Friday, November 7, 2014

Epilepsy Awareness Month Day 7: Everyone Loves a Parade

Robert graduated high school while being in the mainstream classes.

Enjoying the kid in all of us
Robert even took a few Community College courses in psychology (although, he will tell you he has a BA in psychology).

Robert lived on his own for many years and then with a woman who also had epilepsy for many more years. They lived as husband and wife and went to doctor’s appointments together, the grocery store together and regularly attended church and many prayer groups. 

Robert’s cognition and mobility weren’t always impaired.  In fact, when I took over his care six years ago (Wow! Has it been that long?), Robert was walking on his own. No walker, no wheelchair – nothing to assist him.

At the time I took over his care, his medical records indicated he was “slightly mentally retarded.”

I became unglued when I read this statement in his chart as not only was I offended by the terminology offended but I disagreed with the assumption.

Robert was slow to respond to questions.  He was a little foggy headed due to his medications but he was not cognitively impaired.

Over the last few years, I have come to the realization that Robert does have a cognitive impairment.  He wasn’t always like this but his decline due to the seizures and medications and surgeries and the numerous concussions has affected not only his mobility but his cognition. 

I guess I have always known this because, ever since I can remember, I have thought of the book, Flowers for Algernon when thinking of Robert and his life. That book affected me deeply when I was a young girl and I remember feeling so hopeful when the experiment worked to increase Charlie’s intelligence and was so devastated when the experiment ultimately failed and we saw the effects on Charlie.  

I remember Robert when he was just like any other boy. I remember him as active and verbal and mobile and accident prone (an example: he somehow stuck a fork in his eye!).

I remember Robert as a young man who lived with our dad for a time after our parent’s divorce.  Robert still talks about how he stopped Dad from having a nervous breakdown (he didn’t actually, but was there when our Dad had a psychotic break and he ended up on a 3-day hold in the mental ward of our local hospital.)

I remember Robert visiting for holidays and birthdays and remembering to take his medication when he kept in his left shirt pocket. 

A pocket now reserved for two black pens and his glasses case.

I remember many negative aspects of Robert growing up (effects of various medications and life circumstances) but mostly remember his laughter and his impish grin.

Oh and his ability to get into the most unusual situations! (Stuck in a mud pit or letting a frog loose in the car during a family vacation to name just a couple.)

Now that I think about it, Robert has always tried to squeeze whatever he could out of life and this vacation has been no different. 

It has been a delight watching Robert’s childlike enthusiasm for the parades and the rides.

I am still having some technical difficulties with new videos but this is a short one that I took during one of the parades. Robert managed to get many of the characters to wave at him.

It must be his infectious smile!


Leslie said...

Thank you for giving us another glimse into Robert's life as a younger man.

Trish Hughes Kreis said...

Leslie, He has changed so much through the years and I just think it's important to share that part of epilepsy with people. There's such a stark contrast from when he was younger to now (and not just grey hair like I have!). :-)