Editor’s Note: Kim Harrison from Douglasville, Georgia, was the third place winner in 2015’s Get Out, Enjoy Life photo contest and exemplifies what the Get Out, Enjoy Life program encourages all of us to do! As part of her prize, Kim won a Bellyak kayak for wheelchair users. We’re sharing her story now to encourage you to look forward to our 2016 GOEL event coming up this June with SPORTS ‘N SPOKES magazine. Below, Kim shares her outlook on life with Transverse Myelitis.
I’m a regular reader of the Wheel:Life Facebook page. The articles on this page are very helpful and very useful. I appreciate that they also include information for caregivers, because people who ride wheelchairs are not the only people impacted by disabilities.
In that picture, I was holding up the target that I had hit 19 out of 20 times, and I never had shot a rifle before that day in my life.
Kim Evaluates Her New Bellyak
We went to Panama City Beach in the fall of 2015 with a group of eight people, and for seven days straight, my Bellyak was constantly in the water. I use a beach mobility wheelchair to get into the water, transfer to the Bellyak, paddle out past the surf, catch a wave and surf into the shore. Then I turn around on the board, paddle back out past the breakers and surf in again on the Bellyak. When I wasn’t using the Bellyak, some of my friends who were able-bodied used it.
I wasn’t a surfer prior to winning the Bellyak and only had surfed one time in Jacksonville, Florida, with an organization called Life Rolls On. An ex-professional surfer, Jesse Billauer, who had a spinal cord injury, started the organization. He won the World Championship for Adaptive Surfing.
I was excited to go to Panama City and try out the Bellyak. First of all, I was surprised at how comfortable it was, and I also discovered that it was very difficult to turn the Bellyak over. In a controlled environment with spotters, I tried as hard as I could to turn it over, but I couldn’t. That fact made me feel really comfortable in it.
Another thing I liked about the Bellyak was when I was laying on my stomach, my body fit down into the Bellyak. A surfboard would be flat and cause my back to hurt if I stayed on it for very long. I also appreciated the webbed gloves that came with the Bellyak that enabled me to paddle out past the beakers faster and easier than I could using my hands only with no gloves.
But Panama City wasn’t my first experience with the Bellyak. The week after I won the Bellyak, we took it to Allatoona Lake, just outside of Atlanta. I put it in the water and paddled around in a no-wake zone. I haven’t tried it out in a river, and I haven’t run white water with it. I don’t know that I’ll try that. I do plan to paddle around in a river with it soon though.
At first, I was a little concerned that the Bellyak would tip over when I tried to crawl up on it, but I was pleasantly surprised at how stable and comfortable it was. I could paddle around in the lake, and I could paddle out past the surf without having anyone help me.
On our trip to Panama City, I was really impressed that many of the hotels and motels on the beach had chairs there that resembled lawn chairs with huge rubber tires. I used a beach wheelchair like that to get out into the water and get on my Bellyak. When I go to a lake, I take my own wheelchair down a boat ramp and transfer from my wheelchair onto the Bellyak.
Kim Woke Up With Transverse Myelitis
I have a non-traumatic spinal cord injury called transverse myelitis. On October 6, 2004, I was on a business trip to Dallas, Texas. I woke up one morning at 7:00 am, and my right foot was numb and tingly. By 11:00 am, I was paralyzed from the waist down.
This condition is called idiopathic. I don’t know how I got this problem. I had a respiratory infection, but evidently, instead of fighting the infection, my immune system attacked my spinal cord from T10 down, causing the myelin sheathing to be removed from the nerves. Imagine a piece of electrical wire that has a plastic coating on it.
That plastic coating is somewhat like the myelin sheathing over the spinal cord. Without that sheathing, when the brain talks to the nerves, the nerves and muscles don’t get the signal.
I thought I probably had pinched a nerve. I kept expecting my lower body to wake up, and everything be all right. I was taken to the hospital. My sister and brother-in-law who lived 15 miles away came to the hospital and waited with me until my husband could fly in from Atlanta.
The ER doctor I’d seen hadn’t been overly concerned. But after two MRIs and one CAT scan, I was admitted to the hospital. For five
days, no one could tell me what had happened. Finally, a neurologist examined me. I had feeling in my lower extremities but no muscle control. The neurologist told me, “The good news is you don’t have multiple sclerosis. The bad news is you have transverse myelitis.”
He walked out of the room, without describing what transverse myelitis was, what caused me to have it, or what my future would be like.
In 2004, there wasn’t nearly as much information on transverse myelitis as there is today. I went to WebMD, and all I could find about my condition was very depressing. Since then, we’ve learned that WebMD has a lot of old information that’s not current with new research constantly being developed.
I learned that transverse myelitis affected different people in various ways. Some people had a lot of pain associated with this condition; other people had to be put on ventilators to breathe; and some people walked with this condition and lost very little function. So, no one could tell me exactly what would happen, or what I could expect to happen.
I spent 2 weeks in the hospital and 1 week in a rehab facility. I came home and started going to the Shepherd Center in Atlanta. When I went to the Shepherd Center for the first time, I was really impressed. I didn’t see any handicap parking signs, because about everyone there had some type of disability. That really helped me see that there were plenty of people like me. Everyone at the Shepherd Center encouraged me. I came away thinking, “This is an awesome, awesome facility.”
I found the Transverse Myelitis Association’s webpage where I learned more information about my disease. I discovered there were three research centers studying this disease, including the University of Alabama in Birmingham (UAB) where Dr. DeSilva did research, Johns Hopkins University and one in Dallas, Texas. Since I lived closest to UAB, I went there. I work very closely with that research facility today and do all I can to help raise money for it to learn more about what the disease is, and what can be done to cure it.
