hephaestus
Full Member
Posts: 134
Gender: Male
Dev Status: Disabled
Relationship Status: In a relationship
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Post by hephaestus on Aug 8, 2012 23:49:25 GMT -5
I just spent an hour writing a response because I too have SMA, but I accidentally lost
all
of
it.
I am so livid right now. I wish to destroy many planets upon which cute living creatures flourish and caper.
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Post by Ray T on Aug 8, 2012 23:51:41 GMT -5
Sorry to say I have never had a AH HA monent. When they told me that my legs didn't work any more I just said ok and went back to sleep. I can't walk that is all that is diffrent about me now In some ways I think my SCI has improved my life. I know there are a few things I can not do the same as before my accident however if there is somthing I want to do bad enough I find a way to do it. I have yet to find the thing I can't do if i want to bad enough. So to me life is as normal as before I just can't walk doing it. Although I was 33 when I was in the car wreck so i was well into adulthood, maybe that had something to do with it. Anyone else just accept thier cards as they were dealt without much regret? Any of you just move on adapt and get on with life without having a ah ha moment?
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hephaestus
Full Member
Posts: 134
Gender: Male
Dev Status: Disabled
Relationship Status: In a relationship
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Post by hephaestus on Aug 8, 2012 23:52:38 GMT -5
Really? F5 button = refresh? That makes so little sense.
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Post by Ray T on Aug 8, 2012 23:56:39 GMT -5
ok you lost me?
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hephaestus
Full Member
Posts: 134
Gender: Male
Dev Status: Disabled
Relationship Status: In a relationship
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Post by hephaestus on Aug 9, 2012 0:02:31 GMT -5
Oh yeah, sorry for spamming. If you look above your response, you'll see that I lost an hour's worth of text I had written in response to thatgimpyguy. Lost. Forever. Irredeemably. So yeah, currently full of luddite rage right now.
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Post by Emma on Aug 9, 2012 0:26:01 GMT -5
I feel for ya hephaestus. I have done similar things and now have a habit of randomly hitting copy in in the middle of typing long text responses.
It's probably too late by now but I think PD is one of those sites where you can hit the back button and the text that seemed to be lost comes back.
oh and BTW welcome!
Alright no more hijacking this awesome thread. I want to read more responses.
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vancityippy
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Gender: Female
Dev Status: Devotee
Relationship Status: Married/Domestic partnership
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Post by vancityippy on Aug 9, 2012 1:52:41 GMT -5
When the rest of the kids started to come out of their houses and started playing in the front lawns, suddenly I didn’t feel the need to leave anymore. They were all different, so why couldn’t I be? Somehow seeing in that moment all the differences made that eight year old feel normal again. And even though the road he was on was going to be difficult, that sometimes it may feel as though high fiving a bus might be the easiest way to go, being the way he was wasn’t broken. It wasn’t a mistake…I saw myself back in that tunnel again, the one in the darkest of darkness, but this time, instead of seeing nothing in front of me, there was a small spark again. Not a spark that would make me better, not a flicker that would cure me. No, the light at the end of the tunnel was hope in myself. Hope that no matter what my life was going to be like, I wasn’t going to let it be any different than the other kids in the lawn. This is a very enlightened realization about "difference" for an 8 year old but also very practical... There is a woman who has a son with CP and a website and educational materials called Disability is Natural...Anyway, her thought and rationalization, (it's one that I relate to) is that disability is not broken, impaired, or lesser in any way, and it's in fact not that different. It's a label we apply to certain groups that require access to particular services set up in our society. Any physical or cognitive "difference" is just another variation on the spectrum of being. We all have strengths and shortcomings, we all struggle and suffer to varying degrees, we all need help and depend on others for various things, we all perceive and experience our lives through our own lens and what seems normal to one person, may seem completely strange to another. Essentially, that disability is a natural part of the human experience and that the label of "disability" is a social construct that exists so individuals with particular needs can access services that can help them navigate the structures we have set up in society. Anyway, I could go on a longer sociological rant about this topic but... really cool to me that you had that realization as an eight year old. I've tried explaining that perspective to full grown adults and they don't get it.
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Post by BA on Aug 9, 2012 10:23:49 GMT -5
Our member 'E' has said many times that a person is only as disabled as his environment makes him. Heph (I will call you that for short). Redo your post. I have found that when I lost an entire post like that, that when I re-wrote it, it was better than the first!
