39 replies to this topic

[Ecaynot]

Are you like myself, having a hard time dealling with the new you?

Well I am tring to accept myself for the person I am .......but I am having a really hard time...

I had a motorcycle accident which I should of died. Instead I'm here dealing with this crap while trying to be a happy person. YEA right its hard when people still remind you of that person you used to be.

And not having many friends doesn't help......well thats enough bitchin.

[Joed]

My physical changes weren't as sudden or drastic as most of the members here. I guess you could say that I've been becoming paralyzed slowly most of my life. But when my life started to become noticeably different to others...w/c, brace, cane, and all the other trappings that come with SCI, I did lose some friends. That seems to be the norm from what I've read from others here. That's hurtful, and a major adjustment at a time when you're least prepared to cope with it.

In a way, it can be a benefit...as we have the unique ability to 'cut to the chase' and weed out the chaff, that able-bodied people can't do as effectively (or as quickly!). What remains are the true friends...not just the good-time ones. But even knowing that...it still hurts, I know. Human nature can suck sometimes.

Ecaynot...you didn't mention how long ago your injury happened, but since you used the phrase 'the new you', I'm assuming that it was fairly recent. (?) For me, I felt so foreign in my own skin after my paralysis...for about 6-8 months...then gradually I began to recognize myself again, bit by bit.

In many ways, I've had to reinvent myself...not totally, but in those areas where I know I'll never return to the way it was before. It may mean choosing a different hobby than the ones you enjoyed before, or modifying existing ones, or even changing your circle of friends somewhat. These adjustments are difficult because we've spent entire lifetimes nurturing those areas of our lives, and it just takes a lot of time to recreate another reality that fits with where we are now. The interim is the hardest part...but eventually, you'll start to find new niches...and then one day you'll wake up and suddenly realize that you're actually excited about something. It takes time.

The 'person you used to be ' is still in there...it's what you used to do that changes. But as you go along, you might be surprised to learn that much of what you used to do is still attainable too.

Allow yourself the permission to grieve the losses...but try not to dwell there too long at a time. Try and balance that out with actively reclaiming your life...that is where you'll find strength and hope. If I was able to take anything with me when I leave this world...it would be those.

You're gonna be alright. You may not believe me now, but come back in a year or two and tell me I'm lying!

~Blessings

[gazrobsuk]

Yep, I think it's normal to be honest. I was the same in the first year then I just decided it's a straight line so 'up or down' & to make the best of it. Of course I was lucky that I was (and still am) married so I had good support which really helps.

Now despite the ups & downs I push all the time to better last months 'targets'

[jane]

yep, i guess thats me too - i really don't like accepting what is happening. I have also noticed that people (friends?) are a lot different to me now. some don't even get in touch anymore

[kanga2433]

yes, I'm sure that it is right that we have come to accept ourselves in our new state. I think this is probably the hardest part of recovering from serious injury and paralysis. The person who emerges from the hospital is in theory the same person who went in and everything has changed.

The people who love your have to discover on that you are really, underneath the hardware the same person but it somehow a difficult for them to accept and understand and to work with. It seems to leave this reason that very often partners or spouses walk out on the injured partner. This is the quite common. I would have thought that and one lost friends as a result of paralysis, then it will be hard not to think that maybe they weren't friends in first place.

Of course, if one has spent months in hospital coming out into the community is against different and what is normal in a hospital, i.e. using a wheelchair, the community one is a bit of an oddity. People may stare at you and frequently children ask their mothers "why is that man in wheelchair?" all this one has to get over and get used to as part of accepting one's new body state.

fear not, though, as you work at it you will find the gradually you accept your new position and liked it easier and settles down to what we might call, bought anything better, normality.

[Bob Clark]

Motorcycle accident here too. I like my mind and even enjoy it... but I hate this paralyzed body. I used to be so gooooooooooood lookin'. 6' 1", slim and trim with a beautiful golf swing. Now just a slug on wheels.

But look at the bright side..... foot tapping..... ummm, can't think of it right now.

[laura]

hi all

i really do agree with what others have said above. have a query though-

sometimes i wonder what the word accept really means

what do you think?

sometimes i feel ok in myself and sometimes i don't.

wasn't that like before my sci though?

i really don't like the fact that new people i meet now don't know the 'old' me, pre sci. post- i can't express myself how i used to. i worry that they won't see me for who i am.

on the other hand, i can also be a 'new' me. meet new types of people and do different things. i meet and chat with some really fab people and the not so nice people are clearer to spot-most of the time!

the ups and downs of earth and humans.

regarding the friends that are around, i try my best to show them who i am -their friend,that's not changed! i can do that! we all change and develop its just what we change and develop into that counts!

