I am so excited because November is Epilepsy Awareness Month. I love when unrecognized illnesses get their time to shine. I wish that awareness was raised more for illnesses like Epilepsy. In October the NFL and many other large companies, hospitals even churches wear Pink for Breast Cancer, why not wear purple for epilepsy, or blue and green for Pseudotumor Cerebri. But not just the illness I’m lucky enough to have but all rare illnesses. The only way these diseases find cures is by research and research doesn’t happen if people don’t even know they exist. Since this month is dedicated to Epilepsy and I have first hand experience with it I want to talk about that.
In July of 2009 at Cedar Point I had my first “Episode” I passed out, and had to be attended to by paramedics. After an IV and some rest they sent me home. My family and I were terrified because nothing like that had ever happened to me . I was embarrassed because waking up with rows of people staring at you and not knowing what happened is the worse feeling ever. My doctors at home called it a fainting spell and said that I was fine. Months go by and nothing else happened. Now its January and me an my family get back from dinner when again I have an “Episode.” This time it was way worse, when I woke up I was afraid and I didnt know what had happened or where I was I couldn’t speak or move my left side. I cried and it seemed like hours before I stopped crying. The emergency room put us through hell…. At first they thought I was faking, then they thought I was on drugs, then they thought I just wanted drugs from them it was a horrific experience. Eight hours and a whole bunch of test later they sent me home with no answers. Experiences and Episodes like these happened to me for years with no help or idea what was wrong with me or why this kept happening. I had to leave college and stop jobs. I seen 13 neurologist and Pediatric specialist before I was diagnosed with Epilepsy. Many people with Epilepsy go through similar situations when trying to figure out what is wrong with them. April 7th,2014 is honestly one of the best days of my life. It is the day a neurologist diagnosed me. I was sad for a moment but relieved. It took months of research and observation on my part to learn my auras and triggers. Teaching myself things I could and could not do and and learning how to recover after a seizure. The hardest thing about it was learning to tolerate the medication and monitoring the side effects. The trial and error phase of medication when it comes to Epilepsy is atrocious and scary. The medications change everything. They affect all things
Issues with medications aren’t the only thing I’ve had to learn handle with epilepsy. Whenever you meet someone you have to decide whether or not to tell that person about your epilepsy. You have to deal with your mom having a panic attack every time there is a bump in the house thinking it’s you hitting the floor. We have to endure the fear of waking up and not knowing where you are or soiling yourself in front of strangers laughing. Not knowing if you should inform your new employer about your epilepsy, or tell your new friend. Losing hours of time not knowing how you got where you were. The worst part is learning to let go of control. With epilepsy you have NO control, not over how it happens,when it happens or where. That is what I still suffer with the most today.
After all these years and going through so much I’ve learned to adjust and with time you learn to accept things. Epilepsy doesn’t have me, I have epilepsy. Unfortunately enough it is apart of me and I will make the best out of it. Making the best out of Epilepsy means sharing my story with anyone who wants to listen to hopefully help them. Participating in Epilepsy events to raise financial support for the cause and doing anything I can to raise awareness to all so that maybe just one person will help someone they may know with Epilepsy or raise awareness themselves. I employ all those with Epilepsy to do the same raise some money, make some noise and tell your Epilepsy story. To those who support and care for someone with Epilepsy continue being amazing unsung heroes to us all, be sure to take time for yourself and raise awareness yourself by telling your story! Everyone else donate and research what you could do to help someone with Epilepsy. Happy Epilepsy Awareness Month!!