[WheelzNRollBaby]

Hello, this is my first post here, but I have read through a few posts over the past month or so and thought this looked like a place I might gain some perspective and understanding, as I have been really struggling with my situation lately. This is a pretty long one for a first post.... it's taken a while to find the words, I hope you don't mind me venting my woes.

I'm 28years old, I have a T10/11complete injury, just over a year ago a car came off the road and collected me as it took a corner too fast. I didn't see it coming, woke up in the spinal unit, completely disoriented, not much else really hurt but my spine.... I think I still feel a sense of deep shock over it all. Life since has been something to get used to, to say the least... I won't bore with the details... it's a well-told story round here I'm sure, with rehab and all the rest. I found going home the hardest. My dilemma is more emotional I suppose, as my days just seem to keep getting darker, and I see no way to come to terms with this "new life" of mine that everyone keeps talking about. It's like this isn't really me, this isn't actually happening to me, it's just some freaked out fantasy... I don't know what I'm trying to say really. Just that I honestly don't recognise myself as this chair-bound, needy person, I can't find a way to see any light in my situation right now, everything's changed, everything's hard.. I'm pushing away my friends, my boyfriend is trying so hard to be there for me, but I just can't seem to be able to accept their condolences and their sympathy. To be honest, I feel sorry for him, feeling so bound to me that he sticks around even now... it saddens me that he will have such a difficult life with me now if he does stay. I want him to be happy. So I figured I might find something akin to a reality check at a place like this forum. You all seem so genuine, and have such real and interesting lives, from the few threads I've read through so far.

I can see you have found a way to believe you can have a happy and fulfilling life, despite your disabilities... and I truly envy this. I want to be happy and get on with life. I want to wrap my head around this... my counsellor says this feeling may last for years to come and that thought really scares me because I won't last the distance. They say I'm so lucky it wasn't worse, I can help myself, I can get by, others are far worse off and this I know, and so my own depression seems so wrong, I don't have the right to be still in these pits. I hate being depressed and try to struggle against it, it keeps eating away at me, I don't trust myself. I feel guilty that so much has to be changed to accommodate me everywhere I go, people rushing aroud to move furniture and always asking if I need anything, am I comfortable.... I resent people's well-meaning offerings and I hate being that way. I don't really know what I'm trying to say. I guess a bit of a vent is what I need and so here's my vent.... as none of my doctors or friends or family or counsellors or therapists seem to know the words to convince me that things will be ok again. I hate this ugly self-pity I see in myself, I want to heal already and feel better about things. I can't live with this horror forever can I?

[sfultong]

"It's like this isn't really me, this isn't actually happening to me, it's just some freaked out fantasy..."

Well, you have to come to terms with this. I think it's been relatively easy for me, because I don't see myself as wheelchair-bound person just the way I didn't see myself as a walker/stander-upper person before my injury... legs were something I just took for granted. Now I take my wheelchair for granted.

One difficult adjustment for me, was that I used to view myself as a nimble/agile person, and the wheelchair isn't so nimble. So that has been a small loss to my identity. Another adjustment was/is loss of virility... my sexual function isn't nearly what it was.

But these are two small things in the face of who I think I am. Why should my legs and their ability/lack of ability play a large part in my identity?

I still am pretty much independent, and I see no reason that you shouldn't be as well, as long as you live in a country with decent wheelchair accommodations. I don't feel bad having people help me with things, because I know I can usually do it myself, so it's not like I'm relying on them... plus, I imagine most people probably feel good about themselves when they help a person in a wheelchair, and I don't have a problem with making people feel good.

Whether you view what happened to you as a terrible misfortune or a temporary setback in your life, it's all in your head.

[Kevin]

Except for the fact that I'm able bodied, I could have written everything you just said; no light, everything is hard, this isn't really me, pushing away friends, etc, etc. I go through the exact same thing. It's called depression and it's a real life stopper. In my opinion, it's not your injury that's the cause of your problems, it's depression (your injury may the be cause of the depression, it probably is, but the injury isn't what's stopping you from living life to the fullest). Again in my non-professional opinion, it doesn't sound like you have clinical depression. Your depression came from a very real source and has very real issues that need to be worked through.

