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How Do You Deal With Being Paralysed?

life being paralyzed what do you miss?



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#1 Astack23

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Posted 01 March 2012 - 08:07 PM

I have now been paralyzed for six years. You'd think i'd have accepted my injury by now. But everywhere I look I see reminders of all the things that i cannot do anymore and it gets me down. I wish i could interact with more people in wheelchairs, then maybe I wouldn't feel so isolated. The fact that I can't just run and jump in bed anymore, or piss and have a bowel movement normally really pisses me off. I know I should be grateful for what I have but sometimes I just long for my ab days. The future overwhelms me when I think of living the rest of my life like this. I miss sex, walking, and just being able to lounge around in a whole body.
So how about you guys? How do you deal and what do you miss?
One must have a strong will to make it.

#2 julibugs

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Posted 01 March 2012 - 08:18 PM

I just want to send you a hug :hug: - I am only 2 years in and I have had real problems coming to terms with living a life that isn't the one I expected so I know how you feel. There are so many positive people here on this forum, keep chatting to them and they will get you through the dark days. I know what you mean about interacting with other people in wheelchairs - one of the best things I have done is meeting up with some people from this forum, somehow when you are out with someone else in a chair it feels more normal.

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#3 Astack23

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Posted 01 March 2012 - 08:32 PM

thanks julia :rolleyes:
One must have a strong will to make it.

#4 pikey

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Posted 01 March 2012 - 08:37 PM

I think you have started on your first step to getting back to a normal life opening up in here amongst friends. I know it is hard to want to do anything in a wheelchair, missing your old life, but you have to. Think about going to college or joining a sports club after all sitting at home makes the days drag and gives more time to dwell or feel sorry for what you don't have anymore. I was given some good advice for every negative thought you have try to have two good ones. We have chatted in here and I think you are a nice bloke. Keep popping in chat we will talk and give you support.
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#5 brockit79

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Posted 01 March 2012 - 08:50 PM

23 :hug:

I have lots of plans that run through my head daily; from employment to exercise . Without plans I find it hard to focus and feelings of despair spiral out of control.

I'm an action person and I believe that when you have decided what you fancy doing then write a list off all of the steps to get to the end result, cross them off as you complete them. Acceptance of this situation doesn't just happen 23 it requires a plan in IMO.

I'd love you to see the light at the end of the tunnel; and whilst as things won't be the same again things can be fun. Life is waiting for you to live it.

Get your butt to the UK so we can do some festivals ;) or I go to you and we do Coechella or Bonaroo!

xo

Edited by brockit79, 02 March 2012 - 08:18 AM.

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#6 Bethann

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Posted 01 March 2012 - 09:04 PM

I'm sending you a hug too! :hug: I know what you mean remembering your ab days and having some dark days. It's hard not too but we have to make the best of it. Apparelyzed has been so rewarding and it's nice to know we are not alone.

Hope to keep seeing you in the chatroom! Like Pikey said it's good support!

Beth :)

Edited by Bethann, 01 March 2012 - 09:34 PM.

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#7 elle80

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Posted 01 March 2012 - 10:01 PM

I actually don't know how you cope with it, not sure I could, usually when people are down my standard advice is eat chocolate and watch Disney's Up (you can still do this and it might take the edge off but think you probably need a bit more than this.) and I'm not really the best person to give advice as I am not in a wheelchair but I will try and maybe once you've read all the advice and watched Up you'll feel a little better.

You have kind of already answered your own question, I am sure there will be other wheelchair users near you, I don't know where in Colorado you live obviously but maybe check and see if there are any wheelchair sports clubs, if not you could always try and start one, that's what a lady I know did as her son was travelling twice a week for three hours to go to basketball so she fundraised and worked really hard and now they have a wheelchair sports club which she has raised all of the money for (asking businesses, fundraising days, people running marathons, raffles etc).

