Having a spinal cord injury has many facets to it, not just the technical medical side, but the psychological side as well.

The psychological side of living with a spinal cord injury is a bit like peeling an onion, there are many layers, and as you get to the heart of it, there will be many tears.

Understanding your injury does help in some respects for some people, in to coming to terms with their injury. For others, coping can be denile of the injury, which spurs them into action in making the best of their lives.

Some people can not see that there is still a life worth living with paralysis, but hopefully, time helps, and adjustments can be made to make life tolerable, and for some, very fulfilling.

So, this Poll is to see how you are coping, or not, with a spinal cord injury.

Simon.

My SCI has left me with more function than most members here, but I've had the neuro-deficit all my life, straight out of the gate, so it's probably been a little easier for me to come to terms overall.

I would guess that so much has to do with how flexible/adaptable to change one was before the injury, having the ability to begin where one is at that time and go on.

Having been raised by parents who were married nine times between them, and spending a total of years in hospital as a child....I learned to be adaptable early on. The scenery changes, but I remain the same, for the most part.

From reading other posts from members who have more physical losses than me, I'm even more convinced that the human spirit is indestructable. A rich life can still be had after a SCI...not just a facsimilie thereof, but one that is genuinely meaningful and productive. That one is difficult to believe for someone who is newly injured, and everyone moves along at their own pace in that respect.

One of the most important functions of this board, IMO, is the unique opportunity to speak to others from 'the other side' of the injury/recovery, and to let them know that they don't always have to see 'through a glass darkly', and that real, lasting joy can still be had in this life. That's my wish for everyone here.

Aren't 1 and 6 the same ? Ditto 2 and 5 ?

Discuss

Hi Russ,

They are similar, but (2) indicates a lack of acceptance due to the injury, robbing one of independance, getting angry at what your body cannot do anatomicaly, whereas (5) indicates the inability to move forward due to only focusing on pre-injury memories.

Question 5 is similar to the "Peter Pan Effect" of being stuck in the mindset of your pre injury abilities, not being able to grow emotionally, and getting stuck in a rut, dwelling on what you used to be able to do, but can no longer.

Simon

I am 3months post-injury and my emotional state is like the ocean. Sometimes its flat, other times it gets windy and the small waves start coming, then, I'll see something, hear something, or do something that reminds me of something and BOOM! there's a tsunami headed my direction, then, after distracting myself the ocean goes flat again... and every now and then there is a beautiful sunset over the ocean and I get happy, but then I get an anxiety attack because psychologically it seems like being too cheerful for me right now messes with my head. Its like I'm forgetting that I have an sci, but inevitably I always have to come back to it. But I guess I can learn to be happy in the future.

"I look back on my life before the injury with fondness, and I try to be optimistic about the future."

Hey, I still get feelings like that after 24years. Something which has helped over those years was to get on and live my life and not waste it waiting for a cure. Of course I want there to be a cure, but for me personally being able to walk is no longer important.

Reading through the posts here I realise I have been extremely lucky in that movement and feelings returned enough for me to be completely independent. As a former nurse I have been able to look after myself so I don't get UTI's or pressure sores etc.

I had a great deal of trouble accepting that I was "disabled" and I guess with that chip on my shoulder I set about proving that I wasn't. Physically Challenged is a better word.......after all isn't life for everyone a challenge?
I took, as well as made, my own opportunities and now with nothing left to prove to anyone I AM WHO I AM.

Apologies if this wasn't the place to express those feelings.

I have always thought that stem cell research was the way forward and I hope one day that no more cats get their necks and backs broken in the name of science.

I think to keep yourself sane, you have to accept what's happened to you. Living in denial will just screw you up

jason has this whole big thing about 'whatever will be will be' and so just lives life as good as he possibly can and ignores people that tell him he cant do something, which although might not neccessarily be for the best, if it makes him happy... :S

hi all,
just wanted to say great poll thanks simon!

also wanted to say in my opinion there are differences in each point. may be minor to some but for others may led to ticking another option.

i chose the last one. i do go up and down, not drastically but you know,sometimes it does hit me at a moment when i wish it wouldn't that yes i'm a full time wheelchair-user and c4 tetra. with all the joys that brings! lol

sometimes its other times it could be a but hey most of that would be without the sci so the sci = ! lol and the rest!

take care
laura

well... i live the best i can. even though we loose movement of certain parts of body, we should never let our spirit be dead and passive.

lets say that I have accepted my injury, I'm not happy with it, I live my life the way I chose to in the situation,and I know there won't be a cure in my time, and if there is it'll be to late for me.. I have my plans fo the future.

theres no option for living life after injury and loving it, not just content. two choices are close, but not really there. I may like to be cured, but I'm having too much fun with my life right now that I wasn't before.

