Let’s get the word out

I first learned about Transverse Myelitis and its life altering effects when my dad, Wayne Byerly, contracted the disease ten years ago this August.  My story is really my dad’s story.  His life story is rooted in strength, courage, and the undying hope of possibly a better tomorrow.  This has always been his life theme, but has taken on an entirely new dimension, tested to its extreme, through the years of day-to day facing his opponent in Transverse Myelitis. I recognize the themes of courage, strength, and hope, in many stories of those who struggle daily with the grueling symptoms of that common enemy.

BLOG_Story of Wayne Byerly - father of Karen Gorter - Debbie edits 5-1-13

My dad, who was 77 years old at the time, was working in my parents’ yard in southern Missouri in August of 2003 when he felt tingling in his left leg.  He went in the house, lay down on the floor and pulled his knees up to his chest to try and alleviate the tingling.  When he went to get up he found he could not.  He crawled to the telephone to call the neighbor for help since my mother was not home. With strength and tenacity he crawled to his friend’s car to be taken to the hospital.  That began the process of diagnosis and a three-week stay in the hospital.  Physical therapy, a wheelchair, crutches, and then a cane until he could walk on his own, with very little sensation waist down. Recovery became his full time focus.

My dad has described his feeling in his legs as a burning sensation.  He has likened it to imagining embers being flicked on his legs.  “My legs are very numb feeling and stiff and the muscles are sore.  The feeling is like if your legs were totally numb from a shot or nerve disruption.”  Basically paralyzed from the waist down, my dad has retrained his brain to be ever watchful where he walks in order to keep his tentative balance.  To look up or away interrupts that connection which can cause him to stumble or worse.

Dad’s transverse myelitis has affected every component of his life, and thus, my mother’s life as well.  There has not been a day in the past ten years of their life with Transverse Myelitis that their vows spoken 57 years ago claiming, “in sickness and in health” have not been lived out. The daily impact of the transverse myelitis for my dad has grown in its severity and impact through the decade with this disease.

“I spend more time than anything else in doing the things I have to do to keep my body as good as I can, so that I don’t become unable to be up and around.”  He added that his regime is most likely only prolonging the unavoidable—being unable to walk.  Tough to think about for a man who regularly walked six miles a day after retiring, and tackled 20 miles on his 70th birthday just so he could say he did.

In the ten years since, my dad and mom have struggled with his transverse myelitis, he continues to be humble and thankful.  “I appreciate the doctors and Betty for taking care of me all these years.”

My dad stressed, “I would like for more people to know of the disease and how it disrupts their life so much.  I am one of the more fortunate ones because I can use my arms and my breathing hasn’t been affected.”

I agree with my dad.  We need to get the word out for more people to know of this disease and how it affects people of all ages.

~ Karen Gorter, Michigan, one of the organizers of the Michigan Walk-Run-N-Roll Awareness Campaign. Support her efforts to raise funds for the Awareness Campaign here. You can also register or start your own team on the campaign’s main page!