Friday, October 30, 2015

Mobility Assistive Devise: The Operative

We have all experienced the seeming injustice of paying exorbitant overage fees to fly with our bikes even when they meet airline size requirements. Guns, snowboards, golf clubs, and huge, heavy who-knows-what's inside are not subject to bike fees that range in the neighborhood of $250-$350 dollars one way, a fee sometimes even greater than the price of the ticket for the traveler!

Traveling to Chicago in early October would be the first time I would fly with my ICE trike, Hiello. 

I was not hopeful rolling in an extra large, HUGE, hockey goalie bag 44" x 24" x 24" with the frame bubble wrapped, the seat and various bike sundries nestled in the free space.  The 700c rear wheel and dual 406 front wheels were in my ZIPP wheel bag. 

My first bag was checked in with an expected $25.00 charge. 

The Goalie bag rang up at $150, the wheel bag at $160. To get it home the total would be $620!! Another reason why cyclists drive across the country with their delicate cargo for events!!

I had taken pictures of the bike in its various stage of disassembly, printed them and placed the portfolio in the goalie bag for discriminating TSAs.

Then there was the question: 

TSA: "What's in the bag?" 
Me: A mobility assistive device.
TSA: "Open the bag." I did.
TSA: It's a bike!!
Me: It's a mobility assistive device!!

Back and forth we went neither of us budging.

Me: I have epilepsy. When my seizures are active I can't drive. This is how I get around. Here is my physician's statement. 

TSA: What's in the other bag? Wheels for the mobility assistive device.

Ticket Agent: Ok, ma'am; enjoy your flight; your device bags fly free.

My first choice would not have been to transition to a trike, but my gratitude that it allows me to continue to ride under my circumstances trumps any frustration with TSA or diminishment in my performance. 

Thank you United. My hope that there just may be a bit of reasonableness in the airlines has been encouraged. 

Saturday, October 17, 2015


I was inspired by my friend, Jefferson Rogers, to pursue an R-12, a Randonneuring challenge of riding a Randonneuring-sanctioned event of no less than 200k (125 miles) and no more than 1200k (750 miles) every month for 12 consecutive months. He started his R-12 in January 2014, I started my 12 month run seven months later.

My Randonneuring goals are quite modest: I would do only 200k's and I would do them only out of Tucson since I was unable to drive to remote starts due to my epilepsy that was still not managed with medication. Starting my R-12 in August was a bit challenging given that I live in the Sonoran Desert. All R-12 randonneurs will face weather perils, it's just a matter of which ones: heat, sleet, wind, tornadoes, monsoons, darkness, or.....

Randonneurs can ride with other Randonneurs and achieve RUSA credit for their event, but riding with a non-RUSA member during a qualifying event would be disallowed, as would be any crew support along the way, and repair of any mechanical issue by a "professional". The heart of Randonneuring is to be self-supporting/self-sufficient.

Since there were only 3 sanctioned routes that started and finished in Tucson, I decided I would expand my own route options by designing several new routes and seeking RUSA (Randonneuring USA) approval. Today there are six 200k's and one 300k and two point-to-point 200k's, one that starts in Tucson and finishes in Phoenix, and the second starts in Phoenix and finishes in Tucson.

Since my seizures were still not well controlled, I had concerns about being in remote parts of the desert alone. One of the many gifts of living in a cycle-centric region is the ready availability of cyclists who love the longer rides and who are Randonneurs. With a bit of advance planning I had the company of at least one Randonneur on all but my 12th R-12 qualifying ride in July, 2015.

I took August and September off after completing my R-12 in July. It felt very much like something was truly missing from my life.  I started my second R-12 October, 2015. I like the discipline, the challenge, and the belief that it keeps me physically sharp. There's a sense of a one-more-in-the-books accomplishment after each month's completion. There is no guarantee that just because I have a goal for the year that the events of the year will make it possible for me to achieve the goal. Miss a month and I must start the count of 12 all over.

With the completion of this month's Rndo event, my 70th Birthday 300k, the planning for next month's event begins: what date will work for other already calendered events? What route? Who might want to join me for this next one?

I have now done 4 Rando events on Hiello, my ICE trike. He definitely adds an element of difficulty to the mix: the third wheel adds significantly to the rolling resistance; he doesn't climb as well; and being that much lower I am more conscious of my vulnerability, especially after dark.

All that said, the call of the challenge rings in my spirit. My second R-12 is underway.