I always thought I could handle my depression on my own, but as last year proved, that wasn't the case. I would suggest counseling preferably with someone familiar with SCI. It doesn't have to take years to get over this. Personally, I would have been very insulted if someone had told me that. There are many people out there who didn't take years to get back to living. I'm sure they didn't do it by taking to heart that the process could take years. 'Could' doesn't mean it has to. I would also look for an OT or PT who specializes in SCI and get involved in wheelchair sports. Between OT/PT and wheelchair sports you may find out just how amazingly independent you really are. Sometimes depression can be dealt with by changing perspective on the source of the depression.

Well, I know I'm pretty much just rehashing what you've already said in your post so I won't go on any longer. If you ever want to talk to someone who understands depression feel free to PM me. I'm also an OT student specializing in SCI, so if you'd like to talk to a future OT you can PM me.

Sorry to ramble...

WheelzNRollBaby, on Jun 30 2007, 07:10 AM, said:

Hello, this is my first post here, but I have read through a few posts over the past month or so and thought this looked like a place I might gain some perspective and understanding, as I have been really struggling with my situation lately. This is a pretty long one for a first post.... it's taken a while to find the words, I hope you don't mind me venting my woes.

I'm 28years old, I have a T10/11complete injury, just over a year ago a car came off the road and collected me as it took a corner too fast. I didn't see it coming, woke up in the spinal unit, completely disoriented, not much else really hurt but my spine.... I think I still feel a sense of deep shock over it all. Life since has been something to get used to, to say the least... I won't bore with the details... it's a well-told story round here I'm sure, with rehab and all the rest. I found going home the hardest. My dilemma is more emotional I suppose, as my days just seem to keep getting darker, and I see no way to come to terms with this "new life" of mine that everyone keeps talking about. It's like this isn't really me, this isn't actually happening to me, it's just some freaked out fantasy... I don't know what I'm trying to say really. Just that I honestly don't recognise myself as this chair-bound, needy person, I can't find a way to see any light in my situation right now, everything's changed, everything's hard.. I'm pushing away my friends, my boyfriend is trying so hard to be there for me, but I just can't seem to be able to accept their condolences and their sympathy. To be honest, I feel sorry for him, feeling so bound to me that he sticks around even now... it saddens me that he will have such a difficult life with me now if he does stay. I want him to be happy. So I figured I might find something akin to a reality check at a place like this forum. You all seem so genuine, and have such real and interesting lives, from the few threads I've read through so far.

I can see you have found a way to believe you can have a happy and fulfilling life, despite your disabilities... and I truly envy this. I want to be happy and get on with life. I want to wrap my head around this... my counsellor says this feeling may last for years to come and that thought really scares me because I won't last the distance. They say I'm so lucky it wasn't worse, I can help myself, I can get by, others are far worse off and this I know, and so my own depression seems so wrong, I don't have the right to be still in these pits. I hate being depressed and try to struggle against it, it keeps eating away at me, I don't trust myself. I feel guilty that so much has to be changed to accommodate me everywhere I go, people rushing aroud to move furniture and always asking if I need anything, am I comfortable.... I resent people's well-meaning offerings and I hate being that way. I don't really know what I'm trying to say. I guess a bit of a vent is what I need and so here's my vent.... as none of my doctors or friends or family or counsellors or therapists seem to know the words to convince me that things will be ok again. I hate this ugly self-pity I see in myself, I want to heal already and feel better about things. I can't live with this horror forever can I?

