Let me just start off by saying, I love talking about myself. So,
in an attempt not to bore you to death, I am going to try and keep this as
short and as to the point as possible…
My name is Jaxson Creasey. I am 19 years old,
about to enter my second year at the University of Victoria and I am the
biggest sports fanatic you will ever meet in your entire life. Oh, and as I am
sure you will notice throughout the series of blogs I will be posting, I have
been told that I have a cutting, borderline over-the-top, sarcastic,
ridiculously dry sense of humour. Sounds like your typical 19-year-old boy
right? Not exactly. At age 2 I was diagnosed with spinal muscular atrophy (SMA)
– a rare and extremely degenerative neuromuscular disorder. As a result, I am
in a wheelchair. Growing up people have reacted to my “situation” differently.
Some respond with sympathy or pity (if you ever meet me, please do not do
this), others think that I am mentally challenged (this I just find amusing). However,
once many individuals have gotten to know me, they realize that I am literally
the most “normal” 19-year-old boy they have ever met (that is, despite the 350
pound set of metal limbs I rely on to move around). As a result, this is where
I have developed my “philosophy” on life with a disability. While I am in a
wheelchair and require the assistance of my friends, family and support workers
to help me with all aspects of my daily life (yes, including wiping my butt!), I
am not different, nor do I want to be viewed differently than anyone else my
age. So, at risk of sounding cliché, my philosophy is as follows: adapt
circumstances, not expectations. In other words, do not ask for people to
change their expectations of what you can accomplish, just ask them bend the
rules so you can achieve the final outcome in your own unique way. Sound like
something you might expect to find in a fortune cookie? Good. To be honest, if
a philosophy isn’t cliché, it is not legit. And that is something I pride
myself on being – honest.
The purpose of this blog (I’m hoping) will
be for me to provide answers/ideas/opinions/perspective on questions of any topic. (E.g., navigating
CSIL, University, high school, ANYTHING). That you, my readers will email me
(see email below). In your email, I will ask you (though not required, just
preferred as it makes my job easier) to disclose your diagnosis, name or
pseudonym and age. Or if a friend or family member of a youth with a disability
email’s me, the youth diagnosis and your relationship to them as well as, your
name. In doing so, I will respond as soon as possible (on this blog) with my
honest, truthful and helpful (once again, hopefully) opinion.
Please note that on extremely rare occasions my borderline sense of humour has
offended some people. So, if I offend you in one of my posts, I am extremely,
extremely sorry. Let me know in an email if this is the case and we can discuss
it further. I am a caring, accepting and compassionate person and it is never
my intention to hurt anyone’s feelings.
Stay classy people,
Jaxson Creasey (youth intern at Bridges to
the Future)
Jaxson.creasey@muscle.ca
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