54 replies to this topic

[Justin14]

This site is just so great...being so new to this I have so many questions and thougts going threw my head with few people to ask..This is one I've been thinking about for a wile...After you were hurt how long did it take for you to really except that you had a SCI?....When I came to after about 3 weeks and can remember my Dad telling me what had happened I really thought he was screwing with me...It was about another 2 weeks till I got to rehab that I started to believe him...When I got home is when it all really sank in for me that this is it.

[Airrika]

Probably when i was transfered from my regular room to the SCI unit.. That was when i started rehab and had to be on a strict schedule everyday. I dont feel they gave me enough time i was only there for roughly a month and when i first got home it was the WORST.. I was in diapers and constantly wetting myself and the bed.. I felt so ashamed of myself i wanted to give up on life, but i made it thru the storm and i'm starting to see the rainbow again =-) (thank god)

[Quad65]

Wow, good question. It brings back a lot of memories, some not at all pleasant. I was 17 when I was injured, between 11th and 12th grade in high school. After I came out of shock from the initial injury, I was told I'd be in traction for about six weeks, so despite being paralyzed from the neck down, I assumed I would be fine after that time, get up and walk out of the hospital. Well, the days and weeks went by and no movement and nothing was getting better. No doctor sat down and said flat out, "Son, you've experienced a traumatic injury to your spinal cord and you'll be a quadriplegic the rest of your life." After I got out of traction, they transferred me to a regular bed for a couple weeks before I went to a rehab facility. One night my folks were there visiting me and I asked my mother what was going on. She didn't say anything, she just started crying and put her head on my chest. I said, "This is it, isn't it?" No one had to say anything, I knew the answer. That was the fall of 1965.

[airart1]

pretty much instantly, but i gave it a try, i rehabbed 4 two years........learned alot.......

[The Black Sheep]

I actually don't think I have accepted my predicament yet, after 11 and a half years. I mean, the daily grind of doing things from a chair, getting in and out of the car, up the curb, into work, yadda yadda has set in, but it still doesn't feel like this is the way it's going to be for a very long time. I sometimes get the feeling that I can just get up and walk, although I've failed every time. I still don't think I've accepted it as permanent.

[Edinburgh Colin]

I don't know the true answer.
Thought I had a pretty good grip in it when lying in High Dependency 9 months ago and then all through the rehab process still as an inpatient in the spinal unit.

Been home a week exactly now and starting to get angry, withdrawn, seems like life is going to be too tough (not the way I felt for the last few months!), so like I say not sure of the answer. Guess take another look after the summer with my kids - 9, 8 and 20 months who I missed all last summer with.



Chin up and remember it could always have been worse!!!

[guido]

Edinburgh Colin, on Feb 23 2010, 11:29 PM, said:

I don't know the true answer.
Thought I had a pretty good grip in it when lying in High Dependency 9 months ago and then all through the rehab process still as an inpatient in the spinal unit.

Been home a week exactly now and starting to get angry, withdrawn, seems like life is going to be too tough (not the way I felt for the last few months!), so like I say not sure of the answer. Guess take another look after the summer with my kids - 9, 8 and 20 months who I missed all last summer with.



Chin up and remember it could always have been worse!!!

Hey Colin

A week is seriously early days to be out of hospital. The old place <home> will bring up many unexpected emotions. Like passing your driving test, you only really learn to drive afterwards. Bad days will happen, and so will good days. Having missed last summer with your kids, try not to spend time in the past, because it doesn't do anything. This is a marathon not a sprint. Come back here, ask questions, vent. But don't give yourself a hard time. Fantastic to have the kids to focus on. You will still be the big man they look up to.

Take care

Guido

[Edinburgh Colin]

Thanks Guido,
They are great when not beating lumps put of each other 9 year old girl, little brother 19months younger, you can imagine.

little one is great though.

Ta

[Stickman]

The Black Sheep, on Feb 23 2010, 05:36 PM, said:

I actually don't think I have accepted my predicament yet, after 11 and a half years. I mean, the daily grind of doing things from a chair, getting in and out of the car, up the curb, into work, yadda yadda has set in, but it still doesn't feel like this is the way it's going to be for a very long time. I sometimes get the feeling that I can just get up and walk, although I've failed every time. I still don't think I've accepted it as permanent.

I have to agree, thats just about how i feel, like im just putting up with it for an uncertain amout of time.

[mcferguson]

Stickman, on Feb 24 2010, 12:19 AM, said:

The Black Sheep, on Feb 23 2010, 05:36 PM, said:

I actually don't think I have accepted my predicament yet, after 11 and a half years. I mean, the daily grind of doing things from a chair, getting in and out of the car, up the curb, into work, yadda yadda has set in, but it still doesn't feel like this is the way it's going to be for a very long time. I sometimes get the feeling that I can just get up and walk, although I've failed every time. I still don't think I've accepted it as permanent.