[hockeydahc]

For 4 years I spent my life after injury playing internet computer games and watching tv. I never knew about sports or social groups. I never considered going back to college or work for that matter. Until I got bored. I took some art classes, I found out that even though I wasn't a sports guy before the accident, I really wanted something to do with some competition. I found out about sled hockey. it helps to know theres others just like you. ttalk to more people with an SCI. forums are great, but in person. ask the questions you want to ask and find out what you need to know. we've all gone through the life is crap phase. mine took 4 years. you probably have more social support, so I'd say a year is just right, time to move on.
If you're not out in the world with the rest of the people, it's hard to feel like you belong. so if you're not active in something, look for an interest. alone. leave your boyfriend at home and make new friends. Accomplish something you've always wanted to do or learn. for me it was pottery. that gave me something to put my mind into and my soul grew.
it also helps to let others know that you can do a lot for your ownself. if you don't want to be dependant, show everyone you're independant! Lifes not over, it doesnt even need to be much harder, just changed slightly.

I hope this helps, but I also hope my ramblings make sense.
C

[nomis]

Hi WheelzNRollBaby

You wrote: “They say I'm so lucky it wasn't worse…”
Quite so but also you’re unlucky you got hit at all. You didn’t ask for this to happen and like everyone else on this planet you have a right to be here and claim your place.

So much of what you write reminds me of my own early experience. I still look back in awe at the intensity of that radical change in life. The change is mind-boggling, like being reborn, having to relearn most everything including dealing with how people relate to you. Big big job. No one can understand that like you do.

If you’re feeling depressed it’s probably reactive to what’s happened and that’s healthy (and sane). One year and you’ve got over the introduction and novelty, now you’re seeing more of the realities and what it means to get to the mainstream of life.

Don’t be afraid of your gloom. Let yourself feel sorry for yourself. You might find it has more to do with your love for yourself and that it’s just your way of deeply caring about what has happened to you. That can lead to new beginnings. It's nice you care about yourself.

Leave it to your boyfriend to decide if he wants to be with you. That’s his responsibility. What do you want for yourself, you the person (not the recently injured object)?

You seem to have a fairly clear idea of what’s going on. You read it well and at the moment it’s tough. Life’s a journey and this is an uphill bit loaded with learning.

If you’ve read this, dismiss it. I haven’t a clue what it’s really like for you. I’m bouncing off what it was like for me many years ago. But good luck exploring your new path.

[wheeliebear75]

Don't be misled into thinking any of us were anything but the personal rancher to a herd of cattle (having "a cow" 10,000 times over). One year really isn't a very long time in the big picture.

As for your feelings about your boyfriend and those around you: Lots of us have had our significant others as well as friends bail on us. so the fact that your boyfriend wants to stick around......don't look a gift-horse in the mouth. ;) It may be that he wants to love you......and therefor the wheelchair doesn't bother him. As for the way you said you felt about everyone moving furniture for you makes you feel uncomfortable....why? Seems to me that you have friends that are willing to rearrange their homes just to be with you.....sounds like somebody just might have some tried and true friends. It sounds like you could be getting the wrong idea about your friends and boyfriend, they like you......what's wrong with that?

I'm not saying you don't have the right to feel upset or like somehow you got a raw deal, we all do from time to time. As for how to accept.....it's more individual. One of the things that will help is when you come to the realization that the ability to walk does NOT make you how you are.....it's what is on the inside....and that doesn't change too much. What was it that you did as a able-bodied person that made you you? I think if you look very closely you'll find that what made you you.....still makes you you. It gets easier to see the road with out all of the fog of depression to obscure the path. Having a hobby or just something to keep your mind occupied can help tremendously.

[itsjustme]

Hi WheelzNRollBaby,

So far all of these words seem kind of kind of like spitting in the wind don't they? I mean it's like someone took the book out of your hands, turned some pages, turned it upside down, put it back in your hands and said, "Go on from here."

"Does this ever end?" That's an interesting question. Yeah, when you are on the other side of the grass and I'm much closer to that prospect than you being about 30 years older than you. However I just started this chapter of my life as a para about 2 years before you and believe me this isn't how I envisioned spending my "golden years".

I certainly could have CHOSEN to crawl off into a corner somewhere like some old beaten dog to lick my wounds and growl whenever someone came close to me. But I love my family and friends and I've got a lot of living and loving and laughing to do before I die, places to go, things to see.

