The power of advocacy

My life with TM started one day in October 1989, when my dad had to take my brother and I to go pick up our mother at the mechanic shop. Her car had broken down so the day was already not going well. When I got out of Dad’s truck I fell to the ground. My parents thought nothing of it and instructed me to get up, which I did. Over the next couple of days I was falling a lot and crawling around the house. My parents took me to a couple of different doctors since I was complaining of pain in my legs. It was believed I was simply regressing as a psychological reaction to entering kindergarten. The following day when I couldn’t get out of bed my dad called a nurse hotline and informed them what was going on. An ambulance was sent to the house and I was taken to the hospital. This time someone thought to X-ray my back. There it was – a lesion on my spine. I was admitted to the hospital that day.

At the time my parents were told that I was never going to walk again and that they needed to prepare themselves to have a paraplegic child. My mother, a nurse, asked a simple question, “Her spine isn’t severed, is it?” When the doctor responded, “No,” my parents decided that the prognosis wasn’t necessarily set in stone. That’s how things went for a while. My parents would receive some news about my condition and my mother would challenge that particular doctor with a question or two.

I eventually was able to go home and was set up with physical therapy. At that time I was still in a wheelchair. My dad stayed home to care for me, and my mother helped out with some “tough love”. I had to use my slide board to get in and out of bed. I had to wheel myself around when inside, and I had to exercise my legs… a LOT. My parents cared for me and loved me dearly and they simply wanted me to get better. I then moved on to leg braces and a walker, which meant more exercise!

We moved from Phoenix to Ottumwa, Iowa. When I was enrolling for school, the principal suggested that I be put in a special education class to accommodate my needs. Again, my parents challenged what they were told. My mother informed the school that just because my legs didn’t work didn’t mean there was anything wrong with my mental capacity. I was placed in a “regular” kindergarten.

I had some challengesto overcome and I have since mostly recovered. I still have some issues with gait and some muscle weakness. I have traveled the world, hiked mountains, walked the streets of some beautiful cities and have had more wonderful experiences than I could have ever imagined. The only way I could have lived this life was because I had people to advocate for me. When I was too small and too young to understand, I had adults in my life that cared for me enough to see what others couldn’t and ask the questions others wouldn’t. I hope that now, through my involvement with TMA, I too can be an advocate for others suffering from rare neuroimmunologic disorders.

KC

~ Kathleen Burns, diagnosed with transverse myelitis at 5 years of age

 

 

Advocacy is defined as “The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support.” Advocacy for individuals and families suffering from rare disorders is crucial to raise awareness and promote timely clinical care, research and development. We look forward to expanding our network of patients, families and researchers actively working with transverse myelitis and related disorders to shape our knowledge and understanding, and, by extension, our care for the patients and their recoveries. If you would like to share your story and be an inspiration to others to advocate for themselves, please email us at info@myelitis.org