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My first post-injury outing

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    #16
    I will never forget my first public appearance at college in my chair. Two females getting a late start at post secondary education looked over at me as I was pushing towards one of the buildings and said: "I think it is so nice they make things so people like that can go to school".

    Now I have yet to figure out what sort of a person like that I am but I am certain those to sanctimonious ladies are total assholes.

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      #17
      Orange, this gets easier with time. A good rehab program would expose you to the "Real World" in small but increasing doses. This increases your self confidence, but also thickens your skin for the stares, etc. that are a reality of life in a chair.

      Have you given up on going to a more expert SCI rehab program such as Craig or BC Rehab?

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


        #18
        Originally posted by orangejello
        Thanks everybody for the reassuring words . I know it will get easier with time. It was just a bit of a “shock to the system” to go out for the first time, to say the least. I am still in retreat mode right now. I've been obsessing over how badly I thought it went actually. But my rehab staff seem pleased and everybody told me I handled things very well. The plan is another short trip next week. So I guess I will just hope that one goes better.

        The staring was defiantly really hard to take. I know that people don’t mean to do it, but that doesn’t make it any easier to deal with at this point in time. As Northquad says, I am sure that I was making it much worse in my mind than it really was. And that makes sense. I am not used to this “new me” yet. I am extremely self-conscious almost to the point of paranoia. My sister came along for moral support and that ended up being a bad thing. She got really upset at the staring. For the most part it wasn’t all that bad. People would take a quick look and that was it. I think she was having a harder time dealing with it than me. But when we were at the coffee shop one table of people beside us would just not let up. My sister is a wonderful person, but a tad emotional. To my horror she ended up confronting them about it. At that point I was like “okay I need a hole in the ground I can just drop into.” I probably won’t be going out with her again for awhile lol.

        Other than that, the other difficulties are just things that I am sure will resolve themselves the more I go out. Getting a system established that will work for me. Like your wife rfbdorf I froze trying to get across a street. Also a few other times. I had a whole entourage of rehab staff with me, so I knew nothing bad was going to happen. But I kept panicking. Actually with all the staff hovering over and around me, I felt like I had my very own Secret Service detail.

        I'll post an update after the next trip.

        I know this is not a laughing situation, but I LOVE your sister. Please dont be too upset with her. It might be her way of dealing with her first time out too.

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          #19
          Originally posted by Jesse's Mom
          ...Please dont be too upset with her. It might be her way of dealing with her first time out too.
          I'm sure that's the case. This is something she, as well as you, needs to get accustomed to. Speaking as the AB half of our marriage, SCI has a very strong impact on those who are very close to the SCI'd. Obviously I can't say it's as strong as on the SCI'd, but it may be what's hit me the hardest in my lifetime.

          I found myself feeling extremely protective and actually hostile towards anyone whom I thought might be not getting out of my wife's way fast enough, cars that didn't give her enough room, etc. That hostility was very foreign to me - it was almost like a complete change of personality. That took a long time to get over.
          - Richard

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            #20
            Originally posted by SCI-Nurse
            Orange, this gets easier with time. A good rehab program would expose you to the "Real World" in small but increasing doses. This increases your self confidence, but also thickens your skin for the stares, etc. that are a reality of life in a chair.
            (KLD)
            Oh for sure and that is the approach my rehab staff has been taking with me. They've been very working hard to prepare me for going out into the world. As much as it felt like I was being thrown to the lions, we've been gradually building up to and practicing non-stop for this first outing. But I suppose you can only practice for so long before you just have to get out there and do it. It was actually a very short outing, although it felt like it lasted for days lol. We've been working on a plan that will gradually increase the time I am out and trying different places and situations. Coming on the heels of a very difficult first outing, I am very tempted to say I never want to go out in public again. But that's not true. Like you say, I just need to build up my self-confidence.

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              #21
              OJ,

              It will get better. How did you do physically? My first trips out were really tiring.
              Foolish

              "We have met the enemy and he is us."-POGO.

              "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

              "Dream big, you might never wake up!"- Snoop Dogg

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                #22
                OJ, sounds like your first outing went alot better than Adams. He was driving down the sidewalk and his vent fell off the back of the chair so he was dragging it behind him. Everyone was yelling at him to stop so, he stopped, backed up and ran over the vent. He was ok until he figured out he couldn't breathe, then he was in a panic. So they had to bag him on the side of a very busy street in Atlanta until someone came with a new vent. He said after that, going out was as piece of cake. He got all the bad out the first time. As far as the staring, I get more offended than he does, he just asks them, "You wanna know what what happened to me?" Breaks the ice and he meets alot of people that way.

                Comment


                  #23
                  OJ...

                  Where are you in rehab?

