It all happens so fast. If I even remember it happening at all. My vision blurs like a smear of clouds and the smallest glimpses of clear vision. Like pieces of broken glass. For a brief moment I hear my husband’s voice, “Can you hear me? I love you. I’m with you. It’s going to be okay. I’m right here.” My jaw fights me to speak, and I’m unable to utter a word. With all my might I turn my eyes to look at my husband who is holding my most likely tensed hand, or has his hand on my knee, as I slip into my seizure, unaware.
In an article on Huffington Post, Italian researchers analyzed that there are 82 cancer themed movies. Cancer is a very talked about, fought for condition in this country. Cancer appears in many forms and takes many lives. I pray that cancer and all medical conditions can be cured.
However, there are still many in this country who have no idea what epilepsy is and when they even hear the word or that you have it, fear lights in their eyes like a struck match. All of us advocates, strong voices, fighters, family, friends and supporters, do astounding jobs each and every day breaking down the stigma that surrounds the condition of epilepsy still to this day. I myself am the founder of the organization The Epilepsy Network. Supported by over 18,000 people from around the world. Giving all that I’ve got, alongside my husband, to educate, advocate, and offer support to those on the journey around the world. I am writing on the behalf of each one of us because epilepsy awareness deserves a chance to be in the spotlight so that the world can have a greater understanding of this condition that can happen to anyone, at anytime, for a multitude of reasons.
- Low oxygen during birth
- Head injuries
- Brain tumors
- Genetic conditions
I have spoken with many people who still to this day, believe the correct response in helping a person who is having a seizure is by inserting an object into their mouth which is absolutely incorrect. Inserting an object in the mouth of a person having a seizure could not only hurt the person, you run the risk of getting yourself hurt as well. I have had seizures in public only to have people continue on with their routines as if nothing is happening at all, or simply walk away without helping (wanting to stay out of it). How would you think that makes me feel? How might you feel if this were you?
Coming to from a seizure in public, only to find that the person who decided to continue on with their routine, as if nothing happened at all, is darting their eyes as they’re consistently trying to look inconspicuous, as you’re trying to gather your senses, while trying to understand why no one bothered to show compassion. Not even a little.
Those of us living with epilepsy, our shoes are different but the path is the same. We are on medications or a certain therapy to fight back against our seizures. Sometimes we win, sometimes we get knocked down. We’re still fighting to find a cure.
Epilepsy is a serious condition that needs to be taken seriously. It turns lives upside down. It can even steal lives. There are many mothers, fathers, brothers, sisters, husbands, wives, friends, who could tell you their stories. Our country seldom talks about epilepsy/seizures, until a tragedy happens. It’s talked about on news networks and the like, so briefly and then all goes quiet.
People are too nervous to care because of the stigma surrounding epilepsy. Because of the lack of knowledge there is. Because of the limited support shown in the public eye. This all needs to change.
Epilepsy needs to be highlighted as much as other conditions are. It needs to be given a chance to open the public’s eye and their hearts. Former NFL Running back Jason Snelling deals with epilepsy and he writes, “If you just explain it to people, they’re very understanding. It’s good to let them know. It’s good to make people aware and that there are people like me who have epilepsy.”
When I attended the Walk For Epilepsy last year, it was my first experience meeting others who had the same condition that I had. It was incredible. A memory to cherish forever.
Hollywood, countless movies are created and when a movie is created and focused on a medical condition, people take notice and listen. I am asking you to please consider giving epilepsy a spotlight for the at least 65 million men, women and children worldwide and the estimated 3 million men, women and children in America who are living with epilepsy.
Thank you for reading this letter. On behalf of all epilepsy fighters, caregivers, and supporters who give their whole heart to educate, advocate, bring hope, and find a cure, standing together, I ask you to please hear us. We deserve an opportunity.