Are you feeling low, like life is tough and you are all out of motivation and inspiration? Let me introduce you to Daniel…
‘I am pleased Jane asked me to write this piece, but also I admit somewhat daunted, this is certainly not the kind of
post I normally write or the normal group I write for, I’m a geek and a man so writing about myself isn’t something
I’m skilled at, hopefully you all find it interesting, here goes!
I am 38 years old and have Duchenne Muscular Dystrophy, to some this may define who they are but I see myself
differently, as I said above I’m a man and a geek, that’s me, not my medical condition, DMD may make how I live my
life slightly different but it doesn’t change who I am, my moral values (instilled by my Grandparents and Mother) or
what I want from life.
My early childhood was fairly normal, my Mother was left at the altar at 18, not because of my condition that wasn’t
diagnosed until I was about three, but I guess just because he hadn’t got the guts to be a real man. We lived with
my Grandparents and my Uncle and I had great fun, I went to a normal school and wasn’t judged for being slightly
different, I don’t think I’d change anything, it defined who I would become, I never wanted or needed Mum to be
married, life was good.
I had the choice of going to a ‘special school’ but as far as I was concerned I was normal and my friends were
normal, I wanted to go to a ‘normal school’ too, and I really am glad I did, seeing real life with all the bad as
well as good helps you cope in later life, hiding from it or thinking you are special just because you have a medical
condition helps no one. Of course I was treated slightly differently at times, I couldn’t get to some classes due to
stairs or do PE, at these times I’d often sit in a teacher’s office, sometimes talking to them, sometimes with my
carer doing exercises with me and sometimes doing computer tasks for the teachers, I don’t see this as a bad thing at
all, I learned a lot and experienced things the other children didn’t. I was never treated differently in class or
by the other children either, I was told off, messed around and was never bullied.
I decided I’d go to university early on like everyone else, I didn’t pick my course based on accessibility or support
but purely on interest, I did limit myself to universities close to home though, moving would have been difficult and
I wanted to concentrate on learning without too many distractions. Not that it was easy, it was a round trip of 90
miles a day and could take up to 3 hours, it did allow me time to study though and do any homework. University
wasn’t the best or worst experience of my life, it was boring in general but I learned skills which helped later in
life, although the physics itself hasn’t really been of much use.
I have lived my life since university mainly on the internet, this may be partly due to my condition, I’d probably
have a job otherwise and not had so much time for the net, although I suspect my job would have been computing or
electronic based as these are my natural skills and interests, maybe I would have also done some outside activities
or travelling which would have taken time away from my computer interests, who knows? But back to what I did do, I
immersed myself in the internet, learning new things and ‘meeting’ new people, I mixed with some groups whose
activities may be frowned upon by law enforcement, I never did anything malicious, just mixed and learned a lot, and
I was always treated as an equal, that’s the main thing about the internet, you can be who you really are without
physical things being an issue, everyone is equal, some of the friends I made back then are still friends now and
know about my condition, it still doesn’t matter.
A while later after dabbling in quite a few other projects I found something really interesting, a project from NASA
called World Wind, it was amazing, there was a virtual globe that had real satellite imagery in it and 3D terrain,
you could zoom in anywhere on earth and explore! This appealed to me on so many levels, on a pure geek level it was
awesome, but also I would never have chance to visit many of these places due to my condition, it was almost like a
new form of freedom, you need to remember this was before Google Earth and other big business got on board and made
3D globes popular to the masses. I decided I wanted to be part of this, luckily for me it was one of the first US
Government projects that was Open Source, meaning anyone could contribute (although those contributions had to be
approved by NASA), I joined the chat room where NASA employees and the ‘normal’ people interacted, these weren’t
exactly normal people, they were scientists, computer experts, web geniuses etc. it wa quite daunting, but I wanted
to know and learn from these people, so I lurked and soaked it all in, after a while I started answering questions or giving my opinions, this gradually evolved into me writing code for the project, administering the online forum and eventually being the project manager for the Open Source community.
I basically ran the whole World Wind project for the final release, NASA had moved funding to other areas so I just had to get approval from the NASA project manager for the release, I think that was probably the biggest achievement in my life, the World Wind project is still around and I still help out, but it is in a different form and has different goals, I suspect it will always remain part of my life and so will NASA.
I hope I haven’t bored you too much and that I’ve shown having a disability doesn’t mean you can’t do worthwhile things, being able to adapt is a fundamental part of being human and I’m still human whether or not I’m limited in some ways, there is always something interesting and fun to do no matter who you are’.
Find Daniel online:
Possibly the struggles of your day or week, don’t seem so bad now. I hope not. Many people deal with heavy burdens and great challenges. It seems the way to manage such things best is to deal with what has to be dealt with, then forget it – Daniel got out of his world – and go and do…do anything, something. Get involved with others, reach out. Life doesn’t generally float in the front door, you have to go find it. ..in your community, Volunteer, reach out…even find it on-line, but do find it. As your forget yourself you will find in time you feel better, more cheerful and more able to cope. My cardiologist used to say Prepare for the worst then expect the best…it works. Yes, really…
if however you feel you may be suffering depression please contact your local Doctor. Or talk to a counsellor or pick up a phone and call a friend, or Lifeline. Reach out. Now
I have always maintained that the hardest thing about having a life limiting degenerative condition is the limits, we as society, place on people. We turn people like Daniel into those deserving of pity, we forget to see their internal person, and forget to make the most of their strengths and gifts.
I am blessed to have Daniel as a trusted friend. I am inspired by his ability to look inside himself, and to use the internet to give space for his gifts and talents to shine.
Daniel reminds us everyday that life is for living, however that is, and that sometimes we have to forget our own limitations and find a way to let our light shine.
So thank you Daniel for sharing, but thank you most of all for letting your light shine.
thanks Kylie, sorry I am long in getting here. He is an amazing person.
interesting article, should be done more like this, keep up the good work.