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.