"Life is indescriminate in it's suffering." It happened to you. It happened to me. It probably happened to someone today and it will probably happen to someone tomorrow and the next day. It won't be long until we meet and welcome someone new to this forum who is hurting and looking for support from the rest of us who have already been through it, you included.

The only thing that you have a choice about is how to live and love today. You are only 28 years old and life holds so many possibilities for you. "Things won't always be the way that they are today." Open you eyes to those possibilities and quit looking at just the chair.

They say that 2 things are for certain taxes and the other side of the grass but there's one more thing and that's CHANGE. Who knows what tomorrow will bring.

[Susi]

Welcome WheelzNRollbaby

Your first step in helping yourself was by posting your story here at Apparelyzed. As everyone here says this is a great forum to vent, rant or rage without hurting those closest to you.

I have read all the replies so far and in agreeing with them, have a few added 'positives' to give to you.



I was injured in my 45th year, and whilst many regarded this as tragic so late in life and probably a woman's best years of her life, I too was deeply shocked. Initially I was in terrible denial and was positive despit doctors prognosis, from 'paralyzed from neck down' to 'never being able to move from neck down' and lastly to my then partner (now husband), "I hope you have a lot of TLC, because you're going to need it"!

And my poor suffering husband had to suffer all sorts of hurtful comments from me as well. Then rehab in another country (1800km away) and all alone.

It is now 4 years since the accident and a lot has happened. Like the others say, you do somehow find a way to cope, carry on and deserve / demand attention to and for yourself. I went through a bad depression, namely things like, losing my kids to their father instead of staying home with my husband, (best decision ever made), my 'old self'' no more, and a fearful anxiety about my husband at the time. Will he stay, will he go?

Well here we are now, still working and worrying rhrough our problems, but we have coped. I did psychiatric counselling for 2 years running, (some might say you don't need to or maybe you yourself won't want to), but I found this a lifesaver. I did the counselling together with my husband. Secondly, i still sit with issues of dependancy today, but they are not so insurmountable as before. I agree with keeping yourself busy with either an activity or at least via computer as you are doing now.

MOST IMPORTANT though is having a loving structure around you. You sound as if you have that in place. Please believe me when i say DO NOT turn your current boyfriend away from you. This could be an opportunity for both of you to grow together much deeper than before. Speaking from personal experience. I have never needed anyone in my life, and was fiercely independant, but knew with absolute certainty, that once Lionel showed his committment, we worked damm hard to keep our relationship alive. Build for now on the friendship and explore your world together, if he is interested. Take him with you to Doctors, specialists, etc. Take him on a tour of your rehab facility if he hasn't done so already. Yes i hear a lot on this forum that their other half's have deserted them and you have to rely on yourself. I believe your own inter-dependance will come with time, but for now hold onto your boyfriend for all he's worth and discover together your ups and downs and communicate with absolute honesty. I know some of you might cringe at this, but Lionel also took me to church and gave me the gift of God. Don't fob that off as well, but be open, because believe me there is a whole new dimension and purpose for your life once you start embracing christianity. He has sustained me and still does, and the small blessings that come your way, be open and thankful for them, they are just His way of saying, I will never forsake You in Your hour of Need'.

Sadly, and thankfully you will have good days and bad days, but that too will pass in time. Accept for now all the love that surrounds you, because in your darkest hours, that is what is going to sustain you and hang on to.

I wish you a wonderful adventure, and a new road to travel, and just try and embrace it patiently, lovingly.

I as many other female paraplegics/quadraplegics have gone through the same, but it does get better, no matter what.

God bless

Susi

[gsp23]

Welcome and I can tell you the things that were most helpful for me was doing research online to see what was available out there in disabled sports and chair options. I mean a couple months after I got out of the hospital I started looking online and was surprised to see that they had power assist and that they made chairs for people such as stroke victims that only had function in one side of their body. They have adaptions that are endless. Even if you dont need them I think it gives me a sense of security to see what is all out there to know that if something comes up that makes me feel like a cripple that there is probably and adaptive device to help with that specific issue too... or if not then I will have some idea on how to deal with it possibly.