I'm coping just fine. My life is back to "normal" minus the walking part. The only thing that concerns me is that I personally would like to get back to the walking part. However I find other people in the WC who don't have any desire, hope, or care care about walking again. I wish people would be more proactive and less negative in helping find a cure for paralysis.

I had some medical training before my SCI . I rolled a semi in the middle of nowhere. It took a hour for the ambulance to come. So I had lots of time to think about what I knew was wrong with me. I had accepted my injury so well that the ambulance attendent said that he was going to adopt my attitude to life. Of course I didn't know all the problems that come from SCI. Having a wife who is a great care giver and having insurance make a wolrd of difference.

It might be wasted energy concerning yourself with the way you want another people to be. The one person's life you can control is your own. You are responsible for your own life the same as the rest of us.

Some very positive people are searching for a cure. Other very positive people are living their lives to the full with no expectation of a cure for them.

With two-thirds of my life having been SCI, I accept a cure for me is not realistic. To keep that fantasy alive would be an indication I had not accepted my situation. But, as a younger, newer SCI, it is realistic for you to be keenly enthusiastic and optimistic for a cure. Go ahead and link with like-minded people. But stay clear of your own negativity that is insensitive to the needs and dreams of others.

i have accepted my disability i still do everything i did before i got hurt if not more theres plenty of sporting opportunities etc... i crack jokes to help me cope as well theres no point in whining over things you can't control

I understand. Nomis as you have grow up with most of your life having been an SCI do you recognize many times that newer SCI people are positive and searching for a cure, as their lives grow wiser they have less "fire" about searching for a cure?

I think most people re-adjust to their circumstances as time progresses. The first two years are critical for potential recovery. After that the chances of recovery are not so positive. Twenty years on they are less likely.

I don't think the "fire" in older SCI's grows dimmer, it shifts to other parts of their life. I'm as fiery with life as ever. It's just my focus that has shifted to suit my circumstances and understanding.

Personally I really only saw 3 options for myself (when I was 1st hurt); #1 keep being pissed off at everybody that wasn't under that sign and can still walk (wasn't getting me very far) #2 keep feeling sorry for myself and cry every time I couldn't do something I wanted to (too many dead trees for the Kleenex and too much time re-doing eye make-up) #3 Figure out a way to enjoy life in spite of............#3 I think has been a much better solution in the long run. LOL Laugh or cry?.......I'll take laughing thank you.

I think it's mostly up to the person..........we all have different ways of dealing with things; some of us are just somehow naturally better able to handle and adapt to any sort of major loss or tragedy; but having a supportive family and friends sure does help.

I can never accept my situation but I am grateful for what I do have. 50/50 Dark times & Good Times.

Jsec64, I’m not sure I can accept “…can never accept my situation…”
Aren’t you confusing ‘not liking’ with ‘not accepting’.
It seems to me that you have a realistic understanding of the situation.

By the way, nice blog. Clearly presented. Congrats.

I need to qualify this answer. I don't remember much from before my accident. I had a brain injury when I broke my spine. I just have bits and pieces that aren't in order. I like hearing about what I did. People sure have different opinions.
After BVR messed me over I got a job by looking in the newspaper, so I resent gov't bureacracies that just suck on the money teet.
after 16 years I lost my job and getting social security was like pulling teeth. I'm stunned that I got medicaid. So I don't think I'm productive, but I enjoy my life of wasting other peoples time and creeping out little kids. I like to beg and meet new people. If you meet me in cincinnati, just talk,, the money can is just for fun...and money.
As soon as I think I'm well adjusted I turn up cursing at a curb or releasing my leg bag by the drivers door of an athelete that parked in a handicapped parking place.
When lifes a bitch, bitch right back.

It's either live with it or lay down and die. I'm living with it . Sure , there are things I don't like, but I dealt with things I didn't like before.
like most of you , I have good days and bad days.I try to have at least 4 good days per week. That only leaves 3 for bad days. I want more good than bad and this is how I try to live. Some times I have to "fake"doing ok to keep my average up.

