March, 2020
ALS robbed me of my voice. Those glib comebacks and learned reparte that drew people to my witty intelligence have been replaced by grunts corresponding to bodily functions that thankfully only my caregiver can understand. For some reason, however, my friends and family still want to engage with me. For them, here’s some pointers for communicating with a mute nonverbal me.
ALS does not always destroy mental cognition. Us pALS (people with ALS) really understand and can process what you are saying as well as we could pre-ALS. Just cause I don’t verbally respond when you ask my caregiver about how much I drool doesn’t mean I haven’t appropriately downgraded your character.
It’s best to start any conversation with a question that can take a yes or no response. Hard to answer to “How are you?” when you can’t talk. Better would be “Are you hanging in there?”
The use of yes or no questions is critical. Its impossible to tell you what I want or whether I would like one from Column A or all of Column B when I can’t talk. When I stare at you with a blank look it means you need to rephrase your question to one that can be answered yes or no. Don’t worry you’ll get the hang of it.
Because I can’t share with you orally my adventures with feeding tube surgery, I do love hearing about your life. So do tell. Love to catch up and I promise not to say anything rude, or anything at all for that matter.
You may see me with an eye gaze device which allows me to use my eyes to select letters and spell and vocalize words. This process takes a long time with a single sentence taking 2-3 minutes to complete. Often you will figure out what I am trying to say before I finish the sentence, but not always. If I’m still “typing”, it is a safe bet you haven’t got what I’m trying to tell you. I have watched folks spin through loops before I can bring them back to my intended direction.
That brings us to to the concept of context. One thing I’ve learned is that people will guess my intended statement if I stay on topic. Those that know me understand this is a great challenge. I promise to be good so I don’t lose you. The other issue is that conversational context changes rapidly and my responses are usually one or two topics behind. So if my comment makes no sense think back one or two topics and it should all become clear. Or not.
That’s about it. Just remember that I love to be with you, virtually, socially distant, or otherwise. Don’t be afraid to chat even though I can no longer talk.
Embrace The Suck 
Do you or Laurel have apple phone or computer so I can FaceTime with you and read your reply on your screen?
LikeLike
yup
LikeLike
Dear Bob,
This is so, so good. And such a brilliant and kind way to invite people into your life and to an understanding of what a pALS is going through. You have really become a hero in your own life and in the eyes of your friends and family.
Talk to you tomorrow.
Love, Carolyn
Sent from my iPad
>
LikeLiked by 1 person
Bob-FYI, sure is strange with Covid as the usual musical get togethers no longer exist. Zoom is a poor substitute-imagine you are in a Zoom group, 5-6 musicians and you call out a tune. Due to technology the host must mute everyone else which makes you the soloist. Sure, everyone can play along but they are muted. We tried letting a few play along, major delays, even some distortion. The frustrations of technology!
LikeLiked by 1 person
1- So are you hanging in there?
2- do you like getting pictures and video?
3- I am retired and painting most everyday.
Let’s try two questions and one statement about my painting.
LikeLike
Yes thanks to Saint Laurel and yes on video and pictures
LikeLike
Bob-are you up for listening to some classical music-Debussy, Ravel, Beethoven, etc.? If so I could give you some ideas
LikeLike
Feel free to send suggestions
. Been listening to Keith Jarrett play Bach French Suites on harpsichord. Amazing Touch.
LikeLike
The harpsichord gives it a totally different feel. It’s a difficult adjustment going from piano to harpsichord but when the artist gets it right, wow!
LikeLiked by 1 person
So I can now prattle away endlessly as long as I stick a few yes or no questions in there?
Good to know, Bab.
BCNU!
LikeLiked by 1 person
You have such a great writer’s voice. I’m hanging on your every word.
P.S. Be sure to tell Laurel I used two spaces after the period.
LikeLiked by 1 person
You are such a treasure. How can you write all this with your eyes? Okay, you can’t answer since that is not a yes/no answer. We will definitely visit you soon now that we know you are up for that. We will call Laurel in advance, of course. Love you much!
LikeLiked by 1 person
Hi, Bob. Stan Ketchum here. Your writing is (and you are) truly inspirational. I hear your voice as I enjoy your infamous wit and sarcasm! So glad Sally Z. turned me on to your blog. Life at the Ketchum household is probably similar to a lot of Covid-19 households, with two adult sons bunking in with us since the shut-down. The gas bill has gone down a lot, since my 11-year part-time gig at the Gilroy Planning Department ended, thanks to budget cuts. But the food bill has probably made up for that with double the adult appetites! A lot of my time is going into my stained glass hobby that has turned into my first “commission”, making two stained glass panels for a former Gilroy co-workers’ house. Oh, and a belated congratulations on Katie’s wedding! I look forward to future installments! Stan
LikeLiked by 1 person
OK, Bob, its Rick again. Check this out. St Martins sent the Chris Frantz & Tine Weymouth memoir about the Talking Heads in their prime, “Remain In Love”. (They have axes to grind with David Byrne, and basically portray him as an asshole.)
I remember pounding on you you come with me to their concert at the rec center, on the Stop Making Sense tour in ’84, just as we were graduating. One of the great concerts of my life, from one of the great touring bands in the world at the time, and YOU were with me.
Good times,
Rick
LikeLiked by 1 person
Great movie from that tour.
LikeLike
So I am finally hearing that your writing is an ongoing blog I can read to hear what’s going on with you. Your brilliance and acerbic wit burn through the screen. Keep it up, Hawn. Christine Prevetti
LikeLiked by 1 person
Love you! Thanks for being a guidepost!
LikeLike