Here is another guest post in my Faces of Epilepsy series. A quick reminder as to how we can jump from Undiagnosed Children’s Day back to a series on Epilepsy – Aidan was born with an undiagnosed disability; last year he was diagnosed with Epilepsy; this is only a piece of the puzzle of Aidan as opposed to a complete descriptor of what is going on with him neurologically. Now onto Hillary. My sister was recounting to me a rather tense work meeting she attended. In an emotionally laden pregnant pause, Hillary had a tonic-clonic seizure. Now there’s a great ice-breaker. So now we see a different face of Epilepsy, that of the young professional. Meet Hillary…
The world seems unusually quiet to me when I am waking up from a seizure. Sounds are muffled and the soft voices around me take a moment to amplify. With my tired body sprawled out on a hard surface someone’s face hangs over me asking me simple questions that I can’t answer. What day is it? Do you know where you are? What is your name? There is burning in my throat from vomit that is inevitably met by a large lump forming after someone says “I am sorry Hill, you had another seizure”. The tears stream down the side of my face and drip into my ears.
I have had the privilege of working with children affected by Epilepsy and other life altering diagnoses for the past 16 years. Long before I myself was diagnosed I had come to know the incredible ability of a seizure to capture situations as well as the emotions of both the individual and the caregiver. To be diagnosed two years ago, at the age of 29, was not only surprising, it was life changing.
I have tonic clonic seizures that last anywhere from a minute to two minutes. My relationship with the medication has been tumultuous to put it lightly. Typically I am fiery and passionate. On anti-convulsants I feel subdued, lethargic and numb. On medication I feel perpetually one step behind, my wit disappears and I feel strangely hollow. Out of frustration and exasperation I have gone on and off Keppra, Topomax, and Lamictal.
Most recently my husband and decided we would like to start our family. The condition tossed another challenge our way as women with Epilepsy face their own set of unique hurdles when trying to conceive and maintain a healthy pregnancy. I know there are many options; undoubtedly we will find a way to have a family.
I have always liked to consider myself a resilient person, a wack-o-mole of sorts. My experience with Epilepsy has tested that idea and made me dig deep. Epilepsy has ignited feelings of frustration, insecurity, embarrassment, and loss. At times, I have experienced the social stigmas that come along with misunderstood conditions. However, I believe that Epilepsy will never be able to define me.
I would love to be one of those people who say “this diagnosis is the best thing that ever happened to me” as you often hear people declare after finishing their battle with cancer. Regrettably, I am not. I am working hard to arrive at a place of peace living with Epilepsy. I have found the best healing through humor. It is one of the few ways that I can feel a sense of control with a diagnosis that often makes me feel vulnerable. I have gained a tremendous amount from this journey and feel grateful for the new perspective that it has given me.
To me my Epilepsy is like my shadow, it will always be with me and at times more visible than others. In no way can our shadows limit who we are and what we are capable of doing.
While I might not be able to beat Epilepsy I am most definitely going to give it a run for its money.
She shares her story. You share this post. Together, we keep Epilepsy on the run and those social stigmas at bay.