I allowed myself to use the cartoon above with Kate Allatt’s permission. She was using that image in her slides, so people could understand the situation better. I had a very similar story to hers, using the letter board and I needed a good image to represent that☝️👌.
My father made letter board at home just after a few days. It was very simple with just letters A to Z in four separate rows. There was 4 rows:
- Row 1: A B C D E F
- Row 2: G H I J K L
- Row 3: M N O P Q R
- Row 4: S T U V W X Y Z
They would point at a row first, when it had the letter I wanted-I would blink once for YES, then for a specific letter I would blink again to let them know that was the letter I wanted, and then they would write it down on a notepad. This way I could spell out anything I wanted to communicate and they could read what I was trying to say. Anytime a sentence was said by by family, like “are you cold?” I would blink once for YES and twice for NO. The ability to roll my eyes was very useful too 🙄, in this way I could easily let Mr P know that he was being a moron haha😂🙉, or anytime I heard something I thought was ridiculous! I didn’t really use the letter board with anybody else, so nurses, doctors and any other people would talk and I was just listening…sometimes they would just talk like I wasn’t even there 🤦🏻♀️ that was very frustrating…
First time I used the board with Mr P, I was trying to spell out TOO WARM, not thinking that there could be a problem. Mr P starts pointing at the rows and I blink when his finger reaches the last row, because that’s where letter T is. It wasn’t the involuntary blink that we naturally make every few seconds but an exaggerated one. I blink again when he points to letter T and so on…until I spell T-O-O, here I pause because I realise that there’s no way of communicating that this word ends and I want to spell another one 🙉. Mr P looks at me all confused, so I decide to keep going. He ends up with T-O-O-W on the notepad…looks at me smiling “Klaudia you must be going crazy, there’s no such word”…at that moment I’m fuming inside 😤. I’m thinking what do I do now?! This took about an hour of me repeating blinking and rolling my eyes. Mr P finally figured it out. Oh my God! After this the word “space” was added at the bottom of the letter board-I made sure of that! I thought I was going to kill him, when I saw him making the same mistake over and over again🙄, that wasn’t making any sense…I was screaming inside😡! If only I could tell him then and there that I was too warm🥵, so they could open the window a little for some fresh air. Something that should take like 3 seconds took nearly an hour 🤦🏻♀️. Few months later this situation was the main subject for us all making jokes 😂, but I can tell you now it wasn’t so funny to me at the time…Kate Allatt had a very similar experience (hence the cartoon above), when trying to spell out LEG CRAMP to her husband and he kept getting L-E-G-C, which wasn’t making any sense, making Kate look like she was insane. When we met we laughed about it, we could so relate to one another. So as you can tell the word SPACE or END WORD are essential and need to be included on a letter board, when commutating with a locked-in person…that one simple word can make life so much easier! I’ve come across some brilliant communication boards that would already have phrases that are commonly used like “That’s not what I meant”, “need”, “and” etc., which could save so much time. My board was homemade and very simple with just letters and then SPACE of course 😂 so it was taking me ages to spell out a sentence…I’m so glad I can talk because I’m a huge talker (I rarely stop 🙊), and that time being locked-in was unimaginable…to be honest I don’t want to remember that!
If you’re looking after someone with a locked in syndrome, please take these things into account for improved communication. Communication is so important! I’m now speaking for people that don’t have a voice, and that letter board is their only option…👁🤐Treat them how you would like to be treated, because with this type of injury specifically we know that the brain cognition isn’t even a tiny bit affected and I know when you’re a locked in patient you need someone to be your voice, support, advocate..Nothing annoyed me more than people around me treating me like I was different, or like an egg that you don’t want to drop because you’re afraid it’ll fall and crack-tiptoeing around…I wished at the time that I could scream “I AM STILL ME”, just needed that extra support and for someone to be my voice, while I don’t have it. If you’re reading this and you’re still very locked in, believe that you will get your voice back! Don’t lose hope, I was told I would never talk again, like many other survivors, yet today they’re motivational speakers and never shut up🤭😂! I also know of survivors who never got their voice back but are still very successful, writing books, blogs with eye-gaze technology, using their eyes to communicate with the world. They found a way of using their voice even if they don’t physically have it, and that’s brave and inspirational! Some people have a voice and don’t put it to use-staying quiet🤐, while some wish they did have a voice, and even though they are non-verbal they still manage to make a change in many lives…
🦋 “The way I see it, if you want the rainbow, you gotta put up with the rain…” 🦋