I did know that in over 30% of people with epilepsy, seizures cannot be controlled with treatment. I knew this because Robert was (and still is) in this group.
Our family knew what it meant to live with someone who had epilepsy and who was trying all kinds of different medications to control the seizures. Not every family knows what this is like but I have been fortunate that when the people in my life do find out, they are compassionate and accepting.
My husband’s family is no different. They had never known anyone (to my knowledge) who had epilepsy but they have embraced Robert as just one of the family. Robert’s seizures have never startled them. My mother-in-law always asks about Robert and engages him in conversation during family get-togethers. She’s protective of him and, well, acts like a mom which he really eats up.
My husband, Richard, enjoys having Robert over and watches football with him (or, more recently, the World Series – GO Giants!). Richard also barbeques a cheeseburger or two for Robert and makes sure our freezer is stocked with Rocky Road ice cream. A sure-fire way to Robert’s heart!
The interview today is with Richard who tells us what it’s like to marry into a family where epilepsy and a gazillion medications and the possibility of someone falling on furniture or small children without warning are a way of life.
Robert’s Sister: When was your loved one first diagnosed? Tell us about the process of getting the diagnosis.
|Richard and Robert enjoying pizza|
Robert’s Sister: How did you feel when Robert was first diagnosed with epilepsy?
Robert had epilepsy when we first met so my issue was I was very impressed with Robert for having such a positive attitude about life, even with epilepsy. He’s probably the most positive person I know.
Robert’s Sister: Did your family treat Robert differently after the diagnosis? If so, how?
Not that I know of. We do have Robert do everything he can for himself which is pretty much everything other than showering at our house (which we don’t have downstairs). Or cook – Robert has no stove or oven access.
Robert’s Sister: Did the kids at school treat Robert differently because they had epilepsy?
This I’m not sure of. I met Robert when he was in his early thirties.
Robert’s Sister: What treatments has Robert tried? What has worked? What hasn’t worked?
I know Robert has been a part of several medication studies, brain studies (one being at UC San Francisco) as well as being involved in an electrical device study [editor’s note: Deep Brain Stimulator] over the years. All of which seemed to have their pros and cons but none worked one hundred percent.
Robert’s Sister: Do you think the medications affect how Robert feels?
I believe some of the medicines do make him tired and possibly a bit more out of it than he would be if he was not taking them.
Robert’s Sister: Have you done any advocacy work (individually or with an organization)? What made you want to be involved?
I am involved with www.caregiving.com who works more on trying to help caregivers than those with disabilities.
Robert’s Sister: How has epilepsy affected your life?
Epilepsy and Robert have taught me that it’s not how some people think – that you can catch it or that it’s due to something Robert did or that because you have epilepsy your quality of life is less. Robert lives a very good life and brings a lot to our family. He is one of the most positive people I know and believes heavily in his religious beliefs.
Robert’s Sister: What is your favorite memory of Robert?
I have a lot of good memories but the main ones are where he shows his beliefs and positive attitude.
Robert’s Sister: Do you ever wish Robert didn’t have epilepsy?
Sometimes I do and then, other times, I wonder if he woke up without epilepsy tomorrow would he still be as positive as he is now and would he be the same person he is now?
Robert’s Sister: What do you want people to know about epilepsy?
People with epilepsy can and do live a quality of life and we can learn from that and them.
Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business.
Caregiving.com (www.caregiving.com)Robert’s Sister (www.robertssister.com) [Editor’s note: hey, thanks, hon!]
Epilepsy Foundation (www.epilepsyfoundation.org)
Epilepsy Association (www.epilepsyinfo.org)
Robert’s Sister: Thank you, Richard/honey, for sharing your epilepsy story!
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.