                  Comment


                    #24
                    You are probably not going to believe this djdiver, but something almost exactly like that did happen on this outing. I managed to ram myself into an automatic door on my way out of the hospital (I'm still driving like Mr. MaGoo). The circuitry hose popped off and I ran over it trying to get myself away from the door. I think that was why my sister's nerves were shot. This kind of thing has happened to me before, although not quite like this, granted.This time was the worst. The vent alarm was squealling and I was freaking out. There was a spare one in my bag so the staff with me very quickly set to fixing it.

                    There was never any real danger, but I was still panicking. I think my sister thought I was going to die right in front of her. I don't think she's ever seen me be bagged by hand before. Unlike my other three siblings, she hasn't spent a great deal of time with me since my injury. The others have been trained on my vent care (including what to do in a scenario like this), but this is all new to her. So it's more than understandable that she reacted to things the way she did. I didn't mention this incident in my other post because I am still trying to come to terms with it. I am able to laugh about my sister yelling at the gawkers now. Finding the humour in bad situations really helps me deal with them. But it's tough to find much humour in cutting off your own breathing. But I was fine, so as disturbing as the whole thing was, there was no real harm done. Except maybe to my sister's mental health.

                    Originally posted by Jesse's Mom
                    I know this is not a laughing situation, but I LOVE your sister. Please dont be too upset with her. It might be her way of dealing with her first time out too.


                    No I am not that upset with her for sure . Even when she began yelling I was more shocked than anything else. I was definitely embarrassed because, you know, if people weren't staring before, they sure were once she started hollering . Like I said, because she has not seen a whole lot of me like this, she's having a really hard time I think. I guess I didn't realize how hard. The rest of my family is having a hard time too. But they are able to see the progress I have made since those horrible first few months post-injury and that has made things a bit easier. I am sure back then they were as stressed out and afraid and ready to snap as she was this week.

                    Originally posted by rtbdorf
                    This is something she, as well as you, needs to get accustomed to. Speaking as the AB half of our marriage, SCI has a very strong impact on those who are very close to the SCI'd. Obviously I can't say it's as strong as on the SCI'd, but it may be what's hit me the hardest in my lifetime.
                    I found myself feeling extremely protective and actually hostile towards anyone whom I thought might be not getting out of my wife's way fast enough, cars that didn't give her enough room, etc. That hostility was very foreign to me - it was almost like a complete change of personality. That took a long time to get over.
                    You know rtbdorf, sometimes I really forget how hard this has hit the people in my life. I usually only realize it when I've treated one of them like garbage because I am not feeling well or am frustrated or depressed. That doesn't make me feel so good and it is something I have trying very hard not to do.

                    But I have seen how protective of me my family can be, and like you say, there are times it can border on hostility. My boyfriend and my father are the "worst" for that. By worst I don't mean anything negative. They just seem to be the two who react to things the strongest. Although I am not sure if either of them would have yelled at the people in the coffee shop lol. This is going to gain my sister a degree of infamy within our family I suspect

                    I wanted to reply to some of the other comments people made and questions I was asked. I am out of time and (and energy lol) so I will do that later. But thank you all again. Your stories and comments are always a big help to me
                    Last edited by orangejello; 8 Sep 2006, 7:38 PM.

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                      #25
                      The only thing I can say is that everything you experience is normal. This is a dreadful, dreadful experience, a devastating injury. It takes enormous strength and courage to endure each and every day. I believe that you are young enough that new therapies will be able to give you back your breathing, and some movement and functionality, perhaps more. That´s what I believe "the cure" will consists of for this generation: regaining breathing, regaining certain muscle groups, one at a time perhaps, new and sophisticated electronic orthoses, better surgeries, better therapists and better therapy devices, and so on. From that point of view, there is already a "cure" for SCI, one that was not available a decade ago, because every year better therapies, better adaptive equipment, and better drugs become available. High lesions that previously were considered not apt for orthoses are now being accepted for braces. i am sure that orthoses for quads are coming next. Also, for some reason quads have it easier to recover than paras in some aspects, perhaps due to the enormous destructive force it takes to break a thoracic vertebra (in my case, I was hit and run over by a truck).

                      Therefore, you must thing of SCI as a long term process, one which is at its worst point right now, and will ever so slowly become better and better for you over years and years, with sudden improvements followed by plateaus and then more improvements. You are on a path to gradual, slow improvement. Don´t believe whoever says otherwise.

                      I am also a great believer in doing what your body requests. If you feel the need to rest, rest. If you crave lemons, eat lemons. Listen to your body, and your body will listen to you.

                      Best of luck.

                      ETA: I also love your sister
                      Last edited by Cripply; 8 Sep 2006, 8:59 PM.

                      Comment


                        #26
                        Humor can help to get you through the very worst of this. It sounds like you have some strengths in that area already!

                        Orange, are you now using any voice recognition software in addition to the eye movement system?

