Katherine began to choke.
Hearing her choke, that sound, sent a wave of shock through my body. It was like I totally blacked out for a split second and was immediately transported back into my kitchen as my 13 year-old self. Sitting at the kitchen table reading Sports Illustrated searching for the “Faces in The Crowd” section my father, now in an electric wheel chair, was parked across the table reading “Science” magazine. His abdomonal muscles had begun to weaken which made coughing on his own nearly impossible.
When he did need to cough his mouth would open and if you were looking you could see that he was trying to flex his abs. As I sat there flipping through the glossy pages seeing centerfolds of football players diving, basketball players dunking the ball and the like I looked up because he hadn’t said anything for a few minutes.
His eyes were large his mouth was open and it looked like he was choking. He was staring at me in a silent effort to get my attention.
“Mom!” I yelled as I jumped up and flung to Sports Illustrated to the side and ran around to his side of the wooden table our neighbor had built us.
“Dad can’t breathe!” I screamed frantically while trying to figure out what to do. My mom hurried into the room and immediately started pushing on my father’s abs. At first it didn’t seem like she it was helping at all, but once she got her timing down with him breathing out he began to cough.
Exasperated I stood beside them and watched. My father eeked out a “thank you” to my mother after he was done coughing. Not knowing what to do or how to react I went up to my room and sat there with the door shut, my preferred “coping” mechanisms whenever something happened I couldn’t deal with. I cried a little bit and lay with my face down in my pillow.
These coughing episodes and similar “scares” happened more and more frequently as the ALS progressed and although they did become expected everytime they happened I was scared he wouldn’t recover.
Katherine was the protaganist in the play “33 Variations” written by Moises Kaufman. “The play simultaneously examines the creative process behind Beethoven’s Diabelli Variations and the journey of a musicologist, Katherine Brandt, to discover the meaning behind why Beethoven was compelled to write thirty-three distinct variations on a simple theme by a nobody music publisher. The progression of her ALS and her relationship with her daughter are also themes, as is Beethoven’s growing deafness.” – Wikipedia http://en.wikipedia.org/wiki/33_Variations . Apparently it was a broadway performance starring Jane Fonda.
I ended up at the play because a good friend from college played the daughter of Katherine Brandt. I knew ahead of time that the main character, Katherine, had ALS. Since my father and grandfather both died from the disease I was a bit wary of attending the play, but felt I could handle it.
Throughout the play as Katherine’s ALS progressed I kept feeling like the play did a poor job of accurately representing someone’s experience with the illness. I had to keep telling myself that each person’s experience with ALS was likely to be vary different and that just because my father’s illness didn’t progress the way other people’s may have. For example neither my father, nor my grandfather, ever lost their ability to speak. The motor neurons in their tongues kept working and their ability to breath went before their ability to speak. In the play, Katherine’s tongue, began to lose strength and she had difficulty talking towards the end. There were numerous other experiences she and symptoms that she had that my father never exhibited.
Abbout three-quarters of the way through the play I began feeling confident that I would make it through the play without having any “flashbacks” or would avoid triggering of traumatic memories. About at that moment Katherine began cough triggering my first “flashback” in quite a few years.
I was pretty rattled by it, but made it through the play without getting up to leave or breaking down in tears. I was completely useless the rest of the night and next day though. I called my sister and we talked about other things that trigger memories and deep emotions to resurface.
I realized I haven’t met anyone with ALS who wasn’t in my family and so this was my first experience and it was through a play. I’m glad it happened even as hard as it was. It gave me good reason to pause and reflect, continue to process emotions I’ve hidden away and forgotten.