by Carrie Baatz
Most of us only get so far in life before we encounter events that challenge us – or even break us. When these events happen, they have a way of changing what we thought we knew. Oftentimes, those of us in the disability community have unique perspectives because we have faced the loss of abilities, either at birth or later in life. To overcome and thrive, it takes the right resources, support and a certain stubbornness.
Stubbornness is that fight in you that refuses to give up, pushing back against restrictions that have been imposed on you. It adjusts itself to meet you where you are, but it is not content to leave you in any form of imprisonment. It rebels against the words “You can’t.” Stubbornness is an ongoing commitment to do the things you love, even when it’s hard. It will require you to disconnect completely from those ties that make you feel small, and connect once again to your dreams, passions, and interests. It holds onto the hope that things will get better.
“That’s how we deal with setbacks…we seek out physical challenge. If I have to amputate my foot, I’m going to become the best Para-Olympian there ever was!” Karen Kantor is the Development Associate at The Independence Center. A high-level athlete, she has always had a passion for running. Her passion shifted after she experienced a Spinal Cord Injury.
The injury happened when she was working at the National Training Center for Desert Warfare. Soldiers and marines, many of whom had been to Desert Storm and dealt with post-traumatic stress disorder (PTSD), trained there before their deployments. Kantor worked there as a behavioral health social worker.
“We were on call one night. There was a marine who was suicidal and carrying survivor’s guilt. He showed increasing levels of lethality. His intent was death by a tussle with security, so he fired off a round.”
Kantor’s job was to intervene in order to help keep him safe and everyone else safe. The staff did not have a protocol for dealing with these kinds of situations, and unfortunately, the training center did not have enough mental health support. As Kantor worked with the marine, he became more agitated.
“He tried to escape, and ended up slamming me up against the wall. They ended up tackling him, and I went flying. I landed wrapped around the chairs. The impact of their weight splayed my pelvis and damaged my spine.”
That day, Kantor lost motion and feeling in her legs and feet. Spinal Cord Injuries damage a person’s nervous system and affect their ability to control and feel parts of their bodies.
People who have had Spinal Cord Injuries usually experience one or more of these symptoms1:
- Loss of movement
- Loss of sensation, including the ability to feel heat, cold and touch
- Exaggerated reflex activities or spasms
- Extreme pain, stinging sensation, or pressure in the neck, head or back
- Numbness, tingling or weakness
- Difficulty with balance and walking
- An oddly positioned or twisted neck or back
- Difficulty breathing, coughing or clearing secretions from the lungs
- Loss of bladder or bowel control
About 250,000 Americans have Spinal Cord Injuries, and there are 11,000 new injuries every year.2
The time between the injury and treatment can make a great difference in the extent of complications and prognosis of recovery. The most vital time in a person’s recovery is the first 18 months following the spinal cord injury. During this period, swelling needs to reduce enough for neural connections to re-establish.
At her first facility, Kantor experienced a lot of inflammation that wouldn’t go away. She developed Transverse Myelitis, a condition caused when a person’s spinal cord becomes inflamed, with symptoms that feel similar to Muscular Dystrophy. She was transferred to a teaching hospital in Hawaii, where she received newer and better treatments than the previous facility could offer.
Kantor said that her recovery has involved finding her limits and taking the next step. The experience of her Spinal Cord Injury started her on the path of coaching challenged athletes, and she developed a new passion. “Sports by their nature are adaptive – my goal is to help them regain what they have lost or experience what they have never experienced, depending on when they acquired their disability.”
The right treatment is essential to a person’s recovery, but some do not have access to treatments that would benefit them. Since the time of her injury, Kantor has spent part of her career working with patients who, like her, are facing the journey of recovery from Spinal Cord Injuries. She has seen the hard reality that patients do not all have access to the same treatment. People who are insured by Medicare run into specific barriers.
Medicare only covers treatments that are deemed medically necessary, even though other treatments can improve their overall health. Doctors look for signs that patients are ambulatory, meaning that they show signs of movement in the parts of their bodies impact by the injury. Patients are place in categories for treatment pathways based on whether or not they show signs that they can move the parts of their bodies that have been impact by the Spinal Cord Injury.
“As a social worker, I watched patients with the exact same injuries be given very different treatment tracks, based on what Medicare could cover. If they aren’t showing the right signs of a good recovery prognosis, they may not get treatment.”
This means that one patient may be authorized for basic, minimum treatment (i.e. learning about wound care and bowel movement protocols), while they watch their peers start physical therapy and other higher levels of treatment. If the first patient wants better treatments, she or he will have to pay out of pocket, fundraise, or apply for grants. People who can’t afford the treatment they need end up “getting stuck and depressed at home – not knowing what their potential is,” Kantor said.
What can we do to make a difference in health care for people recovering from Spinal Cord Injuries? To find out, The Independence Center conducted a qualitative research study and talked with people who have lost some or all of their mobility.3 We asked them to envision an ideal health care setting in Colorado Springs. All of the participants said that we need more adaptive physical therapy and fitness equipment – they are vital for regaining movement and strength.
A dream is shared by people with disabilities: Develop a Wellness Center in Colorado Springs that incorporates accessible fitness equipment, recreation, adaptive physical therapy, disability-competent medical care and mental health care.
The Independence Center advocates to make accessible health care solutions a reality for people with disabilities. We are here to support people with Spinal Cord Injuries in any stage of recovery. Call us to learn more about our Peer Support groups, at 719-471-8181.
11998-2017 Mayo Foundation for Medical Education and Research (MFMER)
2 2002-2017 Spinal Cord Information Pages
3 This research study was conducted on behalf of The Independence Center and Rocky Mountain PACE, with support from Community Health Partners. Funding was provided by generous grants from The Colorado Health Foundation and Colorado Springs Health Foundation. Their support is gratefully acknowledged.