I wasnt aware of the extent of sports & recreation as my Recreational Therapy in rehab was things like what I should do immediatly upon going home, not what I would do 6-12 months down the road. As I started to do research and see what was all out there then I started to feel even better. I still remember the day I found out that they have hockey for paras as I thought I would never skate again. I now play sled hockey and absolutely love it. I have read about canoeing, kayaking and more. There are a few people around here that ride ATVs or Motorbikes which is pretty awsome and I have been working on a setup for a wheelchair for offroading. By offroading I dont mean dirt trails and grass, I mean for hunting through tall weeds with no trails, lots of hills, ruts, rocks, roots, etc. I am getting close but its just a matter of finding what you want to do. Seeing that there was snow and waterskiing still available was something I didnt know either. Just walking my dog seemed impossible at one time and now I am able to do it. Checkout the sports section of the forums and look into the Magazine Sports N' Spokes http://www.pvamagazines.com/sns/.

I have welcomed the help from my family and friends and my boyfriend who has stuck with me. I didnt push them away because if the roll was reversed I would not want them to push me away and instead treat me like a grown person who has my own will, so that is how I am treating everyone else. They are grown and have the choice... I want them all in my life still and if they want to continue to be in my life then that is great and I welcome it. However, if they dont want to be in my life the I leave that decision to them. I dont take sympathy from people really any more and hate the sympathy to be honest, when people give it to me still almost 1yr later I respond to them in a confident manner of the way things are to try and erase some of that attitude of theirs. Like my grandma for example said that it was too bad I was in a wheelchair and maybe I will be walking again soon. I told her that I am ok with my situation and that I am better than I was when I was in the hospital. I say it with confidence and truely believe it and each time I deal with those people the less sympathy and sad looks I get when dealing with them.

Just a few things that really have helped me to cope so you may want to keep them in mind.

[mambo]

I don't know how you're feeling b/c I'm not in a wheel chair. My boyfriend is. I hope you can open your heart to your boyfriend. I dated quite a lot of men before I met mine, all very nice, but I just wasn't interested. I don't know if the man my boyfriend is is is b/c of his injury or in spite of it, but I do know that what I want is him. He has always exceeded my expectations in every way, in everything he does, and in the way he treats me. When I met him, I regarded his wheelchair as simply a part of his physical package. The only things I "miss" in our relationship is being able to walk down the street holding hands or have him walk up behind me to give me a hug. The things we have, however, are so much more. In this relationship, I've come to understand all the little things I took for granted in past relationships. You would think that would be a detriment, but it has made me appreciate everything we have together. It's like for the first time, my senses are open and I savor everything between us--laughing at a shared joke, watching a movie, hanging out w/friends, sex. Your boyfriend is not to be pitied. It sounds as though he is deeply committed to you. Lucky guy to be so in love!

[john S.]

WheelzNRollBaby, on Jun 30 2007, 09:10 AM, said:

Hello, this is my first post here, but I have read through a few posts over the past month or so and thought this looked like a place I might gain some perspective and understanding, as I have been really struggling with my situation lately. This is a pretty long one for a first post.... it's taken a while to find the words, I hope you don't mind me venting my woes.

I'm 28years old, I have a T10/11complete injury, just over a year ago a car came off the road and collected me as it took a corner too fast. I didn't see it coming, woke up in the spinal unit, completely disoriented, not much else really hurt but my spine.... I think I still feel a sense of deep shock over it all. Life since has been something to get used to, to say the least... I won't bore with the details... it's a well-told story round here I'm sure, with rehab and all the rest. I found going home the hardest. My dilemma is more emotional I suppose, as my days just seem to keep getting darker, and I see no way to come to terms with this "new life" of mine that everyone keeps talking about. It's like this isn't really me, this isn't actually happening to me, it's just some freaked out fantasy... I don't know what I'm trying to say really. Just that I honestly don't recognise myself as this chair-bound, needy person, I can't find a way to see any light in my situation right now, everything's changed, everything's hard.. I'm pushing away my friends, my boyfriend is trying so hard to be there for me, but I just can't seem to be able to accept their condolences and their sympathy. To be honest, I feel sorry for him, feeling so bound to me that he sticks around even now... it saddens me that he will have such a difficult life with me now if he does stay. I want him to be happy. So I figured I might find something akin to a reality check at a place like this forum. You all seem so genuine, and have such real and interesting lives, from the few threads I've read through so far.

I can see you have found a way to believe you can have a happy and fulfilling life, despite your disabilities... and I truly envy this. I want to be happy and get on with life. I want to wrap my head around this... my counsellor says this feeling may last for years to come and that thought really scares me because I won't last the distance. They say I'm so lucky it wasn't worse, I can help myself, I can get by, others are far worse off and this I know, and so my own depression seems so wrong, I don't have the right to be still in these pits. I hate being depressed and try to struggle against it, it keeps eating away at me, I don't trust myself. I feel guilty that so much has to be changed to accommodate me everywhere I go, people rushing aroud to move furniture and always asking if I need anything, am I comfortable.... I resent people's well-meaning offerings and I hate being that way. I don't really know what I'm trying to say. I guess a bit of a vent is what I need and so here's my vent.... as none of my doctors or friends or family or counsellors or therapists seem to know the words to convince me that things will be ok again. I hate this ugly self-pity I see in myself, I want to heal already and feel better about things. I can't live with this horror forever can I?

After about 2 weeks at an ashram in india with enlightened monks, John Lennon stood up and walked away. As he left the ashram a priest asked him "why are you leaving so soon?
John lennon replied without looking back, "your the one who has the answers, you tell me?"

I won't make you wait two weeks, your very new to what is essentially a new way of living. You aren't going to come to terms with such a terrific loss in such a short time. Don't forget all you knew but forget about what is holding you back and concentrate on breaking free into a new life. Go see a real psychiatrist and tell your counsellor you need a job that gives you the self worth you deserve. The next year is going to be hard. you need to force your way past your grief and get over some big prejudices in your own mind.
Much of what is holding you back is your own innability to accept your new life.
I'm not a philosopher but if life is a gift, I'm damn glad I got it back even if I have to start over. you know the feeling where you think you lost your wallet with money and ID and credit cards, then as your about to die inside, your gf hands it to you cause you let it go in the laundry,,well,, glad to see your back from the laundry.
You can do a lot of rewarding stuff. It is mostly like before except you need to be creative about reaching top shelves and getting freaking papers up off the freaking floor! Not like it ever gets to me...lol.
What helped me a lot was going to the city square and begging. Dark glasses, goofy ballcap, thrift store clothes and a coffee can. with some quarters and a few dollars.
It helps if you can play an instrument. i'm a quad so I barely play a harmonica. A tenspot in the can and I'll go to the next corner.
Doing things that aren't normal helps me deal with how not normal things are and I have a baseline to get on the ball and be something more than a beggar. I do still beg when I'm down to remind myself of how bad things could be.
You do know our world is based on high output work from people who can't get off their butt?
And damn, you are lucky! You sure can't see it after only a year, though. The psychiatrist is who you need. A counselor might like pretending to be one but they aren't. The real doctor will be a lot more help. You should be in rehab and go find a big work dog that is smart and train it to be a service dog. Bouviers rock. (I know I spelled it wrong).
I'm a C-5 and I did accounting for 16 years but you can get a better job. lol
My only advice beyond that is no matter what your really thinking when people are trying to help, be nice! It's important, trust me!

God bless you, and my best wishes go with you,
john

[rkzenrage]

Being in a chair/on crutches/etc does not stop you from still being entitled & obligated to be good to yourself.
Sorry it is so short, but it says all I want it to.

[Illinois Boy]

I wish I had something enlighting to tell you also........

I can say I'm envious of your ability to use your arms and hands......

Jim