Since many people are spending time with family members today (Thanksgiving — US), some of whom you may disagree, I thought it would be good to write a post about every detail of my current and past political views. Just joking. I’m sure you are tired of reading about all the clashes between liberals and conservatives. But I do want to write about how much it sucks when you can’t communicate.
Do you remember that famous line — “What we’ve got here is a failure to communicate” — from one of my favorite films, Cool Hand Luke?
I always think of that line when I have trouble getting my point across, although obviously not because I’m feuding with a hard ass warden. No, it’s more that I think of the line as a metaphor which pertains to my trouble communicating and the poor communication in our society as a whole. The inability to communicate with each other while failing to make any kind of progress is obviously an issue in the US and around the world right now, but it’s also a problem I’ve dealt with in my personal life. And I don’t mean I have been forced to live with people who have strong opposing political views, although I’m sure there are many people in that exact situation with the current political landscape what it is today.
For the last three years I’ve been unable to speak. At times I have spoken short sentences, but for the most part, particularly during the 18 month stretch from January 2015 to July 2016, I was unable to speak at all. With this disability came a frantic search for alternative, nonverbal forms of communication. I have used a small whiteboard with letters to spell out words, I’ve traced words on people’s hands, and I’ve essentially developed my own sign language to communicate with my friends, family, and caregivers.
No form of communication is perfect or even guaranteed to be effective, and my nonverbal communication has been especially flawed. But it’s all I have. It has, quite often, left me and the people around me exasperated with each other while trying to play a twisted and cruel game of Charades or Hang Man or Wheel of Fortune or any number of games that share similarities to how I communicate. These games are meant to be fun, and as many people know, trying to communicate something that isn’t being received is not fun; it is maddening, even heartbreaking.
This is to say that it is incredibly frustrating when you are trying to communicate and it feels like you’re just wasting your energy. I frequently find myself staring at the person I’m communicating with, thoroughly bothered, as if they should be able to read my mind, or more realistically, automatically know what my makeshift communication means. This is just instinctively how I react. To me it’s as if I’m talking, so how can someone not understand my words? We both speak the same language — English — but I guess I forget that I’m not actually speaking, I’m gesturing. So I probably come off as an asshole sometimes, at least by my body language, but it’s only because I’m trying so hard to communicate and only exhausting myself.
This is something that people with limited energy, particularly those with illnesses like mine, know all too well. It is something that we experience while doing the simplest tasks. So imagine how it feels to try to make a significant change in the world. It’s nearly impossible, if not entirely so. With the US and many other countries so divided at the moment, I’m sure everyone can relate to this in some degree. I imagine everybody has been involved in a political argument, either online or in person, during the last year or two. And seeing how this is the first holiday season with a new president in the US, I’m sure there will be plenty of arguments to come. I certainly have had my share of these disagreements. In doing so I felt a familiar sort of frustration, as if what I said was not registering with whomever my comments were directed towards. In some ways this is just how it goes, especially right now. We have to pick our battles wisely and surrender to the fact that our message isn’t always, or even most often, going to be understood. In the form of political debate, we may not change anybody’s mind. And that’s okay. There is only so much that we can do and control. One thing we can control, however, is how we react to the frustration we feel in these situations.
A few days ago I was trying to ask my caregiver to bring me my daily medications. It had nothing to do with politics, thankfully, but it was a prime example of how easy miscommunication can happen.
Because I couldn’t speak, I used a hand signal for “pills” that I’ve been using for at least two years now. My caregiver hasn’t been working with me that long, but she has certainly been here long enough that the signal should be engrained in her mind. And if nothing else, there is a cheat sheet nearby with my hand signals written on it. But for one reason or another all of these efforts seemed to break down and she couldn’t figure out what I wanted. This type of thing has happened countless times during my time as an aphonic person, yet it hasn’t gotten easier. Over the years I have tried and failed to develop a zen-like mentality that allows me to transcend these cringeworthy moments. Instead, I usually resort to showing my caregiver a different hand signal which means, “Please step out of the room,” and no, it’s not my middle finger. Then, once she has vacated the area, I reach for the lightest, cheapest object I can find — preferably one that will make a satisfying crunch when driven into a hard surface. Then, finally, channeling all of my rage and frustration, I fling it at the wall.
A film crew recently asked one of my caregivers “Where does he get the strength to throw things?” This is a valid question. After all, I can’t even hold a glass of water, how the hell can I throw something across the room? Well, it’s a very strategic (and cathartic) process. I’ve learned through trial and error that throwing something light is the only option. I can’t throw a glass or, say, a book across the room. But I can throw sunglasses or pens or pill bottle caps. Also, these cathartic outbursts do not go unpunished. I use valuable energy that puts me at a further deficit as I go about the rest of my day trying to take care of my needs. Not to mention, the arm I used to throw is always rendered essentially useless for the next couple days. And still, to be honest, it’s usually worth the pain.
