Circus's have many exciting acts. Crowds are impressed with elephants walking in formation. They hold their breath when the lion tamer puts his head in it's mouth. It is amazing to see how many clowns come out of that tiny car. The acrobats draw all eyes as they "fly" on the trapeze. The one that causes all to hold their breath is the one walking, doing flips, and must keep their footing on the tight rope.
My life of living with "Mito" has become the "tight rope". Every day or even every hour is a balancing act. At any time my brain, muscles or nerves threaten to "fall off". I am grateful for the days when it seems I am on the ground. There are days when my feet don't want to walk the line, when I have to be glad for my support base. Then there are the days when I feel like I am falling and hope there is a net.
I have scared my wife and some medical providers. Things my body does, shouldn't happen. Heart rate, swallowing, temperature, balance, memory, thinking... stuff my "Mito" folk know all too well. The mind can't stop asking some questions. "Will this get worse?" "How long will it last?" "What else or new will show up?" For now I'm managing to stay on the rope. Some I know have "Fallen Off" and we sorrow their passing.
On a daily basis there are signs of hope. Treatments and techniques are being explored. The level of understanding of Mito is growing. I hope my time on the rope will inspire and offer answers to those that are next in line. Staying on the rope is amazing to some, confusing to others and requires change. The 10 years I have had with Mito is a lot different than the first 48 before.
I hope that my life will be about more than me.
Author Joel Westbrook, living with mitochondrial disease for the last ten years.