Imagine, being fully aware of all what is going on around you, but not being able to move or say anything! We all had those nightmares where something very scary is happening to us and we want to move away or yell out but we just cannot. Your limbs would just not move. Words do not come out no matter how hard you try. Well, been there, done that. I lived those nightmares as a reality, completely paralyzed as the world keeps on turning as if nothing happened.
Nurses were walking by, chatting away like everything is perfectly normal. “Can´t they see that I want to say something?” The inner me is screaming out loud, the outer me is lying there still. I feel my limbs, they weigh like a ton. Unquestionably, I have no power to move them. Not even my tiny fingers. Some of my senses start to go numb. Time is not of the essence anymore as I lay there staring at the ceiling not realizing that have I was trapped, inside myself, and that I would remain like this for the rest of my life.
You could say that life has been unfair to me, stripping me off all control of my body. Well, I don´t have time to think about that. I want to live my life, don´t want just to survive, I want to enjoy life at the fullest just like before the stroke. It will require from me to accept things as they are and then molding them into the right shape for me. It will also require for me to learn some new skills and a different way to communicate. My new life is not going to be an ordinary life, but then again I never planned to live an ordinary life.
I may not be able to speak but to compensate some other senses of mine have improved. I 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. Also got some little bit of physical movement but will tell about those in another blog.
So, I can´t move my tongue, and that makes it impossible for me to use it to talk, but that isn’t the end of the world. There are many different ways to communicate. My way is to talk with my eyes. I like that because the person who is talking with me has to make a serious eye contact with me. How a person uses his/her eyes already tells so much.
How do I do that you may ask, well imagine yourself a Plexiglas see through board with all the letters of the alphabet on it. The person talking with me would hold this board up between the two of us, I look at certain letter and she/he says it out loud and as we go on.With the letters, they start spelling out the words and of course the sentences. Family, friends and assistants who already know the position of the letters don´t use this board anymore. They would spell the words out just by looking at the position of my eyes and guessing the letters. If they get the letter right, I move on to the next letter. If they get it wrong, I would shake my head and continue staring in the same direction. Saying all the wrong and right letters out loud in a strange sequence sounds like some strange language. It looks weird to people who don´t understand what is going on. Many times people asked us; “what language do you speak?” One great thing about the spelling is that I can tell the speller anything I want in presence of strangers, and they would not understand a word! . The person who came up with this chart is a genius and he/she deserves a Nobel Prize.
One of the most common questions I get is: “how do you use a computer if you cannot move?” Well, by medical terms I am 95% paralyzed. I can blink my eyes; I can chew a little, I can move my arms and legs a little and I can move my neck a little. You would still ask; “but how do you do it with so little movement?” My computer has a program called “the Grid.” Mounted on my screen is a small infrared box (looks like a webcam). A small 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 your hand held mouse. On my screen, I have a keyboard and by just going to the letters I spell the words just like anyone else would do on any PC. I use a computer daily for it is a very important way of communication for me. I write to my mother all the time and to Henning when he is at work. It is great because I can keep contact with all my friends where ever they are. And not to forget about this blog and a new book that I am writing together with a ghost writer.
Several years ago I was approached by the University of Tampere (Finland) to take part of the EU funded high technology COGAIN-network. The purpose of COGAIN-network is to develop an eye tracking device for people who have a speech impediment and are also immobilized. I was honored to take part with this research even though It was just to be a “guinea pig”. Last year I got a request from the “TIKOTEEKKI” (FAIDD, stands for Finnish Association on Intellectual and Developmental Disabilities), to take part with their seminar about communication for people with complex communication needs. I had the pleasure and honor to open the seminar with a speech about the importance of communication technology. Next to communication I also give life experience and inspirational speeches.
The help of technology has been enormous in my life! Computer has changed my life completely. It has enabled me to keep up with the world all by myself. Like all invention, it is a blessing if used in a proper way and for good cause. One of these motives being to communicate with others. It makes me wonder; why are there so many problems in our societies these days. All problems that can be very simply solved with a little more communication. It has never been easier to talk from one to another as it is now. Communication borders are at this moment in time almost nonexistent. So why should you drown yourself silently in a pool of self-pity? Open yourself up, talk, listen, and communicate. Live your life at the fullest. Take this from a paralyzed blonde that cannot speak; “no matter in what kind of situation you are in, you are blessed with choice of what attitude you are going to have”, “choose the right one”