I think you will always miss your AB days, who wouldn't? That's really normal and I don't know how you can change that but maybe things will be easier when you enjoy your wheelchair days a bit more, what did you love doing before? There might be ways of doing the things you loved, my boyfriend has a trike which he attaches on to his wheelchair and we can go on walks and bike rides, we go to concerts (buy one get one free on the tickets) festivals, weekends away etc when we are just sat in the house we are a bit geeky and have a Nintendo wii, he doesn't struggle with any of it (obviously we don't have a balance board but apparently they are available for wheelchair users!). I love it when we do something which I didn't think was possible, like camping. You live in Colorado so maybe you could get into skiing? If you can afford it maybe you could go on a week away with an organised group? Don't give up on yourself just yet, there are things that you will be able to do and maybe even find new things that you never knew you were good at. Maybe you need to get your friends round, have a few drinks and talk to them too because they might not realsie how you are feeling and I know men are not very good at it but a problem shared is a problem halved and all that! All the best.

#8 Stand

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Posted 01 March 2012 - 11:06 PM

It's so hard to accept, regardless of how much time as passed by. It's only been 2 1/2 years for me, which I realize is nothing compared to some of the members of this forum. Some days it's so difficult and others I go by without thinking about it too much. They say time heals everything but if you are stuck in a wheelchair that is just something that time cannot take away. You may move on with life and some aspects might get better but whenever you look in that mirror, there it is. Your form of transportation. That's just the reality of it but there are things I'm sure you can do to make it better. Take advantage of what you are able to do. Maybe find some new hobbies. Like others have suggested, reaching out and searching for groups as you have mentioned would be a great thing! May be go to hospitals and try speaking to people in our situation. Just a few simple ideas. I know my post might seem a little discouraging, but these are just things that I feel that maybe you are feeling also. I hope that you can find happiness and contentment! Good luck to you! Life is not over.

Edited by Stand, 01 March 2012 - 11:08 PM.

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#9 A trophy guy

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Posted 02 March 2012 - 02:07 AM

HOW DO YOU DEAL WITH IT?

Over the years I've been asked some form of this question so many times I've lost count. I've only ever answered it basically one way, however: Given that this has happened, what are my choices? I can dwell on the past and rue what I have lost and stay in that place of hurt; but in the end of the day, I am still paralyzed, I am still in the same predicament I was in at the beginning of the day. This is my life. This is not my wheelchair's life or my spinal cord injury's life, this happened when I was only 20 years old; before I even had a chance to start my life as an adult. I have so much more to do that I have yet to ever even do, I don't even remember the things I can no longer do.
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#10 D. Smith

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Posted 02 March 2012 - 07:57 AM

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I deal with my sci like I do with ex girlfriends. There are things that always remind me of them, but I can't let those memories dictate what I like to enjoy currently. I just have to keep pushing forward and hope for the best.

Edited by D. Smith, 02 March 2012 - 07:57 AM.

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#11 Tetracyclone

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Posted 02 March 2012 - 01:39 PM

I deal with my sci like I do with ex girlfriends. There are things that always remind me of them, but I can't let those memories dictate what I like to enjoy currently. I just have to keep pushing forward and hope for the best.


I love this trick and will begin using it. The abled body as an X! She was lovely, but she left, didn't she! Bitch.

Edited by Tetracyclone, 03 March 2012 - 12:45 PM.

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#12 rue2you

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Posted 02 March 2012 - 02:59 PM

I think it is a great mental exercise. I try to dwell on the happy things in my life (and there are plenty!) and not the bad things. Sure, there are certain "triggers" that can make me feel really sad, but that typically involves something that I am really wanting to do badly and am just not able to. It is the little "slap in the face reminders" that is where the mental control comes in. I will give myself my little moment of sadness and then I absolutely refuse to let myself dwell on it. Dwelling leads to depression so you just cannot do that.