200k and Wilmette

We lived in the Chicago area for 40 years before retiring to Tucson in 2011. Kirk's last church (United Methodist Pastor) was in Wilmette, 2 suburbs north of Chicago on the lakefront of Lake Michigan. With one son and his family in Tucson, the other son and his family in Eugene, OR, and our daughter and her family having moved 6 months ago from the Chicago area to Southern California, there is little draw for either of us to continue to return to Chicago to visit. 

And so, I wanted to return one more time to seek closure on some very rich roots and years.

Who could possibly have known my Birthday 300k in Tucson and my trip to Chicago, which would include a 200k with Jeff leaving out of Ridgeland Center, WI would be in the same week! 

At 70, I wondered how recovered I'd be to ride one of Jeff's favorite 200k's, The Fennimore Frolic  just 7 days after the 300k. Able to ride I was, but I set no performance record. We finished in just under 11 hours. I'm definitely slower on my ICE trike, Hiello, but seem to have accommodated to the long, steady mountain grades of the Southwest. The 7-9% with pops of 12-14% northwest of Madison, WI were quite a bit more challenging on my trike. Jeff was a most gracious host and hung back with me while the other 9 riders scampered ahead.

But time aside, it was a beautiful fall ride: dense, dense fog for the first couple of hours hanging over the hilltops and reducing our visibility on the ground to about 20'. Starting temp was 37, a temp that Tucsonans would never venture out into to begin their ride, unless, of course, it was El Tour de Tucson. By midpoint of the ride we turned out of the 20 mph steady head wind, the fog had lifted, and the temperature had warmed by 10-15 degrees. We could now see our surround of Fall foliage under our wheels and gracing the trees while rolling glacial hills were nameable far in the distance. 

Back in Wilmette after the 200k I began a delightful whirlwind of visiting friends of many years and favorite routes. Hiello was road worthy on crowded Lakefront multi-use paths full of segways, bike shares, and distracted tourists and road worthy on the streets of downtown Chicago in rush hour. Some were in town to run the Chicago Marathon, others to cheer on their favorite runners, and still others just here to soak in one of the most livable large cities in the country before the sky turns gray and the wind slices through to your core beginning exactly the day after Halloween. The gray and cold will chill the bone and soul till sometime in April, and that's why we retired to Tucson.

Wednesday, October 07, 2015

70th Birthday 300k (192 miles) Ride

                                                   Susan, Jeff, David

It has been a long while since I have posted on Bentwanderings. It is not for lack of cycling activity, that's for certain. But, when you live in a place like Tucson where you can ride 365, there are fewer epics to write about and the dailies are more often heart-stopping sunsets, cactus blooms in the Spring (that is likely to come in February), endless wind, dramatic monsoons, desert-desiccating heat, and critters like rattlesnakes, cyote and Javelina. Facbook has become an easy vehicle to capture many of my dailies. Now, however, I want to capture my most recent epic event: my 70th Birthday 300k on my 4 month old ICE Trike.

I knew I wanted to mark my 70th in a way that would be significant for me. I just recently completed my first RUSA R-12 and for a brief moment I thought maybe I should complete a 600k and add another 100k. But, seeing that I have never completed a 400k or a 600k, a 700k was, well, totally unrealistic and just plain stupid.

I know an older gentleman who states his age by subtracting from 100. I think he is 20 now via that math. That gave me an idea: 100 minus 70 equals 30 add a zero equals 300. All I had to do was create a 300k RUSA route out of Tucson and VOILA: my Birthday 300k.

And so began the planning.

My gratitude list since I retired and moved to Tucson is way longer than any list I gave to Santa when I was a kid. Being able to ride 365, being a Randonee in a way that works for me, and having two handsfull of Randonneuring friends are just three on my gratitude list.

Finding a date for my Birthday 300k took a bit of doing: a date that fit the calendar for the 6 Randonneurs who wanted to be a part of the ride, all of whom would be traveling from out of town or state, and finding a date when the University of Arizona would not be playing at home thereby filling all the available hotel rooms.

While my actual birthday is October 18th, October 3rrd was the date that met the above criteria. By the time October 3rd came, 3 of the 6 riders had either taken ill or were in an active recovery mode from serious cycling related injuries.

