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I Know What I Am Chasing: My Health Story

20 J0000004UTC 2011

I received a Starbucks card for my birthday so I stopped in to pick out a new mug or a pound of coffee but then I magnetically clasped onto R.E.M.’s new album, Collapse Into Now. “Is this it?” asked the cashier-barista, through her thick eyeliner.

“Yes it is.” I wanted to add, “I’ve already had my triple venti sugar free vanilla non-fat, no-foam, not-too-hot latte.” But then, that would be lying.

R.E.M. is my all-time favorite band. I listened to them for the first time in jr. high and have been ever since. Michael Stipe still sounds awesome: raspy, dark, conflicted, like he’s going to live forever. I hope he does, as long as he keeps putting out albums like this one.

Track #3, Uberlin (insert umlaut over the U). I don’t know what it all means, but it sounds great and the lyrics hit somewhere deep. Here’s the chorus:

“I know, I know, I know what I am chasing,

I know, I know, I know that this is changing me

I am flying on a star into a meteor tonight,

I am flying on a star, star, star

I will make it through the day and then the day

Becomes the night

I will make it through the night…”

And then it goes on in true R.E.M. fashion, but current. It’s really beautiful.

 “I will make it through the night.” This is the thought, the feeling, I share when I tell you my story and share my medical history. It’s important when I think about what motivates me to heal myself and learn what it takes to help heal other people.

Sometime when I was a ten-year-old I went to bed as usual. Probably my dad read me Nancy Drew, I took a trip to the bathroom and my mom gave me a kiss. Then, sometime in the night or early morning, I had my first seizure. Overnight I went from not having epilepsy to having it.

We did not get it at first. My seizures occurred during sleep. I woke up disoriented, forgetful, scared and exhausted. It was a while before my parents caught me in the act. When they did, they did not know what to make of it. Several seizures and a couple doctors later, I was medicated, then hospitalized for tests, then released back to “normal” life, which I have been attempting to lead (sometimes incredibly successfully, sometimes less than) ever since.

This is 25 years of a condition, medications, social stigma, strange bodily function that I have never felt is truly my own. Mostly I feel that I am highly functioning, strong, independent and intelligent. I do not feel as though I am an epileptic, but that I have epilepsy. Still, at the end of the day, I am never sure who I would be without this condition or what I could accomplish un-drugged, free and clear of the fog.

Roughly 80% of what I have learned about my condition I have learned by personal research and through the help of those who have loved me along the way. A college boyfriend—a true friend—made the first major breakthroughs in understanding about 15 years ago. The second wave of understanding came about 5 years ago when I read Love, Medicine and Miracles by Bernie Siegel, M.D. while on a solo retreat in Buena Vista, Colorado.

I put these pieces together with information I gathered from my two favorite doctors, Dr. Wendell Helveston (Hattiesburg, MS) and Dr. Frank Gilliam (St. Louis, MO, now at Columbia University, New York). These two share fine bed-side attributes: a positive outlook, proactivity, instilling hope in me as a patient and treating me as an intelligent, capable human.

Today, I am further down the road– a grown woman with a full life and epilepsy, full of realism and hope. As an adult I have endured bouts of seizures I never wish to relive. I have also enjoyed two summers as a backpacking guide, learning to Telemark ski on my own, overseas adventures, scuba diving and snorkeling, kayaking, endless climbing trips, more relationships than I’d like to recount and ongoing intellectual stimulation and education.

My most recent doc said I should not climb. I fired him and now have a doctor to whom I presented by history, my case and what I am looking for in a partnership with a doctor. “Are you in or are you out?” was my question for him. I’ve learned not to settle for a doctor who is not on board for innovation, creativity, hope and healing. If he or she only brings drugs and a scalpel to the table, I’m out.

What reason have I for hope in healing my epilepsy? None, really. Nothing based on research, anyhow. My basis for healing any ailment, condition or plague of the body or mind is several-fold, and I’m only starting to work it out:

a) It starts with learning the origin of the condition or the illness. When we ‘get’ where it came from or what predisposed us to it (whatever it may be), we can better understand what it will take to remedy the problem. This often points to something in childhood. b) It also requires dealing with current, ongoing, debilitating stressors which deplete the immune system, tamper with the endocrine system (hormones, metabolism, neurotransmitters, brain function) and cause weight gain that leads to many diseases.  c) It takes overhauling our input (food, drink, toxins) to decrease that which harms and increase that which heals.

I push epilepsy through this three-pronged filter and find there is progression. Will it result in the total eradication of seizures? Maybe and maybe not, but overall wellness increases along the way, to be sure—psychological, emotional, physical, nutritional, even spiritual.

This is healing, to understand ourselves and our brokenness well enough to wisely pursue that which will make us more well in this lifetime.  That is what I am about. I know what I am chasing.

For now, chow.

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2 Comments leave one →
  1. gary blake permalink
    20 J0000004UTC 2011 11:22 pm

    So much insight. Its honestly a side of you that I don’t know at all. To me your just my sister. Its the only label I have for you. Not writer or climber or epilectic. I think that speaks to the quality and diversity of the life you’ve led.

    Love you! Love the new blog!

  2. Frances Higgins permalink
    20 J0000005UTC 2011 4:44 pm

    HI Kris,

    I love your openness and your creative style. Would you allow me to share this with my friend who has a son who has seizures? He’s currently in cartoon school in NY.
    thanks for sharing, Frances

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