Only 1,400 people in the United States have transverse myelitis.
I’m in a research study now with other people with this disease. The researchers have taken blood from all of us to attempt to find one common denominator that may indicate how and why we’ve gotten this disease. This study is being funded by the Mike L. Jezdimir Foundation.
Today, my right leg is totally paralyzed; my left leg has 20 percent function; and I have full mobility from my waist up. But I can get around my house with a walker.
Kim is More Active Now Than Before She Had Transverse Myelitis
I was fairly active before we discovered I had transverse myelitis. I liked to ride a bicycle and play tennis, although I wasn’t very good. However, since I’ve been injured, I’ve been sky diving, and zip lining at 150 feet off the ground. Then, I’ve rappelled 60-feet down from where the zip line ended.
Often you’ll hear or read of people saying, “Always live every day to the fullest, because you don’t know when you’ll live your last day.” When you go through a traumatic experience like I have, and your life changes so quickly, I think you really want to do everything that you’ve ever wanted to do. Two weeks from the time of this interview for Wheel:Life, I’ll be hang gliding.
I attend the Shepherd Center’s Atlanta Adventure Skills Workshop held each May. In one weekend, we’ll rock wall climb, ride a zip line, water ski and jet ski. Also, we go tubing, kayaking and play wheelchair tennis and wheelchair rugby. I really enjoy playing wheelchair rugby – often against young people who are 18-22-years old. Once we finish playing, I’ll tell those kids, “I’m old enough to be your grandmother.” Then their mouths drop wide open. Physically I’m 56 years old, but mentally, I’m much younger than that.
I’m very involved in all the activities at the Shepherd Center. I’ve also been to a camp through the Shepherd Center where we play wheelchair tennis in the morning and ride hand cycles in the afternoon. This camp is all about wellness and teaching people with spinal cord injuries how to live healthier lifestyles.
The camp also holds seminars on eating light, because people with spinal cord injuries tend to have weight issues. Part of living a healthy lifestyle is not only controlling what you eat, but how much you eat. We learn yoga exercises and do other fitness programs to get our cardiovascular systems revved up.
The Shepherd Center also has an adaptive swim team, a water ski team, a rugby team and a basketball team and works with local YMCAs to make their equipment more adaptable. Then people with physical disabilities can become involved in exercise programs and other programs offered by their YMCAs.
Kim Works for a Great Company: Lowe’s
I work for Lowe’s – a home improvement store. I’m a facilitator. I check and make sure all the trucks that are bringing in products are properly unloaded; the unloading process is done in a timely manner; and the products brought in are stored in the right places.
More than 390 people applied for this job at Lowe’s.
Once I learned I was the only person in a wheelchair who had applied for the job, I started thinking, “Why would Lowe’s hire me?” I realized Lowe’s didn’t have to make any kind of concessions for those other 390 people. After I was hired, they told me that they didn’t even look at my wheelchair. They looked at my resume and my abilities. Before I started work, they asked me to come in for a walk through to make sure I could get in and out of the doors, the bathrooms and my cubicle. They made certain the store was totally accessible for me.
On rainy days, they have me pull my vehicle under a covered awning almost into the warehouse to unload my wheelchair and get out of my vehicle without getting wet. They’ll have someone park my truck for me and bring me the keys. When I get ready to go home, someone will bring my vehicle to me, so I can put my wheelchair in, get in my vehicle and drive home. But, Lowe’s treats all their employees this way – not just me. I’ve been working with Lowe’s for 5 years.
More on Kim’s Life Today
I do Roll on Capitol Hill, sponsored by the United Spinal Association, every year to advocate for myself and others and to help legislators strengthen employment opportunities for all people with disabilities. Lowe’s is very supportive of me when I take time off to do activist work for people in wheelchairs and for research on transverse myelitis.
Wheel:Life’s Impact on Kim’s World
I found Wheel:Life’s Facebook page when it first began. I think I probably was one of the first 100 people who signed up for Wheel:Life. Because Wheel:Life’s founder Lisa Wells lives in Atlanta, I contacted her. She helped us promote Walk for Life – a transverse myelitis awareness walk to raise money for transverse myelitis research. I’ve stayed in contact with Lisa, and she’s helped us spread information about what the disease is, and what we’re doing and to raise money for research.
Additional Resources From Wheel:Life on Relationships
Within Reconnecting: Relationship Advice from Wheelchair Users, readers will hear from people who use wheelchairs as they share their perspective on friends, family and relationships including dating, marriage and parenting.
Author Lisa Wells shares real-life examples and success stories throughout the book based on her lengthy career that includes ongoing interactions with disability advocates, non-profit supporters and peer support group members.
Reconnecting: Relationship Advice from Wheelchair Users features interviews with:
- Graduate student & quadriplegic Ather Sharif about connecting on a college campus
- Amputee Thomas Morris on connecting through his unique appearance and personality
- NSCIA [Buffalo, NY chapter] President Natalie Barnhard who connects Wheels with Wings
- Paraplegic Todd Robinson who explains his family connection through the joy of adoption
- Quadriplegic Ashleigh Justice who connects on the quad rugby field and as a young mother
About the Author:
John E. Phillips For the last 12 years, John E. Phillips of Vestavia, Alabama, has been a professional blogger for major companies, corporations and tourism associations throughout the nation. During his 24 years as Outdoor Editor for “The Birmingham Post-Herald” newspaper, he published more than 7,000 newspaper columns and sold more than 100,000 of his photos to newspapers, magazines and internet sites. He also hosted a radio show that was syndicated at 27 radio stations; created, wrote and sold a syndicated newspaper column that ran in 38 newspapers for more than a decade; and wrote and sold more than 30 books. Learn more at www.johninthewild.com.