Kimberlee is proof that you can meet people affected by epilepsy in any area of life. Grocery store, work, at church or at the movies – even at the hair salon! Kimberlee had been doing my and my daughter’s hair for quite a while before I knew that her dad had epilepsy. (She’s a great stylist, too, so if you’re in the Sacramento area, please call her!)
Robert’s Sister: When was your loved one first diagnosed? Tell us about the process of getting the diagnosis.
Valentine’s Day, 1965 dad was 13 years old and had his first Grand Mal. He was hospitalized for a week and after multiple tests he was diagnosed with epilepsy (not called a seizure disorder back then).
|Kimberlee's Mom and Dad on their wedding day|
Robert’s Sister: How did you feel when your loved one was first diagnosed with epilepsy?
Dad was elated to be diagnosed with epilepsy! His friend had just died of Leukemia and his father had just had a major heart attack. The doctor asked him if he knew what was wrong with him to which dad answered, "Yes, I have leukemia and I'm going to die." Doctor: "No that's not it." Dad: "I had a heart attack and I'm going to die." Doctor: "No. You have epilepsy and you're not going to die." Dad was ecstatic that he wasn't going to die, as you can imagine!
Robert’s Sister: Did your family treat your loved one differently after the diagnosis? If so, how so?
His family treated him the same to his face but behind the scenes his father followed him everywhere and watched him (especially when he was swimming). Sports were a major part of my father’s life and his father took him to six doctors before he found one that said he could continue to play sports so he could maintain his normal lifestyle. But other adults treated him differently. He never knew why until he was older and found out how worried his parents were for him and how they secretly watched him to make sure he was okay. He said other adults treated him as if he were "fragile."
Robert’s Sister: Did the kids at school treat your loved one differently because they had epilepsy?
No. My father was very popular, a star athlete and very strong. He was recruited to play Major League Baseball but wasn't interested in that. He wanted to be a pro football player. He received a full football scholarship to Brigham Young University. He was also a self-proclaimed "Bully of the bullies." His first fight was in first grade when he beat up a kid for picking on a girl with Down Syndrome. No one messed with him after that!
Robert’s Sister: What treatments has your loved one tried? What has worked? What hasn’t worked?
Dad said was a guinea pig for epilepsy drugs for a long time. He was allergic to half of the medications, one even made him gain 100 pounds. The other half didn't work. He has been on non-therapeutic doses of Phenobarbital for a long time now and it has been the only thing to work.
Robert’s Sister: Do you think the medications affect how your loved one feels?
The Phenobarbital slows him down a little but not in a major way. When I was younger and they were changing his medications I remember him blacking out large chunks of time.
Robert’s Sister: Have you done any advocacy work (individually or with an organization)? What made you want to be involved?
Dad speaks out whenever he can and always wants to share his experience with others.
Robert’s Sister: How has epilepsy affected your life?
Dad still won't go swimming alone, for fear of having a seizure and drowning. For him this is a big deal. He is by far the most independent person I have ever met and tries not to let epilepsy run his life. This one fear he can't get past.
For me, I'm scared to ride in the car with him driving and I worry about him every time he doesn't answer the phone.
Robert’s Sister: What is your favorite memory of your loved one?
My father drove trucks at night for a little while when I was young. I remember him taking me with him some nights and me trying to stay up all night with him, but usually falling asleep in the truck, and when he would get off work he would take me out for a Peanut Buster Parfait from Dairy Queen (my favorite treat back then). One morning I dropped it and knowing we didn't have much money I said, "It's okay daddy I didn't need it anyway." He teared up and took his last couple of dollars and got me another one.
Robert’s Sister: Do you ever wish your loved one didn’t have epilepsy?
YES I do. He said no because it might mean he'd have something worse.
Robert’s Sister: What do you want people to know about epilepsy?
You are not going to find all the answers from any one doctor. You have to go to a lot of different doctors to fit the puzzle that works for you. Each doctor has their own knowledge and not one of them knows everything. See as many doctors as you can! Be prepared to move if you need to to find the right one for you.
Robert’s Sister: Is there anything else you want to say?
Keep learning, keep trying, keep searching for what works for you. Have an advocate! Don't give up!
Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business.
Kimberlee Nelson, daughter and hairstylist at Black Butterfly Salon, (916) 834-2117.
Kurt Nelson, father, athlete, intelligent, creative, interesting, amazing story teller, oh yeah, and epileptic.
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 email@example.com.