Friday, November 23, 2012

What Epilepsy Means to Me: Rachel and Uncle Robert

I'm continuing with our Thanksgiving “family” theme and today talk with my daughter about her Uncle Robert.

We had a successful Black Friday shopping trip (a few gifts, lots of laughs and giggles and more shoes than planned). We were even able to sleep after returning but I definitely still see a nap in my future.  

It was important to me to get my daughter’s perspective about Uncle Robert since she sees me care for him and she is around him when he comes over to visit.  Robert always enjoys seeing Rach but he sometimes mixes her name up with the daughter of his former companion or wishes her "good morning" several times, each time as if it was the first time he's seen her that day.  She's a good sport and tells him "good morning" each time and responds to whatever name he calls her.

(Curiously, Robert also sometimes calls my step-son, Chris, "Steve.")

Rach may not realize it but she (and my husband) are on alert and very responsive when Robert is over and especially when he has a seizure. Both have raced to my side to help when Robert falls (he wears a helmet to protect his head but we still do our best to catch him to make sure he doesn’t actually hit the ground).

Epilepsy doesn’t only affect the person with the diagnosis but the immediate family, extended family and friends and it takes all of us to care for and protect the one with epilepsy.

The more people know about epilepsy, the more epilepsy awareness and education spreads. The more common it becomes to talk about, perhaps that will translate into more research funding and also reduce the fear and stigma of epilepsy.

Rach is well-educated about seizures and epilepsy and can help spread awareness and education about both!  What I love best about this interview is that she sees the most important part of her uncle isn't his epilepsy but his positive attitude.

Robert’s Sister:  When was Robert first diagnosed?  Tell us about the process of getting the diagnosis. 
Rach and her Uncle Robert -
of course, he just cracked a joke

Robert was diagnosed when he was a child, before I was born. I’m not sure how the process went.

Robert’s Sister:  Did your family treat Robert differently after the diagnosis?  If so, how?  

I never knew Robert before he was diagnosed with epilepsy. But I don’t think our family treated him differently.

Robert’s Sister:  Did the kids at school treat Robert differently because he had epilepsy? 

I actually don’t know because I didn’t know Robert when he was in school. 

Robert’s Sister:  What treatments has Robert tried?   What has worked?  What hasn’t worked? 

I know Robert has tried many different medications and, unfortunately, none have been able to completely stop the seizures. I know he also had a couple brain surgeries.

Robert’s Sister:  Do you think the medications affect how Robert feels?

Robert is tired and groggy a lot of the time and I think that is probably due to the medications. But he is one of the most positive people I know, and I’m very glad the medications haven’t changed that part of him.

Robert’s Sister:  Have you done any advocacy work (individually or with an organization)?  What made you want to be involved?

I haven’t personally but my mom and step-dad are involved with, as well as obviously this wonderful blog!

Robert’s Sister:   How has epilepsy affected your life?

Robert now comes over every Sunday so in a way it has given me more time with my uncle instead of just on holidays and birthdays.

Robert’s Sister:  What is your favorite memory of Robert? 

I can’t pick a favorite memory but I always love the jokes he cracks throughout the day when he comes over. He loves making people laugh!

Robert’s Sister:  Do you ever wish Robert didn’t have epilepsy?

Of course. But I never knew Robert before he was diagnosed so to me it is a part of who he is. As cliché as it sounds I think having epilepsy has made him a stronger and more positive person.

Robert’s Sister:  Is there anything else you want to say?

I’m always surprised at how little people know about epilepsy. I think the best way to help our loved ones who have this disease is to spread awareness and educate others about it.

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business.

Robert’s Sister:  Thank you, Rach, for sharing your story of your Uncle Robert with us.

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at

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