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


Wednesday, June 22, 2016

Random Act Of Kindness or Accomplice?



The Gulch 

Three weeks ago I set out on my ICE trike at 5:00 p.m. to run a couple of errands.There are many, many connectors to Tucson's multi-use, non-motorized path fondly known as The Loop. A few feet into the ingress I was using to access the Path, I came upon a late 40-something man standing over his bicycle. 


Me: You ok?

Man: I just need some shade.

Me: Well, the only shade right here is that scrawny Mesquite tree right there.
Scrawny Mesquite Tree

Man: Well, I think I'd rather just go down in that gulch.

Me: Why? There's no shade down there. Are you from around here?

Man: Yes

Me: Well then, you can just cross the Country Club bridge, ride down to that ramada right over there and there's a lovely park with real trees, a restrooms, tables with benches. I'm heading that way if you want to follow me. How long have you been out? (It was one of our merely 100 degree days).

Man: Since about noon.

Me: Wow, that's a long time. Do you have water?

Man: No

Me: Well, here drink up. I don't need this. I'm just running a couple of errands.

He drank only a modest amount of water. As I turned to give him my water bottle I noticed that his Tee shirt had only a tiny bit of sweat on it. I also noticed he had no water bottle cages on his bike which was a brand-new looking suspended hybrid. 

Me: Well, I'm heading on now to do my errands now. If you want to follow I can point out the park.

Man: No, I'll just go down in the gulch.

It took me about a half mile before it occurred to me the bike was likely stolen. I had not noticed the make/model of his bike so no way to call it in.

What began as a random act of kindness I'm confident turned into my being an accomplice.

Three weeks later my bike was stolen. Karma? Don-know.  

Tuesday, June 21, 2016

Able To Drive Again, Wonder For How Long?

August 2013, age 67, I was diagnosed with epilepsy. Quite a surprise since there were no pre-existing circumstances. I am one of the 60% of all people with the diagnosis of epilepsy for whom there is just no cause found.

In the state of Arizona one must be seizure free for 90 days before being able to drive legally. Many times these almost three years I would approach 90 days and then have another seizure. There was one time I was able to drive for several months, and then lost my privilege again. 

Quite coincidentally my bike was stolen just a couple of days before I reached being seizure free for  90 days. 

I credit cycling on Tucson's deadly roads1,000+ miles per month before, during, and after my diagnosis with my being able to return to driving with nary a hitch. As a cyclist who shares the roads with motorized vehicles who travel 45 mph or more, one becomes hyper alert to traffic behavior. One becomes skilled at  sharing the road with behemoths who are sometimes thoughtless or worse.

And so today, June 21, 2016 was my first day to drive since my perfect storm of flu, pneumonia, and seizures mid-March. 

What I noticed:
  • I felt no leaping for joy; 
  • I felt grateful to not have to ask Kirk to drive me to where I needed to be by 7:30 this morning.
  • I felt grateful I didn't need to leave the house by 5:30 on my bike to get to where I needed to be by 7:30 a.m.
  • We've had temperatures that have averaged 107 the last couple of weeks and are forecasted to continue. When bike commuting at those temps you do what you need to do, get home ASAP, and stay home.
  • But today, since I could drive, I did multiple errands on my way home from that 7:30 a.m. event. 
  • I was surprised at the freedom I felt to go into places for my errand shopping and not have the nagging angst whether I'd have a bike when I exited the store. And of course, a week ago today when I came out of the optical store I did NOT have a bike. GONE. 
  • Most of the time I take my bike, now trike, into the store with me. But there is no way to trike it down the isles of grocery stores. So, it is still left vulnerable within the vestibule of Safeway, or the like.
When I get my new bike in a week or so I will gladly return to bike commuting nearly 100% of the time. 

I will be continue to grateful for the privilege of driving if there are times I must; but if I have to surrender the privilege again, so be it.

I will continue to share the road with great respect for all users whether I'm driving or biking. All of us are vulnerable road users at one time or another. We are all mothers, fathers, sisters, brothers, children, husbands. wives, partners. All of us want to come home safely each day.

