Tuesday, August 19, 2014

New Targets: R-12

Mark Pondering Ben's attempted crossing

Storm cloud over Baboquivari Peak
My 50-State goal is in the books which begs the question: What's next?

I love long rides, but I can't string so many of them back-to-back any more being nearly the ripe age of 69 in October. 200k Brevets are perfect for me, distance-wise. Longer than that I can't fuel since my food allergies/intolerance preclude eating out of fast food and convenience stores. 

My freedom to, at will, do Brevets with the AZ Randonneur Club is a bit challenging since I currently am not able to drive to remote starts, my recurring seizures put my driving privileges on ice.

Next best thing? RUSA Permanents originating in Tucson! There are currently four I can choose from and I plan to develop a couple more which will hopefully be approved by the national RUSA Permanent Coordinator. 

The R-12 is great, too, since I can start the 12-month cycle at anytime and I chose August, 2014 having returned from the 50-State quest in July. 

Mark Doumas, Ben Andrews, Margaret O'Kelley and I had a gloriously hot (mid-upper 90's), humid (it's monsoon season) 205k ride following the clockwise Arivaca route.

Ben the bandit

After lunch in Arivaca
The monsoon rains have been generous south of Tucson; none of us can ever remember seeing the desert being so lush and green. Truly, we could easily have been in Arkansas. The only giveaway that we weren't were the mountains and the type of vegetation. But green, green, green it was.

A very long, hot 44 miles with no services between Arivaca and Three Points
The 44 mile stretch with no services between Arivaca and the grocery store at Three points was a bit too long for the water supplies we had with us. We shared what we had with each other until some construction workers topped off our bottles. Hindsight, we should have topped off at the Border Patrol station at about the halfway mark. 

I was beyond grateful to Mark, Margaret, and Ben for adjusting their preferred start time of 1700 to 0500 for me! They prefer to ride through the night when we're in these dog days. But I didn't want to risk messing up my stretch of no seizure days by going into sleep dep and/or totally confusing my sleep cycles. 

I opted out of dinner with the crowd at Don's Bayou since Kirk was only 5 days post-op from his clavicle reconstruction after his bike crash on the preceding Sunday.

Next 200k should be mid-September from Phoenix to Tucson following the Skull Valley Loop Challenge out of Prescott the day before.

I should add that Roger Peskett, our AZ Rando Perm Coordinator, is my inspiration having completed 32 consecutive RUSA rides of at least 200k. Can't catch him, but I'll try to stay on his wheel.

All 50 States

I don't rightly know when I decided upon the goal of riding in all 50 states. I'm sure it was a focused goal after my first transcontinental with PAC Tour in 2006, the southern tier from San Diego to Tybee Island, GA. I knew that when I achieved that goal I would get another tattoo of our country, featuring some key routes, and, of course, my faithful recumbent.

Turns out I rode exactly 25 states on a tour, either a transcon with PAC or a solo tour I designed, and the other 25 by just grabbing a state here and there as it came to me or as I went to it.

An ambler in Yellowstone too close to our new car for comfort
Turns out Kirk and I went to four states I needed this July: Montana, North and South Dakota, and Nebraska. 

Little did we know when we planned this 6,000 mile driving car trip from Tucson to Eugene, OR, by way of Nevada, California, up through Washington, Montana, the Dakotas, Nebraska, Utah, Wyoming, and northern AZ before coming back home, that Kirk would get to do ALL the driving. 

Yep, I'm still not driving because I can't seem to string together 90 seizure-free days to earn back my driving privileges. 

It was a special trip in so many ways:
  • completion of a bucket list goal--riding in all the states (see caveat below)
  • having a new car with a bike rack on the back so Kirk could bring his bike, too, and we could ride some miles together
  • visiting Pompey's Pillar in Billings, Yellowstone NP, Zion NP, Grand Canyon North Rim NP, Mt. Rushmore, Great Basin NP
  • spending a day with our good friend from Mt. Prospect, IL, Jack Verhasselt, who was visiting family in Billings the same time we were there
  • a surprise visit in our son's father-in-law's office in Billings where he is the school superintendent
  • a visit with a new friend in Cheney, WA who also lives with epilepsy daily
  • soaking in with awe the expanse of our amazing country
I wondered how I would feel having completed this bucket list goal: would it be exhilaration, kind of a "yep, got it done", sort of a let down that the target was not ahead of me and what would the next target be?

