Saturday, April 08, 2017

First you will notice my background theme has changed. My profile has changed, too. Both are intentional. From 2005-2013 all of my blog posts focused on my cycling adventures and accomplishments on my 2-wheel recumbent. 
Epilepsy entered my life Summer of 2013. Four years later I am still not driving. Much about the how, when, where of cycling has been impacted as well. How much (miles per year) is still the same, 12,000+, but that will likely change relatively soon as I age-out. I'll be 72 this Fall.


Facebook has impacted my blog entries as well. The snippets of daily rides and pix of same are more often posted on FB which also flow into Twitter. Blog posts have now tended to reflect periodic review over several months which include
more personal reflections, struggles, and joys.

My last blog post was in January 2016. It is certainly time for an update. One will be coming, but now I'm heading out for a glorious ride. The temp is 78 and only wind only 7mph. 

More later.
Kirk

San Xavier Mission

Lightning during a monsoon 

One of many stunning sunsets

Bougainvillea 


Friday, January 13, 2017

2016: Making Friends With Fuego



Atop Sunset Road, Tucson


Fuego’s sister, Hielo, was stolen just about a year after she came to live with me. In Spanish Hielo means Ice, the make of my trike. While Fuego was Hielo’s twin, he has his own name, Fuego, meaning Fire. Fire seemed like an appropriate name representing my passion and tenacity to continue to find ways to keep riding and achieve my annual mileage tradition of 12,000 miles.

Both Hielo and Fuego were ICE trikes, a transition I made in March 2015, after falling off my dearly beloved Bacchetta Ti Aero named Tibee. She and I crashed in the Mosaic Park on the Santa Cruz River Path in Tucson during a seizure. Neither she nor I was hurt but the event heralded that I would forever after ride on three wheels, and likely would never drive a car ever again. I am a vulnerable road user as a cyclist at the mercy of motorized vehicles. I could not live with myself if I, as a potentially impaired driver, was responsible for injuring or killing a pedestrian or cyclist.

A cycling friend, Wayne, pointed out that riding on three wheels would not prevent me from drifting into traffic were I to have a seizure. True that, but at least it would likely only be I who was injured or worse.

Our insurance company covered the loss of Hielo 100% minus the deductible. My trike was as expensive as most high-end carbon road bikes which weigh only 13-16 pounds, at least 3 times less than Fuego’s weight. USAA expedited the reimbursement when they learned the trike was my primary means of transportation. Similarly my bike shop, Ajo Bikes, was beyond supportive expediting the replacement within 2 weeks even though the trike was made and shipped from the UK.

Fuego’s Is made of both steel and aluminum because he needs the strength to be able to fold for easy air transportation. Add a rack for hanging panniers so I can be independent to go grocery shopping, add a bag of tools including tires for wheels of two sizes, add a fluid hydration system capable of carrying 70+ ounces for riding distance in the Sonoran Desert summers where temps are frequently 100-110 degrees, etc.; Fuego is a heavy and wide load.

Many people think that a trike will be as fast or faster than a traditional road bike because it is more aero. Not true. Despite running road tires (28’s), having a third wheel and no two wheels in direct alignment with one another (406 front and 700 rear) the third wheel adds a drag requiring 20-30% more effort one the flats.

(L) Amy Acosta--Tucson, (C) Me, (R) Margaret O'Kelley--El Paso
Most days I’m rich with gratitude for still being able to ride for joy, to clear my head, and for transportation. I continue to be amazed that many of my cycling friends are willing to ride with me despite my inability to perform at the speeds I rode on my Bacchetta. Some of my Randonneuring friends have even come from El Paso, Chicago, Phoenix, and of course Tucson to ride distances of 200 and 300 kilometers (125-190 miles) with me.

Some days, though, I find myself whining and pining for my good ‘ole days.

I’m getting better at being able to move more quickly from whine and pine back to gratitude. After all, no matter what bike I ride at age 71, I should expect decrements in my performance.

Several things have contributed to my growth in acceptance and peace:
  • Even professional athletes “age out”. Some leave with grace, dignity and find new ways to contribute to the development of young athletes with potential, or they find other ways to make a difference in their community.
  • I have accomplished nearly all, if not all, of my personal cycling goals: riding two transcontinentals each under 30 days, riding in all 50 states, riding 200 miles in 12 hours, riding 10,000-12,000 miles each year for the last 10 years. Some of those years I was still working full time, two of those years I was riding the trike, three of those I was learning how to manage my epilepsy. I know it is time to give back. I am finding ways to do that through GABA, my Tucson cycling club.
  • I recently read a book, “On Fire” by John O'Leary, a young man now in his mid 30’s. At age 9 he accidentally caught his house on fire and sustained 3rd degree burns on 100% of his body save the top of his head. Miraculously he lived. All of his fingers had to be amputated and yet he plays Mozart on the piano! I hope you read his story.
  • And I'm whining and pining about losing 2-3 mph of speed one my trike? Susan! Get a grip!!!!!!

