November, 2020
As I’ve mentioned, this no talking thing really has me embracing the suck. Although my eye tracker device really helps when it’s working, sometimes the sunlight in the room fouls up the tracking laser or you don’t want to bother with the device or it isn’t installed or you just want to scream no matter what your palliative care doctor told you about mindfulness. During those times my long suffering caregivers have to figure out what is meant by my guttural assertions. For them, and for your amusement I’ve compiled the following grunt to english dictionary.
erm
This refers to something having to do with my arms. One or both of them have wedged themselves between my body and armrest or are in that falling asleep stage where tingling has given way to pain. Or maybe they just need to be stretched.
meh
This often means my legs (really, my feet) need to be repositioned on the wheelchair foot rests. It could also mean my something or other needs something or other but I couldn’t get the second something or other into “words”.
meh
This usually means music needs to be turned on. It could also be a misunderstood form of bee or boo (see below). Or not.
meh
This commonly means move my chair out of the sunlit glare so I can use my eye tracker device. Or not.
meh
Or not.
bee
Door Number One needs attention.
Boo
Door Number Two is knocking. Sometimes pronounced moo.
Uncontrolled Screaming
Usually means frustration over device eye tracker functionality or lack thereof, other device performance shortfall, or listener inability to understand what is meant by meh. Or it could just mean I’m having a temper tantrum.
Out of respect for you the above does not include low level moans, hacks, and other guttural outbursts which are more related to unconsummated coughing than to anything remotely coherent. Out of further respect for you I’ll end things right here with the fond wish that the above list provides to my caregivers unambiguous guidance to my increasingly incomprehensible vocalizations.
Some business. May not post next week so don’t freak if you don’t see anything. Or rejoice because you’ve been spared. Also, if you are curious about anything I might be going through, just ask and I’ll see if I can write it up. Which is really a nice way of saying my segments are going to become increasingly inane unless we both do something quick. Last, be well and stay negative and do what you can to stop the spread.
Embrace The Suck 
Probably not much consolation, but you convey your excruciating frustration and pain exceedingly well. And it’s okay that it rips my heart out. Love, love, love, Nancy
LikeLiked by 2 people
Bob, thanks for putting the “suck” out there…it helps to know something about how you are and also to be able to see that no matter what the skin sack is doing, Bob is still there inside being Bob…wish I could see you amigo, but until then know that I’m reading everything you can spit out and am grateful to know you. As Bob and Ray would say…
“Write if you get work.”
Kurt
LikeLiked by 1 person
We enjoy your continued sense of humor and sarcasim and are in awe of your continued fight to maintain some sort of “normalcy” in your “new normal!” Having said this, it also breaks our hearts! We continue to send vibes of strength and love to you, Laurel and the rest of your family.
With love – Yvonne and Tom
LikeLiked by 1 person
You are a person of strength and wisdom even when you don’t believe it. While I wish there was a way to take away your frustration and suffering (that would be wonderful), your humor and sense of perspective is priceless even for us mere mortals. Thinking of and praying for you and your family often.
John L.
LikeLiked by 1 person
If they could isolate its source, I’d like the medical establishment to clone your resilience. They could pitch in your sense of humor, too. I know the word is horribly overused, but you are truly awesome.
LikeLiked by 1 person
Bob, another fun-loving piece that was hilarious. Once I got to the second meeting for meh, I had anticipated several more meanings to come. It is a sign of an intellectual in the best of the anti-intellectual tradition. It is a delight to watch your mind play with various moments in life – Never quite sure if they arose in the before-now or in the now now. Transcendentally, perhaps we should try by one brain beside the other and see if we can communicate with words and without words. Papa Steve Minneapolis OK
LikeLiked by 1 person
Bob,
Amazingly as you discuss your difficulties and challenges, you continue to do so with the wit, humor and sarcasm we all know and love about you. You are an inspiration. Please know that we think of you and Laurel often and send our love.
Rhonda
LikeLike
Hey Bob,
I’m sorry to hear that things are getting rougher for you. I imagine your blog will be referenced in future research papers.
I had a hard fall last week, earning four stitches above my left eye. Tuesday I had oral surgery to biopsy a suspected cyst in my palette, raising the total suture count to 12. Minor woes commensurate with my age (66).
Will you see Katie for Thanksgiving? We will see Colin of course, as we do every day. We disinvited my sister and don’t know if Darren will attend, although I think he will. He never commits to anything with us.
I’ve borrowed the entire Remembrance of Earth’s Past trilogy based on your recommendation. Long books. Currently I’m working on a BLM/anti-racism reading list and learning a lot. Salman Rushdie’s novel Quichotte, which I enjoyed, is based on Don Quixote, so I plan to re-read that tome.
Give the suck a hug for me.
Love you,
Nelson
LikeLike
Bob – Your blog reflects a high level of activity in your conscious mind and the somewhat acidic content of your sense of humor. Where else do your thoughts wander? You’ve had a lot of varied interests – do you solve old half-forgotten problems or rethink past projects? Do you follow current news? Does your stream of consciousness stick to the “real world” as sordid as that can be, or have you invented a mythic retreat?
LikeLiked by 1 person
Hi Bob, I love reading this post. It’s helpful to know and understand what you’re going through, feeling, and experiencing. I’m so happy you can continue to communicate with the world through Tobii. I look forward to more posts from you. Embrace the Suck! God bless.
LikeLiked by 1 person