Saturday, March 26, 2016

Falling On My Head


This has been a week of learning, anew, about family, frailty, vulnerability, grace, and courage to turn the cranks again.

Almost 3 years ago I was diagnosed with bilateral Temporal Lobe Epilepsy. It took a good while to find the right potion of meds to do the job of quelling my brainy electrical misfires, but we got the job done, my epileptologist and I. 

Last year's summertime surgery left my apple cart a bit unbalanced and I began to question whether this potion was still doing its job. A few med tweaks and my brain seemed a bit more trustworthy. 

In early March of this year, Kirk and I spent a week in Las Vegas for the Pac 12 Championship Tournament, the very best of fun, even though our Cats did not bring home a trophy. 

Sadly, I came home from Vegas with the flu, which morphed into pneumonia, which took me to the Urgent Care which morphed into a 2-3/4 day stay at the hospital. I was in the ER when my friend from Chicago arrived at our airport for a visit we had planned for 6 months. Challenging timing.

The  clunker, however, was two back-to-back tonic seizures I had in the house falling like a felled tree or a tipped over grandfather clock. Those seizures brought in the paramedics and an admission to Banner UMC. I know so many people with epilepsy have had so many tonic or tonic-clonic seizures (old term was grand mal) they can't even begin to count them. The impact of epilepsy on the lives of so many has  been staggering. The complexity of my situation pales in comparison. 

While my epilepsy experience(s) are ever so manageable compared to many, these recent tonic seizures reminded me again of my human frailty, vulnerability, and mortality. I was humbled by the many ways Kirk and my family supported me through this troubled time; grateful that I have an excellent and accessible epileptologist who understands and supports my cycling passion, and partners with me in the journey of medication management.

People with epilepsy work hard to figure out their "triggers"--what inner life and outer life events are likely to trigger a seizure. I've been on a trigger quest since the beginning of it all, but the events in the last 2 weeks can best be described as a "perfect storm", the flu/pneumonia being the keystone which crumbled my arch. 
Yesterday I rode for the first time in 2 weeks, 5 miles--seemed like 50. Today I'll ride 15 to an Easter Potluck with some cycling friends. Baby steps.

GABA, my bike club (Greater Arizona Bicycling Association), and the Epilepsy Foundation of Arizona (EFAz), and I have developed a partnership wherein, on April 17th we will offer our first Carpe Diem (Seize The Day) Bike Ride for all comers but where individuals with epilepsy and their family/friends can come ride with us and feel especially welcome. 

Here is the the flyer which the EFAz staff created for our Carpe Diem Rides and a link to the description of the Carpe Diem Rides on our GABA MeetUp site.



If you live in Tucson/Pima County and know of anyone who might find our Carpe Diem Rides an opportunity to enjoy being outside and riding with others who know what it like to live with epilepsy, or who are eager to learn about it, please share the link and the flyer with them. 









3 comments:

Cyclophiliac said...

Scary stuff, Susan - but with your bravery and perseverance, I'm sure you'll find a way to manage this and still log more miles on a bike than 99.9% of the population.

Slo Joe said...

Susan, just saw your blog link on the CardOMatic comment you made just awhile ago.

From one recumbent (older too) rider to another: Ride Long and Prosper. Have a bent bud in Portland (Sylva Halper) who has ridden around the world on her trike. There is a lot that can be done even on a trike. Keep at it.

Slo Joe

Susan said...

Slo Joe, I'm sure your bent bud, Sylva has a blog or something that does that trick. Can you send me the link to where she is sharing her journey? Thanks for responding to my post.