Jefferson Rogers, my friend from Chicago, and David Brake, one of my Phoenix friends would join me. The three of us, my husband Kirk, and David's wife, Kristy, had dinner at Neo Malaysian Friday night and did a bit of planning for Saturday. Both spouses would be in the ready should there be a ride stopping event for which a rider needed to be picked up. Equally important was that we NEEDED to have a celebratory birthday cake at the last Control before the Finish. Kirk took on the finding of a Gluten free, Vegan cake that met my dietary needs.

Our route started and finished from the Country Inn and Suites near the Tucson Airport. All the riders overnighted there on Friday. 3:00 a.m. came early for us to ready for a 4:00 a.m. start.

While we had 20:32 to complete the ride for RUSA credit, we didn't want to have to be in the saddle that long AND we wanted to do everything possible to be off Empire Mountain before the dark of night. The first 5 miles down that mountain is a 5% grade, full of switchbacks, 15 sets of rumble strips and a fair amount of bidirectional traffic even at night.

Our route is one I know very well having ridden it many times with PAC Tour and on various Brevets, and 200k's. But this was my first for cobbling all the segments together into one ride, one route.

Basically, we would begin and end from the Tucson airport, ride through the Tohono O'odham Indian reservation and the San Xavier Mission, South to Nogales through Tubac and Tumacacori, Patagonia, Sonoita, and turned around at Whetstone. We would pass through Sonoita a second time and then head North up and down Empire Mountain and back to the airport/finish. Birthday cake would be served in at the Quick Mart in Vail (AZ) on the hood of our car.

Enduring memories of the ride:
     ----Fellowship and commitment to the success of the ride by all 3 of us and our spouses
     ----The quiet of 4:00 a.m. ride out in South Tucson
     ----A family of longhorn cattle alongside of us on Mission Road (open range), in the wee hours of civil twilight (twirise??)
     --- The 3rd Control in Nogales, AZ, with Nogales, Sonora MX within sight
     ----The buzz of activity at the Circle K, our 3rd Control in Nogales that made Black Friday, the day after Thanksgiving at Walmart, almost pale
     ----The joy of a most supportive tailwind heading East on Rt 82 from Nogales to Whetstone (about 50 miles) where my speedometer read between 20-25 mph)
     ----The agony of the 20 miles of a 20+ mph headwind on the return from Whetstone to Sonoita.
     ----The gratitude for summiting Empire Mountain with still light in the sky
     ----The "Oh no, well here we go" descent of Empire Mountain in the dark of night
     ----The gratitude of a safe descent and the turn onto the "quiet" relief of the I-10 Frontage Rd
     ----Birthday cake on the hood of the car

     ----The final 20 miles at an average speed of 20 mph beating our ETA at the finish.

Over the last 14 years of riding one or another of my recumbents, and after coming back from 11 years of disabling back disease in the 90's, this 300k is one of my to-be-savored-memories for life to come. When I am 30 years from 100 clearly my opportunities for epic rides are measured. The satisfaction of successfully completing such a ride and being able to share that experience with good friends is a truly a treasure.

Tuesday, February 03, 2015

Unfinished Business: Dex Tooke

Available Through The Race Across America Store 
Dex Tooke is my hero, my model of how to be just a regular person who has an epic goal. He knew how to surrounded himself with a crew team of people who were totally invested in his succes--riding solo in Race Across America (RAAM) a one-stage race at age 60+. He fell short of the goal with the finish line nearly in sight in 2010. BUT, he got back on his bike a year later and crossed the finish line in Annapolis. His unfinished business was finally finished. 

Every year since Dex published his book, Unfinished Business, I re-read it just before the start of RAAM. Even though I know the outcome I'm riveted by his compelling telling of his 2011 RAAM. Tears roll down my face; I cheer for him; I feel his demons (and my own) trying to choke out success; I feel his mental and physical fatigue and that of his crew. After all, this is a one-stage race 24/7 for 12 consecutive days for rider and crew. I collapse in a puddle of delicious tears of triumphant success and fatigue when he and his crew are received at the Annapolis finish line. 

I am not and never was RAAM material; and, of course, I never will be given this is my 70th year.

But, I totally, totally relate to being just a nothing-special kind of rider who just happens to have my own version of epic goals. My most recent epic goal was that of riding 200 miles, a double century, in 12 hours. I caught the vision in 2011, went for it in 2013 and failed; went for it again in 2014 and failed. Went for it again in 2015 and Finished The Business--precisely 200 miles precisely in 12 hours. 

Still don't know how I did that, I really don't.