My favorite way to stay "non-dwelling" is to stay busy. I take one day at a time and refuse to think about a life of this. In reality, even on this forum, there are some days I can read every thread and other days I can only read positive ones. Because only I know where my mind is that day and if I am having a rough day, I don't dwell on the "bad" issues of paralysis. I will watch cartoons with my kids or a funny movie or Youtube videos. Other days, I will watch active wheelies do all their tricks because they inspire me to try me and show me that I can do more in life then I think I can.

Most days are wonderful and I don't even have to "play" the mind control games. But, I am describing what I do on the tough days.
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#13 D. Smith

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Posted 03 March 2012 - 06:06 AM


I deal with my sci like I do with ex girlfriends. There are things that always remind me of them, but I can't let those memories dictate what I like to enjoy currently. I just have to keep pushing forward and hope for the best.


I lo e this trick and will begin using it. The abled body as an X! She was lovely, but she left, didn't she! Bitch.

Aye, see she and I just had a disagreement that led to her throwing a motorcycle on me... She be a vicious ex!
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#14 Edinburgh Colin

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Posted 03 March 2012 - 10:05 AM



I deal with my sci like I do with ex girlfriends. There are things that always remind me of them, but I can't let those memories dictate what I like to enjoy currently. I just have to keep pushing forward and hope for the best.


I lo e this trick and will begin using it. The abled body as an X! She was lovely, but she left, didn't she! Bitch.

Aye, see she and I just had a disagreement that led to her throwing a motorcycle on me... She be a vicious ex!


That is an absolutely brilliant approach, love this and need to remember to remind myself at the right time, thanks.
EC
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#15 ClaraTaylor

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Posted 03 March 2012 - 10:38 AM

I deal with my sci like I do with ex girlfriends. There are things that always remind me of them, but I can't let those memories dictate what I like to enjoy currently. I just have to keep pushing forward and hope for the best.


I love this comment!
From now on when people ask what happened it will always be "the ex-girlfriend did it!"

Write a list of everything you want to achieve in you life - I did this years ago (and to my horror apparently have lost it!) Whenever I was having a "more piffed off with life than normal" day I'd pull out the list and use all that anger and energy to work out HOW I was going to do something. Some of my "to do" was simple days out to the beach with friends, take up swimming again, and go to a beer festival. Others perhaps like driving a tank / lorry / fire engine /ambulance / steam roller... perhaps more specialised to my odd sense of humour.
You don't have to show anyone that list, no one even needs to know it exists. But use it to push yourself forward out of you comfort zone and life life like it owes you everything.

#16 nomis

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Posted 03 March 2012 - 11:46 AM

Astack23, of course you are going to miss all those things and quite rightly you can feel pissed off with it. Those are the facts of it.

It's also a fact that you can't go back and put those things back in place. They're gone. You've got two choices. End it now or go on. In my opinion the only real choice is to go on to find out what is around the next corner in your life.

Don't worry about your future. That's too big to deal with for anyone. Just sort out today.

You're experienced enough now to have learnt the basics of being SCI and you've got a good idea of the challenge you're faced with. New exciting adventures are lining up for you once you get stuck into that challenge. Don't get reckless but be prepared to take a risk with your life. What is something you intended to do but have not yet done. Have you ever travelled? Or, if you want to spend more time mixing with other wheelchair-users, how about packing up and moving elsewhere to live? Take up knitting or learn brain surgery.

There's a whole big world out there that's available to you and at the moment you appear to be wasting valuable time. One day you'll be too old and wishing you were young again...and that's not going to change, either.
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#17 SGT278ACR

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Posted 03 March 2012 - 03:45 PM

