Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.
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Dear Universe,
I am writing to you because I have been recently reminded that you sometimes need to be acknowledged. In addition, I know it is time for me to make a small contribution to the vast energy that is life.
Because of the natural unpleasantness of my neurological state, I generally try to stay as far away from sad movies, books and stories as I can. However, finding myself experiencing waves of emotion surrounding my epilepsy recently, I figured it was only fitting to cleanse my emotions with a good, long, hard, cry.
I recently indulged myself in what my mother calls a “purification novel”. This is the type of novel that makes you cry the whole way through the book because of its sadness and beauty. Going about this task is difficult though, because it is crucial that the right catalyst for purification is chosen. Something too sad will only leave one unmotivated, and something not sad enough does not last long enough to create the post-cry inspiration. The novel that was most fitting for this particular purification was a novel that I picked up in the teen fiction section (often times where I go to avoid the realities of my epilepsy, not dive into them). The novel I chose is titled “The Fault In Our Stars” by John Green. I mixed feelings about the probability of this novel being a good purifier, but I was not let down.
When I began reading this novel, I quickly identified with the main character, Hazel. She, too, was dealing with the miracle of life while balancing the curse of suffering. Of course, she had a self-multiplying virus called cancer, where I merely experience seizures.
She had experienced a near death situation where she had her family around her, praying for her life, which is something that I, too have experienced.
Hazel had to have a constant reminder of her condition in the form of medication, which is something that I have dealt with for the past 8 years.
It is interesting that Hazel should come to contemplate concepts like the vastness of consciousness, when I attempt to relate the idea to my own life every day.
It is funny, Universe, that no matter the condition, the effects don’t differ that much.
Crying my way through these parts was the only way to fully understand the depth of Hazel’s triumph, and the only way to truly plant the seed of hope that I may one day experience a similar soul-altering appreciation for experiencing even a small and fleeting portion of the infinite love that we all crave.
You see, what made Hazel’s story so triumphant was not that she just got to experience real love with the boy named Augustus Waters, but rather it is that she got to do it with such vulnerability and awareness that it is fleeting that she completely opened herself up to the pain that soon followed. She did this with such grace, that as she let the tide of emotion representing loss flow into her soul, she was able to stay strong, and understand that everything would be all right.
If there’s one thing that I would like to be able to accomplish in regards to my epilepsy, it is that. I will learn to regard it as a dear friend, a trustworthy companion and a teacher with endless lessons. Only then will I be able to be completely open to accepting the physical and mental pain that accompanies this.
Only then, dear Universe, will I be able to have a say in how my epilepsy hurts me.
— Written by Lia Turner