My StoryThis is not something i planned on doing one day at 3 in the morning. The mind wanders, and after a long time of searching i found something... remotely close to what i was looking for.
Somebody else with the same disease. I can't say its a burden, but i can't call it a gift.
Everyone in my family calls me the "miracle child". Wasn't supposed to live my first night, if i did live, massive brain damage, probably would be a vegetable, never supposed to walk, blah blah, all the same stuff that they seem to tell everyone who has SA. However, here i am, spilling my perfectly healthy brain onto this laptop, to a random forum i found.
I love the idea of this website... i found growing up the biggest thing about SA is there is pretty much nobody who has it that lives around you... and honestly, that can make someone a little lonely. I am happy to see I'm not the only person who is "lucky" to have gotten this far!
Growing up was never too hard. I guess the hardest part about everything is the confusion. Nobody seemed to know what was going on, nobody knew what was wrong. The other part of this disease, as I'm sure many people are aware, is the bladder problem... so embarrassing.
I have never spoken really to anybody but my mother about it, my entire life. As growing up, nobody knew exactly the problem, my family believed it to be more of a mental issue than a physical one (she finally admitted to me she believes i have a problem when i was 16-17) but pretty much until then, i spent a lot of time grounded, for being "dirty".
Now don't get me wrong, i have this problem under control. a steady bathroom break of a billion times a day and a pad for when i need to go far distances does the charm. This is a formula i made on my own, so as not to be dirty. Nobody wants to deal with that!!
Anyway, i grew up with a lot of really good friends, never got into any real trouble.
Than i turned 15....
Marijuana became my best friend. don't get me wrong, i had my group of close nit friends, we would bike around town for hours and hours, doing all sorts of stuff, mostly getting high, making raps. When i was in grade 12 i dropped out of school. i personally find they way they teach in public schools (at least in Ontario) isn't the best teaching, i could find better on the internet. I was actually home schooled in grade 8, that was okay, i felt i learned a lot more important things for my education. I dabbled in drugs and alcohol for a few years, as most teenagers would, i had my sleepless nights and i had my female interests. But when i turned 18 i found a girl, i'm still with her two years later, and she's amazing! i may dabble in the marijuana once in a while, sometimes when in severe pain, sometimes when i'm with some friends. I have joined a college, learning CGI (films and video games, such as Ubisoft or Pixar) Something i can do sitting down, something i can do that i enjoy. It got me away from a bad situation in life, it got me back on track into making myself a responsible, practical, and useful human being.
Anyway, so far that's a lowdown of my experiences growing up.. I have a great girlfriend of two years, two cute cats. an amazing apartment in Toronto. Getting a job from help from the government, going to college. I'm excited to see where life will take me.
I'm currently setting up an appointment for my first ever orthotic shoes. $2000 shoes! i hope they help. Over the years my right foot has gotten flatter (my heals have never touched the ground before, my feet were in a stuck position) (actually i think this may be important, i do not have ankels, and i lack a tailbone. I don't know how many other people with SA have that... my thighs are huge, i just started growing muscle on my calves, i believe from biking so much) than my left one, making my back slightly more painful for, well everything.
I should end this here with this
Never let someone tell you, you can't do something. That's probably a quote from something, but it's still very true. You can do anything. A disability doesn't need to bring someone down, and you shouldn't let it. Try everything and anything to be a better person.
Anyway i think this is the first story so far, it's certainly not the best, but it's now 3:30 in the morning and i should go to sleep.
If you've read all this, thanks. i've never told my story before, i would love to talk more detail about whatever i guess. As well as i would love to hear someone else's stories... still havent met anyone with this disease, and i would love to see how other people cope!
Thanks for reading... and uh... have a good one :D