I have a condition which keeps me locked in a prison of fear most of the time. I cannot go for a walk without someone with me in case I lose control of my arms and legs. I cannot take a shower without someone in the house with me. I must stay in the nearness of others due to my sudden and unwelcome collapse. I need someone close to call 911 if I hurt myself falling.
However, I am an independent and rebellious soul, who refuses to succumb to fear. Therefore, I do stupid things. I go out in the back yard on a cold day to play with the dog and don't tell anyone I am going. I drive to church services when I cannot find a ride. Sometimes, those around me are no help in this matter. I am not laying the blame on them in any fashion. People tend to forget that I have this condition because most of the time I am up and about and taking care of things. However, I do not have the luxury of saying, "Oh, I won't have an episode." I have no idea when they will come...
One time I was laughing with a friend, we were ordering lunch to go at a busy restaurant. We were at the counter and my legs quit working. I thank God that my arms continued to work or I would have been back in the emergency room.
Another time, I was at a convention and carrying my lunch to my table when I slowly lost control of my legs. I looked like someone walking downstairs behind a couch... This was funny.
Another time I was sitting in a truck and my arms wouldn't move to reach for something. It is really hard to explain to people that your body just quits sometimes.
Another time, I was going to get me some coffee in the kitchen and collapsed. I could move neither arms nor legs. Just my head.
One time I was sitting at my computer working on a story, when my arms quit working. I thought I could move my legs, at least. I was wrong. I was stuck in my computer chair for four hours.
I want you to know, I do not lose feeling. I feel the muscles ache to be used. I feel the pinch from the chair that lets you know it is time to change position. I feel the banging of my body parts when someone carrying me accidentally bumps into a wall or doorway. I feel the raw pressure of the bed when I have been in it too long in one position.
I feel other things too. Things inside me. I feel the uselessness, the frustration of being able to care for myself just a little while ago. I feel the questioning of those around me wondering if I am faking it to get attention. Just to set the record straight. No. I do not wish to have this attention. I am not a baby, I like to feed myself. I am not a baby, I like to clean myself after using the restroom! I like to play with my dog outside. I can like to drive places for myself. I like to have my freedom and independence. Most of the time, I can do these things without something happening.
However, when you are outside in the cold, playing with the dog and no one knows your there and you lose control of your legs. A twenty foot walk becomes a marathon. The cold seeps into your bones. Fear creeps into your heart as your mind goes over those news stories about people freezing to death in the winter. Desperation mixes with panic as you contemplate how you will get yourself into the house, stairs become monumental challenges that appear to be insurmountable.
I have been lucky so far. Someone has nearly always found me when I needed help the most. I have spent hours on the floor inside the house when no one was home, but I was warm and safe. I did not hurt myself when I fell, other than a bruise on my hip and a minor bump on my head. However, the floor is not where I would choose to spend my time, had I been given the choice.
I am learning to live life on life's terms. I am learning that I must remind others of my condition when they want me to do something I used to be able to do without worry. I am learning that I must let someone know where I am at all times. I am learning that I can not drive without endangering myself as well as those on the road. I am learning that my independent life is over.
And, for me, that is living life on life's terms today.