Hi Nomis
Your right - just one of those weeks where you question 'Everything and Anything' and still get p****d off. We play the hand that we are dealt - we dont have a choice. If it wasn't for my family I would not be here or rather would choose not to be.
I dont mean that to sound as 'off the cuff' as it comes across but without their love, support and strength I would have serious issues with the future. But hey I am extremly grateful and humbled by the stories of others here.
Best Wishes to all
John

I have not, not my spinal limitations, illness (how sick I am), none of it...

I try to cope with the way things are, at my age, I can't afford to wait and fight for a cure that will probably not come in my life time.

Instead, since I miss working, I've decided to look into going back to school. I'd qualify for UT as soon as social secruity gets it in gear. Until then, I'll have to think about what I want to be when I grow up.........

I'm still wondering what I'm going be when I grow up and time is running out.

[quote name='smokymtn memories' date='Oct 12 2007, 09:49 PM' post='42972']
I try to cope with the way things are, at my age, I can't afford to wait and fight for a cure that will probably not come in my life time.

That is my take on it also. I am just over year post injury, that is my injury was years in the making but only recognised and dealt with last year. I have always lived by myself and have been very independant. The most important thing for me was to regain that independence and I have achieved this. Even tough I will always only be able to walk slowly for short distances with crutches I have been able to return to my first floor flat, to my job in accountancy and am driving again.

As long as I have the strength to keep all that up I accept my physical challenge and just get on with it.

Just had another operation for yet another herniated disc, but this time a lot lower down and at least I am now fairly painfree.

Painfree and walking with crutches.

I'ld take either one.
ed

I am not totally painfree but I can take the bit I got without taking too many painkillers. Just some Baclofen.

That L5/S1 disc was pressing on the sciatic nerve. VERY PAINFUL. Now my right leg is good again, but while in hospital I had a fall and did my left knee in. Didn't think it was too bad until I got home and was walking more. Now standing up and sitting down gives me a shooting pain in my knee so I guess I better have that checked out.

Story of my life: I am a continuous accident.

the answer that's the best fit for me is #1. I don't like the word accept. This seems to indicate to me that I have reached some sort of state of contentment and don't even wish for things to be different. Of course I am trying to live my life as best as I can but there's not a day that goes by that I wish this had not happened. I wish for a cure but I don't think much about it because I don't think the chances of it in my lifetime are that great. I can hope for it but I can't put my life on hold for it.

I don't see "accept" as necessarily reaching contentment or as surrendering. I see it as acknowledging the facts and assimulating them into how you deal with your life, which could be positive or negative.
I think your remarks about a cure show a clear, informed acceptance of that aspect.

yes accept is a difficult word, depends on how you define it. I'd rather say I have adjusted, I guess, because what alternative is there? (besides suicide and substance abuse). I guess I just got tired of hearing the word accept in rehab. What I hate is that people have such low expectations....it's a bit discouraging to constantly have people be surprised that I have a job or that I can take myself to the toilet.

I hear ya. Soon after my injury I went to a brothel with some buddy s and when we were inside and they had all picked a girl an AB friend and I were still looking when this woman came up and ask my friend if she could do me like I wasn't there boy was that an eyeopener for me. I didn't pick her.

Aren't words fun.
I can understand your preference for 'adjusted' but if you hear that too often it too will be offensive.
Whether it's 'accepting' or 'adjusting', when it relates to me, I like to be the only one using those words.

[Aren't words fun.
I can understand your preference for 'adjusted' but if you hear that too often it too will be offensive.
Whether it's 'accepting' or 'adjusting', when it relates to me, I like to be the only one using those words.
[/quote]

So true. Me too, Nomis. Yesterday someone opened a door for me and said it must be so difficult for me - I said opening doors wasn't a problem and he said, but crossing the street...I said crossing the street was easy and least of my problems....he looked like he didn't believe me! I get tired of explaining these things. And of being asked why I don't put a motor on my chair almost every time I go out.

I had a closed head injury (traumatic brain injury) along with my spinal cord injury.

I'm going on 14 years since the accident and I am still having problems accepting it. I think a lot of my problem is that I have been unable to get a job since I was laid off in 2001 in a department-wide layoff. I'm also pissed because one of the people I worked with was promoted to Marketing Director and was less qualified than I was and she got the promotion and I got laid off.

Nobody wants a pushing-50 incomplete quad in either a soft job market or a good job market.

I did manage to pull myself together enough to write a book on spinal cord injury to try to help others and I've done some freelance writing, but the financial problems the accident has caused in the long run with the complications are hard to accept.