                        Did you give up on going to either BC Rehab or Craig?

                        (KLD)
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                        Comment


                          #27
                          Originally posted by Foolish Old
                          OJ,

                          It will get better. How did you do physically? My first trips out were really tiring.
                          Yes it was very tiring for me too Foolish Old. But I was pretty much tired before I even left the hospital lol. I don't have a whole lot of stamina or energy right now. But even that seems to be better than it was even just a few weeks ago. I was completely wiped out physically and emotionally by the time the trip was over.

                          Originally posted by kld
                          Humor can help to get you through the very worst of this. It sounds like you have some strengths in that area already!

                          Orange, are you now using any voice recognition software in addition to the eye movement system?
                          Yes it is amazing what a little humour can do to help make terrible things just a bit more managable, isn't it? Everything is still so overwhelming for me. Trying to find something funny in a very unfunny situation helps.

                          I still use my eye gaze system for some things. But I have been working very hard with a speech therapist and I can now use voice software too. I am not as good with it yet because I still have a lot of issues with my voice quality and patterns. But it’s slowly getting better. Voice is so much faster, but sometimes I like the privacy of the eye gaze even if it is more work. I sometimes stay up late working on my computer too, so I think the night nurses appreciate me not using voice then lol.

                          Being able to use a computer like this has really been one of the keys to my getting better. Between the eye gaze, voice, headmaster, and wireless internet I can do much more than I thought I would be able to. I have a laptop mount for my chair too, which is good because now I don’t always have to depend on somebody to help me get set up to use it.

                          About where I am doing my rehab I don’t really want to post publicly due to an incident I had with somebody. It’s probably my own fault for posting so much personal information because it didn’t take this person very much to find out exactly how to get in touch with me by telephone. I will answer everybody who asked privately. It’s not a secret, but I just want to be careful after what happened. I am sure it was an isolated incident, but I don’t want to take any risks. I am a little behind with my emails and private messages, but I will get back to everybody who asked.
                          Last edited by orangejello; 9 Sep 2006, 3:53 PM.

                          Comment


                            #28
                            I can relate to your situation,But I feel my injury level prevents me from sharing alot of my personal experince.I would say get your streghth from people that have been where you are ,and not people that think they know what its like,It just pisses me off for someone thats not even injured to post on here like they know what the hell its like.
                            All I can say is try and be as indepenent as you can be and that will give you hope.

                            Comment


                              #29
                              Originally posted by socalnut
                              I can relate to your situation,But I feel my injury level prevents me from sharing alot of my personal experince.I would say get your streghth from people that have been where you are ,and not people that think they know what its like,It just pisses me off for someone thats not even injured to post on here like they know what the hell its like.
                              Originally posted by socalnut
                              All I can say is try and be as indepenent as you can be and that will give you hope.


                              Hi socalnut,
                              I don't want to assume to understand what you are going through right now. At 8.5 months post injury my anger has subsided a bit. Not a lot. But I am trying to let go of it as best I can. Unfortunately though, I think the anger has just been replaced now with a deep sadness. It's tough for sure and I still lash out at people when I think they are presuming to understand how I feel.

                              But in this particular thread at least two people who are not sci have taken the time to offer their thoughts on this first outing and to lend their support. My personal opinion is that somebody who has had to watch a spouse or a child struggle with sci, or a medical professional who has treated hundreds of patients with sci over the course of a career might actually have a pretty good idea of what it is like. Since I started posting here I have also had people whose parents or good friends have sci reply to things I have written. For sure they can't know 100% exactly what it is like. But when you love somebody with sci, I think you can understand it a great deal--more than some people on these boards give the AB people who post here credit for.

                              I am not trying to start an argument or put down what you posted. It's perfectly valid to feel the way you do. Like you, this is all so new to me. I often don't know what to do or what to think. But my experience with the non sci people who have taken the time to respond to any post I have written in the past two months has been nothing but positive.

                              Take care
                              orangejello

                              Comment


                                #30
                                Originally posted by socalnut
                                I can relate to your situation,But I feel my injury level prevents me from sharing alot of my personal experince.I would say get your streghth from people that have been where you are ,and not people that think they know what its like,It just pisses me off for someone thats not even injured to post on here like they know what the hell its like.
                                All I can say is try and be as indepenent as you can be and that will give you hope.

                                As you and other people who are SCI have alot to offer in terms of help or encouragement, we as parents of someone SCI have things to offer also. I would never dream of saying I know what you are going through. It is terrible, I know that. Nothing can compare. But that is the great thing about this website. If you have a question or concern, someone on here can help, whether it be an answer from a SCI or the parent of someone who is SCI. Please dont get upset. It certainly is not our intention to say we know what you are going through. We just feel that we have certain things to offer. If we are on this site it is because our lives have been shoved this way.

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