There is not a day that goes by that I wish I could have my old life back. I believe we have no choice to accept our new lives and make the best out of it. If I choose to be negative and angry all the time and not accept my condition , then it will just make life that much harder. Being negative will just pass your feelings on to others. Why make everyone else unhappy? That is why I have accepted the way I am right now. I keep hope that maybe someday I will walk again. 
None of us are compelled to accept but will just to keep peace around us. I really believe that. You also need to keep yourself busy and positive so you don't thrive on misery all the time. Can we live life to the fullest? It is not the way I want my life but again, we have no choice but to make the best out of each day and smile.

I was injured at 44 years of age and I lived a very fullfilling life. I wanted much more and had a bucket list of items to complete later in life. Well, that bucket list has changed so that I can manage new goals. This will give me direction to live my life out with my family. 

I can say after 26 years I have not accepted my disability. I am not the person you want if your looking for that key to fulfilment. I have been in a very low place the past ( a long time).
   I can say for any kind of pleasure you have to find common ground with yourself and basically like yourself. A person also needs to do something or look forward to something to feel half human. I have married and somehow remained so. I have go to schools been Independant for a decade or so and worked a challenging rewarding job(S). I have out lived my friends with SCI's and most of my family. I'm about to turn 45 and basically have very few friends. My wife wants to be closer to her family in the dallas area. She is here in our little home that is payed for. I can no longer work a conventional job, my health well my wife is my nurse. If not for her I would be in an institution. She works in healthcare but does not have any degrees to get above minimum wage. A good friend is a wonderful thing to have. Being healthy and able to atleast drive and get in and out of a car by yourself is monumental. I can do that being a T6 paraplegic. I see my downfalls a lot more than I see any abilities. I do wish every one, health, wealth, and prosperity. I know things can be worse and they will!

my mother used to say: "as long as you have your health you have everything."
Well, that wasn't the only untruths my mother told me! Personally, my health is terrible. Quadriplegia, concussion, UTIs, nerve pain – you know the drill. But I am happy.
As long as you have your happiness health is secondary.
That word acceptance has always given me the heebie-jeebies. It just seems so black and white. Most days, my quadriplegia is in the background and I am neither accepting nor rejecting it anymore than I do my age or the fact that I wear glasses. And some days my quadriplegia demands attention and interferes with my life – those days I raise my fists to the heavens and say "give me a break"

It's not about acceptance, it's about living the life we have. It's about waking up in the morning every day and saying what can I do to make this world a better place for younger people?

A Buddhist monk once said: "all of the happiness in this world comes from my wishing others to be happy. And all of the suffering in the world comes from my wishing myself to be happy."

I know that I am strugglng with depression regarding the reality of my condition. Acceptance is just simply not an adequate expression for adjustment. Previously I never believed in the term closeure, I always felt that we learn to live despite and with our loss. For me, at least at this point in the process, I may never " accept" what happened so much as I must continue to learn to live with the ongoing adjustment. My injury is less than 2 years old, too soon to be able evaluate whether it's been the fullest life possible. 

I guess to me, acceptance is like having five fingers on the right hand...five fingers that work & five fingers on my left hand, five fingers that don't work. i use both hands as much as possible, but my left hand, i have to will it to do things; it doesn't work on its own. i strive, through therapy to do as much as i possibly can. i have hopes that more & more will come back as each day passes and i seek sci studies that work on hands...this is the best therapy i can find & it's free.

i'm just about to complete a 9-week adaptability loco-motor study w/the VA hospital & UF Shands in g'ville. great stuff.

acceptance is real to me. it's my life today & i want the very best out of my life & i will take advantage of every minute that i'm given.

i have accepted that i have a sci. this is my state of life right now. there is a purpose & my task is to

Hi

I had many people telling I was 'weak' to accept sci. I stopped listening to myself and lost myself in the process.  Non-acceptence didn't work for me. Instead.......
.
I live in the moment. For the moment I accept I have sci. I'll always have hope that I will get better, and work hard to keep my body as strong as possible. Thats my dream, to recover from sci or not deteriorate. The fun of chasing the dream is as important and rewarding as reaching  the dream itself.



