He was diagnosed with Huntington’s chorea shortly after his retirement. It is a slowly progressive genetic disorder that affects coordination and leads to mental decline and dementia. Over a period of several years, his equilibrium left him and you could see that every step was an effort to maintain his balance. He couldn’t sit still and he made strange facial expressions.
When his disease progressed beyond my aunt’s ability to assist him, he became a resident in a nursing home. In the end, she described him as showing signs of a man frustrated and trapped in his own body. Well, he’s trapped no more.
Erie, Pa., is far enough away from Cincinnati that I would have been given a pass for not attending the funeral, and my own mother discouraged me from driving up, but it was a fairly easy decision. Aunt Dorothy was a favorite, and I’d spent many summer days with my cousin Dale while growing up.
At the church, I found the pew with my family and sat at the end after paying my respects to my Aunt Dorothy and my cousin Dale. I gave the open casket only a passing glance as I’ve found that the bodies of the dead never capture the essence of the person that I knew. They never simply “look like they’re sleeping.”
Quietly, my brother Matt and I chatted. I asked if he was going to share any memories of Uncle Roger. I said it with a wry smile that Matt couldn’t have missed.
In a whisper, Matt told me a story of how Uncle Roger almost plowed through an intersection that had a stop sign.
As the stop was approaching, it became obvious by his rate of speed that he was oblivious to the danger ahead. He literally slid to a stop after somebody yelled.
If my family sat down together, we could each come up with a number of similar stories of things he’d done that left us with jaws agape and even angry all those years ago. After his diagnosis, all these episodes of awkwardness, lapses of judgment, started to make sense.
My own story of Uncle Roger I kept from Matt. We had returned from shopping after Thanksgiving. Uncle Roger was at that stage of the disease where we thought of him as being on the cusp of whether it was safe to leave him alone or not.
When we returned from shopping, we found Uncle Roger upstairs, in the bathroom. His pants and underwear were around his ankles. He was sitting naked from the waist down in the claw-footed bathtub.
He was a jerky 6-feet-6-inches tall and it took both me and my own nephew to pull him up to his feet. After we sat him down on the toilet, we left him for Aunt Dorothy to tend. Whether he was lying in that tub for minutes or hours, I’ll never know. With his loss of coordination, I gather he was using the toilet and lost his balance, falling forward into the tub.
My seat in the pew two rows behind my cousin Dale allowed me to watch him intently without being obvious. You see, the disease is hereditary and his future is a coin-flip. He could be tested to find out if he carries the genetic mutation but chooses not to know.
I remember my cousin being odd and uncoordinated as a boy, but so were lots of boys. He’s just now reaching the age where the physical symptoms should be apparent. I noticed nothing amiss. He just looked like a man who has lost his father.
Finally, the part of the service arrived when people could stand and give words of comfort to the family in form of the memories of Uncle Roger. Thankfully, they came — stories revealing the character of this gentle giant.
One told of Uncle Roger’s brother asking him back when they were both young if he wanted to play baseball or go swimming. What seemed like his inability to make a decision was really a selfless desire to please others. It was far more important for Roger to do whatever his brother wanted to do.
One told the story of how another’s carelessness caused my Uncle Roger to be struck in the head and how calm and understanding he was when others might have struck back. Another told of his dedication to the church and how Roger taught him to be a deacon.
A friend spoke of how he listened to her concerns and fears regarding a strike and how he could empathize having gone through a strike of his own. My oldest brother, Dave, referred to him as a role-model who loved his God first and his family second.
Listening to the stories and the trembling voices of the others, I felt guilty for my own unflattering image of Uncle Roger in the bathtub, as if his disease defined him. I also realized my own impact on those around me paled in comparison to my uncle’s and wondered what others would have to say about me at my funeral.
On the long drive back to Cincinnati, I pieced together this story, fought off sleep and wondered how I’d live my life differently to leave a more meaningful impression on my friends and family.