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Post by Kid A on Aug 9, 2012 13:00:42 GMT -5
When the rest of the kids started to come out of their houses and started playing in the front lawns, suddenly I didn’t feel the need to leave anymore. They were all different, so why couldn’t I be? Somehow seeing in that moment all the differences made that eight year old feel normal again. And even though the road he was on was going to be difficult, that sometimes it may feel as though high fiving a bus might be the easiest way to go, being the way he was wasn’t broken. It wasn’t a mistake…I saw myself back in that tunnel again, the one in the darkest of darkness, but this time, instead of seeing nothing in front of me, there was a small spark again. Not a spark that would make me better, not a flicker that would cure me. No, the light at the end of the tunnel was hope in myself. Hope that no matter what my life was going to be like, I wasn’t going to let it be any different than the other kids in the lawn. This is a very enlightened realization about "difference" for an 8 year old but also very practical... There is a woman who has a son with CP and a website and educational materials called Disability is Natural...Anyway, her thought and rationalization, (it's one that I relate to) is that disability is not broken, impaired, or lesser in any way, and it's in fact not that different. It's a label we apply to certain groups that require access to particular services set up in our society. Any physical or cognitive "difference" is just another variation on the spectrum of being. We all have strengths and shortcomings, we all struggle and suffer to varying degrees, we all need help and depend on others for various things, we all perceive and experience our lives through our own lens and what seems normal to one person, may seem completely strange to another. Essentially, that disability is a natural part of the human experience and that the label of "disability" is a social construct that exists so individuals with particular needs can access services that can help them navigate the structures we have set up in society. Anyway, I could go on a longer sociological rant about this topic but... really cool to me that you had that realization as an eight year old. I've tried explaining that perspective to full grown adults and they don't get it. +1 ;D
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Post by Max on Aug 9, 2012 14:19:20 GMT -5
After following this thread for a while I feel I have to tell my story. I too have had a few moments of realisation, of getting the facts presented loud and clear. The first time I can remember is when I was about 5 I think. Since I am disabled from birth I didn't know how to walk yet. had been crawling a bit longer than usual, but at a certain point my physical therapist presented me with a pair of crutches. It was time for me to get used to them. I burst into tears, not wanting to use crutches. I wanted to just walk like everybody else, but that just wasn't going to happen.
Another moment I was painfully confronted with my disability was at the first highschool dance. By then I got around in a wheelchair pretty much all the time. After the first half hour of hits and housemusic, the slowdancemusic came. Even if I didn't have a girlfriend, the sight of all those boys and girls dancing with each other all romantically made me realise I would never be able to be like that. The next thirty minutes I spent in a dark hallway moping and feeling shit.
About two years later my family and I were all packed to go camping in the summer. My wheelchair was supposed to be stored folded on the luggagerack on the roof. Even though it would be covered with a tarp, I remember asking my parents if my wheelchair could be in the car. The thought of people being able to see (or so I thought) my wheelchair on the roof made me very uncomfortable.
It has been over 15 years since these moments of realisation, but every now and then something slightly similar pops up in my head. I guess I'm not as comfortable with my disability as I should be, could be, or would hope to be.
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Post by Pony on Aug 9, 2012 19:16:48 GMT -5
Hey, I was thinking Mr. Gimpster....try Reader's Digest!!! You would have to shorten it to 500 words, I think, but they love those kind of stories that end on positive note after a dark tunnel. Plus, they pay damn good. Just an idea bcoz I used to love reading that mag, and our writing style sure was good. Also, the story itself is eye-opening on many fronts!!
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Post by faith on Aug 9, 2012 20:22:29 GMT -5
This thread is the reason I continually come back to PD. No where else on the web are there REAL stories... from the heart and soul... real experiences, thoughts and emotions as expressed here. Thank you all.
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Deleted
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Post by Deleted on Aug 10, 2012 9:23:39 GMT -5
Hey Max, that was a really honest and revealing post, thanks for sharing it. Some of your experiences just had never really dawned on me
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Post by Max on Aug 10, 2012 10:00:58 GMT -5
Hey Max, that was a really honest and revealing post, thanks for sharing it. Some of your experiences just had never really dawned on me I was in a sharing mood when I wrote it. Didn't try to edit it, it just came out like that .
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Post by spurs2000 on Aug 10, 2012 10:32:46 GMT -5
My first true realisation of life changing was accidentally caused by my father fairly soon after my injury and still whilst lying in bed with skull traction hanging from my head and a ventilator connected to my tracheostomy my father in his infinite wisdom strolled into see me that morning and for some unknown reason came out with the statement "what shall I do with your golf clubs?".
As a 15-year-old unable to speak I think he saw into my eyes and the tears that had developed and realised the gravity and depth of his statement. He immediately burst into tears and we had some sort of father-son hug type business. He immediately apologised albeit too late, that comment hit home that life would never be quite the same! He looked for a way to try and console me and him. He surprised me again by saying let's graffiti our names and the year 1985 on the back of the mini television. My dad is a cool guy!
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