I've learned much in 2016 about acceptance, gratitude, giving back, friends who have sustained me and who I hope they can say the same about me.

I have learned much about epilepsy in general and how to manage my own, although that remains a work in progress, as is living with any chronic condition.

And, I have learned a lot about trikes, their wonders and limitations, but that can be said about each of us as well.

San Xavier on Near Christmas Eve
My 2017 journey will not be taking me to exotic countries or even to new places in the US. I am, however, looking forward to what I'll learn and how I will grow in 2017.

Enjoy you own journey.

Tuesday, September 06, 2016

Summer Challenge September Update: 3 months, 3,000 miles, $3,000

Sunset Rd Summit Overlooking Tucson
As you may remember, the Epilepsy Foundation’s 3 month Summer Challenge began June 20th and ends September 20th. Participants could determine their own physical challenge and set their own financial fund raising goal for the Challenge period.

As an “every day” cyclist, both in terms of how often I ride and my skill level, it is no surprise I chose cycling as my physical challenge goal. Since I have cycled 12,000 miles (19,355 km) each year for the last 15 years, riding 3,000 miles in the 3 challenge months seemed like a logical goal. It followed then that $3,000 would be my logical fundraising goal.

As I write my September update I have 15 more riding days. So far I have ridden 2,694 miles leaving 306 miles yet to be ridden. That calculates to a minimum of 20 miles per day which is totally doable if I remain healthy and uninjured.

I have already raised $3,300 to date which is amazing, thanks to your generous contributions and your generous spirit. Like every athlete, when I achieve a goal I usually set another goal and begin calculating just what needs to be different in my training and my manner of living that can help me achieve my next goal. And so, my new financial challenge goal is $3,500 in the remaining 15 days. 

Focusing on just these particular three months has been quite the teacher. Focus is a key denominator in accomplishing just about anything of significance. The two significant goals, over which I do not have full control, in this designated period of time, are the 3,000 miles and $3,000. Focusing, pacing, prioritizing seem to be native skills for me; however; riding 3,000 miles with no ride-altering happenings beyond my control adds a dimension of “planning the process while not planning the outcome”.


In terms of life and ride-altering happenings during these three months the following events have provided me with the opportunity to recalculate and adjust day by day to reach my 3,000 mile goal:
  • my brother’s death and related travel from Arizona to New York (days off the bike)
  • family vacation travel (days off the bike)
  • a quick trip to San Diego to visit our daughter and catch two Chicago Cubs v San Diego Padres baseball games (days off the bike) 
  • theft of my bike, dealing with all the insurance complexities, replacement of my bike from the UK (significantly reduced mileage while riding an alternate bike)
  • near record-breaking heat in the Sonoran desert: (unable to ride expected distances per day)
  • near record-breaking monsoon rains and flooding (needed to detour several routes to avoid   flooded areas)
Uprooted tree from monsoon flooding
Rillito River which is totally dry 355 days each year


A night time user of the muti-use path when the pavement is not so hot

















  • a few simple partial and complex partial seizures (depletion of energy and adjustments for safety)
  • my husband’s serious bike crash (support for his comfort and care)
  • my two bike accidents. One resulted in the wound becoming infected, the other resulted in a sprained ankle and the need to replace my rear wheel. (reduced mileage during the resolution of these events.)
My fundraising goal? 100% of my original goal was met within the first 30 days of the Summer Challenge. The outpouring of support from friends and family has left me humbled and beyond grateful. All of you who have contributed are friends from several corners of my life: some of you have been friends for many years, others are newer friends who have become part of my life here in Tucson after we retired here 5 years ago. Some of you are family, some of you are friends from the various churches Kirk pastored or where we now attend. Many of you are cycling friends. 

As a result of such generosity, I’m hoping I can achieve my new goal of $3,500 (only $200 needed to reach my new goal) to make a difference in the care of individuals with epilepsy and for research for effective treatment, especially for those who are living with uncontrolled seizures. 

And finally, I am humbled, amazed and grateful that in my 71st year I am still physically able to continue to ride 12,000 miles a year. 

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)




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.