I have been a T3 complete ASIA A for almost a year and a half now. Acceptance of the injury has been a real issue for me until just the past couple months. A little background about me... I was in the regular Army for 7 years and then in the Army National Guard for several more years up until my injury. I was also a Police Officer for 7 years up until my injury. I served two tours of duty in Iraq without a scratch. I am married with 2 children, my step-daughter is 17 and my son is 4. Just about 3 months after I returned home from my 2nd tour in Iraq I was riding my motorcycle on a 2 lane country road when a negligent driver in an SUV turned right in front of me. He said he didn't see me even though it was a clear sunny day and there was approximately 1/2 a mile of clear visibility down that road. Turns out he had no insurance (which is a law in this state) and had a license plate not registered to the vehicle he was driving, also illegal. I harbored such a hatred for that driver because he shouldn't have even been on the road. Anyway, I was dwelling on all the things that I lost... the ability to play with my young son like a Dad should be able to... the ability to make love to my wife... my military and law enforcement careers, you name it. The depression was so bad that I couldn't get past it for a long time. How do I cope now? Well, it took me almost losing my wife and family to realize I needed help. A couple months ago I started going to counseling at Church, which has helped immensely. I started driving again. I returned to work for my department as a police records clerk back in September and work a regular 40 hr work week. I took up an old hobby of target shooting with pistols. I'm joining a sport shooting organization and plan on competing in matches. I've always been an outdoorsman, so a few weeks ago I ordered an all-terrain power wheelchair off of e-bay and just over a week ago I was able to use it to get up the hill in my back yard to push my son on the swing for the first time since my injury. Is my life perfect... not by a long shot. But based on what I just told you... I've been learning in the last few months that I CAN be happy and content again. It also helps to try to let go of the hatred for the guy that put me in this chair. All that hatred was eating me up and consuming me. I still think about him once in a while and get pi$$ed off, but I've learned to let the feeling pass and move on. I know everyone's situation is different, but I've learned that this is the hand that God has dealt us. What else can we do but play that hand....

#18 wheeliebear75

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Posted 03 March 2012 - 10:14 PM

I was hurt in 1990.....so almost 22yrs ago now (Holy crap that makes me feel OLD!).

When I was 1st injured & still in that rehab phase....I did a LOT of crying....I mean a WHOLE LOT OF CRYING!!! Watching my Mom or a nurse walk across the room could send me into tears! And I remember some of my 1st outings; not being able to look at my own reflection in the store windows, & feeling like the whole world was WATCHING ME.

Then I went into my "happy FACE" phase: sure I could choke back the tears & stuff the anger back down....but I wasn't LIVING. I could watch my FAMILY giving MY kids piggy backs & pushing them around on their trikes......but I wanted to do that! All I could think about was how unfair it was that I've never been able to do things like that with my own children, how this stupid accident wasn't JUST screwing with MY life but now theirs aswell.

Somewhere along the line I didn't physically get any better.....but mentally speaking.....I DID. I learned that there are some battles that stubbornness & sheer detirmination CAN help.....SCI isn't neccesarily one of them. I learned to LET GO; I learned to let go of the anger of what I'm NOT able to do which let me enjoy those "little things", & I started to learn that "happiness" is something WE have to lkeep searching for til we find OUR OWN HAPPINESS.

When ever you reach THAT point where you CAN "move on" & accept yourself for who & what you are NOW.....THEN you'll find yourself laughing more & frowning less. :hug:
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#19 rollingtrouble

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Posted 07 March 2012 - 02:20 AM

I can only say that for me it took a period of several years to finally get to the point of accepting the loss of my former life and the grieving process that is really what I went through. The deep depression cycles without seeking help was the worse part, and finally getting help made all the difference for me. I think if I had gotten help sooner, it would have been easier for me, but being the hardheaded and stubborn person I am it was not to be that way. When I woke out of the two month coma after my injury to find the world had passed me by and the uncertain future I was left with was devestating, as most people who suffer SCI know. But now things are very different for me, and it gets easier as time goes by and I "learn" new ways to do things that I used to take for granted. Like getting up out of bed, getting a shower, getting dressed, feeding my face etc., and generally trying to do as much for myself as I can. As far as the future goes, well, there is no guarantee anybody out there is going to be around at the end of the day. And none of us are gonna get out of here alive anyway, so I would say the future for me is as it always was, I'll just be on wheels instead of my feet. There are always going to be challenges, difficult times, taxes and bills to pay, worries and other problems just like there ever was. There will always be happy good times, satisfaction with overcoming the challenges, smiles, hugs and fine memories in the days to come...just like there ever was. Things are really the same if you think about it, just in a different way. As you get older, there are things you would not be able to do, or want to do anyway. Don't dwell on the past and prolong the grieving process of "losing" your old life, your new life awaits you, and you are wasting time that, like your old life, you'll never get back. Don't take what you have left for granted and live as fully as you can. Your new life can be just as amazing and wonderful as the one you lost, but you have to live it! :)
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#20 Dean1978

