I
am going to have a go at writing a blog. I hope to access
enough courage to speak the whole truth about my thoughts, feelings,
hopes, dreams, and fears. I want the reader to try and
understand where I'm coming from as a person even if they don't agree
with what I've done or my perspective. To those who are reading
this and know me personally, I don't know what you will make of some
of this. I can't say for sure that my story is all that
compelling but I will let the reader decide. I am writing
this as I believe it might be a therapeutic or cathartic process for
me. If anyone gets anything out of reading this blog than
that’s fantastic, if not well that’s fine, it helps me at least.
This first paragraph is an introduction so without further ado. My
Name is Kevin, I'm a New Zealander from Waikuku Beach in Canterbury.
I view myself as a reasonably intelligent and well informed
person. I am a mostly normal man, accept there is always an
elephant in the room with me, always. Everyone has a point of
difference or something that sets them apart from others, mine is
just much more noticeable. I'm quadriplegic as a result of a
progressive and physically debilitating muscle wasting disease,
Duchenne Muscular Dystrophy. The thing that makes my disease
outwardly obvious for everyone is the 'power wheelchair' that I use
for my mobility. I am twenty-five and there are lots of things’
that haven't happened for me that many, if not most people take for
granted. Yes, I have learned how to relay something really
terrible in the least words possible. I hope I don't sound
bitter or depressed because ninety-five percent of the time I'm not
in a 'bad' state of mind. I will be brief and go into things in
more depth in later blogs.
Why
am I writing this now?
I
am writing this now because I am twenty-five years old and suddenly I
find myself in crisis. I may not be the only twenty-five year
old in crisis but I can only speak for myself. What sort of a
crisis you may ask... Well an existential one, a crisis of
existence. Why am I here? What is my purpose? Will
I ever have romantic relationships? Will I ever have a partner
and children? Will I contribute anything to society? What
would people say about me if I die tomorrow, what would be my legacy?
I am sure that many people struggle with some if not all of
these questions. Then again most people (a generalisation, I
know) my age don't ask the relationship question in terms of 'will I
ever?'. I doubt that most contemplate the 'if I die tomorrow?'
quite as much as I do either. There are emotional,
intellectual, spiritual, sexual elements to the crisis I am in.
To be human means you will have crisis or catastrophe in your life no
matter who you are, rich or poor, fat or thin, able or disabled.
The origin point for this state I find myself in is as a result of a
really big change of circumstance in my life. Things are really
going well for me in spite of how it might seem.
I
have long wanted to write about my thoughts and views but was quite
caught up in self-doubt or even self-hate. I want to find a way
to make a difference in people's lives. I feel that I am in a
great deal of debt to the people who care for and love me. I
feel that I have had so much care and compassion shown to me that its
time I pay it forward, so to speak. I don’t know that writing
a blog is the best way to do it but it's a start. I think it is
best to start close to you and then branch out from there.
Thus, I have begun to contact other people affected by Duchenne
Muscular Dystrophy (DMD) and/or their families to try and help them
by telling my story, giving them advice, or just listening to what
they have to say. This blog is about reaching out to the
broader public. Perhaps I can do something about the horrible
misconceptions many people have about disability and the individuals
who live with it.. It is time I start using this mind that I'm
so grateful for. Until next time, peace and love to you.
Kevin J
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