Paralyzed! When people hear the word paralyzed, they commonly assume that you cannot move your legs and that you don´t feel them either. In other words, muscles are dead, and you cannot move them or feel them. But there are many different definitions of being paralyzed. Every single case is different.
Mine is as such; my muscles can move, but I just cannot make them move. Let me illustrate it like this. Imagine that you are in a tunnel, and there has been a cave-in. The sector where you are is intact, but you cannot get out. And the only link between you and the outside world is a tiny hole. So tiny that only a mouse can squeeze through. I am trapped in this tunnel, and the only movements that I have are this mouse squeezing through it.
I am in medical terms 95% paralyzed. I do have certain movements, just enough to make me be more than a vegetable. I can communicate, and I can work on the computer with a special program.
Tongue; I cannot speak because orders from the brain don’t go fast enough to muscles. The tongue is also a muscle, so it just does not move enough. Sounds do come out even very loud ones. Especially when, for example, somebody scares me my muscles react, and some scream comes out without thinking.
Eyes; I have very strong muscles in the eyes actually. Sounds funny but I remember when I went to work in the post office one Christmas time. My job was to sort Christmas cards to boxes to different shelves each with different postal code, different city, and different country. That shelve was not wide, and I had to sort them FAST, all the time looking up, down, left and right much like with spelling today. My God, the muscles of my eyes always hurt after a day of sorting cards! Not anymore.
Eating; after the stroke, I was fed by tubes. That was HORRIBLE for me who enjoyed food. I was crying from the thought that I may never again sink my teeth in a juicy, greasy hamburger or let my tongue linger around an exquisite bite of pizza. (That was sure worth crying over. I even cried when I realized that I cannot ever wear high heels again) both have been proven wrong. I first practiced eating by chewing candy and fruits wrapped up in a cotton cloth. It would prevent the food to slide down the windpipe. Part of the cloth would stay out of my mouth and then removed out of my mouth when done. This went on for about a month and after that process, an X-ray had to be made just to see if by accident the food did not go down the windpipe and into my lungs. Luckily it didn’t.
Since I cannot develop the full power to chew with all my strength everything needs to be cut into small pieces. It needs to be that way because the tongue cannot push the food around in the mouth and down the teeth like everybody else do unconsciously (little moves you have while eating that you do not even realize you are doing) The food cannot be too dry or too hard either. Liquids are extremely difficult to swallow because they go so fast down the throat. In the beginning, they would mix the liquids with tasteless powder so they can become thicker and don’t go down the throat so easily. I am still after 18 years in the process of learning to eat. Now and then I still give assistants frightening moments when I start to choke. Just a few weeks ago I started to choke on a little piece of meat (hamburger) that was just a bit too big. Henning had to put on the Heimlich maneuver on me so I could enjoy the rest of my burger.
Arms and legs; I can pull my arms a little. Just up and down. But it is very hard because I don’t fight against just gravity but also muscle stiffness. It is like having a ten-kilo dumbbell wrapped to your arm. I can pull my legs front and back but very slowly. Just like having an iron ball chained to your legs.
Muscles; the one thing I have to deal with all the time is the muscle spasticity. You cannot imagine how unbelievably strong the muscles are and how hard they can get when they contract. These unpredictable contractions are a blessing somehow for they probably are one of the main reasons why my muscles have not withered or wasted away although I’ve sat in a chair for so long. I am able to help my aid when she lifts my legs by tensing my muscles; this makes me a lot of lighters. At times, my muscles ache at bedtime after my daily exercises. My Muscles shake from tiredness. This doesn’t bother me since it’s a healthy kind of pain. At least I know that I have given my muscles a good workout that day.
Senses; my skin has become almost oversensitive to touch. Nurses and aides had to learn how to handle me. My clothes have to be from materials that feel good on the skin especially because I am unable to change my position. The best of sheets can feel like rough linen. I feel everything very well. If a fly walking on my skin and it would tickle me mercilessly.
Facial expressions; in the beginning, the doctors said that I will not get any facial expression. But I worked hard with one of the best speech therapists in Europe and I got wrinkles, dimples, and expressions back. Not many women try to get wrinkles! I can smile, laugh and cry. You can see when I am happy, sad or mad.
Hearing; Nowadays I hear extremely well. I guess because I cannot just go and look what made that sound. When I am sitting in the office writing on the PC, I can still follow everything that is going on in the house exactly just by the noises.
Memory; I noticed almost right after the stroke that my memory became so good. Since I could not talk or use any other kind of aid to communicate (it would take so much time and patience to go through the motions to get a point across) I realized that the easiest way was to just remember everything by heart. All details of every schedule. TV programs schedule what time, what channel. And then it was simple just point with my eyes.
Brain; the brain is a funky thing. It is a thinking organ that learns and grows by interacting. Mental stimulation improves brain function and protects against cognitive decline just like does physical exercise.
The human brain is able constantly to adapt and rewire itself. Even in old age, it can grow new neurons. When I had stroke doctors said that after ten years game is over, and, nothing can get better but nowadays they know that there is no expiration date. I should know when after 18 years new movements just appear out of nowhere!
Most age-related losses in memory or motor skills simply result from inactivity and a lack of mental exercise and stimulation. In other words, use it or lose it. I am a living proof of this. I rely exclusively on my brain.
Now that I have lost movement I many times find myself in awe marveling how specified small movements human is capable of and don’t realize they have, don’t understand and don’t appreciate!
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 over these things. 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 world, this life with my husband, family, friends and you all.
Thanks for being there.