes scuba diving, and serves as an advocate for the spinal cord injury community. “Friends seem shocked that I am still just who I was before my injury,” said EB. “My mantra has always been that anything is possible.”
Spinal cord injuries are extremely expensive, even if you have insurance.
According to the Christopher and Dana Reeve Foundation, a spinal cord injury could cost you over $1 million in the first year. You can expect to pay up to $4.5 million over the course of your life depending on the level and severity of the injury.
Even a small home modification could cost $5,000 or more out-of-pocket. Need a new power chair? That’ll be $20,000 and up, and insurance may not cover it. If you want to pursue physical rehabilitation to improve mobility after an injury, you may have to come up with $20,000 or more to cover one year of therapy alone. Could your family handle these out-of-pocket costs without help?
Eric LeGrand has been one of the most visible spinal cord injury advocates following his 2010 injury he sustained playing football for Rutgers University. He and his family were shocked by post-injury costs. “When it was time for me to leave the hospital, I realized I wouldn’t be able to move around my home with my wheelchair,” he said. “We had to completely rebuild the house from the ground up. The cost is huge.”
As Eric noted, skip the essentials and you risk experiencing isolation or burdening others: “Without my chair, I would be trapped in my room. I’m lost without my phone, and technology has helped me with my quality of life. I don’t have to rely on family or caregivers to do everything for me, but insurance won’t pay for at least half of what you’d think they’d pay for.”
Why so little support from insurance for post-injury care? “Our insurance system is broken,” explained Jeffrey Brandt, founder and CEO of Ability Prosthetics & Orthotics, Inc. “Insurance companies view many mainstream mobility requirements as luxuries and consequently won’t cover the cost. That may extend to physical therapy at any level, life-changing medical supplies, replacement supplies, or equipment. Insurance is in the business of not paying out benefits whenever possible.”
…but help is out there.
Most individuals living with a spinal cord injury cannot navigate the physical, emotional, and financial burdens on their own. One way to make a difference on World Spinal Cord Injury Day is to share our website with someone who might need our help.
If you know a family coping with a spinal cord injury, help them understand how fundraising could positively change their lives. They can reach Help Hope Live via phone at 800.642.8399 or online at helphopelive.org to find out if our nonprofit fundraising solution is the right fit for their situation.