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Posted 07 March 2012 - 03:03 AM

Athony, you need to do something positive to get your mind on the right track. Joining a gym is one of the best things u can do. Build your body and the mind will follow buddy, trust me it helps.
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#21 Scrappy

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Posted 07 March 2012 - 12:48 PM

I have now been paralyzed for six years. You'd think i'd have accepted my injury by now. But everywhere I look I see reminders of all the things that i cannot do anymore and it gets me down. I wish i could interact with more people in wheelchairs, then maybe I wouldn't feel so isolated. The fact that I can't just run and jump in bed anymore, or piss and have a bowel movement normally really pisses me off. I know I should be grateful for what I have but sometimes I just long for my ab days. The future overwhelms me when I think of living the rest of my life like this. I miss sex, walking, and just being able to lounge around in a whole body.
So how about you guys? How do you deal and what do you miss?


Well I never really had a dark time like emotional after my accident.. I'm a t3 and I understand how things like a set of stairs can hold you back and make you feel like growing wings and flying away haha.. anyways well I work out regularly and try and keep busy and if I feel down I jus blaze up.. I still go out and hav fun with my friends go to concerts movies bars friends houses bbq's sometimes play b-ball wit my ah friends or jus shoot around. there's a therapy place here where they charge $40 a month to go in and use there equipment and I didn't know about it for a while. you might have to look into different activities in your town.
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#22 Tetracyclone

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Posted 07 March 2012 - 01:39 PM

Paralyzed? I am paralyzed?
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#23 isobar

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Posted 07 March 2012 - 07:26 PM

I hear you loud clear. Since i cant go back , i can only go forward to keep my focus on what i dont have or cannot do could hold me back as if standing still. My condition may never change so i have to find a way to move on, adjust and try to live a full life. Hopefully in time every being finds something that gives life as it is purpose...... igniting a spark.
LITUT = "Life Is The Ultimate Teacher"

#24 pdickens

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Posted 08 March 2012 - 05:55 PM

I understand how you feel. It's been 7 years for me and I still everyday get frustrated and sad about something I can't do anymore. I drop things out of my lap in the kitchen and have a breakdown. I'm trying to learn how to change the ways I do things, but I still hang on what used to be. It is a long process for me.

#25 WhiteAngel

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Posted 09 March 2012 - 04:48 AM

For me it happened slowly, from walking to using the walls to using a stick to a quad-stick to using a scooter, to using a power-chair....it started to effect me from the year 2000 although it's really been my whole life....but my life has not been the same since 2000.........the way I cope is....really I don't...I just learn to live with it....I have dark days,...especially recently...I just say it is what it is....you can never accept it, learn to live with it....especially if you remember all the things you could do and now can't..... getting upset won't make it better....so you just live with it until you can't, and just let go and let God...

I wish I could say it was over with, so I could get on with things...but just as I get used to things, my goal posts keep moving, I continue to get worse slowly...there doesn't seem there's an end...that's what I find most difficult thing to cope with.....


Edited by WhiteAngel, 09 March 2012 - 04:51 AM.