I have to agree, thats just about how i feel, like im just putting up with it for an uncertain amout of time.

me, too.

[Tetracyclone]

Every morning I wake up and check. Damn, I'm still paralyzed. I resist letting go of thinking of myself as capable.

[airart1]

after 20 yrs. it still doesnt feel right........its unnatural it is, so maybre it really never goes away. but better is does get.......

[Soryfam]

After 2 years I still sometimes think it isn't for real. Just laying in bed and "feeling" the numbness in my legs, the tightness in my back, the inability to do things I used to... I just seem to feel like tomorrow I will be able to. Just the other day my husband was being very helpful, trying to keep me safe from falling in the snow. He knows I get irritated at being hovered over, and apologized "if he was bugging me." I blurted out "No, I guess it's high time I realize I need help and get on with it." Of course the next day I trying to figure out how to do things like I used to. I don't think I'll ever completely settle into the whole thing. Like others said, it's not a natural state, so it's kind of natural to not accept it.

Sandy S

[M@CHINE]

feels like a dream, i just wish i didn't have to depend on caregivers as much. all i want is more independence

[qbounce]

Agree with others here. There's another thread floating around asking if you feel disabled, or accept your disability . . . . . something like that. My answer is, no. Although I look in the mirror and I certainly look the part. But inside, I feel like it's still possible to do just about everything I was ever able to do before. Maybe this coping mechanism has helped us to continue to try and do as much as we can post injury?

I know I'm not walking anytime soon, and I'm not expecting to. But in my mind, I still feel "normal", and I guess that's because I'm still me. Now, put me in someone elses body and I'll probably have a different answer.

[DannyR]

I am 13 months post surgery and don't want to believe I am pretty much as good as I am going to get. Even when I was approved for disability I thought it would only be temporary. I still feel if I get into a routine that I am somehow giving up. I got my 20 year service award from my job while I was off on sick leave. I have raised my family and this was suppose to my time to earn my retirement didn't realize it was coming so soon. I guess what I am trying to say is that we have to accept things for what they are but never give up on trying to be the best person you can be at least the message i get from this site.

[Hotwheelz]

Justin

This is a wonderful forum for information and support, I used to be a member here sometime ago and just recently came back.

For me it all sank in right away! I knew something was wrong when I could not lift my arm to turn the radio down, but when I woke up the next morning strapped to a bad it was a rocking back and forth to prevent pressure ulcers I knew I couldn't walk (let's face it walking is it the worst thing that I lost. I tried taking as many painkillers as I could to avoid facing my new issues. I became very depressed and wanted to give up.

After physical rehab and being kicked out of a number of nursing homes during my first year post injury, I somehow managed to get married and move out of the nursing home. I thought this might be the answer to my depression and all my problems, unfortunately it wasn't. I ended up spending the majority of my time in my bedroom, coming out only for doctors appointments and maybe a couple other things. Sometimes I would stay in bed for days at a time. I ended up manipulating my doctor and two out paying my OxyContin to 80 mg three times a day and of course I was supplementing between doses. after a bout 2-2 1/2 years of that I could take it anymore, I hated myself and everyone around me I was miserable and I didn't want to live anymore.

At that point I decided to add cannabis into the mix (I figured it would make me numb to the pain I was causing myself), well it worked but it worked differently than I had anticipated. after smoking cannabis for a couple of months I realized that my uncontrollable muscle spasms were being managed as well as my neuropathy, chronic pain, panic disorder, appetite stimulant, nausea, but most of all it helped with my depression which led me to come out of my room and began to participate in life once again.

So I decided to start working on becoming independent, so I ended up joining a quad rugby team and that's when my life began to change fast. Within three months of working out at home with a door gym and playing rugby twice a week I had reclaimed my independence. Since I started using cannabis I was able to cut more than 80% of my prescription medications and all the narcotics and I feel so much healthier and not like a zombie!

It has been eight years since my injury and life has become for the most part just as wonderful as before my injury, I now drive a car and am completely independent. I have gone back to school and have got involved in my community as well is becoming an activist for medical cannabis. Now I still have my days where I hate being paralyzed so much and some of the things I am unable to do now still bother me from time to time. Life has become as difficult as it was the or my injury! Which is what keeps me going!

hang in there talk to as many people who have spinal cord injuries, the people that have been injured for a while are the ones you can learn so much from (just by paying attention to what they are doing) it will take time but you will find your path!

peace
Hotwheelz

[allister]

Back in 1983 when I was slamed in an RTA I was scared, and very very lucky.5 discs were dislodged. After two years of intense physio , and regular sessions there afterI managed to live a very near normal life til 2001.

