Raising Awareness However I Can

Yesterday I was honored to be a guest on the Joy Cardin Show (listen to the broadcast here) on Wisconsin Public Radio to discuss living with epilepsy and my memoir, The Sacred Disease.  I was surprised by how many people called in to share their experiences with seizures, their hopes for the future, and the subtle ways that epilepsy changed their lives.  I walked away from the broadcast both excited to have participated in another forum to raise awareness and saddened that there are so many people who are touched by seizures in many different ways.

The following is a poem I wrote in effort to describe what it’s like for me to live with epilepsy.  I’m sure those of you who are touched by seizures can relate.  I cope with my uncertainty by writing and speaking out as much as I can.  What helps you?  Please share in the comments below.

Living with epilepsy means that I know the distinctive scent of EEG glue as well as I know the scent of my children.

Living with epilepsy means that I’ve learned how to fall asleep in MRI machines, wait patiently in doctors’ offices, and perform neurological tests without prompting.

Living with epilepsy means that I must not be the “Epileptic Patient” but rather “the patient with epilepsy.” I cannot let the seizures own me.

Living with epilepsy means that even some of my most significant days have been accompanied by seizures: the day I delivered my son, my tenth anniversary, Christmas Day, Thanksgiving.

Living with epilepsy means that when the familiar sensations of a partial seizure appear, I find myself searching for a place to sit away from view in case the simple seizure leads to something more.

Living with epilepsy means hiding my illness under a well-designed shroud, afraid that if others know that I have seizures they will lose their faith and trust in me.

Living with epilepsy means I examine my tongue each morning in the mirror to look for the characteristic bite that’s my sign of a nocturnal seizure.

Living with epilepsy means learning to ignore the staggering fatigue that comes with each new medication trial and medication adjustment.

Living with epilepsy means that I can list almost every anti-seizure medication and its associated side effect profile. I have tried them all.

Living with epilepsy means that I treasure the mundane and hold these things as close as possible, for fear of losing them: driver’s license, health insurance, life insurance.

Living with epilepsy means that I will consent to tests that turn off part of my brain, remain tethered to a wall with an extension cord for up to a week, and consent for removal of my entire temporal lobe in hopes for a cure that still eludes me.

Living with epilepsy means that I have created a handful of euphemisms to describe a seizure: head problem, not right, episode, incident.

Living with epilepsy means I feel compelled to join others like me and look down the long, dark road that I pray may ultimately lead to a cure.

6 comments on “Raising Awareness However I Can

  1. Aloha Kirston, I enjoyed your information and your poem. I also read Lisa, Juliana, and another of the comments. I think that I got onto wordpress, but haven’t tried to comment from it because I do not know that much about blogs. I am presently waiting for the RRB board of the University of the Rockies to determine whether they will accept the first three chapters of Lived experiences of persons with complex partial seizures that secondarily generalize seeking employment or facing unemployment: A Phenomnological study. I do not have a contact phone number for you. I trust that you have complex partial seizures that secondarily generalize and are still interested in being in the study. I fell after getting up after one seizure and it went into another one. That was a year ago in August, but I have kept going. I tried to talk to my chair from the Yale NewHaven emergency room, but we couldn’t reach her phone number in California. It did not answer. I later got a new chair and Dr. Miller is very helpful. \

    It is important to treat the total person as one of your responders said. Too often this is not the case. When I wrote Epilepsy A Personal Approach in 1985, I did stories like the ones yours from your book. There has been so much change in medicine in the pasts 75 years, you would not realize what it has been like having epilepsy for that long and always being told that surgery was not possible. Now I am taking neuropsychiatric tests and should be done on the 10th to find out why I cannot talk, even though I am not having a seizure, or am I? I have all types. But I like calling the falling seizures secondarily generalized. That is probably the only way we will ever be able to let the medical profession realize that in GMs you don’t always turn and turn even on a bed.

    Have a great day.

    Nancy C Schumacher 148 Everit St. “B” New Haven, CT 06511 203-773-3308

    . nschu38@aol.com

  2. […] and three children. She contributes magazine articles about pediatrics and parenting, and writes a blog about epilepsy. An advocate for epilepsy awareness, Kristin hopes that writing about her disease will help […]

  3. Nina Garga says:

    What a beautiful poem. Thank you for sharing your experience and increasing awareness. I am a fellow physician mommy, who does her best to care for people with epilepsy.

  4. Thanks for you poem. Some of it rings very true to me. I am a late comer to epilepsy but it’s the same. For years I taught about epilepsy in a University setting, but until I came “down” with it, I did not know much of what I was I was talking about. Yes, I got the facts right, but the phenomenological and social aspects have to be experienced. By the way, I am a psychologist, but not the kind, probably at any rate, that you are thinking about. My area was machines, cars, space ships, nuclear power, etc.
    I look forward to the day that epilepsy will be something that we understand and can treat. We’ve a long way to go still I fear.
    Thanks for your blog. I shall look forward to following it. I intend on reading your book soon.
    Best wishes,
    Brevard, N.C.

    (former professor)

    • Hi John, Thanks so much for your note and for sharing your story. I hope you like the book and imagine you can relate to a lot of it. My best wishes for a seizure-free future for both of us.

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