 



  

hi Terry,

My depression hit with a vengeance a few years after my accident, soif you are suffering from a clinical depression beyond grief, I hope you are getting that treated with psychotherapy and possibly medication. because depression causes more pain than anything that happens to the body.

and you are right when you say that acceptance is not the right word. At this point, the word seems to have no meaning. I have been bald for 10 years and I am not sure I have accepted that.

Forget about acceptance. when you are ready, live your life with the body you have, love who you love and let them love you. Do what you can to make the world more just and sleep well every night knowing that you are a good person.

If you do that for a while, the concept of acceptance will become irrelevant.

God grant me the serenity to accept the things I cannot change
the courage to change the things I can

And the wisdom to know the difference.

Thank you for sharing your wisdom

Thank you for your kind and wise words.  Please know that I am seeing a therapist and taking medication. and thanks for sharing about your own depression. The first year I think was more shock, and this second year is facing reality. 

Hi Terry,
I'm so happy you are getting care for your depression. Like I said, the depression was worse than the quadriplegic. Fortunately, more people are talking about their depression so you need not be so isolated with it. And remember, some of the depression is about grief. Deep grief for all of your losses – including some of your dreams. So let yourself feel what you feel, should as many tears as you need to, let yourself heal and then see what awaits you.
Please take care

Actually everything happen for some reason and we have to accept it. And you are a great inspiraiotion for all who want to quit beause of such problems. I must appreciate you.

Thanks for your words of Wisdom. i totally agree.

You, who are you anyway, are soooo right; everything does happen for a reason & many times we know not the WHY, but usually there's an underlying spiritual reason & it forces us to progress, IF we choose to.

It is said that God's promises are like the stars; the darker the night the brighter they shine. So we should trust him. He always have good plan for us.

I asked the acceptance question about 2 yrs ago on this site. I had been injured about 8 months. The response I got was the same, you never accept because that means you give up hope. I am not sure I believe that. But what my experience has been thus far has been is that we go through ups and downs. I always felt like I have dealt with my diving accident well. Sure I have feelings of guilt, sadness and loss but I just kept moving forward. Until this past October, I was hospitalized 3 separate times for a total of 30days. I hadn't experienced that much time in the hospital since my original injury. When I was hospitalized the third time for same issue, I told the dr's to discharge me so I could go home and die. I was tired of fighting. It was already a mental game I was fighting everyday and now I was fighting a loosing battle of a simple infection that if I was able bodied would be nothing. No thank you. The hospital put me threw the ringer. They brought in the psychiatric docs who said I wasn't far enough along in my injury to have these feelings and that I was just depressed. They tried to get me to take anti depressants. I refused stating that I wasn't depressed, I was tired of fighting. By the time all these meetings took place I had healed and was sent home to finish recovering. Once home I couldn't shake the feeling of desperation. I realized I had become angry, argumentative and sad. I was indeed depressed. I am now in therapy with an experienced sci psychologist. I feel hope again. Sorry for the long story. What I am trying to say is that I thought I had accepted my paralysis and all that went with it until I had a major set back. I realized I had never given my self the ok to be depressed and to get help. It took almost 2 1/2 yrs for this process to happen within me. I am sure this will not be my only experience with depression, hopefully next time I will recognize it sooner.

Hi wheelchair mama,

I am so glad that you are feeling better. I've had clinical depression and I have quadriplegia. Depression is worse.
Abraham Lincoln who suffer with severe depression is quoted to have said: "everything passes". Chekhov, the arguably depressed Russian said: "nothing passes".
So who is right? Gottlieb says both are right. In my experience, despair passes if we let it. The darkness of night and the terrifying thoughts that go with it always give way to day. Anger passes, but so does joy. Hatred passes if we let it and love passes if we clutch to tightly.
Quadriplegia and other disabilities do not pass. My UTIs, spasms, dysreflexia and neurosis will not pass. But the suffering that sometimes gets attached to that will pass.

