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Post by Deleted on Jul 24, 2012 17:10:51 GMT -5
Another question i came up with while talking to a dev here-
Wheelers- How well adjusted are you to your condition?
Im just shy of 3 years since my injury, and in the beginning like any stubborn 22 year old i was convinced that I would have this whole bit worked out. I acknowledged the fact that it was daunting and life changing, but i was confident in being able to avoid the landmines that being a para would bring. How wrong was I...
Independence and lack there of, and sexual frustration (which has led to some of my, shall we say, less then finer points of my life) have admittedly been two of my biggest road blocks. Its hard to adjust when up until the point of my accident I spent 4 out of 7 nights a week partying at a friends house, not coming home, working 2 jobs, going to school, participating in "casual relationships" with the opposite sex, and overall just throwing caution to the wind only to have that taken away in the blink of an eye.
Anyone else on here experienced the same thing? Like to discuss with us? At the end there will be a big digital group hug.
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Post by brace4impact on Jul 24, 2012 17:49:05 GMT -5
I suppose this is a better question for those who became disabled rather than those who showed up to the party already dressed for the occasion. But even being born with it, you never quite get "used to it." There will always be some little thing that reminds you every now and then. I think one of the downsides of being born disabled is you're treated differently as a child, and that can screw you up. If people always do everything for you, feel sorry for you and make things as easy as possible, when you get thrown into the real world, it's a bit of a shock. The stares from kids are also annoying.
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Post by BA on Jul 24, 2012 20:37:50 GMT -5
Rival, what a great post. 3 years is really a short time in the welcome to sci world. I will bet some of the old-timer dudes will be able to speak to those questions really well. From what I can see though, you have the kind of personality that will def help you along the road. I've been on this site for about 6 years and have gotten to watch some people who sustained injuries really 'evolve' (for lack of a better word) and I've seen some amazing growth in people.
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Post by Deleted on Jul 24, 2012 22:28:15 GMT -5
Thanks BA. I hope that others are willing to step up and talk about their experiences. I am, and i'm sure others are as well, dealing with or have dealt with these kind of sentiments. Whether born with it or because of one thing or another theyve wound up in the position, theres plenty to discuss, learn, and grow from sharing these experiences. I hope some of the senior members of the website contribute
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Post by dystrophian on Jul 24, 2012 22:32:12 GMT -5
I suppose this is a better question for those who became disabled rather than those who showed up to the party already dressed for the occasion. But even being born with it, you never quite get "used to it." I respectfully disagree, my dear Frodo. This is normal for me and there's nothing for me to get used to. I don't know anything else. As for the kids, I just stared back. Like so: -_-
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Post by Max on Jul 25, 2012 5:27:11 GMT -5
I suppose this is a better question for those who became disabled rather than those who showed up to the party already dressed for the occasion. But even being born with it, you never quite get "used to it." There will always be some little thing that reminds you every now and then. I think one of the downsides of being born disabled is you're treated differently as a child, and that can screw you up. If people always do everything for you, feel sorry for you and make things as easy as possible, when you get thrown into the real world, it's a bit of a shock. The stares from kids are also annoying. I respectfully have to disagree with part of your post. As a wheeler who showed up dressed for the occassion (love the expression) I can tell from experience that being born with a disability does not mean 'everything gets done for you" or that you are treated different that a later-in-life-wheeler. Just as for any wheeler, things get done for you, that is true. But it depends on how you're raised and how much you can do by yourself. My parents raised me to be as independent as I could be. "There are things you can't do, but you have to try it for yourself first". I have never been thrown in the real world because I have always been part of the real world. No special schools apart from kindergarten and only the necessary adjustments to schoolschedules. How different would a kid that becomes disabled at 12 be treated than a kid that has been disabled from birth? The latter might have a head start in dealing with it, but he won't be treated much different. In primary school I have gotten enough questions from classmates at the beginning of the year. "Why are you in a wheelchair?" "I can't walk as good as you" "Oh. Do your legs hurt?" "No." "Oh, ok. Wanna play hide and seek?" Simple as that. Question and answer, much better than the situations later in life when people just stare or are afraid to ask. Which makes you rebellious, to be honest. Stare-downs with annoying people, playing chicken with people who don't seem to notice they're occupying too much room for me to pass. Been there, done that, still doing it. Also, would someone who became a para 30 years ago have more problems dealing with his disability then me at age 30? I really don't know. Sure, I have never had to make the transition from ablebodies to disabled, maybe that helps. But I have and have had my fair share of FML-moments too, trust me. Dealing with limited capabilities is one thing, but being confronted with those capabilities getting more limited at certain points in life can be just hard to adjust. I realise my post can come across as a bit fierce or attacking, and I did not intend it like that. My apologies in advance to anyone feeling offended. I just had to get a few things off my chest regarding this subject .