(any hope for me then?! )

[Joed]

laura, on Feb 21 2006, 08:06 PM, said:

i really don't like the fact that new people i meet now don't know the 'old' me, pre sci. post- i can't express myself how i used to. i worry that they won't see me for who i am.

Laura...

I deal with some of that too. My husband didn't know me when I could run, dive, ride bikes, etc. I'll be relating a past experience to him, saying something like, "and so then I ran into the house...", and he'll look surprised, saying, "You ran?" It's hard for my husband and son to imagine, but I used to run three miles a day...walked in 15 mile marathons for the March of Dimes...ran with my nieces and nephews on my shoulders, etc. It makes me sad when I realize that they can't seem to find a place for that in their perceptions of who I am. That in itself is a loss for me.

The new friends I meet can't believe that I used to live by myself in a log cabin, waaaaay out in the middle of nowhere, chopped my own wood, hauled it, worked for seven years in a furniture factory, trained boxers, etc. I sometimes feel like I need for them to know that about me, or they won't really know what I'm about...not completely anyway...even though those things aren't a part of my life today.

But you've made a good point. Changes happen in our lives, injury or not. It's a natural part of living. This just throws a little more drama into the mix than usual.

[Ecaynot]

I want to say Thank You very Much for your understanding. for some dum reason I find myself alone. My accident happen on Oct 17 2004. and yes I am happy to be alive. And I know I wasn't a good person before, with the LIES,DRUGS, and just running wild. I am married 14yrs.and have 2 girls 13 and 5. I have a really hard time with my 13yr old (alexandra) she makes me wonder why am I still here.Now my 5yr old (josie) she WILL do anything for her daddy.When I cry she will come to me and give me a hug ...and say that "she wishes I can walk one day so we could walk in the park together". WOW by that time I'm in 12" of tears.,I don't know any of you but I would really like to. Hey guys/gals my e-mail is ecaynot@cox.net and I live in Virginia Beach.But really THANK YOU.God bless you all

.
Tony Ace

[mttb14]

Isn't love, marriage a wonderful thing.

I have been with John for 12 years and married to him for 2 1/2 years. We have a very good relationship, but during that time I have felt like screaming, leaving, crying, laughing, etc etc. John has C5 and C6 cord injury, but he is not paralysed, he suffers from chronic pain, spasms, tightening of the tendons and all that is entailed.

When we go to bed I pray for sexual relations he prays not to have spasms and pain and to be able to have a nights sleep. He regularly has to visit doctors and he has had pins stuck in all sorts of areas and the more pain he is in the less feeling he has in lots of parts of his body. He regularly goes into retention and then has high blood pressure. I moan to doctors about not having sex, he moans about pain and spasms. I feel selfish and so does he.

He says, it is the thought that sex might jar his neck, tighten his tendons or create even more pain than he is in, and this has been proven on occasion, so he wants to avoid it all cost, (viagra still in box unused) and that he does love me, but he just cannot face sex, he says he feels terrible about it for me, and hopes for a day when he loses those fears.

I say, well I feel unattractive, not sexy etc etc, then he say well you try having this pain, and tells me to find someone else who can give me what I want. My friends all say they would love a husband who was happy to just cuddle and kiss, but I bet they wouldn't in reality.

Ultimately, we do talk about most things and we seem to have work out a way to do most things as a team, and we always tell one another we love each other, and we always have kisses and cuddles. We actually have a happier and more open marriage than most of our friends, even if we cannot do all the things we used to, we know one another really well, he snaps, I sulk or cry and then he apologises, but I expect I would be exactly the same, if I was in his pain and couldn't do all the things he cannot do.

I think if you can talk and still love one another, when I married him I was already doing the in sickness part of the vows on a daily basis so I knew what I was dealing with. Not that it makes it any easier, we just have to live life at his pace. One good thing is that when he can walk any distance these days, it is at my pace, so I don't have to run to keep up with him like I used to. He always says you like my legs hurting don't you, because you can keep up with me. As I said it is laugh or cry so you may as well try laughing, and then when you have to cry, do that together to. It is ok to say I'm struggling to deal with this, it makes that person realise how much pressure you are under as well.

Hope this helps, I know it has helped me since I found this site and John actually feels as if there are other people who understand chronic pain.

[carolline]

We ended up to the point here about MARRIAGE.
As I read in the book....it says like this....

