When I first heard about full body paralysis I didn't see the point of living with such an isolating condition. What would be the point of life without the ability to do anything? I was 16 years old and somehow the subject of being paralyzed in this way had come up and I remember thinking about it afterwards. I didn't really understand what it meant but I didn't believe it would be worth living with. I thought that it would be better to be dead than to live with this condition. With the quality of life so low I was unable to see the point of being alive. What would be the point of not being able to move and what about sex? My 16 year old self had no understanding of the way his life would develop.
Now I am nearly 60 years old and I have been paralyzed for 20 years. I have become the person my 16 year old self could hardly imagine worth staying alive as. I don't move and I have a very weak voice. So I don't do or speak much and there isn't much I can do. I mostly "speak" through my writing but this is very limiting and restricts interactive communication.. What about my 16 year old self, what would he say to me now
Would he tell me just to end it when he realised that life would become very lonely. When he began to see how challenging each day would be, no more lie ins and quick showers, or walking barefoot on the lawn and reading a book under the tree, or plunging into the pool on a hot day. Yes and no more relationships with sex, What about life without a loving relationship - surely that can't be worth living? At 16 sex is always on a boys mind, indeed at 60 sex is always on my mind. At 16 I couldn't imagine a life without sex even though I had never had sex I knew the pleasure that was part of it. I longed for the intimacy that a sexual relationships promised.
What would the 16 year old Julius tell me knowing what my life is now? When he discovers that the intimacy with girls that consumed his thoughts was never going to be, In fact the relationship he had with his own body would cease and instead he would watch other people clean and groom his body. The ache of the longing never leaves and nothing else can replace the loneliness of losing touch with your own body.
I have tried to live with my new life with dignity and I have tried to appreciate the beauty of life. I am alive and what an improbable privilege that is.
