Musings of a Semi-Mechanised Man: A journey of self discovery and introspection for a thirtysomething disabled man (who has used an electric wheelchair since age 5 due to a congenital and extremely rare neurological condition) as he tries to better understand himself and the world around him against the backdrop of a progressively deteriorating disease and diminishing physical independence.
This blog has come in to existence for several reasons. As I do not have a definitive diagnosis, and as I realise that my neurological condition is most likely caused by a genetic defect, I wonder whether there will be a another child born in my family with this condition. This prospect terrifies me.
Last year as I was preparing for significantly risky surgery, which for a variety of reasons did not go ahead, I began to think that there were certain thoughts, beliefs, ideas, lessons and experiences that I felt could benefit any future child born within my family that exhibits a condition similar to my own. This is not the kind of legacy I wish to see passed down the generations, but it is not something that I can control. Most likely, this genetic abnormality passes down the female line but is manifested only in males.
I have not always dealt with my disability as well as perhaps I should have. But, I didn't have anybody around that was like me so although those surrounding tried very hard to understand what life has been like for me I still felt, and continue to feel, a little misunderstood. I realise I have spent most of my life avoiding other people in wheelchairs and this has exacerbated this feeling of isolation, but it is only with hindsight that these things become obvious.
Therefore, I wanted to leave a lasting record of my thoughts and experiences, in case it helps somebody at some future time when maybe I am no longer around. At present, I know within me I can't commit myself at this stage to writing a book in a formal sense. Blogging allows greater flexibility, and suits the way I wish to write at present.
To that that end, I hope that this is never required in that way. As I won't be having children, it is my sincere hope that this disease dies when I do.
Another reason for doing this is that I need to communicate with the universe. I am not a religious person, I don't believe in a personal God. I do think though that the reality in which we all live is not entirely all there is, we only experience with our five senses a fraction of what permeates and surrounds us. I am not sure whether I believe in an afterlife or not, but I don't see a godless universe as completely dismissing the concept of the soul. Quantum entanglement and non-locality of memories in the brain can support - or more accurately, not destroy - an argument for post death survival.
I have an intense rage buried within me, but I don't have a God to directed it to. I see some parallels between the internet and the universe, and so it makes sense to me to disperse my words into the ether of cyberspace. I don't see it is that much different to sending a digital signal to the stars. I do have some things I need to get off my chest, and if I could right now I would knee the universe squarely in the nuts (or give it a stern talking to, if female).
I need to talk about things to help me understand them. I need to become more at ease with who I am, and I need to do this publicly or it has no meaning or sense of reality. I need to forgive myself for being born this way. I need to stop comparing myself to other people. I need to live more for the present and stop attaching so much meaning to other people's opinions of me. I need to realise that there was nothing more I could have done to find love and that continuing punish myself for being alone now will not change it.
My life to now has been a bit like the fortunes of the main character in the old 1980s and program Greatest American Hero who finds himself wearing a suit that gives him special powers but he is unable to use it properly because he misplaced the instruction manual. I don't consider myself to have any special abilities - nor am I American - but that's not the point I'm trying to make. I was born into a body that was different and I really had no clue as to how to go about my life. I do have regrets and I do have many things I would change if I could but I didn't have any manual teaching me how to live my life in these circumstances. No one around me used a wheelchair or had a significant disability whilst I was growing up and so I just tried to live as normal a life as possible. I wouldn't change that.
However, there were a number of things that set me apart from my peers and I was on a fool’s errand thinking that I could live a completely normal life. I made a lot of mistakes and I chased a lot of rainbows. I could have done better, I could have done a lot better but I still don't think that I could have had all that I wanted, no matter how hard I tried.
This is going into areas that could stretch off into infinity but my central point is that I need to draw an end to trying to live beyond the confines of my disability. That era has passed me by, that chapter is over. What I will endeavour to do now is to try to build myself a new life, built on a more realistic foundation and a more accurate self-image. I'm getting a little tired of hating myself, I have done it for far too long.
In the writing that follows, I am going to try and work out who I am. As strange as it sounds, I honestly and genuinely don't know who I am any more. I thought I did, I thought I had a pretty good handle on it but suddenly as one loss after another came, it spilt off pieces of my personhood and they all fell away. My job ended, my independence ended, my apartment ended (not to foreclosure or other financial cause but to an inability to physically reside there), my security ended and a lot of my physical capacities ended or substantially reduced.
I'm not sure what's left, really. Something remains, but is it my essence? Is it a purer form of myself? Is it a whole person still? Is it free now all the peripheral things have dissipated? Is it capable of generating a new self? What does it need to heal?
The thought recently occurred to me that what has happened to me will happen to every person on this earth, it really isn't so unique after all. Everybody, from the richest to the poorest, from all countries, of all creeds and religions, everybody will surrender up their possessions and symbols of status and all of it will go upon death. The only difference in my case, as compared to those around me, is that some my losses were sustained whilst I'm still living, thereby allowing me to witness and experience the aftermath. Nothing is eternal, everything changes form eventually.
This realisation has caused me some comfort, not through knowing that everyone will suffer loss too, I see no joy in another's demise, but through knowing - and feeling - that loss and transition is a natural part of life.
I hope that some of my writing makes sense to those who read it. I thank them for taking a few minutes of their time to consider what I have to say.