Welcome to Living Well With Epilepsy’s new column with a teen viewpoint. I’m Emily Donoghue, a 19 year-old girl from England. Keep an eye out each month for a new topic from Emily’s Perspective.
Living with epilepsy
I remember back in 2006, when I was diagnosed with epilepsy. Mum told me what I could and couldn’t do; it didn’t mean much because, I mean, what 11 year old wants to learn to drive a car? Or, what 11 year old wants to go out traveling alone?
It all seemed unimportant to me and, I didn’t really understand what Epilepsy was. In school you learn about Cancer patients, Asthma, Diabetes, you know? But not once did we ever learn about Epilepsy or seizures, and most schools still don’t. (But that is a topic for another day.)
Learning to Drive
Learning to drive has always been a big thing for me, mainly because I can’t do it. Epileptic seizures are considered the most frequent medical cause of collapse at the wheel. This includes all seizure types such as tonic clonic seizures (which I have), absences (have those too), myoclonic jerks, simple partial seizures and auras or warnings, even if consciousness is not noticeably impaired.
Owning up to disability
It was only when I turned 17 that I realized I wasn’t going to be able to drive. It wasn’t that I just had to be a little careful, or I had to make sure someone was with me. Nope I couldn’t , period. It hit me that I was going to be getting the bus and the train everywhere when my friends would be driving places. I realized I would be stuck walking in the rain when my friends could just hop in their car. When it finally sunk in, it made me feel really trapped.
In fact, the more seizures I had, the longer I had to wait before I could get lessons to learn how to drive. I now have to wait until I am at least 28 years old before I can even be considered. I still have to tick the little box on letters that says I am disabled. And, I am still being discriminated because there is stigma about Epilepsy.
Free travel options
When you can’t go anywhere you have time on your hands. So, I did a lot of research on traveling with seizures, and I came across information on the possibility of free travel depending on your condition. I went to my local county council and I asked about an Epilepsy card. It turns out Epilepsy ID cards are only available in America, not in England where I live. However, I am entitled to what is called a “Gold Card”. (fancy right?)
A Gold Card is a travel and discount card for over-60s and people with certain disabilities.(not so fancy) It turns out I fall into the right category. With the card I can travel free on buses and I also have a rail card which gives me discount on trains.
Once I was able to put things into perspective, I realized how much better off I am with free travel rather than risking driving. And just think of all the money I would be spending on driving lessons and insurance anyway!
The rules for driving differ from state to state and country to country. Where I live, I’ll need to remain seizure-free for at least a year in order to carry a license. Having to go seizure-free for an extended period of time like this can be extremely tough if you have a lot of seizures or have your medications changed a lot. If your seizures aren’t under control or you are still changing medications regularly you may want to look into whether or not a travel card is available in your area. If you decide to go this route, it’s likely you will need to get a Doctor’s note as proof of your condition.
Don’t give up
As a final note, I would like you to remember that most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. And as Audrey Hepburn said, “I believe in being strong when everything seems to be going wrong.”
How do you handle driving?
I’m curious, do you drive? If so, where do you live? Have you decided not to drive? How do you handle getting around? Comment below so everyone can participate in the conversation.
25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England.
Emily’s Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10.
Based in UK.
Emily I just started driving again after not driving for over a year. I drive with caution and still use the bus to travel to my college. It takes around 2 hours travel time one way. It takes 30 minutes driving time. I study and read while on the bus and have become a better student by getting better grades on test. I live in Delmar NY USA and live out in the country. When my driving was suspended I was ANGRY I went to great lengths to assert my independence. I traveled to work on my bike over 40 miles round trip to show that I didn’t need to be dependent on any one. Shopped for food and traveled to my appointments by bike. So I found that the negatives and positives and just hope the seizure monster is contained and controlled in its cave and remains and nevr comes out again.
Em, you are fab! X
@stephen I am so happy for you being able to drive again, that must be such a weight off your shoulders and it will save you so much time not having to get public transport everywhere. I am very proud of you for getting your grades and independence back too.
Thank you Rach! X
Andrew Ph Way
I’m in Canada and like you have to go a year seizure free before getting my license. I had it once, well it was taken away 3 times before. Even went 7 years without a seizure, now I choose not to drive. Its a hassle, expensive, and I’d rather hurt myself than some innocent person who was at the wrong place at the wrong time.
I woke up today feeling a lil seizure or two, what a struggle, you’re right, it makes us who we are. 😀
My son just got diagnosed this year 2014 as having Primary Generalized Epilepsy. He is 17 and is also diagnosed with high functioning Autism and Bipolar. I know he will never be able to drive but my question is can he still go on Disneyland rides? Plus how can I as his mother stop living in fear of his next seizure and fearing he could die from seizures? What good advice can you share.
Jessica Keenan Smith
I have reached out to Disney Worldwide Public Relations. They may be able to provide me with their established rules and regulations or at least a link to them. I will post them here when I hear back.
I would speak to your son’s doctor regarding driving. The rules vary state to state and country to country. Your doctor will not only be able to give recommendations but also provide information on how long he would need to go seizure free before he was eligible for a license.
Regarding the fear component, well that one is more personal. Your comment (as many comments do) has prompted me to think about the need for an article addressing the fear element of living with epilepsy. For now, I suggest take each day as it comes (the good and the bad). Talk to friends and loved ones. And find examples of people who are living long and happy lives with epilepsy. These examples may help ease your fear a bit.
Hang in there.
Thank you so much for your helpful info. It did help me feel a little more at ease. I appreciate your time and help to answer my questions. I will probably have more later. Thank you again.
Jessica Keenan Smith
Disneyland Resorts provided information to help you make decisions when you visit Disneyland:
Karen, Thanks for asking.