Friday, August 19, 2016

YES I can, YES I will: Hooah

Sunset Rd Summit with Dave Purwin

I think it was by accident (except I believe there really are no accidents) I came upon the "ask" by the Epilepsy Foundation to participate in their Summer Challenge: set a physical fitness goal and a fundraising goal for the three Summer months. 

That ask was perfect for me! 

Five years ago my husband and I relocated to Tucson for retirement after 40 years in Chicago. Since retiring and despite two serious bike accidents for my husband; despite my abdominal surgery; despite my brother's death; despite my diagnosis of epilepsy 3 years go at the age of 67 and all the figuring out that goes with that diagnosis; despite, because of seizures, needing to transition from my 2-wheel bike, which I had ridden across the country twice; despite the theft of my trike and needing to replace it quickly since it is my primary means of transportation because of epilepsy, I have still been able to ride 12,000 miles a year for the last 10 years. 

So, riding my bike 3,000 miles during the 3-month Summer Challenge should be quite doable, as long as I stay healthy and uninjured.

I liked the sound of 3 months, 3,000 miles, $3,000 so that became my Summer Challenge goal.

Riding in Tucson in the Sonoran Desert in the summer can be a challenge. In June and July we had way over 30 days of 100 + degree days (~38 degrees Celsius). At least 26 of those days were consecutive. Riding in that kind of heat day after day, for the numbers of miles per day I need to ride to make my goal, is almost unsustainable. But sustain, so far, I have.

Then came the monsoons.
Photo credit: Damion Alexander, Tucson week of August 15, 2016
Monsoons usually arrive around the Fourth of July. Tucsonans love the monsoons because they bring a break in the burning heat. Like seizures, monsoons are nearly unpredictable: microbursts of 50-80 mph winds, hail, lightening strikes the likes of which are caricatured in movies; lightening strikes that can be responsible for wildfires, deaths, and destruction of property. Monsoons bring life threatening flash floods capable of washing away SUV's with passengers still in them, with 4-8 feet of water in river beds that have been bone dry for the past 350 days.

Photo Credit: Tucson Daily Star: Submerged vehicle driven by Pima County Supervisor

In my opinion, monsoons bring the most breathtaking sunsets in the whole world.


After 2 months of the Summer Challenge I continue to be on track for 3,000 miles by September 20th, the end of the Challenge.

Creatures in our desert become excited by the monsoons as well: Spade Foot frogs, that live underground in arid climates and only come up when there is enough water for them to breed. The dry river bed that was filled with water by the flash flood above was dry again within 2 days. I was chorused by the Spade Foot frogs for 5 miles one night when returning by bike from an epilepsy support group. That same evening i all but ran over this beauty, but we passed peacefully.

Diamond Back Rattler
By July 20th, the end of the first month of the Challenge, I had raised $3,000. A few more dollars continue to come in, enough so that I'm hoping I can exceed my first goal and achieve a new goal of $3,500.

Riding is more than just a way of life for me. I truly believe it is critical to keeping my brain chemistry and electrical circuitry stable. Yes I'm on medication and it took a bunch of trials of this and that to get what is, at least for now, an effective combination. Yes, I have side effects, not unlivable ones, but ones noticeable to me and that I wish I didn't have. But, I'd rather have irritability, anxiety, and mild depression than seizures. 

It's not easy to find a cohort of others with epilepsy. People with epilepsy don't hang out en mass at coffee shops or bike shops wearing cycling kits that advertise epilepsy. People with epilepsy don't join MeetUp groups specifically for individuals with epilepsy. 

Since my epilepsy, at least for now, is on the gentle end of the spectrum, I feel called to tell my story. I'm hoping by doing so I can give hope and be an inspiration to individuals with epilepsy, whether theirs is gentle or profound that "YES! I can ride a bike and feel the wind in my hair and the gift of freedom to do something I never thought possible. YES, I may need a bicycle adapted for my particular limitations. YES, I may need a family or friend to ride with me, just in case. YES, I may need to ride a trike, or a tandem, or a tandem with one bike being a trike and the other bike being a traditional 2-wheeled bike. YES, I can use social media to help me find the resources to make this happen for me!

In Tucson GABA, the largest bicycle club in Southern Arizona, in collaboration with the Epilepsy Foundation of Arizona, have  developed bicycle rides which we call Carpe Diem Bike Rides, specifically for individuals with epilepsy and other neurological issues. Visit us on Facebook. Enter @carpediemrides in the search field on Facebook.

I have been trained by the Epilepsy Foundation of Arizona to be a volunteer to work with individuals with epilepsy. I have, in turn, trained 6 ride leader assistants; 8-10 more will be trained early in September.

I feel called to do all that I can to make Carpe Diem Bike Rides successful welcoming individuals with epilepsy and other neurological issues and their families and to socialize together after the ride over coffee or lunch. Friends riding with friends.

If Carpe Diem Bike Rides in Tucson grows and grows, then we will know it can grow and grow in other cities across the country, maybe even globally. If Carpe Diem Bike Rides grows and grows, there WILL be purple cycling tee shirts and cycling jerseys and others will be be more aware.

As said in a global self-help fellowship responsible for saving the lives of thousands: One Day At A Time.

I am committed to managing my epilepsy one day at a time and invite you to join me in building community, challenging yourself to integrate physical activity into your daily life, building an effective treatment team, and faithfully following the treatment regime prescribe by your neurologist and epileptologist.

Seize The Day With Courage and Faith
HUA (Heard, Understood, Acknowledged)




No comments: