Help
hey,
I missed reading and sharing. Something about this silence has allowed me to re-focus. I can see myself gaining insight to my feelings. Thanks to you guys. But today just blew my mind. I told my husband I contacted care givers of people with sci. Reaction: Aghast!!!! A true shudder went through his body. And I had to process this. Is it because saying publicly you are a quad confirms it? Or is it because of hackers and the vulnerability of his wife?
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hackers
why would anyone want to hack a sci place?
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#2
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- Spinal Injury Level / Relationship:Married to a T-12 para
Posted 26 March 2006 - 10:36 AM
Hi Onion,
I think that if I had found a forum like this six years ago when my husband was newly injured (which I wish I had because it would have helped me immensely), my husband's reaction would have been the same as yours....
However, although I don't think that he would enter the forum even now, he knows that I do and he's actually quite postitive about it - he knows by now that I need to find support wherever possible. So whatever the reason, I wouldn't take it to heart if I were you - he'll probably get over it in time and if you are getting any benefit whatsoever - just carry on and enjoy!
Regards,
Rosalie
I think that if I had found a forum like this six years ago when my husband was newly injured (which I wish I had because it would have helped me immensely), my husband's reaction would have been the same as yours....
However, although I don't think that he would enter the forum even now, he knows that I do and he's actually quite postitive about it - he knows by now that I need to find support wherever possible. So whatever the reason, I wouldn't take it to heart if I were you - he'll probably get over it in time and if you are getting any benefit whatsoever - just carry on and enjoy!
Regards,
Rosalie
#3
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- Country:Brixham, Devon
- Spinal Injury Level / Relationship:C5/6 Tetraplegic
Posted 26 March 2006 - 01:54 PM
You didn't say whether your husband was disabled or not. I think some people just can't deal with disability. It's easier to pretend it doesn't exist than actually face it full on. That's my opinion anyway.
I can remember years ago when I was about 10, I started walking down the alley and I saw someone in a wheelchair coming towards me. I was so terrified that actually backtracked and took the long way around. If only I knew what the future had in store for me.
I can remember years ago when I was about 10, I started walking down the alley and I saw someone in a wheelchair coming towards me. I was so terrified that actually backtracked and took the long way around. If only I knew what the future had in store for me.
#4
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Posted 28 March 2006 - 01:37 AM
rosalie, on Mar 26 2006, 10:36 AM, said:
Hi Onion,
I think that if I had found a forum like this six years ago when my husband was newly injured (which I wish I had because it would have helped me immensely), my husband's reaction would have been the same as yours....
However, although I don't think that he would enter the forum even now, he knows that I do and he's actually quite postitive about it - he knows by now that I need to find support wherever possible. So whatever the reason, I wouldn't take it to heart if I were you - he'll probably get over it in time and if you are getting any benefit whatsoever - just carry on and enjoy!
Regards,
Rosalie
I think that if I had found a forum like this six years ago when my husband was newly injured (which I wish I had because it would have helped me immensely), my husband's reaction would have been the same as yours....
However, although I don't think that he would enter the forum even now, he knows that I do and he's actually quite postitive about it - he knows by now that I need to find support wherever possible. So whatever the reason, I wouldn't take it to heart if I were you - he'll probably get over it in time and if you are getting any benefit whatsoever - just carry on and enjoy!
Regards,
Rosalie
when i first told my girlfriend that i was visiting this site, i was expecting to get really badly told off, but i didnt. she was really thankful that i had been because this site has given me so many answers that she couldnt have, cos im terminally curious. it has also helped her to osme extent, from the stuff that i have actually had to explain to her, which both of us never thought would happen.
i think sometimes people just have a bit of a hard time accepting that some people are actually disabled
#5 *onion*
Posted 28 March 2006 - 05:07 AM
Hello ironside, Rosalie, jc 401
I walk around the topic of quadriplegic. We do not discuss the fact that he is disabled in anyway. Part of me does not want to burst the bubble. He firmly believes in his mind this is a temporary position. And wellness is just around the corner. Who am I to say: you need a reality check. It is early, only since november, and improvement is still viable. I guess i asked this question when I first joined this group: when do you know, when do you have to accept what is, is what is? I'm a very practical person. He's a dreamer and dreamer's invision that what can be. soooo i'm here, and he is not and he shudders when he hears i've sought this group. But now he knows i have. And I try desperately to erase you all, delete history, cookies, e-mails. For in some way my sharing my thoughts with you is a betrayal. But one i needed, one i sought, for i knew i was in trouble, close to. Oh yikes i am spilling too many words:(
I walk around the topic of quadriplegic. We do not discuss the fact that he is disabled in anyway. Part of me does not want to burst the bubble. He firmly believes in his mind this is a temporary position. And wellness is just around the corner. Who am I to say: you need a reality check. It is early, only since november, and improvement is still viable. I guess i asked this question when I first joined this group: when do you know, when do you have to accept what is, is what is? I'm a very practical person. He's a dreamer and dreamer's invision that what can be. soooo i'm here, and he is not and he shudders when he hears i've sought this group. But now he knows i have. And I try desperately to erase you all, delete history, cookies, e-mails. For in some way my sharing my thoughts with you is a betrayal. But one i needed, one i sought, for i knew i was in trouble, close to. Oh yikes i am spilling too many words:(
#6
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- Spinal Injury Level / Relationship:incomplete cauda equina
Posted 29 March 2006 - 07:15 AM
Hi Onion
I can relate to your posting. My partner recently left me after an accident which my family suffered on New Years Day. However, I wont go into that now. Anyway, she was the same. I joined Andy Lee's site first (only came here recently). I found the support I got and the help were tremendous,howver, she could not understand why I needed that.
It is 16 years since my accident and I STILL meed support and answers. You are so right. November is not a long time and believe you me, you can still improve 18 months after a trauma. I keep talking about my mate in USA who is a C5 quad and in the beginning could not move a muscle. Then, his feet tingled and he has recovered from the feet up. Now, he has complete feeling/sensation up to the nipples. Above that, nothing. He can move his legs and left arm normally, however, the right is still weak. He is at present in rehab learning to walk with 2 sticks. Doing a darned good job too by all accounts.
However, I do agree, that sometimes you need a reality check. I had FES treatment to help me walk with sticks and even 16 years on still hold out the hope that "one day" I will walk again. PLEASE try not not be too hard on your partner for their beliefs - sometimes it is easier to hope than to face the thought that you will NEVER do something agian. NEVER is a long time. He had a life "then" and this is his life "now". I do hope it gets easier Onion and never fear you are among friends here.
Love to you both.
Gary
I can relate to your posting. My partner recently left me after an accident which my family suffered on New Years Day. However, I wont go into that now. Anyway, she was the same. I joined Andy Lee's site first (only came here recently). I found the support I got and the help were tremendous,howver, she could not understand why I needed that.
It is 16 years since my accident and I STILL meed support and answers. You are so right. November is not a long time and believe you me, you can still improve 18 months after a trauma. I keep talking about my mate in USA who is a C5 quad and in the beginning could not move a muscle. Then, his feet tingled and he has recovered from the feet up. Now, he has complete feeling/sensation up to the nipples. Above that, nothing. He can move his legs and left arm normally, however, the right is still weak. He is at present in rehab learning to walk with 2 sticks. Doing a darned good job too by all accounts.
However, I do agree, that sometimes you need a reality check. I had FES treatment to help me walk with sticks and even 16 years on still hold out the hope that "one day" I will walk again. PLEASE try not not be too hard on your partner for their beliefs - sometimes it is easier to hope than to face the thought that you will NEVER do something agian. NEVER is a long time. He had a life "then" and this is his life "now". I do hope it gets easier Onion and never fear you are among friends here.
