Imagine feeling like you are getting weaker and weaker, losing all energy; you cannot even raise your arms. Suddenly your limbs stiffen, your legs stretch out while your arms and upper body curl up. You can hardly catch your breath, you try to scream, but you cannot make the words come out. You feel like you are drowning inside your body. Imagine the anxiety.
You are aware of what is going on, but you cannot help yourself. You see and hear your mother yelling for help. Doctors and nurses were doing their best to keep you alive. You see this, but you also listen to what they are saying; they don't understand what is happening to you, they don't know what to do. Imagine the desperation.
You cannot move at all. You are completely paralyzed, trapped inside your body. You want to scream, but not a sound comes out. A total loss of control over my muscles including the tongue. The only thing you have control over are your eyes. All I could do is answer 'yes' or 'no' by blinking 'once' or 'twice.'
The number one priority at the rehab was to find a way for me to be able to communicate.
One can only imagine how my face lit up when the therapist put a Plexiglas board with all the letters of the alphabet on it in front of me and said; 'let's have a conversation.' I looked at a letter, and she said it out loud and so on forming words and of course then sentences. I could communicate again; you cannot imagine the relief.
The collective thought about a not moving tongue is the speaking part. However, the tongue is an instrumental part of how we eat. It pushes the food underneath your teeth to masticate, and it pushes it to the back of your mouth so it can slide down your throat to your tummy. In other words; a not moving tongue does not just mean that you cannot talk, it also means that you cannot eat.
At first, after the stroke, I was fed by a tube. Later on, I was fed soft blended (tasteless) food, the same as baby food. One thing that the therapists noticed when I was in rehab was that I could move my jaw a little. They had an idea that if the food was not too big, too hard and moist, enough I could let it slide in between my teeth. After masticating, I could let it slide to my throat and let it slip down.
I had to learn how to eat.
First I practiced eating by chewing candy and fruits wrapped up in a cotton cloth. Part of the fabric would stay out of my mouth (to prevent the food to slide down the windpipe) and then removed out of my mouth when done. After a month of practicing this technique and seeing if it works an X-ray of my lungs to see if food was sliding down the windpipe and into my lungs. Thank God that that was not the case. I love eating delicious food, and I cannot imagine a life of being fed by a tube and not enjoying the flavors that make life worth living.
The first muscles to react after the stroke was my neck muscles and with practice at the rehab I got them to work almost entirely. I can't hold my head completely straight, hold it entirely still for an extended period nor move it as smoothly as everyone else. Nevertheless, it is a blessing because it plays a crucial part in how I work with the computer and keep contact with the outer world.
How do you use a computer if you cannot move?
My computer has a software called 'the Grid'. Mounted on my monitor is a small infrared box (looks like a webcam). A little metallic kind of sticker is set to my forehead (this is my mouse). The infrared box catches the reflection of the sticker and moves the arrow on the screen in the same way you would move the arrow with a handheld mouse. I have a keyboard on my screen and by just going to the letters I spell the words just like anyone else would do on their phones or tablets.
Some of my senses such as hearing and smelling have improved. My brain has learned to focus more on sounds and smells. I also have now a sharper sense of observation. I notice little things and read manners and gestures pretty well. I can sense when people tell the truth or when they are lying, I can see who is sincere and who is fake. My memory has gotten so much better. I remember even the most meaningless things in details.
Sometimes I think how much easier life could be if I could just speak or if I could at least move my hands and do some things for myself. But I do not dwell on this stuff. I rather sit in my chair and enjoy the beauty of life. Savor the wonder of how it all connects. Relish the fact that I still can share this life with my husband, family, friends, my dog 'Happy' and the rest of the world!