Saturday, July 23, 2016

Athletes v Epilepsy

Cycling is a huge part of my life: the heart of my social fabric, my advocacy work, my zen, my joy.

How did I get started in cycling and what keeps me pedaling when the snow flies, the temperatures soar above 100 degrees for, the rain pours, mountains stare me in the face, and the white line along the side of the road ribbons for ever and ever?

For me, a vision, a goal that would stretch me beyond what I ever thought possible, has always been key to sustained engagement in everything I do. Since the early 1980’s I had dreamed of riding across the country. At that time our children were quite young, I worked full time, and money was not plentiful. 

By 2006, age 60, my circumstances had changed. I signed up with an amazing cycling tour company to cross the country in 26 days, which meant riding more than 100 miles a day for 26 days, with no days off. Now That required a LOT of training. I never knew if my training would be enough, if I could measure up to the national-class athletes that rode with this particular company. No doubt it was a challenging ride: eating breakfast in the parking lot every morning at 6:00 a.m. wheels rolling by 6:30; climbing the equivalent of a mile every day; washing the bike and making sure it was mechanically sound every day; swapping stories over dinner with co-riders, lights out no later than 9:00. Dipping my wheel in the Pacific and 26 days later finally dipping the front wheel in the Atlantic was indescribably satisfying. That experience turned out to be so much fun I decided to do a second one three years later, age 63: different route, more miles, 30 days, no days off. 

Training for the transcontinentals meant I was riding 12,000 miles a year. After the transcons, 12,000 miles became a way of life. It’s hard for me to imagine not riding every day and watching my monthly progress to reach 12,000. For 14 years I have tracked my miles and what i experienced and learned from each ride.

Out of the blue epilepsy joined my life in 2013: bilateral temporal complex partial epilepsy. I am one of the 60% diagnosed with epilepsy for whom there is no identifiable cause. I was 67.

Despite all the life-rearranging that has occurred since my epilepsy diagnosis, I have still been able to ride 12,000 each year. I used to ride my “long rides” (130-200 miles) alone. Since epilepsy I have needed another distance rider to ride my long rides with me, just in case. Friends have come from Tucson, Portland, Seattle, El Paso, Phoenix, and Chicago to ride with me. I celebrated my 70th birthday with a 200 mile ride in 17 hours with a friend from Phoenix and a friend from Chicago. 

This year my 12,000 mile annual goal is at risk. In March I had a “perfect storm” of back-to-back serious tonic seizures, flu, and pneumonia all at the same time. That put me in the hospital for 3-days. I was off the bike for a few more days and it took yet another few days to regain my strength and endurance. 

When The Epilepsy Foundation introduced it Summer Challenge of Athletes v Epilepsy it seemed like a natural fit. Keep doing what I’m already doing, ramp it up a notch hopefully bridging the gap to reach my 12,000 mile goal, and raise some money for epilepsy research and treatment at the same time. Perfect!

After having been diagnosed with epilepsy I was committed to being open to talking in appropriate ways about the diagnosis, the disease, and the impact it has had on my life. 
I had a seizure about 18 months ago and fell off my bike. I talked about that, too. I talked about it on social media; I talked about it in my blog: www.bentwanderings.blogspot.com; I talked about it at church; I talked about it with my local cycling friends. 

Falling off my bike during a seizure was, to me, a message I needed to transition to a a high-end trike to minimize serious injury or death from seizing while riding and falling into traffic. 

I am committed want to “putting a face on epilepsy.” I want people to know about the disease, to understand they don’t need to be afraid of seizures or people with epilepsy. I want to encourage people to find their own ways to support individuals with epilepsy and their families so they don’t have to live solitary lives or remain hidden. I want people with epilepsy to find ways to stretch themselves, to move outside their comfort zone and feel the joy of wind in their hair, sharing the road with friends. 

You ask, “How does it feel to be raising funds for the Epilepsy Foundation?” 

I ride with a bike club in Tucson, The Greater Arizona Bicycling Association (GABA) and I am connected with the Epilepsy Foundation of Arizona. Together the two organizations and I have created bike rides for people with epilepsy. We call them Carpe Diem rides. I have provided seizure training for a number of members of GABA to be ride leader assistants for our Carpe Diem Rides. The joy of riding with others who share an epilepsy diagnosis and who are catching a new vision of what they can do is amazing. 

I understand that epilepsy is a spectrum disorder. Some individuals and their families have been profoundly impacted by the disease, others have been impacted to a much lesser degree. I was diagnosed three years ago at age 67. My seizures and frequency of seizures fall on the more gentle end of the spectrum . Yes, it has presented me with some challenges: the need to ask for help, the need to give up some freedoms, the need to be continuously alert to the possibility of my next seizure and not knowing what type of seizure it will be. Despite epilepsy’s ever presence I have been able to participate in most all of my chosen activities and passions. 

I believe there are four spokes to my wheel that make it possible for me to live daily with my epilepsy: a treatment team, appropriate medication to manage my seizures, a social community of those who can support me (some with epilepsy, some without), and physical activity that can support my physical health, happiness, and gratitude.

What I hope is that everyone with epilepsy can find and embrace the spokes of their wheel to support their ability to live well.

If any of you are seeing this for the first time and would like to support my effort to fundraise for the Epilepsy Foundation, my fundraising page is HERE


2 comments:

Phil Murphy said...

Very poignantly written, Susan. You are boldly bringing to light a situation of which most folks are not aware. Kudos for the stamina and dedication you bring to this cause!

Susan said...

Thank you Phil. Your kind words mean a lot to me. I really am trying to put a face on epilepsy without being self-centered, but not being so top-sided that others don't have a clue.