Love to you both.
Gary
ALWAYS REMEMBER - The darkest hour is only 60 minutes long and what won't kill you will make you stronger.
cauda equina lesion resulting in lack of ability to walk. Spinal cord undamaged and intact. NOW ABLE TO HOBBLE AROUND ON 2 STICKS AFTER LOADS OF PHYSIO.
cauda equina lesion resulting in lack of ability to walk. Spinal cord undamaged and intact. NOW ABLE TO HOBBLE AROUND ON 2 STICKS AFTER LOADS OF PHYSIO.
#7
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Posted 06 April 2006 - 01:30 AM
i think onion raises a really good question here. How/When do you know that what is, is permanent. How do you know when there is no more chance of improvement?
I have not personally experienced what happens during/soon after an sci, so i really have no idea. my girlfriend had her accident when she was 2, and she is now 16. her injury is C6-7 incomplete. in reality, what chance is there that her condition can improve? i love her for who she is, but sometimes it really pains me to see how she looks at me when im walking around, and wishing that she could.
I have not personally experienced what happens during/soon after an sci, so i really have no idea. my girlfriend had her accident when she was 2, and she is now 16. her injury is C6-7 incomplete. in reality, what chance is there that her condition can improve? i love her for who she is, but sometimes it really pains me to see how she looks at me when im walking around, and wishing that she could.
#8
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Posted 06 April 2006 - 11:58 AM
Hi all,
The other night I was sitting with my husband Avi (para T-11) and another friend (para - higher than Avi - from nipples down) and they were talking about future possibilities with stem cell therapy, etc. They both seem to hold on to the beleif that ONE DAY their situation will improve to a certain degree - maybe not walk but at least regain some sensation and control. Avi was injured 6.5 years ago, our friend 13 years ago. Now, I don't want to rain on anyone's parade
, BUT.... as long as these thoughts are hopes and dreams and no-one clings to them as the gospel truth I think that's fine - everyone needs to hope.... On the other hand, we are living in the here and now where these guys are paralysed. THey both live their lives to the fullest despite their disabilitites and that's great. I think that there has to be some grounding in reality - you can't just sit and wait for something that may never come. I totally understand their hopes, but I must say that I myself am not very confident in them. I don't try to push my own views when they talk about future improvement but I don't really encourage them either....
Onion, I think that the best thing to do in this situation is just stay neutral (even though it can be heartbreaking) but don't let him sit and do nothing even though in his mind "this is just a temporary situation"... he has to work towards functioning in his present situation - is he doing this?
In any case, just stay strong and as supportive as you can be. In my experience, this is the best way that you can help him.
Love,
Rosalie
The other night I was sitting with my husband Avi (para T-11) and another friend (para - higher than Avi - from nipples down) and they were talking about future possibilities with stem cell therapy, etc. They both seem to hold on to the beleif that ONE DAY their situation will improve to a certain degree - maybe not walk but at least regain some sensation and control. Avi was injured 6.5 years ago, our friend 13 years ago. Now, I don't want to rain on anyone's parade
, BUT.... as long as these thoughts are hopes and dreams and no-one clings to them as the gospel truth I think that's fine - everyone needs to hope.... On the other hand, we are living in the here and now where these guys are paralysed. THey both live their lives to the fullest despite their disabilitites and that's great. I think that there has to be some grounding in reality - you can't just sit and wait for something that may never come. I totally understand their hopes, but I must say that I myself am not very confident in them. I don't try to push my own views when they talk about future improvement but I don't really encourage them either....Onion, I think that the best thing to do in this situation is just stay neutral (even though it can be heartbreaking) but don't let him sit and do nothing even though in his mind "this is just a temporary situation"... he has to work towards functioning in his present situation - is he doing this?
In any case, just stay strong and as supportive as you can be. In my experience, this is the best way that you can help him.
Love,
Rosalie
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