"YOU GET TESTED,YOU FIND OUT WHO YOU ARE,WHO THE PERSON IS,AND HOW ACCOMODATE OR DON'T." Is there some kind of rule to know if a marriage is going to work? There are few rules to know to be true about love and marriage: "IF YOU DON'T RESPECT THE OTHER PERSON,YOU'RE GONNA HAVE A LOT OF TROUBLE.IF YOU DON'T KNOW HOW TO COMPROMISE,YOU'RE GONNA HAVE A LOT OF TROUBLE.IF YOU CAN'T TALK OPENLY ABOUT WHAT GOES ON BETWEEN YOU,YOU'RE GONNA HAVE A LOT OF TROUBLE.AND IF YOU DON'T HAVE A COMMON SET OF VALUES IN LIFE,YOU'RE GONNA HAVE LOT OF TROUBLE.YOU'RE VALUES MUST BE ALIKE.AND THE BIGGEST ONE OF THOSE VALUES....YOUR BELIEF IN THE IMPORTANCE OF YOUR MARRIAGE."

[AHolland]

I sometimes wonder how my wife does it, or why she does it. She is an attractive woman and could do better if she wanted to. I guess that means she is committed to our marrage one way or another.

Chronic pain. Ahh how I love to hate you. It's there with you every day and there when you wake up each day. It's just as committed as the wife I have. I have been on these forums only lately because I have been fighting the pain so much.

Am I okay with all this.... I guess I have always accepted myself for who I am. I was a good person. I still am a good person. At least I can look back and say it has'nt changed me. At least I am not bitter as so many become. I think that bitterness you see in so many old or disabled people is really just hurting themselves. At least I recognise that.

What can we do but go on and see what is around the next corner in life. Life never said the adventure would be easy. In fact the trials we face and the trials we overcome define us a people. Some fail and some succeed. I have never given up and will not now. Maybe one day I can sit smoking a cigar and drink a beer on some far away peir and laugh at what I was able to overcome......

[mttb14]

Hi,

I expect your wife stays with you, because she loves you and still sees you as the same person you were before the accident, which is exactly what you are. The only change is what you can and cannot do. We do not fall in love with what you can or cannot do, we fall in love with the person inside the shell of the body, or we do if we are truely in love with the person.

I find the people on the outside far more frustrating to put up with than John's injury. Especially people who should know better like doctors, specialists and solicitors dealing with injury claims. They should by now have learned to understand how chronic pain works, and how very very real it is. I find their attitudes very strange, when asked how is your pain today on a level of 1-10. Is that with or without the medication, one persons pain levels are so different to anothers. The longer you are in pain the more you get used to it, so your levels differ, by now they should have devised a better system for assessing pain, maybe they need to live with pain to understand, but they must see enough patients to know how very real it is.

In a way it has made John a better person, he was a great person before but he is less shallow, he now knows beauty is definately only skin deep, and his values have definately changed, but that might have changed with getting older too. Anyway we nearly always see someone worse off that us and you are grateful for what you can do for yourselves.

Bye for now

mttb14

[Joed]

Quote

mttb14 wrote: I find their attitudes very strange, when asked how is your pain today on a level of 1-10. Is that with or without the medication, one persons pain levels are so different to anothers. The longer you are in pain the more you get used to it, so your levels differ, by now they should have devised a better system for assessing pain

I know just what you mean there. I've always found the 1-10 scale confusing and inadequate. Unfortunately, our vocabulary for expressing pain is quite limited. But it's the 21st century...you'd think we would have come further than asking patients to choose between various smilie faces or numbers, denoting pain values.

It can be really complicated when one has several layers of pain...ie: neuro, musculature, and skeletal. They all tend to blob together, making it difficult to convey to a doctor, etc. When they ask me to number my current pain, I'm usually lying down, which places me into an almost pain-free zone. But had they asked me when I was sitting in the waiting room, my number of choice would've been quite different....an even different number had they asked me when I first sat on the edge of my bed that morning.

I get confused even further when I realize that often I am not consciously aware of the pain I'm in. Like you've said...when you're in chronic pain, we subconsciously find ways to cope with that, just so we can go through the motions of everyday life, and so we often become disassociated with that pain, making it even harder to convey.

I'm guessing that most people in chronic pain tend to underestimate the true level of pain they're experiencing. It's important to be as self-aware and brutally honest with yourself that you can, or otherwise you'll run the risk of being undertreated for your pain.

