I first thought of this the moment I heard Meira say it. She told me that we were going to, “Bank my voice.” I was very familiar with what that is and why it is done. I just couldn’t believe that it’s really gotten that far for me! She told me that it may not be necessary but we should do it, “Just in case.”
That kind of struck me. Is it really like that for me?! I remember watching A Football Life about Steve Gleason. It was talking about when he was going to scale Machu Picchu with his wife, friend, and another person newly diagnosed with ALS. I think that Steve Gleason had already gotten the voice control apparatus on his wheelchair because he could no longer speak. I remember seeing the other guy who was going on the trip who was newly diagnosed and he could still speak but it sounded odd; it was the beginning of not being able to speak.
I also thought of Stephen Hawking and I remember seeing The Theory of Everything. The thing I think about most whenever I think of that movie is when he was addressing a college class. A girl in the front row dropped her pen. In the movie he sees the pen, gets up out of his wheelchair, and gets it. I think about doing that all of the time, especially now because I drop everything now.
I was thinking about both of these men as Meira handed me the list of things for me to read. I was completely reminded of myself with her organized white binders. I used to do that when I taught. I did give her a tip for future patients. I told her to print them larger because some of the difficulty I was having was because the print was too small for me to see.
I guess I have been thinking about this appointment since Tuesday and it is a little startling. That’s how it is now?! I can only handle thinking about these big changes in little bits. I thought about reading children’s books for my future grandkids on audio but I think the time for that seems to have passed. Some days I speak normally but it seems there is just a hint of, “NOT normal.” When my voice is, “NOT normal,” there are only a few people who I speak to. It is a very short list and only consists of three people. My Mom, Sean, and my best friend, Ami. All of them are patient as I struggle to form the words in and get them out of my mouth. It was gradual and I haven’t really thought about it. It’s been a long time that Sean would order takeout for us and my Mom would speak to doctor’s offices for me. I start my virtual appointments with Meira for speech pathology on December 7th and I wonder how that will go? I have 10 hour long appointments scheduled.