But I do know that Dex rode with me, especially in the last 30 minutes of my race against the clock. 

Let me share with you a few paragraphs from Unfinished Business that resonated in my mind's ear for the last minutes and miles of my 200/12 as I chased down my own ticking clock. 


From Unfinished Business pages 166-167 by Dex Tooke:

"Time was so critical that Joni timed my 15 minute sleep to the second. I awoke and immediately started asking questions. Joni just told me, "Shut up, we don't have time for your questions. You just need to get on your bike and ride!" 

"It was a little after 3:00 a.m. when I climbed back in the saddle--in less than nine hours the RAAM official would turn off the clock at the finish line."

"I began to ride again, but my speed did not improve. Joe and Dan looked at their charts and they could see that my average mph was continuing to drop below the critical line. At this point, Joe was desperate to do whatever he could to keep my RAAM from going down the tubes, so he grabbed the PA system mike, knowing I could hear him better than when he used the headset, and he started working on me."

"Dex, you gotta go faster, You have to push. Dex, what do you want to say in three weeks? Do you want to go back to Del Rio and tell all the Dexans that you did the best you could but just came up short?"

"When you get back to Del Rio and speak at the Lion's Club and the Rotary Club, how is your speech going to end, Dex? Are you going to tell them you didn't finish RAAM? Are you going to give them excuses?"

"Dex, you are writing that speech right now. You are writing your final chapter in RAAM. How is that chapter going to end, Dex? I want you to show me right now with your pedals and your body how that speech is going to end. Do it right now, Dex." 

"Tears of joy poured from Joni as she saw me wake up. She said, "Guys, he is doing what he does best now. I've seen this before. He's going to make it."

"Dan called it the single most impressive demonstration of pure will he had ever seen." 


As for me, well, when any of us is in our 70th year, the clock is proverbially ticking away from anything physically epic. 

What I knew was that on January 11, 2015 all the conditions were as favorable as they were ever going to get: weather, bike, crew, physical health. I needed to give this ticking clock everything I had and answer Daniel's loud speaker:

"Ok, Mama, you can do this, but you gotta pick it up, you can do this but you gotta pick it up. We're going 20 but you gotta pick it up to 21." You can do this Mama, yes, you can!" No coasting, you gotta keep pedaling; you can do this, grab my wheel. You can't let up."

And when my clock stopped, I had finished the business: 200/12, an accomplishment that could only have happened with a huge supporting cast on that day and many years of days before January 11, 2015.

Huge hugs of gratitude to all of you who have helped me finish this epic goal.

Tuesday, January 13, 2015

200 Miles/12 Hours Elapsed Time Vanquished

Susan and Jeff at the start of the 200/12

I DID IT, yes, indeed, I did it Sunday, January 11, 2015: exactly 200 miles in exactly 12 hours according to the iPhone world clock. 

So why, 200/12? Well, it all got started in Springfield, Ohio in 2010 at Calvin’s Challenge, a 12-hour Challenge ride. The goal: how far can you ride in 12 hours? I’d never raced the clock before in an organized ride, had no idea what to expect. 

I don’t remember how far I rode in 2010, but nothing impressive at all. But I learned a lot as I watched how other riders set up their personal SAG stop, whether they were riding self-supported or if they had a crew managing their fuel and fluids. 

I rode Calvin’s again in 2011. I would again be riding it self-supported, but I had a much better idea of how to organize my fuel and fluids to manage my off-the-bike time, an essential for time trial success. My goal this time was to complete a 300k distance (186 miles) in 12 hours. My computer read out was 186 miles in 11:30 and so I stopped. I had met my goal. 

Only later did I realize that 200/12 was quite possibly in reach but I would have to hurry because Mother/Father Time was marching on: I was then 66.

2013 my husband Kirk and I drove to Coachella, CA for the 6-12-24 Hr National Championships. I would try again, this time with Kirk crewing providing my food, fluids, and nutritional supplements along the way. I abandoned the ride after about 150 miles because of seizure activity, a new diagnosis I had acquired about 3 months before the Time Challenge.

I was keenly disappointed because clearly there was no chance I would be doing anything serious with ultra-distance cycling at my age; I would not be registering for any more organized time challenge rides. And so, it seemed, a goal was removed from my bucket unachieved.

Then Dan Fallon, an ultra cyclist from Prescott, AZ who also rides a recumbent, offered to support me doing a 200/12 apart from any “officially organized” Challenge Ride. THANK YOU Dan, for your idea and your awesome support April 2, 2014!!