I was pleased that what I felt, mostly, was gratitude to Kirk, for Kirk, who participated in my attaining my goal with as much energy as I have invested in it. Behind that gratitude was more gratitude that at nearly age 69 I have been able to pursue and achieve my 50-State goal. And, behind that gratitude was just a most pleasant exhale of a job well done.

An unexpected joy along the way was discovering that my good friend, Barbara Cleveland from NH, had basically grown up in all the states we were traveling through. She's exactly my age; her Dad had been an executive with the Union Pacific Railroad which meant that she rode the rails with him most summers as a wee child, sleeping in UP bunk cars, getting separated from her Dad and ending up in some distant town and having to be shuttled back by train to wherever Dad was.

Didn't know any of this about Barbara until I happened to send her some pix by email early in our trip and her remarkable childhood stories just poured out of her. Day-by-day, I sent her more pix; day-by-day she shared more stories, and we both learned a lot about how we had become the adults that we have become. A treasured gift for both of us.
Leaving Yellowstone, heading east

Theodore Roosevelt National Park, Badlands in the distance

Yep, you're right, Mt. Rushmore

Barbara Cleveland's bunk car, Ely, NV

Bristlecone tree in Great Basin NP in NV. Some of these trees are nearly 5,000 years old and still thriving

More UP cars for repairing tracks

Zion NP, UT

A little secret here: I am actually still 2 states short: Delaware and South Carolina. We could have gotten SC in 2011 when we were on our 12,400 mile, 99 Day Trek from Chicago to Tucson, but alas I broke my foot and was off the bike when we were traveling through SC. We thought I'd get Delaware this July when we took our son, Bryan, and his 11 y.o. daughter, Ayva, to Williamsburg and D.C. But alas, the tail of the state we thought was Delaware turned out to be Maryland. So, SC will have to be "gotten" in July 2015 and Delaware in the summer of 2016. But as long as we are both still alive, they will be "gotten" in the next two years.

Tuesday, August 05, 2014

E Within Me: 12 Months Post Diagnosis Of Epilepsy

I’ve been planning to write this post about E, my E, for a few weeks, and what better day to do so than on the occasion of Kirk’s and my 45th anniversary, August 2nd.

It’s been almost a year since E became a part of me and a part of Kirk’s and my life together. E’s coming was totally unexpected. Unexpecteds bring with them a very real sense of vulnerability, loss of control, fear, and, often, changes in one’s life course or life style. We are naive, indeed, if we expect that we will never experience unexpecteds.

Acceptance and gratitude can be gifts from the unexpecteds, but most of the time those gifts come only after some grieving, gnashing of teeth, 2 steps forward and 1 step back; maybe even sometimes only 1 step forward and 2 steps back.

And so it was August 27th, 2013 I ended up in the ER for more than 20 hours with the good folks there trying to figure out what had unexpectedly gone wrong with me.

Over the course of the next week or so the unexpected had a name: Epilepsy.

Even though I have a Masters in Nursing, my knowledge of epilepsy was really only quite topside. The next 12 months I was on a steep learning curve regarding triggers, medications, traditional and holistic methods of treatment and their respective practitioners, how to recognize auras, what it feels like to be totally wasted for up to 36 hours after a seizure, (post-ictal states) and all the myriad sensory, motor, and cognitive experiences of central nervous system misfirings happening within. YIKES.

You can do your own reading, if you choose, on E; plenty out there including some quite useful “coping with epilepsy” forums on the internet.

What I want to share with you is what it has been like to have E within me.

Without question the most significant and externally noticeable impact has been my inability to drive. Each state has its own laws about when a person can drive again after having had a seizure, regardless of what type of seizure, and there are many types. Arizona’s law says one must be seizure-free for 90 days. I had no idea that would be a hard number to achieve.

I was naive. I thought all I had to do was be given a diagnosis, be given a prescription, comply with the medication regime, and go on with life.