"In 2001 L4 & L5 herniated, After two ops to try and sort it out, scars were left on the cord. After 8 years of crapy horrible pain and rapidly diminishing mobility, I lost use of all below the waist july last year.

I was petrified back in 2001 and thats when I did the most crying and grieving, Scared to death that I would end up in a chair. 8 years down the line , here i am a para.

I don't know about acceptance of the situation, I was initialy on a high last year as suddenly there was next to no pain in my body. Meds were cut by half . But 9 months later, I feel angry, bitter and sometimes very resentfull .
Because my loss was caused by an old injury ( it took 18 years to herniate) I have been turned away from a dedicated spinal unit, as the sudden loss was not the result of an new injury !

I have been left in a kind of no mans land for 9 months, fighting for help - support - access to facilities, and still got nowhere. Apart from you guys, and 1 para friend I have no other support. I have no inclusion with other w/chair users / sci's.

So how do I feel, Have I accepted my circumstances...... I have no idea. If it means can I have the occasional laugh, did I enjoy my recent holiday in spain, then yes I have. If it means do I not feel anger, Do I not think why me, Do I not hate dragging my sorry ass on / off beds-sofas-to and from my chair then No I haven't.

My loss has been a gradual journey in 3 stages, and my thoughts always go back to why did I have to go to a customers house that morning when that idiot slamed into me. What if I had gone the day before, the day after, or not at all ?

I know I have to learn to move forward, and stop "wishing" things were different, but I don't know how to. I have no one one to show me - help me - guide me. I want to though, so maybe I am half way there ?

Yeh I know, I think I am abit scewed up too !

AL

[Ratticis]

I spent nearly every waking hour of every day for 3 months desperately trying to move my legs or foot or toe or anything! I was driving myself nuts so I cut it out. I started writing or playing games or watching TV, anything to keep my mind off it. Then before going to rehab they had a big meeting about what to do with me (best course of action) with my doctor and some nurses and my parents and myself. I already knew the answer, but my dad asked the doctor strait out "will he ever walk again?" the doctor hesitated for a moment and I didn't hear a word that was said for the next 10 minutes. Of course my mom had to cause a scene and make everything all about her again, but what else is new >:|

Sure I still have my moments where I hate life, but I prefer not to mope about what I lost and be happy for what I still have. Live for today, plan for tommorow, learn from yesterday, and remember that nothing is certian

[chris135]

It's hard to say really when exactly i accepted it. I believed it almost instantly. I was still in the ER and all the doctors were asking to move this and move that then can i feel this or can i feel that. When i realised i couldn't feel or move anything i thought to myself "ah shit". They docs said something but i can't remember what it was but i knew that something was definately wrong.

What sealed the deal was when i was in the ICU waiting for surgery i was laying in the bed and i couldn't move or feel anything no matter how hard i tried. Finally when the doctor that was doing my surgery came to talk to me he told me that i was paralyzed and blah blah blah. I asked if i'd ever walk again and he said it doesn't look good(i'm a complete and didn'd know the difference at the time). So i asked him for like a % and he said he didn't have one, so i asked for a ballpark %. Once again he said he couldn't. Thats when i knew this wasn't temporary.

However every now and then i try to move my toes or my feet just to check but to no avail. I still have hopes for stem cell research or other cures so i'm not sure if you can actually really call it acceptance. I just know that i dont have any hangups and although its rather difficult at time i can still honestly say that i love my life. Having this forum and these people with a great wealth of information has made the transition from rehab to home to everyday life much easier than it could have been.
Chris

[rue2you]

Justin,
I think that one of the most paralyzing things for all of us can be fear. Fear of what our lives are now going to be, fear of what other people will think of us. Fear of what friends we will gain/lose. Fear of being a burden. There are many fears. Another thing I believe, is that we feel so out of control. We tell our bodies to do something and it just won't or it does something we tell it not to do!! A loss of control is really fearful to. However, when we think we no longer have control, we all control one thing in common - that is our attitude. I think others have already said this, but I don't think you can ever "forget" you are paralyzed. Too many things are a constant reminder. "Accepting" - that one is another issue. I think we can accept our current situation, not that we may not hope for a change in it, but accept today for what it is and make the most of it. You woke up today, what did you do? Sit in your room and brood or try to do something productive today? Tomorrow may be something totally different.
Take it one day at a time. Accept today for what it is and enjoy it. You are young and you have a lot of life to give.

[wheeels]

Laying in bed the Dr saying you will not walk again, I accepted it then figuring if he was wrong great if he was right well then I've got too much else going on in my life with school and such to complain so might as well get on with life.

That being said I accept is but don't like it I would prefer to not be injured but thats the hand I was dealt and make the most of it.

Oh and seeing the young kid beside me with a brain injury and going off on everyone that was trying to help him due to it, I figured I could have been way worse off.

