Rhythm: King of the Movement, Motor of Life

A SHORT HISTORY OF ME

I was born with a condition known as Ehlers-Danlos Syndrome,commonly called loose-joint disease. I began to have problems with my knees dislocating when I was nine years old,and other issues came up over the years,but we never knew that I had a “condition”…in my family we just thought I was weird.

I learned how to cope with my body and the tricks it liked to play and I managed to get through quite a few years without major problems. Then in 1996,due to many varied events in my life,I had a major health crash.

My joints hurt. My muscles hurt. My very skin hurt. I had no energy, no strength, no desire to do anything. Holding a newspaper took a huge effort,and used up the entire day’s ration of energy. My spinal alignment and posture were horrible.I could not sleep, I spent nights walking the hallway due to pain in my legs and back. I could not think…I seemed to be in a dark fog all of my days.

I was sent to a specialist who diagnosed the EDS and said mine was the worst case of hyperflexible joints he had ever seen. I said that made sense,since my motto in life was to do everything 100 percent! There is no cure and there is no drug that will make it go away. The secret is to learn how to live in harmony with the body.

I spent the next 12 years struggling to regain my Self.I was blessed with a doctor who understood that I had to figure out on my own how to get better. I developed my own physical therapy routines,starting with walking;and I added yardwork to be able to move my muscles differently. Eventually I was able to be active for about two and a half hours a day without feeling too many ill effects.

That plateau is where I stuck for about three years. If I worked harder or longer one day I was exhausted for the next three. I felt better all around,physically and emotionally,but I wanted to go beyond that two and a half hour limit.

And then in 2008 I met Marco. Our first date was a seven mile walk,longer than I had walked in years,and really about twice as far as I should have gone but I was not about to tell him that! I was in love after the first word and I would have walked around the world to keep listening to his voice.

He introduced me to the ultramarathon world when we participated in a 6-Day Race in 2009. I was mainly there to be his crew,but I had also entered the race so that any laps I walked while keeping him company would be part of the official records. And I was absolutely enchanted by the sport,by the people,by the spirit involved.

That spirit is my life,only concentrated. I would say that one hour in a 6-Day event is comparable to one day in my life. Every day I have to ask my body to keep going when it really would rather stop. Every day I monitor my body to see what I will be able to do….can I accomplish my goals for that day or do I need to change my plans?
Every day I try to be my body’s partner…some days we fight and some days it wins, but mostly we work together,which means that every day is a triumph of spirit.

I learned long ago not to judge my progress daily or even weekly. I have to rate my improvements over a time frame of at least a year or more. I still have far to go before I feel the way I would like to feel, but I know that just like in the 6-Day events,if I simply keep taking one more step, I will get to where I want to be.

APRIL 1, 2012.