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#26 A trophy guy

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Posted 09 March 2012 - 08:05 AM

For me it happened slowly, from walking to using the walls to using a stick to a quad-stick to using a scooter, to using a power-chair....it started to effect me from the year 2000 although it's really been my whole life....but my life has not been the same since 2000.........the way I cope is....really I don't...I just learn to live with it....I have dark days,...especially recently...I just say it is what it is....you can never accept it, learn to live with it....especially if you remember all the things you could do and now can't..... getting upset won't make it better....so you just live with it until you can't, and just let go and let God...

I wish I could say it was over with, so I could get on with things...but just as I get used to things, my goal posts keep moving, I continue to get worse slowly...there doesn't seem there's an end...that's what I find most difficult thing to cope with.....


I didn't rep this because I liked what you said, I repped it because it hurt me to read these words and I wanted you to know that my heart goes out to you. I give you my loving energy and I wish you didn't hurt so. :)

Blessed but Cursed

#27 WhiteAngel

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Posted 10 March 2012 - 12:18 AM


For me it happened slowly, from walking to using the walls to using a stick to a quad-stick to using a scooter, to using a power-chair....it started to effect me from the year 2000 although it's really been my whole life....but my life has not been the same since 2000.........the way I cope is....really I don't...I just learn to live with it....I have dark days,...especially recently...I just say it is what it is....you can never accept it, learn to live with it....especially if you remember all the things you could do and now can't..... getting upset won't make it better....so you just live with it until you can't, and just let go and let God...

I wish I could say it was over with, so I could get on with things...but just as I get used to things, my goal posts keep moving, I continue to get worse slowly...there doesn't seem there's an end...that's what I find most difficult thing to cope with.....


I didn't rep this because I liked what you said, I repped it because it hurt me to read these words and I wanted you to know that my heart goes out to you. I give you my loving energy and I wish you didn't hurt so. :)


thanks for your kind words and I'm sorry if they hurt you...I'm just being totally honest and open...it is what it is... :wub:
Astrocytoma Spinal Cord Tumour @ C-1 - T-6 surgery back'n 1970 @ age 4-1/2 Brain Stem Cyst, Kyphosis, Scoliosis, Heading down the quadriplegia road, unfortunately. http://whiteangel0.b...y-story_06.html

#28 snodrog742

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Posted 10 March 2012 - 12:37 AM

Paralyzed? I am paralyzed?

Exactly! Takes time... but you learn to just not even think about it. Get active in the community or something you enjoy and you won't even remember you're "paralyzed".

#29 Niceparalegs

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Posted 10 March 2012 - 01:51 AM

First off, I am so very sorry for those of you who are struggling with your sci. You are all amazing for even getting through each day. I am coming up on my 3 months post op mark.:)i have bad days, I wont lie...the frustration of figuring out how to do certain things certainly ticks me off now and then. However, the thing I have to try and remember is that I was given a second chance by God at life. I prayed a very fervent prayer whilst lying in a totaled vehicle with a broken back and neck that God would give me a chance to better appreciate the lifethat I had been given...and even though it changed a little, its still just that....a life and a 2nd chance...a gift. I should have died in that car. I was young, stupid and took a lot of the amazing things and people in my life for granted. We are never promised the next breath, so we had better make this one count. I try never to go to bed angry or upset and to tell my family how much I love them as often as possible. I also try and remeber to thank God for what I DO have. I think the thing that helped me most was digging reallly deep inside myself and figuring out why I think God allowed this to happen to me. The conclusion for me: he slowed me down to show me how much I have to be thankful for and to keep me from continuing on a dangerous path for my life filled with things that will not matter when im old and looking back. Also, I firmly believe that like Job, God hands trials to those he trusts most and loves. He tells He wouldever hand us anything that we aren't in need of in some way and capable of handling. Best of wishes to all. I hope that I haven't offended anyone with my post. I love and care for you all.
  • Anna16 and Edinburgh Colin like this

#30 Stickman

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Posted 10 March 2012 - 05:06 AM

Love your post, Niceparalegs!



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