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staron
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Post by staron on Jul 25, 2012 6:06:48 GMT -5
I suppose this is a better question for those who became disabled rather than those who showed up to the party already dressed for the occasion. But even being born with it, you never quite get "used to it." There will always be some little thing that reminds you every now and then. I think one of the downsides of being born disabled is you're treated differently as a child, and that can screw you up. If people always do everything for you, feel sorry for you and make things as easy as possible, when you get thrown into the real world, it's a bit of a shock. The stares from kids are also annoying. I respectfully have to disagree with part of your post. As a wheeler who showed up dressed for the occassion (love the expression) I can tell from experience that being born with a disability does not mean 'everything gets done for you" or that you are treated different that a later-in-life-wheeler. Just as for any wheeler, things get done for you, that is true. But it depends on how you're raised and how much you can do by yourself. My parents raised me to be as independent as I could be. "There are things you can't do, but you have to try it for yourself first". I have never been thrown in the real world because I have always been part of the real world. No special schools apart from kindergarten and only the necessary adjustments to schoolschedules. How different would a kid that becomes disabled at 12 be treated than a kid that has been disabled from birth? The latter might have a head start in dealing with it, but he won't be treated much different. In primary school I have gotten enough questions from classmates at the beginning of the year. "Why are you in a wheelchair?" "I can't walk as good as you" "Oh. Do your legs hurt?" "No." "Oh, ok. Wanna play hide and seek?" Simple as that. Question and answer, much better than the situations later in life when people just stare or are afraid to ask. Which makes you rebellious, to be honest. Stare-downs with annoying people, playing chicken with people who don't seem to notice they're occupying too much room for me to pass. Been there, done that, still doing it. Also, would someone who became a para 30 years ago have more problems dealing with his disability then me at age 30? I really don't know. Sure, I have never had to make the transition from ablebodies to disabled, maybe that helps. But I have and have had my fair share of FML-moments too, trust me. Dealing with limited capabilities is one thing, but being confronted with those capabilities getting more limited at certain points in life can be just hard to adjust. I realise my post can come across as a bit fierce or attacking, and I did not intend it like that. My apologies in advance to anyone feeling offended. I just had to get a few things off my chest regarding this subject . I planned on writing to this thread, but I agree completly with Max.
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Post by Ximena on Jul 25, 2012 8:51:01 GMT -5
Great post, RC. Interesting to read everyone's experiences/views.
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Post by MarineAmp on Jul 25, 2012 16:27:04 GMT -5
I agree RC, good question, I had a few days to sort of soak in this question and do some reflecting of how I've adapted to my disability over the past 6 and a half years I've been without legs.
I no longer am hoping to wake up from some crazy dream to see if my legs have magically reappeared. (That actually ended around a year after my legs were blown off).
I don't know that I'm significantly more comfortable about going out in public and constantly having wandering eyes check me out, but it has improved from year one up until now. I was always kind of a homebody anyways, so I don't usually get any crazy desire that I need to be traveling or going out that much as it is.
I think it just takes experience and figuring out how to do things in my new body that just makes things easier. I'm fortunate that there aren't any other side effects of being an amputee that I have to deal with other than not having legs. There are still frustrations of not being able to do certain things, and it takes some getting use to when new situations pop up. I do have concerns about not being able to do some physical things when I become a father, but I figure that is another thing that will have a learning curve that I will just have to adapt to when a new situation arises.