[benok]

for my part, i think I have come to accept of my disablity as something to live with. Not to sugar coat it but I think all this is "temporary" for until when we are still alive and kickin. But when we already move on to the "next" life, all will be well.
( a little spiritual here )



have you seen angels with cruthces or on wheel chairs?

[draco12]

i too hate the new me. i constantly live in the past remembering everything fun i used to do. it is so very taxing on my mind. i just cannot accept the new me. looking in the mirror sickens me. what to do?

[itsjustme]

For those of you who are really struggling with "you" I strongly encourage you to pick up a copy of The Purpose Driven Life by Rick Warren. I promise you'll find some answers.

[In The Wind]

It's been almost 5 years for me, I wish I had died. (bicycle accident) I'm a C-5, incomplete and as far as that goes, very lucky as I still have good arm and hand/finger control..

I came from being an all alpha male to a C-5 teraplegic. I would rather have died in the woods. Still considering an OD to just get this over with. Nothings gonna change, no one seems intrested in hiring a gimp, even I though a had a very successful career in IT before,

I just know I don't wanna get old like this...

[Ecaynot]

[size=3]Hey thank you for visiting and reading accepting yourself.
[size=4] I AM turly sorry that he is that position, Why did you say he lost the kids? The kids are family, and you never lose family. Oh by the way my name is Tony. And I would like to be your friend and of couse HIS friend also. were do you live at? I live in Virigina Beach.
What I wrote I was in a bad situation, depression is a mother f**ker.but He CANNOT give up. You
guys must stay POSSIVE in order to have people feel alive around you. Listen I DO ACCEPT MYSELF NOW!
I had to do alot of soul searching and I am happy with who I am...I just want to help other people. it makes me feel good inside. If you want to keep in touch GREAT. If not I understand but no matter please try to get possive........you are alive thanks to god.
GOD BLESS you two.
PEACE Tony

ashisback, on Mar 25 2006, 08:56 PM, said:

hi my partner cant accept himself is a quad cant move at all and cant talk lost all hes friends and even hes kids yeah lost hes kids the only ones he lived for he really does hate himself

[Ecaynot]

DUDE that SUX, sorry to hear that......now wait a minute..I am a T12 / L1 incomplete and I LOVED cycling mountain and road. I used to race until 15 months ago.....But as far as I know I will be in a wheelchair for the rest of my life...................BUT have I never given up, f*@k NO !!!!!!!!!!! I have been down and depress I will amit that but never thought about OD'ing to get over with it. OK I can't do what I just to do like work play and etc. but I still have deams. Deams of walking using items that will help me walk
OH and to this day I WILL race again, I do about 5-10 miles a day on my wheelchair. Yes wheelchair...and you know what that makes me feel Good inside,like nothing going to stop me. I live in Virginia Beach and on May 13 there is a bike event. the name is Celebration of life. That is a 25'50'75 miles. And to prove to myself and everyone I am doing 50 miles on my wheelchair. It would be GREAT if one day WE could do something like that together. Listen so you can't GIVE up!!!!!!!!! no matter what. his is a cross in the road and its up to us to take the correct path.
Well my friend I will stop for now......but please keep in touch.. You have a friend indead.
Tony


It's been almost 5 years for me, I wish I had died. (bicycle accident) I'm a C-5, incomplete and as far as that goes, very lucky as I still have good arm and hand/finger control..

I came from being an all alpha male to a C-5 teraplegic. I would rather have died in the woods. Still considering an OD to just get this over with. Nothings gonna change, no one seems intrested in hiring a gimp, even I though a had a very successful career in IT before,

I just know I don't wanna get old like this...
[/quote]

Edited by Ecaynot, 26 March 2006 - 02:42 PM.

[In The Wind]

Oh yea, I did all that (it was 6 miles a day in the W/C for me, now 12 on the handcycle). Pushed like hell for 3 years, up hill backwards, the whole bit.

Then you come to realize that your friends have drifted away, women that used to turn and look now only turn to look away, career melted away, alone and living with mom . Any job I could get pays less than my disability, stuck living this death over and over everyday.

It would have been easier on everyone involved, including me, to have just died. That way it would have been a point event, then everyone else could go on with their lives

[michelle06]

In The Wind,

hey now....be easy on yourself...don't ever say that you wish that you would have died, sure some days might be bad but come on... you say that the women that would turn to look now just turn away, well me being a girl...i would never be turned off just because of a wheelchair or whatever it may be...i have a boyfriend who is in a wheelchair and he has always been in a wheelchair for as long as i have known him but that doesn't change how i feel for him...i still love him the way he is and i know that there are many people out there who love you for who you are and realize that paralyzed legs what you have not who you are... i also know that there are many people who themselves would wish they would have died if they would find out that you did... you are loved for who you are...remember that
*hugs*
~*Michelle*~

[sandyrun]

IN THE WIND

First, I want to say that I truly hope you forget about the ODing. Please consider your mom and extended family and friends.

