I watched an old 60 Minutes segment about this communication device, which uses thought patterns to help people communicate. The man who was using the device had ALS and could only move his eyes. In order to use the device, the subject has a caregiver put a skullcap on his head and put cold conduction gel into the little holes next to the scalp. Electrodes go into the holes. The man ( I think his name was Scott) stares at a screen as letters go by and when he sees the letter he is looking for, a part of his brain lights up and the computer knows which letter to choose. The process takes 20 seconds per letter.
My reaction was amazement of course and also a realization that I am not going to “bank” my voice as I had originally planned. Voice banking is the process of recording your voice saying as many words as possible to be used later for communication devices. The whole thing is not a fit for me – I don’t want to live beyond a time when I can breathe my own oxygen, eat my own food and speak my own words. I don’t want to dig my fingernails into this life, clutching until I draw blood. I DO want to go gentle into that good night.
Does that make me a coward or brave? In my brief time as a disabled person I’ve come to realize that living life from a wheelchair can be tough at times. People who choose to hang on hoping for a cure that may not come in time, who endure the many tiny indignities that accompany each day with this crazy disease, and who stay positive amidst the slow leak that is ALS – well they are heroes in my book. I just don’t think that’s me and I don’t think it takes any less resolve to NOT do the ventilator, or NOT do the communication device or NOT take any other measures that would keep me alive but not necessarily living. I think it takes strength whichever road you choose.
A family friend of my former in-laws (I’m now an outlaw) was literally yelling at me on the phone tonight to go to some website that has a cure for anything, “even cancer” as though that would help me. My son wrestled me for the phone so he could hang it up, but I was able to out-yell the guy in time to save him from Mac’s wrath – Mac who told me tonight I was a 1984 Gremlin with hover capability and no engine. When I asked him what he meant by that, he said “You’re of no practical use, but you’re really cool.”
He learned how to do the Heimlich Method tonight (I’ve been choking) and he also made me laugh my ass off right at a moment I was resolved to feel sorry for myself. I couldn’t grab my wallet with my good hand so I said “I hate my fucking hand!” and he said “Really? I'm rather partial to my fucking hand so I guess that’s where we part company.”
No one who knows me and Mac at all would think for one nanosecond that he isn’t the first thing on my mind when I ponder these (hopefully distant) future decisions. He’s also the last thing on my mind. That said, I promise to shut up and let others die however the hell they want to and all that I ask is to be afforded the same courtesy.