Living with Epilepsy

When I started my latest educational series about epilepsy, I wanted it to contain as much information as possible so people were more aware of this disease. What is it? What do I do if someone is having a seizure? How is epilepsy treated?

I looked up statistics and facts and research studies (learning a lot along the way!) but I also wanted to tell people what it’s actually like living with epilepsy. Since I don’t have epilepsy myself but my youngest brother does, all I can do is share his personal experience of living with epilepsy his entire life. Forty-five years of epilepsy and, in his case, uncontrolled (also called “intractable”) seizures.

Robert’s case is a “worst case scenario” since only 10% of newly diagnosed cases of epilepsy fall into the uncontrolled category. Many, many people have their seizures controlled with medication, surgery, diet (or just stop having seizures for no known reason!) and are able to hold down a job, get a driver’s license and raise a family. Those with controlled epilepsy live with it by managing their rigid medication schedule and frequent visits to the neurologist in between soccer games, date nights with their spouse and grocery shopping (“normal” stuff). Of course, there may be breakthrough seizures that put a glitch in these activities but the seizures are manageable for many people living with epilepsy.

How does someone with uncontrolled seizures manage to live with them? If there’s one thing I’ve learned from Robert it is that you play the best hand you can play with the cards you are dealt – and you will always come out winning! (Unless you’re me playing an actual card game against Robert and then, well, I’m losing).  :-)

As with any major life blow, there will be people who are down and out with the first blow and there are others who don’t have time to ask “why me” because they’re too busy figuring out how to manage this new situation and making the best of it. Remember the woman who was paralyzed at her bachelorette party due to a freak accident? She spent a year recovering and last month had the wedding of her dreams.
That is inspirational!

How has Robert managed to live with uncontrolled epilepsy?  I'll give you a hint: he's never asked "why me?"

1. He prays. I know, it’s not for everyone but it has been a lifesaver for Robert. He recently told me (at JC Penney’s of all places!) that when he almost drowned at age 15, God spoke to him and told him He wasn’t done with Robert yet. Robert heard that he had more to do here. That Robert was here for a reason. Robert has taken that lifeline very seriously ever since then and faithfully reads his bible and prays before meals (and snacks) and at bedtime. I also think it just may be the reason he wins so many darn card games!

2. He takes his medication. He used to be able to manage his medications on his own but he now needs someone else to make sure he takes the right amount at just the right time (and needs me to make sure his care facility doesn’t make any unauthorized adjustments to them!). There was a brief time in his life when his church friends told him he was “cured” and he could stop taking his medication. That was a pretty awful time for him and we quickly instilled in him the importance of taking his medication. He hasn’t had a problem with taking it since then.

3. He wants to be independent. Robert lived independently (with some family oversight) for years. He can’t do that any longer but he can do quite a few things on his own. He dresses himself even though it is a painfully slow process and he only occasionally accepts help. He’s pretty stubborn about accepting help but he’s getting better about accepting it when it’s warranted.

4. He is grateful. Robert says thank you for everything (“please” he sometimes forgets!). He appreciates it when people open the car door for him or make him a sandwich. He says thank you when I find him a funny television show to watch and he thanks me when I bring him more 7-Up to drink.

5. He lives in the moment. Robert doesn’t worry about rushing to complete every last item on his to-do list (Robert doesn’t even have a to-do list!). Robert likes to play cards. He likes to watch Jeopardy and Wheel of Fortune (Jeopardy is his favorite, though). Robert likes to do Word Search puzzles and he likes to fly kites when his Day Program goes to the park. When he was a little kid, though, it was a different story – he was the most hyperactive kid I know! Rush, rush, rush! Now, I’m the one having to slow down (and set down my addictive smart phone) to enjoy a few card games with him.

6. He never gives up hope. With every one of his prayers, Robert prays that “God touches me so I won’t have seizures anymore at all.” Rational me knows there won’t be any magic answer to Robert’s seizures but I admire him for not giving up hope.

Robert has learned to live with his uncontrolled epilepsy in a positive way and I find that to be truly inspirational (and if Robert can be that hopeful about his epilepsy, maybe I can hold out hope for my card game!).