You say no one seems interested in hiring a gimp. Have you considered going back to college and getting a degree (if you already have a degree, perhaps a different one). Have you spoken with a counselor with your Rehabilitation office? You are from Arkansas. So am I. I went to the Hot Springs (Arkansas) Rehabilitation Center back in 1972-1974. I took my secretarial – business ed courses there and have been working for the State of Arkansas now for 32 years. Made many friends while there, mostly paras and quads, and am still in contact with some of them. I’ve known more than one of them that worked after Rehab. Some went on to college and got degrees and worked until they were no longer able to work. They set goals and reached them. They made life have a purpose for them.

Almost all of the quads and paras I know say that some to most to all of their previous friends are no longer friends. That they don’t want to see them like they are now; to remember them like they were. Well, I think that is hugely selfish on their part. What these guys have done is gone out and made new friends. I think the old ones that didn’t stay around, well, how really true and loyal friends were they? Friends love you no matter what. Make it a point to make as many friends as possible. You can never have too many.

You say that women who used to turn and look now only turn to look away. Maybe you haven’t found the woman/women that can care for someone from the inside out, instead of the outside in. Being in a w/c does not mean that you cannot have fulfilling relationships or marriages. While at Rehab I dated a para for 8 months, until he passed away. I married an able-bodied man and was married for 30 years. I got back in touch with a quad friend in the fall of 2003 and have fallen head over heels in love with him. I love him for his heart, mind and soul; from the inside out. I did not fall in love with him because of his disability, but in spite of it. People who can only get to know someone because of the way they look on the outside probably have missed some of the best friendships/relationships that life might have had to offer. I know some women who will not date a man if he does not have money, or is not good looking. Well, from personal experience, I am glad that I can look at what the person is, not what they look like or have. He has made me so happy and I think of how much happiness these other women probably have missed. Those relationships usually don't last. Why? I think because they are looking for the wrong things. They are looking for material, not happiness.

I hate that you feel you are “stuck living this death over and over everyday”. You have a purpose in life. We all do. I don’t know what mine is yet, and may never know. I hope you can find yours. You say that it would have been “easier on everyone involved, including me, to have just died” and that “everyone else could go on with their lives”. I don’t think so. Think about your mom. She must love you, she’s giving you a place to live. I know of people, both disabled and not, that their parents would not do that for them. They would have just told them “tuff”.

You say, “I'm a C-5, incomplete and as far as that goes, very lucky as I still have good arm and hand/finger control.” My b/f can use his arms and hands, but he doesn’t have any finger control.

You say “I spend most of my time in an old Action Ranger that's got a 2X12 strapped on for a foot rest.” Being on disability, can’t you get a new chair through Medicare? I don’t know how much your disability is, but if it is low enough you could quality for Medicaid through the state. Also. if you ever decided to go back to college through Rehab, they should also help you with chairs and other accessories. You probably already know all this, but I’m throwing it out there for what it’s worth.

Knowing several quads and paras, and your posts, I know you must be in a lot of pain. Pain can wear on you. I know. I don’t know your type of pain, but I know pain. I’ve had polio since the age of 8 months (belonged to the SCI group at Rehab); I am now into post-polio; I have scoliosis with a Harrington (steel) rod fusion the length of my back since 1970; I have fibromyalgia; I have arthritis, etc. So from all this, I have chronic fatigue and pain. I am never out of pain, as I know you probably are not either.

I hope and pray that God will take your desire to die away. You are cared for. Please do not do it. Sometimes we reach out for help, because we really don’t want to die. Are you on anything for depression? And, if you are, I’m wondering if it’s the right medication. Also some meds for depression can have adverse reactions. Please consider seeing a mental health professional. I really don’t like “shrinks” myself, but I am seeing a nurse who specializes with depression and she is a therapist (not “shrink”) here locally. There are also mental health resources through the State of Arkansas. Charges are based on income. Working with the state, I could help you locate the one nearest to you.

I hope I have said something to help a little. Please feel free to email me at sandyrun@txk.net[b].

My heart and thoughts are with you. MAY GOD TRULY BLESS YOU…….Sandy[b]