Not being able to talk pretty much sucks. Now, over the course of my journey I’ve experienced this at different levels, like at times people haven’t been able to understand my slur, then at other times I haven’t been able to even make the slightest noise because of an inflated balloon which comes part and parcel with a tracheostomy tube. While I’m writing this it’s one of those times that I can’t make even a squeak (24/7).
So, not only is it inconvenient, not only is it a hassle, not only is it yet another human norm that I’ve been robbed of, but for someone in my physical predicaments this also creates inherent dangers. I can’t yell for help, I can’t explain how to troubleshoot an error or delicate moment, I can’t even say stop if I see someone about to bugger up. But above all, it makes it pretty hard to give carers instruction. It’s a pretty big loss.
Without much choice I have to try and overcome this, which to do this I use several different techniques, or at least I try. Sometimes these can be pretty hit and miss, and at times incredibly frustrating.
Okay, to start with I’ll just point out two things then I’ll get into it. So, my familiarity with a carer definitely makes a difference with communication (they generally know my signals, even what I‘ll typically want and when). Then, another thing to take into account, as my arms don’t work I can’t just point at something or even use hand signals. Maybe I could even use sign language if arm movement was an option, only nope, nothing like that.
Instead, and this is the easiest option for me and the one I try to rely on most, I use tiny head movements, lip reading, or even eye movements. Geez it sounds strange just writing it but this is what I do. I’ll nod in the general direction of something that I want then the carer guesses. I’ll over-enunciate a word with my lips then the carer guesses, or alternatively I’ll try to point at something with my eyes, maybe even squint or use the odd facial expression. It’s like playing charades with my face.
Then another communication technique I use quite often (well, when my computer is on), I simply type instructions on the screen. This is by far the most straightforward. Also, I have commonly used lists on my desktop, standardised sets of instructions. But I’ve also gotta say this method can really shit me at times, especially when I’m in the middle of something or watching a movie. Er, it just is what it is I suppose. Though what I do get frustrated with, some carers won’t even try to understand me, they expect me to write every single little thing.
When my computer is off, well, now this is where the real games begin – particularly on night shift. So, apart from trying to rely on my head noddy and eye winky thing, I also use a spelling board. This is simply a laminated piece of paper with big letters on it, laid out exactly the same way as a computer keyboard. Then the carer asks me which line, first, second or third, then we scan across the line by reading out the letters. I’ll then nod my head when it’s on the letter I want, then we’ll repeat this process until I’ve spelled out a word, for example P.I.S.S. However, one of the big downfalls with this, so many carers lose track of the letters I’ve given them, urrgh, repeat, repeat.
Then, finally and alternatively, carers just recite the alphabet out loud and I nod when they reach the letter I want. Blah, and again the same system is applied as with the spelling board. Only this technique feels that little bit more primary school, I mean spelling out letters, bloody hell. Oh, and again gees this can be tedious at times.
Gotta do what you’ve gotta do, hey!
But shit it would be easier being able to just talk – again!!