On Dan’s recommended course (Eagle Eye and Salome Roads West and South of Wickenburg, AZ) I punched out the first 100 miles in 5:30. Good start. Then this wall of wind just ground me to a halt. I abandoned the ride after 135 miles. No need to continue when 200 was nowhere within reach in 12 hours.

And so, the 200/12 goal was, once again, removed from my bucket unachieved.

Then, Good News! my cycling friend, Jeff Rogers, would be in Tucson for the month of January. He, too, had been questing after a 200/12. Maybe, just maybe, working together on the road with Kirk crewing for both of us, we could get ‘er done. And so the planning began.

We wanted to keep it simple, do it locally, but we needed to find a course that was flat, with no stop signs, minimal traffic, and with a reasonably good road surface, the latter being somewhat hard to find in Tucson.

And the answer to those questions was: the I-10 Frontage Road between exit 236 (Marana Road) and exit 212 (Picacho Blvd) on the East side of I-10. There was a McDonald’s at exit 236, lots of services at Picacho Peak, exit 219, and nothing at exit 212. Kirk would park the SAG vehicle at Red Rock, Exit 226, roughly half-way in between.

Our bike computers started rolling at 7:03. 

Outbound, heading northwest, was ever so slightly downhill, an elevation gain over 24 miles of 22’. We also had a tailwind and saw speeds between 20-25. While that felt good, we also knew those 20’s would become 12-15’s when we turned around to head southeast. And that’s exactly what happened. Not only did we have a headwind, but we also had an elevation gain of 428 feet over those same 24 miles.

Lap 2 was pretty much the same weather-wise. Kirk met us at mile post 236 at 1:00 p.m., with 96 miles done: a Micky-D burger for Jeff and my long-distance bike lunch of moist rice, tuna in olive oil, kalamata olives, and avocado. All the bio needs, including having eaten our fill, were met and we were back on the bike in 15 minutes.

Mile 111 required a strategy change. Jeff was dealing with some digestive issues and urged me to continue on without him. He would keep riding, but didn’t want me to slow down. He and I had had several conversations the week before the ride considering as many “what-if” scenarios as we could imagine so each of us could be as successful as we could be, neither of us encumbering the other with whatever life happened to us on the road.

And so, I rode on. 

Daniel, our son who lives in Tucson, a strong rider who also just happens to be 6’-6”, would be joining our team at 5:00 p.m. to put his fresh legs and billboard-sized body in front and let us grab the slip stream behind his wheel. 

And so, at mile 160 I met him on the road, minus Jeff, and slipped behind his wheel.

Daniel shouted: “How’s the pace?”  We were going 20 mph. 

“Faster!”  I said. He picked it up to 21. 

“How’s the pace?”  

“Faster!” I said.  He picked it up to 22.

I said, “When you hear my Zipp freewheel hub clickety clicking, pick it up, cuz then I’m coasting!” 

And so we rode at about 22mph till we turned around to head South for the Marana Road, exit 236, for the last 20 miles. And then it got tough, really, really  tough.

It was full-on darkness now. Kirk was in direct follow-mode providing protection in the rear from any oncoming car traffic and adding his beams to the far less than pristine road surface.

I had a chance to make it, but a very, very slight chance. So slight that even taking a sip from my Camelbak hose would break up my cadence just enough to fall off Daniel’s  wheel. 

Every couple of minutes Daniel would shout out ”What’s your mileage?” I had put a little flashlight between my jersey and my partially zipped windbreaker. I’d dig it out and train the light on my Garmin and Cateye and shout out the mileage. He’d grab his phone out of his jersey pocket and quickly do the math. 

“Ok, Mama, you can do this, but you gotta pick it up, you can do this but you gotta pick it up. We’re going 20 but you gotta pick it up to 21.” 

“You can do this Mama, yes, you can!” 

Then I’d hit a dip in the road or a major hole or something unseen and my freewheel hub would start clickety-clicking. 

“No coasting” he’d shout, “you gotta keep pedaling; you can do this, grab my wheel. You can’t let up.”

“I can’t reach your wheel!” I’d shout, after having lost cadence managing through the road surface irregularities. 

He’d back off a bit while I’d shift down and up a gear to pick up the cadence and then grab the power.

And so the back and forth fighting against the clock continued. 