After the latest failure to communicate with my caregiver, I moved on and figured out a way to get my needs met, but by no means was it easy or did it come without stress. And therein lies the metaphor for the current political discourse we as a society are subjecting each other to on a daily basis. It’s stressful and difficult and rarely is it constructive, but we will keep moving forward and we will figure out a way to get our needs met.
I’m not going to sugar coat anything and tell you to be grateful for this or that, but I do have some advice. If you find yourself arguing with a relative over the state of the country this holiday season, if you can, try to let cooler heads prevail. It is wiser to maintain your sanity than to lose your shit in front of your entire family. And if you must let your anger out, like me, wait until you’re alone, find the cheapest breakable item in the room, and then hurl it at the wall.
A few things before we part:
1. Thank you so much for reading! This is my 100th post, so hey, that’s something!
2. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!
3. If you would like to donate to support this blog I would be equally grateful!
17 thoughts on “What We‘ve got Here is a Failure to Communicate”
You never cease to amaze me Jamie. You are so readable. I wonder what you would be doing now if you were not bedridden. Watch out Mr. Trump. I wish you well. You so deserve it.
Thank you! That’s such a wonderful compliment. Thanks for your kindness.
I missed seeing posts from you! I was just thinking the other day how I hope you are okay.
I would have probably given the caregiver the finger 😀
Aw thanks for thinking of me. I’m hanging in there. Hope you are too!
I’m still going. Always going. 😀
I have a friend with a bad case of CFS. She also had a brain tumor, which was operated on, and, in the process, she had a stroke (they had been warned, but still…).
Calling her at the nursing home is one of my hardest tasks. Physically exhausting (and I’ve been there once – a most exhausting hour). This has been going on for months.
About half her words are not what she wants them to be. The progress has been infinitesimally slow. She desperately wants to be anywhere else, even though she needs to be there. Her husband is beyond exhausted, has missed a lot of work, and has their pets to care for. It’s cold here now – and the gas company turned their heat off because of a leak, and took a very long time to come turn it back on again.
The stuff just piles on by the sh*tload, as you know.
I am very dysfunctional – but I am always conscious of how much worse it could be. And I can write a bit most days, and comment like this, which keeps me from being bored out of my mind (my friend is beyond bored!).
And there is no end in sight for us, no improvement. It’s a cruel world we can see and not be in.
But I still think the worst part is that I thought I’d be able to work myself out of anything that happened to me – drive, you know, to overcome obstacles with persistence and hard work. Taking care of other people would be my lot in life, and I could do that.
I’m not sure I can say that I’m grateful to be alive. But I know that people like you and my friend and I will keep trying as long as we can.
Oh wow that’s heartbreaking. Your friend sounds like quite a fighter. I guess we all are. Thanks for sharing that.
She’s still here – I hope she recovers more functionality, because it is very limiting for her right now. She can’t tell, but I see signs of progress when I talk to her – but they are much smaller than they should be.
Let me start from the bottom:
Congratz on your 100th post.
Yes, I find throwing my pens or pencils against the wall very cathartic. I use such small objects because it makes the least bit of sound, so nobody but me really knows what is going on in the room I am in. And pens don’t break (unlike heavier objects).
Thanks for reminding us that not everyone is able to do/ have what we take so easily for granted…
It is so interesting (from a linguistics/ psychology point of view) how you can say something to person A and they will know exactly what you mean mid-sentence, but you can explain thoroughly something for a long time to person B and they still won’t understand you.
Thanks! I like to say I communicate best with people who are exceptional at deductive reasoning. Few are though.
So glad to be reading a blog from you! Congrats on the 100th post 🙂
And having a family that broadly represents the political spectrum, these days are always interesting. Luckily, living in/around Baltimore, we’ve got enough close to home issues that will most likely be the center of discussion today – though I’ll certainly keep the advice in mind (and use my Woo-sah moments).
Haha I bet. And I don’t know if you have a large family but that always makes things interesting too. Happy thanksgiving!
Thank you for your insightful thoughts.
My pleasure. Thanks Sue!
Also, that thing where you successfully communicate and they get it … But then… They FORGET!? And they’re asking again and again. “We just did this yesterday!” UGH!! Anyway… Happy Thanksgiving.
Oh yeah, that’s the worst. I always feel like a tyrant when I get mad about that but it’s also like, come on!
Great post and congrats on 100! Very awesome👍 This topic is very relatable to me but for a slightly different reason. I no longer correct people or argue my point, the energy isn’t worth it. It’s the weirdest thing to sit quietly knowing some is wrong but also knowing your energy is too precious to spare. That and my voice is quiet and people are forever telling me they can’t hear me, which again, no, I’m not wasting my energy. Such a shift in reality but at the end of the day I can still communicate on some level and that’s good enough for me. Hoping this finds you doing best as possible.