Thursday, November 22, 2012

What Epilepsy Means to Me: Other Brother and Robert

Happy Thanksgiving to all of Robert’s Sister’s readers!  Thanksgiving is my most favorite holiday because it is all about family and, well – let’s be honest. It’s also because there’s pie. J

Thanksgiving is an appropriate day for this special interview. Rich, otherwise known here as “Other Brother” is the middle brother between me and Robert. Rich and I are 21 months apart and have always been close. I actually have a memory of him (or at least I created one) of him being brought home from the hospital and thinking he was my very own, live doll!  It was a dream come true!

Mom would tell me that she would find me in the crib with Rich many mornings, just playing and keeping him happy.

We stuck together through some difficult family moments (which you can read about in my first book, Forever a Caregiver) and I am forever grateful for his quiet strength during that time.

As close as we are, some of what Rich shares in this interview about Robert was a surprise to me.  Reading this brought me to tears which is apparently my normal state these days!

I’m absolutely delighted to introduce you to Other Brother.

Robert’s Sister:  When was Robert first diagnosed?  Tell us about the process of getting the diagnosis. 

A silly sibling moment. (l-r)
 Robert, Rich, Trish
I wasn’t involved in the process.  I think I was in the 6th or 7th grade, and Robert would have been in the 3rd or 4th grade.  He missed a lot of school that year due to all the doctor visits (including a trip to Switzerland).  He had to repeat that grade.

Robert’s Sister:  How did you feel when Robert was first diagnosed with epilepsy?

At first, he had a mild form of epilepsy.  He didn’t black out or lose his balance.  He would see pictures in the corners of his eyes.  He seemed normal to me (well, as normal as any nine year old boy could be) but all the adults were saying how serious this was.  His epilepsy progressively got worse, though, and he started having multiple seizures a day, even with all the medications he was on.  I soon realized that he would not have anything like a normal life, and I became very sad for him.

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

Initially, he wasn’t treated differently, other than our parents taking him to different doctors and hospitals trying to find a cure.  Later, as his seizures became more frequent and he would lose his balance, we became more protective of him.  When we were around, we tried to make sure he was in a safe place (such as sitting down) in case he had a seizure.  He couldn’t drive a car or swim.  However, our father wasn’t quite as protective as the rest of us and allowed Robert to do some things he shouldn’t have done, such as swim without supervision.

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

It was tough for Robert in middle and high school.  During this time, not only did Robert have to deal with his epilepsy, but our parents divorced during this time, and we wound up moving to a new state.  Robert was always very social, and it was usually easy for him to approach people and make friends.  But at the new middle school in the new state, Robert became depressed and had severe anger problems.

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

Robert has been on multiple, daily medications since his first diagnosis some 40 years ago.  The doctors periodically try new medications, but nothing has been able to fully control his seizures.  For most of his life, with the medications, the seizures are “only” a few times a day.  There have been times when he has gone several days without a seizure, and Robert would proudly declare how many days it has been since his last seizure.  Without the medications, Robert would have continuous seizures and would need to be confined to a hospital bed.  It is amazing that the medications have been able to do what they do.

Robert has tried various surgeries as well, but nothing has made a difference.

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

When he first started taking the medications, we noticed he became more moody.  As he reached his teenage years, he became more angry and depressed.  It was difficult to tell whether this was due to his medications or if it was just his personality.  Both of our parents had bad tempers, so it was hard to tell with Robert if it was the medications or if it was just something that ran in the family.

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

I haven’t done any advocacy work.  My sister does quite a bit, though.  She has an excellent blog! [Editor’s note: Thanks, bro!]

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

Epilepsy has not affected my life, but has severely affected Robert’s life.  He has not held a driver’s license.  He has never been able to get a job.  He did volunteer work for a while at a care facility for the elderly, but the organization made him stop because they were concerned about him injuring the residents.

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

Before he started having his symptoms, Robert was a real terror.  He was an extremely hyperactive young boy, and an annoying little brother.  Looking back, those are my favorite memories of him.

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

I’ve never told anyone this before, but from the time Robert was diagnosed with epilepsy, until I was in my mid-20’s or so, which was a period of about 15 years, every birthday wish I made, every wish I made upon a star, every wish I got from breaking the turkey’s wishbone, was a wish that Robert didn’t have epilepsy.  I eventually moved on to other wishes, but I still wish he could be cured tomorrow.

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

If you are reading this and you have epilepsy, please know that I have the utmost respect for you.  The challenges you face and overcome are nothing short of incredible.

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

Keep reading my sister’s blog!

Robert’s Sister:  Thank you, Rich, for sharing your story of Robert with us. I appreciate you sharing openly about growing up with Robert. You are an amazing brother – now, please pass the pie! 

And, how about taking another shot at that wishbone?  

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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