He never, never let up with his encouragement. As tired as I was, I knew he had to be nearly as tired to be in all out sprint mode for 40 miles, no break from pulling, doing math to make it all come out right, navigating the road in the dark.

Then he shouted: “Do you have to stop exactly when it turns 7:03 or do you have the whole minute?” 

“I don’t know, I said, I don’t know what the seconds were on my Garmin when I started. I’m taking the whole minute of 7:03.”

“Ok then”, he said, “I’ll stop you with 10 seconds left in the minute of 7:03.”

And then it was over. 

Kirk pulled up behind us and stopped. None of us knew how far I had gone till I pulled out my flashlight buried in between my jersey and windbreaker.

200 miles exactly before the stroke of 7:04.

I know, our rules wouldn’t have met RAAM standards, but I never was, and never will be  a RAAM-type ultra-cyclist.

But, it felt so unbelievably good to vanquish my goal of 200/12.

AND! Let me say how amazing Jeff did!! 

Not only did he had GI issues after lunch and had to slow a bit for awhile, but he never stopped. He was able to pick up the pace and continue to 7:03 with a PR of 187. AND, he did all of that without the benefit of Daniel’s slip stream, Daniel’s encouragement or Kirk’s protection and headlights after nightfall.

Now, his accomplishment is amazing. But, being +/- 11 years younger, he’s got a few more opportunities to hit that 200/12, if he chooses to keep that goal in his bucket.

And finally, NONE of this could have been even remotely possible without the wrap-around, comprehensive, cheerful support from Kirk. Crewing is hard, hard work and a sacrificial gift of love.

A huge hug of thanks to all who have supported me for so many years through so many times and events of joy and challenge.

Monday, December 29, 2014

Journey of Victory Through Self-Surrender

I can’t take credit for the title, Victory Through Self Surrender, or the concept of Victory Through Self-Surrender. E. Stanley Jones, a 20th century United Methodist missionary and theologian wrote a seminal book by that title; Rick Warren, founder and senior pastor of Saddleback Church in Lake Forest, CA regularly addresses the core issue of surrender leading to victory in his sermons, devotions, and books. 

I am not a theologian, I am certainly not a missionary. I am, however, a woman of faith trying to live my life in some kind of a balance of acceptance of my gifts, foibles, and circumstances. To that end I find myself regularly challenged to surrender myself to a power greater than myself, whom I call God, while at the same time to take responsibility for myself. 

I, like all of us, have gotten banged around and banged up by life. Some of us have experienced more of that than others. Some of us have done some remarkable inner work transforming our woundedness into jewels which we use in service according to our given gifts. Others continue to live their lives in defended denial losing the gift of self-acceptance, the gift of intimacy with those who truly care about them, and the opportunity to serve fully.

My own personal survival strategy for getting banged around my first 20+/- years was to isolate and not let anyone be a part of my life, a part of my journey. It was a pretty lonely way to live. 

Fortunately, a couple of health issues, now long passed, turned out to be ones I couldn’t fix all by myself. Managing through those taught me the value of seeking out people, professional and non-professional, who could journey with me, a much less lonely way to live.

And that brings me to the present. 

As many of you know I was diagnosed with epilepsy the end of August, 2013 after a rather dramatic first-ever episode. An Epileptoligist immediately put me on an anti-convulsant medication; we tinkered with the dosage for 6 months before finding a therapeutic level; and I stopped driving, because in Arizona people can’t drive until they have been seizure-free for 3 months. Eighteen months later I am still trying to count to three. 

Having worked for 40 years with addicts and their families, I knew first-hand the value and power of Self-help groups like Alcoholics Anonymous. One of my first efforts in coming to terms with my new diagnosis was to attend a local Epilepsy Foundation Self-help group. I attended maybe 4 meetings and found them to be even more than down right depressing. Most everyone there seemed dulled by either their medications, their brain surgeries, their  disease or co-occurring diseases. Many were unable to work; all were unable to drive; many lived in group homes or had a full time care giver. Clearly the epilepsy self-help community would not become a primary means of support for me.

I “girded my loins” suiting up for the big game of not becoming my diagnosis, not living the life of a victim. I would demonstrate to myself and to anyone who cared to watch, that I could and would do everything I had been doing before my first seizures and just as well as.