Sunday, June 19, 2016

R-12 Abandoned


July, 2015 I completed my first R-12, an award given to Randonneurs who have completed 12 consecutive months riding a sanctioned Randonneuring event. In the case of the R-12, the event must be a minimum of 200k (125 miles). All Rando events are unsupported; some are organized events meaning that the event is published (called a Brevet) and a group of Randonneurs will all start together. The rider must complete the ride in a given time for the ride to be successfully completed. 

These are small events compared to the El Tour de Tucson-type rides. A typical number of riders would be 10-50. There is another sanctioned Randonneuring event called a Permanent. It is not a publicized event. The rider simply contacts the owner of the route, asks permission to ride the route and follows all the procedures, including documenting that the event was completed in the required time frame. 

Riding for the R-12 award is not necessarily the hardest part. Equally challenging is managing my calendar, managing my health/wellness, coordinating family and community responsibilities, and, oh yes, managing the weather.

The satisfaction I enjoyed of completing my first R-12 was enough for me to "re-up" for my second R-12 which I started in October, 2015.

Every part of the country has its challenging and troublesome months weather-wise. Southern Arizona's challenging months need no explanation. Sure, I could go to a cooler clime and score a successful ride in our hot months. But flying with my trike is not easy and it's expensive for a on-day ride. Driving to Southern California could be an option, but I've been unable to drive for virtually the entire time since I was diagnosed with epilepsy in August, 2013. 

June, 2016 has been a record setter for consecutive triple digit heat days as well as how hight the thermometer went on each of those days.  

My Rando friend, Amy Acosta, and I planned to ride a Permanent from Tucson to Phoenix on June 8th. It would be my 9th qualifying ride out of 12. Kirk was already in Phoenix;  we'd enjoy a play day before heading back to Tucson with Kirk by car. The forecasted temperature for the 8th was 108. Amy and I agreed it just didn't seem wise to knowingly set out to ride through the desert under those conditions.

BUT, Saturday, June 11th looked very promising: the high would only be 95. We'd ride a Permanent around Tucson. We started riding at 05:00. Lunch was at Mile 84 in Marana. I had no more in my tank. It was 95 degrees with a humidity of 60-65% when we're acclimatized to an average humidity of 10%. 

I abandoned my quest for number 9/12 toward my R-12. Hopefully there would be another under triple in June. There's no evidence that such will be the case.

June 14th my trike was stolen. My 2nd R-12 quest is now totally abandoned.

I'm expecting my new trike to arrive by July 1st, so I'll start in July for a new R-12 quest.

Life happens.

Sunday, May 29, 2016

If It's June It's RAAM Time (Race Across America)


It took me a year to heal spiritually and emotionally. When I came out on the other side I was able to complete a 15 minute movie of my 2nd transcontinental. I offer it to you HERE

Race Across America (RAAM) has held me curiously spellbound for most of June since 1982, the year Lon Haldeman, John Howard, Michael Shermer, and John Marino left Santa Monica for the Empire State Building in The Great American Bike Race. Lon broke his own solo record from the year before by more than 24 hours: 9 days: 20 hrs.

Lon grew up in Harvard, IL, about 50 miles from where I lived. A cow was the center piece of the town square. I would drive up just to see the cow and somehow feel I was in the auricular presence of this phenomenal athlete, this humble, generous, man of few words.

I never raced; I never podiumed; but I have found the courage to push myself out of my comfort zone. Who am I really? Who will I be when I come out on the other side of a cycling event that is so much bigger than I am.

To ride across the country twice with Lon Haldeman and Susan Notorangelo’s bike touring company, PAC Tour in 30 days or less is one of my most treasured gifts of learning. My first transcontinental at age 60 in 26 days was pretty much a “walk in the park.” My second transcontinental three years later was nothing short of painful for 21 of the 30 days. Every personal demon I had ever known rode with me wrapped around my neck like a boa. That tran has continued to teach me how to live my life with courage, humility, gratitude, and self-forgiveness.

RAAM 2016 starts June 14th from Oceanside. Learn more about this years RAAM and its racers HERE

I hope you will find the time, too, to watch ABC's coverage of that historic 1982 Great American Bike Race. It is memorable. Still brings tears to my eyes no matter how many times I've seen it and every time I watch the award winning,  artistic triumph, Bicycle Dreams

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. 









Thursday, February 18, 2016

Between Two "G's"


Grief and Gratitude are part of the human experience. Some G’s are big; some G’s are small. But the size of the G and it’s impact on our life is very personal and will be experienced within the context of our current life circumstances.

