Jessica Gavinson
Hello. We live in Vermont with our daughter.
Ten years ago was the first time we saw somebody having a seizure. That someone was our daughter at only 12 years old. Yes, our own daughter was diagnosed with epilepsy. Epilepsy is more common amongst us than people can ever imagine and yet individuals with epilepsy must endure painful stigmas day in and day out. In fact, in the state of Vermont, over 700 children and teens aged 6-12 are living with epilepsy. The public in general do not know what to do when a person is having a seizure. We, as parents, have painfully learned about this condition for many years and wish we knew what epilepsy was before it encountered us.
We want to share a real story that easily illustrates how the lack of basic understanding of epilepsy can impact a person’s life. Our daughter was about to leave on a college school trip and unfortunately had a seizure while she was waiting in line at the airport with the school group prior to their flight check-in. When we arrived, she was lying on the floor unconscious, vulnerable to her surroundings as this condition disconnects her body from her mind. Constantly, there is the risk that she will get hurt when she falls to the ground or get hurt from falling into an object next to her. We have lived through many seizures, and it is always a shocking moment full of anxiety and fear for our daughter.
To our relief, she had not hurt herself physically. My husband cushioned her head on his lap while she was still on the ground, and we took the appropriate simple measures we learned to provide a safe environment for her recovery. It always feels immensely long until she starts breathing again and then starts to come back from unconsciousness. It is impossible to describe the agony we as parents must live every time this happens.
Once our daughter recovered after a few minutes, we had her evaluated by a doctor and she was given the all clear to take the flight. We brought our daughter back to the airport to catch the next flight and join the school group at the destination, but we were told at the airline counter that the travel group leaders had removed her from the travel list. She was excluded, she had no ticket anymore and she would not be able to join them despite the fact she had made the courageous effort to go back to the airport and be part of the trip. It was very sad, and it felt like a total defeat. Just imagine that. We could tell so many stories like this one where we have witnessed how stigma and exclusion prevail due to lack of knowledge about this medical condition.
The school travel leaders didn’t know what to do in that situation because they didn’t know anything about epilepsy. Later, when we arranged a Seizure First Aid Training for the travel leaders, they admitted that they felt pressured by airport security to remove our daughter from the travel list. No one had the knowledge to aid our daughter; not the travel leaders and not the airport security. They were afraid and they wanted to avoid having anything to do with it. The outcome would have been different if they had prior knowledge and preparedness. For example, most people know what the Heimlich Maneuver is and how it can save a life when somebody is choking. Restaurants and other public places have the Heimlich Maneuver steps on display, and it has become part of public knowledge.
In a similar fashion, people should know about epilepsy. People should have a basic understanding of what epilepsy is, how to react and how to be inclusive to an individual with the condition. If you think this will never happen to you, think twice. There is a high probability of a loved one or even you end up with the condition. Statistics show 1 in 26 people will develop epilepsy during their lifetime. The public must be better educated on epilepsy and how to respond to seizures.
I hope the message in my letter engages our elected representatives in congress to enact bills in our schools, communities, airports and other public spaces. We should all make epilepsy awareness a part of our lives and persuade each one of us to help those individuals with epilepsy not only during an emergency but also during the length of their courageous lives.
Seizure Safe Schools legislation will make sure that schools are mandated to provide Seizure First Aid Training to their staff. This training would have helped our daughter and so many others in countless situations.