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Emily’s Perspective: Life with severe seizures

With my EEG
With my EEG

Jonathan Safran Foer, author of Everything is Illuminated and Extremely Loud and Incredibly Close, once said, “Sometimes I can hear my bones straining under the weight of all the lives I’m not living.” The quote sticks with me every day. I feel there are so many things I could be doing with my life; there are so many different lives I could be living, you know?

Seeking comfort

Sometimes I feel trapped by my epilepsy, but I try to remind myself I will beat this one day. I find comfort in the fact that most people with epilepsy lead pretty normal lives. Did you know that 80 percent of people living with epilepsy can be significantly helped by modern treatments and therapies? And some go months or years between seizures!

However, the condition can and does affect the daily lives of people with epilepsy, even those who have seizures controlled. It also has an effect on their family, and their friends. People like me, who have severe seizures, aren’t able to always live life as normally as we would like to and, to make matters worse, on average, we have a shorter life expectancy.

Living with severe seizures

It is common for people with epilepsy, especially children, to develop behavioral and emotional problems because of seizures. I found that because I was embarrassed, frustrated, tired, and feeling ill a lot, that it caused a lot of emotional difficulties for me.

Other problems may result from bullying as a result of the stigma associated with epilepsy, which is something I also experienced. People with epilepsy have an increased risk of poor self-esteem & depression. These problems may be a cause (or result) of the avoidance by other people. Many people with epilepsy also live with a constant fear that they will have another seizure. Before I do anything like crossing the road, climb a ladder or a set of stairs, I always have to ask myself “Do I feel safe?” The whole thing is exhausting.

Barriers to a life well lived

In addition, by law people with epilepsy or other handicaps in the UK and US cannot be denied employment or access to any educational, recreational, or other activity because of their seizures. However, one survey showed that only about 56 percent of people with epilepsy finish high school and about 15 percent finish College and University. These numbers, shocking as they are, indicate that significant barriers still exist for people with epilepsy in school and at work.

Restrictions on driving limit the employment opportunities for many people with epilepsy, because it means getting the bus or train to work every day, as biking or walking can be dangerous for some. Antiepileptic drugs also may cause side effects that interfere with concentration and memory. Children with epilepsy may need extra time to complete schoolwork, and they sometimes may need to have instructions or other information repeated for them. Teachers should be told what to do if a child in their classroom has a seizure, and parents should work with the school system to find reasonable ways to accommodate any special needs their child may have. This education is often lacking, but I aim to make a difference and break the silence.

Breaking the silence

I have found interacting with others who also have epilepsy can help you not only to cope with your epilepsy, but also may help you to manage it, too. There are support groups that meet face to face, but many online forums are specifically dedicated to individuals suffering from epilepsy. I find as I get older it helps a lot to talk to someone who understands.

In fact, one of my friends who also has epilepsy always says to me, “Emily, you were given this life because you are strong enough to live it”. I just want you all to know that you are all strong enough too, even when things get tough along the way.

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