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.


Dan said...

There is a wisdom in filling the space that is a) made for us, b) remaining.

Victor Cactus said...

Your blog is amazing and inspiring. You are so positive about your situation ... Wow I should learn from you. Thank You!

Susan said...

Thanks Amy, Vic, and Dan. Most days I feel very unwise. If my writing can be helpful to those who find themselves up against some rough edges, then I am more than satisfied.