[KronicMayhem]

mcferguson, on Feb 24 2010, 09:32 AM, said:

Stickman, on Feb 24 2010, 12:19 AM, said:

The Black Sheep, on Feb 23 2010, 05:36 PM, said:

I actually don't think I have accepted my predicament yet, after 11 and a half years. I mean, the daily grind of doing things from a chair, getting in and out of the car, up the curb, into work, yadda yadda has set in, but it still doesn't feel like this is the way it's going to be for a very long time. I sometimes get the feeling that I can just get up and walk, although I've failed every time. I still don't think I've accepted it as permanent.

I have to agree, thats just about how i feel, like im just putting up with it for an uncertain amout of time.

me, too.

Same here, when i came to after they took me off the morphine one day i woke up and asked my sister who was beside the bed reading if she could unstrap my legs so i could get up, being that she was still 17 she had no clue what to say and called my mom who told me my megs weren't strapped down and that i couldn't walk anymore. I just said "Shit" then moved on with things, i always knew one day i was going to have something serious happen to me after all i had been through as a kid and teenager but never made this realization until my 17th birthday when my friend jumped on top of me landing on my neck and pushing the top 4 vertebrate forward. Never felt any pain like that to this day and had to wear a neck-brace for a few weeks afterwards but that's what made me realize my future. Once i knew the truth i just pushed it aside and got on with life, i actually set the record for the fastest recovery time in GF Strong rehab center (although i don't know if it still stands) at 4 1/2 weeks. To this day just like others here i wake up hoping i can walk find out i cant and get on with the day.

[Ratticis]

The same doctor told me I had a 1/5 and a 10% chance of walking again. That didn't really give me confidence in him

[S&W Winger]

I remember looking down at my feet and wondering why they had those concrete boots on me...thought the contracture boots were the reason I couldn't move my legs...about 5 weeks in, still not breathing on my own, just coming to from the twilight state, they told me I had a 0-1% chance of walking again...figured they just wanted to cover themselves with that "1"%...first, I was pretty accepting, with visions of wheelchair racing dancing in my head...but the worst part of all this for me has been the countless complications - infections, continuing surgeries, depending on a Hoyer lift to transfer, etc....

A few weeks ago I had a dream that I was paralyzed...then I woke up, and damnit...

Acceptance? Resignation? Making do, "one day at a time?" I do get through each moment by thinking things will get better...

...on a positive note...hmmm...uh...

...still thinking here...

Oh, yeah: I'm alive...

[hurbshankin]

I'm about 2 1/2 yrs post and still working on finding a happy balance between hope and acceptance. I'm still doing PT 3x's a week, so I'm certainly not giving up. But hey, I worked on my body before my accident. We'll see!

Hurb

[McTavish]

I am now five years sci and I know I have not accepted that this is me for life, the surgeon said the power may return sometime so I am clinging on to that little bit of light at the end of the tunnell. Although on saying that I am not putting my life on hold I am out there enjoying life to the full, I am thankful that I am so healthy and able to do everything (almost) for myself.

[carole338]

Its been three years and I know this is it for the rest of my life. Accepted it? I still walk in my dreams. I guess I'll never accept it.

[Wheelsonfire]

I think too many people get caught up in the word “accept”, when there is no choice, acceptance seems irrelevant.

We use the word “accept” to be able to move forward, I believe we “just get on with it, deal with it”.

There’s no point crying over spilt milk, no point pondering over the “what ifs”

Yes it is difficult, there’s a lot to get to grips with, by making the most out of the “cards dealt”.

Quads, wishing for just the use of their hands back, Para’s not happy for only having the use of their hands……it’s all perspective.

Rehab in Ireland, there’s everything from SCI, amputee’s and head injuries in the same building, I would prefer my chair any day over the infliction of a head injury.

How long did it take me to figure out that being a Paraplegic was better than being dead? No brainer don’t you think? For those scratching their head, straight away!!!.

[tallgirl]

Justin14, on Feb 23 2010, 12:55 PM, said:

This site is just so great...being so new to this I have so many questions and thougts going threw my head with few people to ask..This is one I've been thinking about for a wile...After you were hurt how long did it take for you to really except that you had a SCI?....When I came to after about 3 weeks and can remember my Dad telling me what had happened I really thought he was screwing with me...It was about another 2 weeks till I got to rehab that I started to believe him...When I got home is when it all really sank in for me that this is it.

Do you ever accept the fact that you are paralysed? I don't think so! On the surface it looks like it and on good days you get on with things and seem not to be bothered. Scratch a bit off the surface though and you find this ever present annoyance and questioning...this will not go away. But as so many here said we have found a strength we never thought we have and still keep going...we are not far enough to just throw ourselves into a corner and give up.....