I’d like to share that interview with Robert with you during Epilepsy Awareness Month.
A few things to know about Robert: He is 47 years old and has lived with epilepsy and uncontrolled seizures his whole life. He is slightly intellectually impaired but was able to graduate high school and even take a few Junior College classes. (I once saw "slight mental retardation" on his medical chart and flipped out because I thought that was an antiquated term and didn't think it belonged in his medical chart.)
The medications, seizures and falls have contributed to his cognitive and physical decline the last few years so he now uses a walker to get around and I make him sit most of the time (no standing around for Robert!).
Our family has always accepted his epilepsy as just a normal part of our family. Sometimes I just go about the daily routine of managing Robert's care without really finding out what he's thinking or feeling about it because it's been such a part of "normal" for us.
So even though it may take a bribe of a chocolate shake or a couple of cookies to pry him away from Jeopardy, I always learn something new from Robert talking to him about epilepsy and his experience with it.
|Robert with two of his favorite things: 7-Up|
and a deck of cards
Robert’s Sister: How does it feel to have epilepsy?
I don’t want to have epilepsy. I want it to stop completely. That’s one of the main reasons why I had the brain surgeries.
Robert’s Sister: How did your family treat you when you were growing up?
They treated me pretty good. I tried every medication but nothing was ever able to stop me from having seizures. They kept an eye on me.
Robert’s Sister: Did the kids at school treat you differently because you had epilepsy?
I had a lot of nice friends when I was in high school. A lot of them were handicapped also and we went to gym. In the back room we were able to play pool and I even taught some of the guys how to play pool. Some didn’t know how to play right so I taught them correctly. They really liked it too and thanked me a lot for that too. My classmates were nice to me and nice to each other.
Robert’s Sister: Do you think the medications affect how you feel?
It doesn’t hurt me any. When I was younger, I was still having seizures at times before the brain surgery. I always controlled my mood. I thank God for that.
Robert’s Sister: How do you feel about having brain surgeries? Do you think they helped? (Note: Robert has had two brain surgeries)
The brain surgeries did help a lot. The first one was January 4, 1990. I remember I was awake during the brain surgery. The surgery was ten hours long and I was awake and the doctor showed me 3 x 5 cards, back and forth. He had me move my fingers and toes.
Robert’s Sister: What made you want to be involved in research studies? (Note: Robert was involved in a research study for the Deep Brain Stimulator at UCSF as well as a variety of new medications)
To see if they would stop me from having seizures or not.
Robert’s Sister: How did it make you feel when Dad said he didn’t want you to participate in the research studies? (Note: Our dad didn’t like the idea of Robert participating in research studies)
I felt like Dad didn’t want to help me. I believe I did the correct thing.
Robert’s Sister: How do you feel about living in a care facility?
It’s okay. The people are nice there.
Robert’s Sister: What is your favorite memory?
I like to remember Mom. I still remember her in my mind. It’s too bad she had cancer in her stomach and passed away early. (Our Mom passed away from liver cancer in 1999 when she was only 56 years old).
Robert’s Sister: Do you ever wish you didn’t have epilepsy?
Yes. I remember when I was 15 I was at Dad’s house in Modesto. Dad took me to a friend’s house and we went to the Jacuzzi for a while. I told him I was going to do a couple of laps in the pool and went to the deep end. A seizure hit and I fell in. My friend saw me lying at the bottom of the pool and told my dad. Dad dove in and he was still in his work clothes. He dove in and pulled me out. The paramedics had to start my heart again and the Lord told me it wasn’t my time to die yet and I was here for a reason.
Robert’s Sister: What do you think that reason was?
To help other people.
Robert’s Sister: What do you want people to know about epilepsy?
Epilepsy is a seizure disorder. A person could have a seizure and fall down. They may injure themselves also. I remember I cracked open my head 36 times in the past. (Note from Robert’s Sister: he wears a helmet now; probably about 35 times too late).
Robert’s Sister: Is there anything else you want to say?
I thank God for saving me in everything so far.
Robert’s Sister: I have one last question and it’s a really hard one. You better take an extra drink of your shake for this one. Who is your favorite sister? J
(Laughing) – You! (More laughter) No, George Washington! Only joking! (Still laughing) You’re my favorite sister. My only sister also.
Robert’s Sister: Many thanks to Robert for answering my questions!
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 firstname.lastname@example.org.