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Learning to Accept Myself After the Return of My Epilepsy

For me, being epileptic is like riding on a merry-go-round of uncertainty. I had intractable epilepsy from ages 7 to 11, and I underwent a hemispherectomy (removal of half the brain) to rid me of my seizures. But after 18 years of being seizure-free, I am epileptic again.

The unexplainable return of my seizures in adulthood has shifted the perception I held after my brain surgery: the belief that my seizures were gone. I feel betrayed by the medical world and betrayed by the belief that I had made the right decision when deciding to have brain surgery. I am held by anger, confusion, and the ego-shattered mantra: “It’s not fair.” My partner has witnessed the rage collecting from the return of my epilepsy. I feel defeated by my epilepsy. I feel as if the love of my life is now subjected to the ever-present fear of waiting for the next seizure to occur, the same fear epilepsy instilled in my family when I was a child. I feel guilty. My conscience screams I am hurting the people I love most by being epileptic.

And I feel weak and as if every event occurring now is a challenge. My first attempt at medication didn’t reduce my seizures and had side effects that led me towards paranoia and suicide. I was convinced my partner was out to do me harm, and I felt I couldn’t trust anyone. The second medication has kept me from having seizures — apart from a small, sleep-deprived hiccup — and has no apparent side effects. Perhaps I should be celebrating the fact that my seizures are so easily eliminated by a single pill twice a day, but for some reason, I feel as if I’m not living up to the potential of the “post-hemispherectomy poster child,” because my heart tells me medications reveal my physical shortcomings, the parts of me that are damaged. I feel the return of my epilepsy redefines my personhood, and it leads me to believing I’ve done something wrong and should feel I am a disappointment to myself and others. I also tremble at the thought that trying to come off medications would only make those I love fear I was endangering myself.

I have difficulties coping with the recent return of my epilepsy. Now that epilepsy has re-presented itself as a possibility, I feel as if I have redelivered fear to my friends and family. Accepting I have become epileptic again also presents itself as an impossibility for me. Bringing the words to my lips and letting them leave my mouth feels like an unprecedented admittance of the “burden” I now feel I pose to others. I feel as if epilepsy has redrawn me as someone who comes with complications no one else should be subjected to.

Since the onset of my seizures, I have begun to say more than I hear. I feel epilepsy comes first and the rest of me comes second. The conversations my partner and I have had about my condition have been few. I usually become angry and accusatory quickly. I don’t know how to ask for help. I don’t know how to say aloud that I feel like my epilepsy has ruined and wilted our happy life.

Luckily, my partner’s words have oftentimes had a strong effect on me and have added color to my black and white perception. It was recently that I blew my partner a kiss, and she responded to me, “Do you know how often you do that? When you have seizures, even though you don’t seem to know what’s going on, you still recognize me and blow me kisses. It comforts me so much in those moments.”

After hearing her words, I have found myself reflecting, reassessing and redressing my current position in life. Though I may not be able to dissolve and resolve all the issues of my physical being and psyche, I take comfort in knowing that I blow kisses to the woman I love most, revealing to her that even when my consciousness is seemingly stripped from me, even when we walk the path of neurological uncertainty, my love for her remains an array of affectionate kisses — proof that I still openly love those I love, revealing that even when I’ve stepped out, I haven’t gone.

Image via Thinkstock.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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