And, to a degree I pulled it off. I have ridden another 12,000 miles on my bike this past year, as I have done 8 of the last 10 years; the other 2 years I “only” rode 10,000 miles. Some of those years were when I was still working full time. I continued on the Board of my local bike club, was active in our church, active in the community, did some serious international travel with Kirk, and visited friends and family across the US. 

But, as this year, 2014, winds down I am coming to terms with the reality that, like with most, if not all, chronic conditions acceptance of the condition requires a delicate balance of strength, courage, action, and embrace. By embrace I mean I need to learn how to make room in my spiritual house for  epilepsy.

I find I need to organize my life in such a way to make room for rest and recovery; there are days I just can’t do what is on my calendar. I need to shift my roles and commitments to community activities to allow me to do just that, rest and recover, when I need to, without letting down the organizations in a troubling way. 

I need to become a trigger sleuth. Can I understand what begets my seizures? Can I integrate traditional and complementary modalities that I can use to intervene before, during or immediately after the seizures begin to reduce the frequency and their impact on my daily life?

I need to lean into my holistic treatment team, listening to them, receiving from them, using their expertise.

I need to prioritize time in my daily life for a different balance of quiet time and active time.

I can offer no prediction as to how effective my efforts will be to balance strength, courage, action, and embrace of my disease. But, I am hopeful that, at a minimum, my 2015 strategy will reduce the power of the seizures to interfere with my daily life. I’ve already put a number of new “dailies” into practice even before 2015 begins. It will be fun to revisit this post a year from now to see what I’ve learned. 

Friday, December 19, 2014

Lessons From The Blue Hose

Camelbak Hose
Kirk and I spent a couple of days in Scottsdale celebrating his birthday in early December. 

While riding from Phoenix to Tucson by bike is not a challenging ride or inspired by scenic awe and wonder, there is a Randonneur 200k Permanent Route between the two cities. Riding it would qualify for my December Permanent, number 5 out of 12 toward my R-12, an award given to riders who ride a minimum of a 200k approved route in 12 consecutive months. 

I had had a spate of seizure activity for the week preceding my 200k PhxTuc Ride so was grateful my Rando friend, David Brake, would be riding with me, just in case...

The start was 7:15 a.m. at the intersection of Ray Rd and Priest/56th in Chandler. I loaded my bike on the rear rack and packed all my on-the-bike gear carefully in the car. We left in the dark headed for the Start. David would meet us there. 

Meet we did. David and I were both in a most unpleasant dither, I because I couldn't find my blue hose, my only source of fluids for 129 miles; David because he couldn't find his sunscreen. Both of us crescendoed in our own personal dithers, our spouses just wishing we would leave and reminding us that we both deserved each other given our momentary inability to be gracious and civil to them. 

I knew my blue hose HAD to be in the car. I knew I had put it there, but dang it was just not there! Dither grew into an almost panic as I contemplated the dehydration hole I would end up in not having an efficient and accessible source of fluids. And, having just moved through at least a week of seizure activity, who knew what kind of a trigger dehydration would be!? 

Then Kirk, bless his heart, found my blue hose. It was on the floor on the passenger's side in the front. It was still too dark to see it against the black rubber matting. Phew! I began to breathe. I don't know if David ever found his sunscreen, but that was replaceable at any convenient store. Not so a blue hose.

And so we began our 129 mile 207k ride to Tucson.

Nature called at mile 18. Off the bike I had a sinking feeling: all my classic pre-seizure auras and I still had about 110 miles to go. I guess many of us with seizures don't always know what triggers our seizures. Some triggers are predictable, but there are certainly a lot that don't have a 1:1 causal relationship. I was pretty convinced my blue hose dither didn't help maintain my intracranial equanimity. But I also had not been aware of the auras until I got off the bike at the Circle K. Grateful to have gotten the message at mile 18 instead of mile 36 or 69, the next two known rest stops. 

David and I fell into quiet riding, no chatter, and I practiced some meditative breathing and Jin Shin Jyutsu finger holds hoping and praying that my own version of on-the-bike neuro-bio-feedback would interrupt the seizure process.

Our first required stop (Control) was at another Circle K, this one in Stanfield, where we need to purchase something as proof that we were on the pre-determined route and that we were there within the required time limits. Got off the bike and I was aura and seizure free and remained so for the remainder of the ride.

David's wife, Kristy, met us at the finish at Cortaro Rd/I-10; I appologised for being so unpleasant a few hours before. 

It was an awesome ride; thoroughly enjoyed David's company and learned much from the blue hose.