My injury is also hard to accept because my condition is deteriorating with the central cord syndrome. I t's also variable from one day to the next. I never know how well my body (or my brain) is going to work from one day to the next. My legs collapse without warning.

Carolyn

"I have accepted my injury, live my life, and am content, not waiting for a cure"

I had a car crash november 06. Prior to my crash, I used to drive like an absolute tw@t at times (excuse my language but it's the only way I can explain it really). I was a 20 year old lad who thought he could drive better and faster than everything on the road.

Frankly the way I crashed I was lucky to 1. not have hurt anyone else, and 2. not killed myself.

I honestly think that knowing what I know now, I will lead a better life. these past 1 1/2 years have been the happiest of my life. I've learned whats imortant in life, get on with my family and have learned to chill out.

Quite honestly I wouldn't want to be "cured" now. getting rid of the pain would be a bonus and the feeling back in my wedding vegetables, but that would be all I want.


I also realise that although I feel I'm in a lot of pain I may be in a lot less than others am. Also I don't have a complete injury so there would b many other people happy to be in my circumstances than theirs, but I have found that this forum (although there is a massive potential to be) is one of complete lack of jelousy

Hee hee, that phrase made me giggle
Tx

What a great poll!

Sadly, I am unable to select an answer...yet. Have I accepted my injury? I am adjusting as best I can but I am only 8 months post-injury. My SCI is incomplete and my body is still changing. I certainly grieved my loss initially (no sensation for first two months & no motor function for first three months) but I am still working hard in physiotherapy and making new gains. It is an odd place to be. My dad keeps telling me to "enjoy the journey" but I'm not really enjoying it. I don't feel like I have an identity and things are on hold. They just simply are.

I've returned to my life and made adjustments in my home and workplace so I could continue living. I am proud to have learned how to be independent in my life and I am doing things I enjoy: work, social, hobbies.

Notwithstanding, I feel like I am living in limbo. I don't really feel disabled and I don't really feel AB. I feel like I'm just injured and fighting to get back as much as I can. I honestly don't believe that I will ever be as I was before, ever. Not knowing what my body is going to be able/unable to do is, well, scary.

If I am unable to walk again, there are physical activities I'd love to pursue but I'm not pursuing them right now because I'm trying to learn to walk again. If I learn to walk again, there are physical activities I'd love to return to. Things are on hold until I see where I'm at.

I will pursue my life with passion whether I walk or wheel but the inbetween stuff is bugging me. I'm not enjoying the journey. Things will eventually stop changing and I will be happy when I get to that point so I can say, "ok, this is where I'm at and this is what I'm going to do," but I'm not there yet.

I'm tired and frustrated.

Yeah, that's pretty much where I'm at, too. With one exception - I stopped improving months ago. With CES it may be years before I see any improvement in motor and sensory function, if at all.

What really gets me down is that the things I loved to do before are now just one more task to get through. I think it would be easier to handle if I wasn't so fatigued all of the time. The harder I work out the worse I feel - and it never seems to get better.

Still, I have a lot to be thankful for. I'm doing better than expected and I know there are lots of you with less mobility than me. It's just that some days are better than others and today sucks. Maybe I just need to get some ice cream.

I'm not sure... I broke my back almost 13 years ago and think that by somehow remaining in a long-term state of denial has enabled me to keep moving forward. For a long time it was even uncomfortable for me to associate with other disabled people. I think that was a combination of not wanting to address the fact, and feeling guilty because my injury is less severe than other peoples' (my injury was at T12-L1, but I can walk with forearm crutches... though I spent enough time in a wheelchair to know what it is like). I think it sounds messed up that I feel guilty, but I'm putting it out there.
But now I want to know how it is for other people (thank you to everyone who is so open here... I just found this site today and think it is really good and will read and post often), and hope this can provide a forum to start to open up about it all. I've been rather pensive about the whole thing lately (coming up on the anniversary of my accident might explain that) and am realizing that I've spent a long time feeling quite alone and like I have a lot to hide. I think it is time to open up and learn how to trust other people enough to let them know how it is for me, and maybe even get close to me.

Hi!
Welcome to the forum!

Guilt is a strange thing, there is a saying that guilt is anger directed at yourself. You have no reason to feel guilty about your level of injury the same way as I (or indeed most, if not all on this site) do not feel jelousy towards you because of your level of function.

Good luck in resolving your issues, any problems just holler, there's always someone that can answer pretty much anything!

Trinity X