We certainly do not live an ordinary life, still we try to live it as normal as possible.
I am completely depended on another person. I have assistants working with me for most of the day doing all from the smallest chores to the biggest. It is not easy to find a good assistant. It is in a way an easy job, but in another way it is not your regular job. It seems like a job that anybody can do, but it is far from that. It requires a combination of character trades that are not easy to find and besides that, we have to be in harmony because we need to understand each other in order to communicate smoothly. For the assistant, it may be just work, but for me it is life, and finding the right balance in between that can be very difficult.
My days usually starts when the assistant comes in in the morning. Normally I am hungry at this moment so we start by eating something; this is usually a porridge, not much though. Just a half portion. Next thing we do is I choose what I am going to be wearing that day. Something that may vary depending the weather. That actually sounds wrong. I still can not wear warm enough clothes because look comes first. And practical and comfortable clothes you can just forget. I’m shallow I know. After this, we do the hygienic part. The assistant would be washing my body and brushing my teeth in bed. Much like a nurse would do in the hospital. When this is done the assistant dresses me up.
This also happens in bed and what an enjoyment park- experience it is.
Now it is time to get out of bed. The assistant lifts me up and puts me into my wheelchair. Then she fixes me in my chair putting my legs, my arms and my shoulders in the right position so I am comfortable and stable. Following this she arranges my clothes put on the accessories that matches what I am wearing combs my hair. So I look presentable. I do this every day no matter if I am going out or not. I cannot help it; it is my way to face life with the best attitude possible.
If it is a day that I do not have to go out I go to my computer to work which is writing or translating blogs, articles and scripts for my book. This what I do for the most of the day but it is certainly not all I do. I also collect recipes, make scrap books (albums), interact with my friends and strangers, and reply to mails and messages from readers that contact me from all over the world. All this I do on my computer.
The computer is a huge part of my life; it is the only thing, which I can use on my own with no need of any assistance. It is my only way to communicate and keep in touch with my friends. It helps this paralyzed woman to have the world at her fingertips (or should I say eyeballs). Working at the computer is not the only thing I do though, I also cook (well guide the assistant during this).
Two times a week I go to pool therapy, which is basically swimming with the help of a therapist, but it is also trying movements of my muscles with the support of water. When I go to pool, I also take sauna, it helps relax my muscles, and some of them like my fingers relax what are all the time contracted.
I do my groceries. I also like to go out shopping like every woman and meeting with friends for coffee or lunch. My assistant goes with me everywhere. She is not there just to push the chair. She is my hands, feet and voice. She has to pick up everything for me and carry them. She has to speak for me. If I want to drink or eat, she is the person helping me. I actually consider them as my angels and that they truly are.
I want to look as good as possible when I am going out. I put make-up on and have my hair nicely combed. I am a perfectionist, so everything has to be exactly how I want it. You might think that this is vanity, but it isn’t. I want to look as good as possible so I can be like a light in others people’s lives. One thing that I certainly do not want is for people to look at me and feel pity for the woman in a wheelchair.
The assistant’s working day ends at six pm. At this moment, I stay home alone with my husband. Then we have a much-needed privacy after having someone around all day long. At this moment, we talk about anything and everything. Sometimes we can talk for two hours straight. After that, I go back to my computer to work a little bit more.
At ten pm assistant comes for the evening shift, which is from ten to twelve. First I have a small snack. After that, she lifts me to my shower wheelchair, where she then baths me with a hot shower that I love. Following she puts me to bed and tucks me in, and leaves.
We do not watch too much television with Henning except in bed at night before going to sleep.
I was very depressed and didn’t even want to live anymore after the stroke. The idea of a bleak future didn’t give me much reason to live. There was not even hope for a miracle. I am so glad I didn’t give up though; perseverance and optimism taught me that miracles can come in all forms and shapes. I feel blessed I have someone to love and that someone loves me back. I laugh a lot, and I enjoy life as much as I can. I am almost completely paralyzed, and I am utterly happy.