The Average Life of a Guy with O.I.
So as of writing this intro bit, I'm not sure where this blog post is gonna go exactly. But this is something that has been on my mind as of late, and I feel the need to just kinda vent about this subject, and perhaps get a discussion going. So here goes nothin' I suppose. :PSo most of you might not know this, since I've only added this information to my profile recently, but I have a rare condition called "Osteogenesis Imperfecta." Or "Brittle Bone Disease" if you prefer the simpler definition. This is a bone disease that can come in several different variations, but the one aspect about this disease that remains the same throughout all versions is that it makes my bones very fragile...Like...EXTREMELY fragile. Accidentally collapsed onto the floor? Broken bone. Bumped into something too hard? Broken bone. Someone grabs you too tightly? Broken bone. Obviously throughout these past 20 years of living with this condition, I've been fortunate enough to learn how to avoid situations like these, and thus have avoided fracturing another bone for the past 10 years or so.
Recently though, I've been thinking about some of the things that this condition has prevented me from being able to do, in terms of social and outdoor activity. The version of this condition that I have prevents me from being able to walk, and I'm also quite short for my age. Because of this, I really can't go out and do alot of things myself. Any outdoor activity that I do manage to go do, I have to do with others. Wherever my parents go, I gotta go with them. And I hope nobody takes this the wrong way. Obviously this isn't a jab at my parents or anything like that. They raised me very well, and I love them very much. I couldn't imagine life without them. However, there comes a point in I think everyone's life, where you feel like it's time to sorta "leave the nest" I guess you could say, and try to make it out on your own. With this disease however, that makes this task quite difficult to do.
The wonderful world of the internet has allowed me to experience SOME of the aspects of the outside world, and as much as I appreciate those aspects, and love getting to experience them almost every day of my life, there's still something inside me that feels like something's....missing. It's a feeling I've had for awhile now. It's a feeling that actually stretches all the way back to the latter half of 2014. At the time, I didn't realize what this feeling was, and what it was about, but after giving it alot of thought, I think I know why.
I think it's time for me to figure out some way to get some independence for myself, and experience the outside world. I don't know how, but I feel like this is something that I need to do, in order to finally see some closure, to this nagging feeling I've had for the past couple years. I want to be able to get out there, and meet real people face to face, make some new friends, or perhaps even more than that. I want to be able to go to the movies or something, and actually pay for my own ticket with my own hard earned money. Maybe even find a decent job that I'm good at. Or atleast just SOMETHING that I can do for myself. I dunno. I'm rambling at this point, but I really needed to get this off my chest, since as I've said before, it's been bugging me for a little while now. What do you guys think?
Comments (19)
As for the topic, yes, that's absolutely right. In your shoes, I'd have the same goals. Find a job I can handle, which I love and which I am good at. Programming for instance? what about that? It shouldn't involve many risks for you cause it's not physical and it can be rewarding and pays well as well - especially once you become an expert in the field.
Once you are stable in a job, the next step is to get your own little place and start living alone. Enlist help if needed. Finally, find youself a good wife. (Be prepared for a daily headache and a ton of trouble though. You know, women can be a pain in the neck I'm told.) Baby steps will get you there.. no rush though. Consider every decision you make carefully and you won't regret it for a second.
Plenty o luck for your future pal ... veryy glad to see you around.
Out in the real world? I'm afraid not. I do have plenty of online friends, but none of them live near my area to my knowledge. You're correct though. I would probably need some type of aid to assist me for certain things. That's something I use to always have when I use to go to public school.
Find out from them the challenges and pitfalls, so you can learn from their experiences what to do, and what not to do.
Best of luck
Thank you so much for the kind words man. It means alot. :) I'll be sure to look up some of those speakers when I get a chance. Any speakers in particular that you would recommend I check out?
As for your suggestion for jobs, I actually don't know squat about programming. XD I do however, have quite alot of experience in video editing, and very recently have been taking up writing. My mom said that she saw a film school near our area, and we're thinking about checking it out, since she knows how much I love scripting and making videos. So I may try to pressure a job in film making, since editing seems to be what I'm most good at currently. :P
Again, thank you very much for the advice. :)
Sean Stephenson is one of the best. Check out his motivational talks.. he's one hell of a cool dude. This is a short intro about him:
Just finished reading a story about someone who has OI and there's certain things he can and can't do.Amazing story it was.
It all depends really. Most of the skills I have that could get me a job, I mostly learned through video tutorials on YouTube, or by just derping around in my editing software, and accidentally coming across a useful tool. I would love to maybe make my own games one of these days, as I'm a video game lover, so perhaps that might be something I could get a college degree for. Or perhaps I could take my already existing video editing skills, and get a job with that. Honestly, time will tell. :P Thanks for the support man. I appreciate it. :)
I have Ms, and have gone to support groups for awhile now. Groups with positive, people are a blessing , and can give you plenty of support, and ideas to get you thinking. I ve learnt from my ms support group meetings, negative people can get you down. And I ve heard from other support groups, those down people can get you down. You learn a lot from those positive people at support groups,
Just think ,sitting down with people who are familiar with what you re going thru, can t hurt. Take Care Bud,
There is some very sound advice from other bloggers above, such as support groups and Tenners suggestion of checking out the motivational speakers who have OI.
You're obviously an articulate and intelligent guy, judging by your blog alone.
My daughter is not in a dissimilar situation. She is 18, has nerve damage in her hip and leg, suffers from CRPS 3, and is practically bedridden. She aches to be out in the world, so can relate to how you must be feeling.
What impresses me with you, is your positivity and you're obviously motivated in pushing forward to a level of independence that you're comfortable with, and which is safe.
All the very best with your ventures.
She hasn't made any recent entries as she's doing other activities such as learning French, her daily physio and tutoring....but you may like to read it anyhow.
Thank you very much for the kind words. It really means alot. Sorry to hear about your daughter though. I wish her the best of luck. :)
Also, sure! You can send me a link. :)
Sorry about that. XD Try it now. I went in and changed the settings.