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.