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thatgimpyguy
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Post by thatgimpyguy on Jul 25, 2012 16:51:59 GMT -5
I think it really has to do with both the situation you grow up in, and the severity of your disability. I think both brace4impact and dystrophian are correct in their points. In some cases, born wheelers are treated as children throughout their lives, whether or not their cognitive abilities match that of Stephen Hawkings or Steve-O. For example, I have a form of muscular dystrophy, which forces me to use a chair and all that jazz. Yet, my parents threw me into the able bodied cage fight just like any other kid. So, I was lucky in that I was treated like a normal child smart ass. However, I used to volunteer as a counselor at a gimpy summer camp and I ran into campers, who weren't as gimpy as I was, who were treated like 5 year olds. There was one kid, who had muscular dystrophy, not affecting his intelligence, mind you, who said to me, when I asked, "So, what are you gonna in your senior year of high school?" He says, "Probably learn how to read." That blew my mind! He was 17, no mental disability, and because of his being sheltered, didn't know how to read. So, I can only imagine what he's gonna go through when he's thrown into the real world. It's sad, but again, I think it all boils down to circumstance. The other thing is, even if you're "used to it," you'll never be 100% "okay" with it all the time. I would imagine every wheeler going through ups and downs of their wheelerness.
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Post by devogirl on Jul 25, 2012 20:49:48 GMT -5
There was one kid, who had muscular dystrophy, not affecting his intelligence, mind you, who said to me, when I asked, "So, what are you gonna in your senior year of high school?" He says, "Probably learn how to read." That blew my mind! He was 17, no mental disability, and because of his being sheltered, didn't know how to read. So, I can only imagine what he's gonna go through when he's thrown into the real world. It's sad, but again, I think it all boils down to circumstance. Oh my god That makes me so angry! How could his parents let that happen? I don't think it boils down to circumstance in general, with congenital disabilities, the parents' attitude makes a huge difference. But I don't want to derail RC's initial question. A quad I knew said it takes 10 years to mentally adjust to SCI. Do you guys agree?
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Post by Ximena on Jul 25, 2012 20:52:00 GMT -5
Oh my god That makes me so angry! How could his parents let that happen? I don't think it boils down to circumstance in general, with congenital disabilities, the parents' attitude makes a huge difference. I would imagine, not just the parents but also extended family as well? Especially if it's an inherited disorder?
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Post by janewheeler on Jul 25, 2012 21:25:50 GMT -5
I think most families do the best they can. Sheltering someone may not be the most appropriate thing, but (speaking as someone with a disabled relative) I'd imagine there are all sorts of reasons that might happen. Some parents might feel guilty for causing the disorder/injury, whether or not they knew about it or could have prevented it. Others just simply don't know what's out there, that there are other ways to live. It's a completely different experience with every person.
I'd imagine a lot of parents, regardless of whether their kids have disabilities, would do anything they can to keep their kid from feeling pain or failure. Sometimes, though, that ends up being way worse than actually failing and learning from it.
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Post by brace4impact on Jul 25, 2012 21:39:24 GMT -5
When I went to university, they had orientation for disabled students. The counselor said "you know if you need a longer time allowance to take tests, you can have that." I told her "no, I'm good," and she looked kind of shocked, she was expecting me to take advantage of it and kept trying to persuade me to do it. I told her "I don't need it, and if I didn't know the answer to a question in one hour, I'd likely be just as stumped in two hours. I uh...didn't go back to the disability resources center much after that. There are those who really need help like that. Fine. But I believe on the minimum allowance concept. Allow the minimum assistance to get it done without going further. Meh, just my rant.
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Post by Deleted on Jul 25, 2012 22:45:59 GMT -5
I hate it. I literally wake up every morning and my first thought is "fuck". I don't know if its the fact I'm in a wheelchair or that my life is "everyday is exactly the same".
The wheelchair DOES keep me from doing what ever the hell I want. I was not built to be in a chair all day. I was born with a wanderlust. Even now I could pack a bag and leave my place and everything in it with a word.
Since I've been in a chair things get good, go bad, get better...just like everyone else. But if I'm honest? I can't really remember being happy. There are many times where I am sated and cheerful and make those around me laugh their asses off....but sometimes its just a facade. I do it because I KNOW its tired and bad vibes affect those around me and that is a shitty trip to lay on someone looking for some social fun.
I've said that I haven't accepted it and never will but I am at peace with it.....at the time I thought that was true but the dark, cold unfair mind set still comes to visit.
The paralysis doesn't just affect your body it affects the mind, it affects your passion and drive and if you don't have those you lack purpose and if you lack purpose everything loses flavor.
Some can adapt, they have the brain pan to succeed. I consider myself a smart guy but NOTHING interests me. Nothing sparks passion in me enough to engage the drive there for I lack purpose.
Now to seriously fuck with your mind. I've been in a chair since I was seventeen and this August 24th will be my 19th anniversary.
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