Not that easy.

Seizures happened with enough regularity that it took eight months to achieve those 90 days. I had driving rights for about 6 weeks and then lost them again because of more seizures. My vision is enough impaired now, (cause the effect or effect the cause? I don’t know.) that even if I were seizure free I would not feel safe driving further than Trader Joes which is only a mile away.

Early in my new life with E I was on a solo 90 mile ride, had a seizure, and had to call Kirk to come pick me up. We agreed that until I was 90 days seizure free that, in addition to not driving, I would also not ride a route alone that was more than 50 miles. At its apex I would then only be 25 miles out if I needed a pick-up.

Not driving didn’t hurt. That’s one of the beauties, joys, gratitudes of living in Tucson. I can ride 52/365 and I can ride everywhere to do everything. But not being able to ride long distance, now that one hurt. There are 100-200 mile routes around Tucson I would love to do; but I can’t right now without a riding buddy. Such buddies are hard to find. There are some around but they are either too slow for me or I am too slow for them. Neither is a good mix.

Not being able to drive also has meant I can’t, at will, get myself to rides with a remote start, like Northern Arizona, New Mexico, Southern California, Southern Utah. Kirk has been remarkable in his open giving, giving of his patience and tolerance of the new me, including my inability to drive. He’s oh so willing to drive me to a 5:00 a.m. start to a local ride; and he drove all 6,000 car miles this July as we traveled through MT, ND, SD,  and NE so I could come closer to my goal of riding in all 50 states. (Only 2 to go, SC and DE). But to ask him to give up a weekend so I can ride 130 or 185 miles in an adjoining state---well that’s too much to ask of anyone who is not riding the event.

Rides with remote starts need to be well worth the needed logistical planning. Here’s an example of such: mid-September I want to test my mettle (and metal) on the Skull Valley Loop Challenge (SVLC) out of Prescott, AZ which is about 200 miles northwest of Tucson. Kirk and I will spend a couple of days hiking and riding in Sedona; he’ll drive me to Prescott; I’ll stay with a friend for a day or so; ride the SVLC; a Phoenix friend, who will also be doing the SVLC, will drive me to Phoenix after the event; and I will ride home from Phoenix the day after the event by bike. Doable, all of it, but full of logistics that previously didn’t need to be considered.

One of my better qualities, I think, although it can have its thorns as well, is my steady, predictable persistence. That quality has served me well getting to all kinds of “finish lines” in life, most of which have not had the word “race” in them. Epilepsy is giving me a new set of rules to live by. Seems I can do all the right things and have a seizure or all the wrong things and have a seizure and with every seizure comes a post-ictal period when life seems to be sucked out of me. I have come to call it my Life Switch: no physical energy, no emotional energy, no relational energy for 6-36 hours depending upon the severity of the seizure. That makes planning difficult; that makes being responsible and accountable difficult. I’m having trouble accepting that part of this disease, that part of who I am in relationship to my world.

I have always experienced myself as being one with lots of energy, a lot of rah-rah, go-get-’em, anything’s possible with a plan and the needed preparation. It’s hard for me to rightfully use those words to describe myself now, since E. Subdued is a word that fits much better today. That’s not a word I like to use to describe myself. Not only have I lost some freedoms, but I have also lost my ability to predict what my energy resources will be from day to day.

I’m embarrassed to own those realities about myself when it’s just epilepsy, for goodness sake. Many people my age (69 this October) are dealing with life and life-style show stoppers: joint replacements, organ replacements, cancer, end-stage diabetes, mental illness, crippling PTSD, addictions, loss of spouses or partners, and so much more.

For now my joys and gratitudes include: Kirk, some dear friends and family who are unwavering in their support of both Kirk and me, some health care professionals who are committed to hanging in there with me, and my continued ability to ride.

I truly believe that more joys and gratitudes will be revealed from living with epilepsy, but I’m still in the early stages of grieving the losses, accepting the newness of my life, and finding new ways of offering experience, strength and hope to others who have found themselves being smacked with an unexpected.

Guess I’ve just committed myself to a new post a year from now to see what new gifts and gratitudes have been revealed in my 2nd year of living with E.