One thing what was at first horrible after that stroke but after some years I got used to was how I had to learn to trust complete strangers just like that. No chance to practice some fashionable and amusing trust games as they do in camps and workplaces, but straight into the fire.

Trust is not a little part of my life it is a huge part. That my assistants do not burn my mouth with hot food, let me fall while lifting me from bed to chair, or let me slip in the pool, etc.

In a way, you can say that you trust this person with your whole life. Being home alone with this person for hours, or going with this person to city etc. I still remember that horror when assistant who was in her thoughts while we were walking in downtown not paying attention to cars and one car driving straight at me!

I can honestly say that being in this state has given me a very different look at life from the biggest to the minutest facets.

After the stroke, I was fed by a tube that was inserted in my stomach. That was horrible, feeding time was one of the most depressing moments of the day. It reminded a few times a day of the extreme severity of my situation.

In the rehab, the therapist noticed that I did have some jaw movement. It was very little. However, she thought that even though I cannot move my tongue, but can chew. I could learn how to eat in a slightly different way.

At first I had to practice eating by chewing candy and fruits wrapped up in a cotton cloth, (this was to prevent the food to slide down my windpipe). Part of the cloth would stay out of my mouth and then removed out of my mouth when done. It 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 did not.

Then it was time to start eating by myself again.

Since I cannot develop the full power to chew, my food need to be somewhat soft and cut into small pieces. The amount of food that goes into my mouth should be of a certain quantity. It needs to be that way because the tongue cannot push the food around in the mouth (like everybody else do unconsciously), to the teeth to chew and down the throat to swallow. Needless to say is that my food cannot be too dry or too hard either.

Now 20 years later I am still in the process of learning how to eat. Now and then, I still give assistants frightening moments when a little piece of food down my throat unintentionally and I start to choke.

At night after shower, the assistant puts me lying on my back to bed. I lie like this for a while watching some TV until it is time to go to sleep. To fall asleep I need to be in the fetus position (there are just two positions for me to sleep, fetus and on my back). I ask my husband to bend me and put me in this position pulling my shoulder out from under the weight of my body and with a cushion against my back to hold my body. Then I check if my neck is in a relaxed and comfortable position, same with my arms and hands, and my knees ankles.

It is better to be lying as comfortable as possible with everything in the right position. A small thing that you barely feel gets worse and worse by the minute and become torture (Imagine fingers bending to a wrong direction like you had no joints as an owl, but you do!). In the middle of the night when my body gets tired of lying in that position, I have to wake my husband up so he can change my position and so on.

To be continued…

Kati