Two sets of Big G’s are currently impacting me: epilepsy whose birthdate was August 27, 2013 and the death of my brother from alcoholism February15, 2016. Despite their first blush of disconnection, both events are helping me move in a more complete way from grief to gratitude.

Epilepsy gave me pause to consider how far from home I could safely ride my bike alone and what kind of tracking device I would need in case I had a seizure on the road. Since 80% of the time since being diagnosed I have been unable to drive, I have been dependent on Kirk or other riders to drive me to the start of remote rides. Not being able to drive has been a deciding factor of where I can fly for big rides; renting a car at the other end is no longer an option. A riding buddy must be at my destination to provide ground transportation. These were but lifestyle changes that felt much more like adjustments in daily living and never really created a blip on my griefometer.

Since the beginning of living with epilepsy the needle on my gratitudometer has registered “fully charged” every day:

  • We live in Tucson, no longer Chicago, so I can ride 365 days a year and I can bike commute everywhere.
  • There are countless routes that are bike friendly where I can train, mountains to climb, cycling clubs to ride with, or I can ride solo in meditation and centering. So many options.
  • Since I am retired, there is no pressure to excel professionally, commute exhausting distances daily, help our children grow, mature, and blossom all while managing epilepsy.
  • I had achieved four of my big bucket cycling goals in the years before being diagnosed:
  • Riding two transcontinentals with PAC Tour in 30 days or less
  • Riding a minimum of 10,000 miles with PAC Tour
  • Riding in all 50 states
  • Successfully riding multiple 500-1000 mile self-contained tours, no camping, though
The remaining bucket list of my cycling goals are able to be (or have been) accomplished locally and do not have to be be diminished by epilepsy.

So where’s the big grief G?

I have ridden 12,000+ miles a year for the last 10-12 years so I'm not just tootling around the block. March 27, 2015 I lost consciousness for just a few seconds and fell off my beloved Bacchetta Ti Aero. Falling off my bike unexpectedly because of a seizure in the world of motorized vehicles is a terrifying thought. I always knew that at some point I would need to transition to a trike (a gift of years kind of thing), but I was not expecting the transition to come quite so soon. Two months later I had sold my Ti Aero and an amazing ICE Sprint X was tethered in our garage. My new ride.

Hielo (ice in Spanish) was unquestionably a big G gratitude. But soon I learned its weight and  three wheels contributed to a huge (by my standards and expectations) decrement in my performance. I would never be able to ride or climb as fast or be anywhere near able to perform at a level that would allow me to ride effectively with the folks I had ridden with while riding the other bike.

I tried and tried to stay in the gratitude, but would repeatedly find myself sinking into self-deprecating funk spirals, stuck in the ” yeah buts”, "if onlies” and resentment that epilepsy had interfered with my former joy of performance. Friends and family would remind me that at age 70 I don't have to compete with those who are 20, 30, or 40 years younger, but I refused to hear it. I couldn't fully accept my new reality.

February 6, 2016 Margaret O’Kelley and I drove to Scottsdale to ride the Arizona Brevet Club’s 300k which was 192 miles when the 5+ miles of riding to the start were included. A little subgroup of 4 of us rode the the route together. We were 4 of 8 who were in the back of the much larger pack due to my much slower pace riding Hielo. Somewhere in the middle of the desert’s dark of night my phone rang. My brother’s ex-wife was calling to say my brother had been admitted to hospice and would be receiving last rites the next day. He lived only about a week before dying a most unnecessary death to end stage alcoholism. He was never willing to accept the reality of his disease, never willing to ask for help, never willing to receive help. He died a pauper both economically and relationally.

I stewed for a couple of days in my self-righteous anger toward him which then morphed into sadness that such a gifted person chose to stay stuck in his disease rather than embrace the possibility of recovery and gratitude.

As it is said in AA, whenever an alcoholic dies drunk, he/she has bought the hope and possibility of recovery for someone who is still suffering.

While his brain disease and mine are totally different, his impending death, tolled by the bell of my phone in the dark and solitary desert, bought me the gift of Big G gratitude.

I am now looking fully forward to discovering how I will use that gift of Gratitude in the lives of others who find themselves stuck between two G’s--grief and gratitude.