You said that acceptance means giving up hope. I'm not so sure giving up hope is a bad thing. I've talked about the gifts of hopelessness before. Many people have hope for a certain outcome for their disability and they live their lives waiting for tomorrow telling themselves "that's when I will be happy." I see that in my office all the time as people have hope for a certain kind of marriage, a certain kind of future for a certain kind of psychology. Freedom comes when we give up hope for a certain kind of outcome.
To me, hope is all about believing that tomorrow can bring joy regardless of today's circumstances.

The issue is not whether we accept our disability, the issue is whether we accept our lives.

Hello Dr.Dan.
I am a mom of a wonderful 16 years old young man, who became a quad (c1/c2) back in 2002 as a result of medical mistake.  He is on vent 24/7, unable to move even his shoulders or seat independently.  Fully dependent  on someone else help.
For the last 2 years he got his HeadMouse camera and seem to be a bit happier.  He learned to deal with his life by just "living in his computer".  He refuses to leave our apartment because it's hard to get out and he is just bored outside.  Sometimes it seems to me that he accepted his condition and the life he is having, but sometimes he talks about the future like if he had no inquiry.
But how do I accept him being a quad and having no life?!  I just want to cry and only thing that is keeping me from it is unwillingness to give up.  I am still hopping that some day science will help him at least have control of his upper body, so he can use his hands and be off the vent.   I am so terrified about what will happen to him when I am gone.  people are so thoughtless and uncaring at times, even the nurse that has been with us for over 4 years still is lazy and doesn't move extra time to fix his hands or even pull his pillow lower to make him more comfortable.  And my son just so busy with his camera, that he just forgets to ask unless I just come in and do it myself.  I left job because of it, I just can't stand leaving him and then when I come back he looks horrible.  Sorry for the long rant, I guess I don't talk about it with anyone and it just piles up inside.
But, the bottom line... should I just stop hopping?

Dr. Dan, So here I am one week later and ready to throw the towel in again. My infection has resurfaced with a vengeance. This is part of acceptance I cannot deal with! I will never accept this struggle. Being a quadriplegic is enough but dealing with my body fighting against me and me being hospitalized every month is to much. I find that this is a mental game for me and when I am bed bound I go to bad places. I am so ready to move on....either accept that I am a c6/c7 quadriplegic or stop fighting and call it quits.

Hi wheelchair mama,

Depression is often the result of sustained helplessness, and that sounds like how you experience your life. So, if you are willing, let's change things around. Your body is not attacking you. Your body is being attacked by an outside force. And your body is working as hard as it can to keep you alive, but it needs help. Your body needs antibiotics or whatever else Western medicine says it needs.
But your body also needs the same thing you do – understanding, compassion and safety. I've talked on these pages before about how I used to feel scared and resentful about my neuropathic pain. And then I realized that my arms were suffering. Now when I feel pain, I visualize my arms that are being overstimulated and suffering. I feel great sadness and kindness towards my own arms. It doesn't change the severity of the pain, but it does change the way I experience it. Instead of feeling like I am a victim of pain, I feel as though I am an agent of compassion for my arms.

There is lots of research out there that demonstrates the value of Self-Compassion for boosting the immune system and the healing process. And there is lots of research that demonstrates the opposite for depression.

I highly recommend you read "Self-Compassion" by Kristin Neff PhD as it is a wonderful workbook. If you can be an agent of kindness towards yourself and your body, it will improve the quality of your life – regardless of what is happening to you physically.

And believe me, I am not just some shrink proselytizing, it works for me.

Hi Maxysmom,

I am so sorry to hear what pain you live with. Your son may or may not be suffering, I don't know. But I do know that you are. And to a certain extent you probably always will.
You have to plan for the future and you have to hope that one day something will happen to enhance the quality of your son's life. But we all get in trouble when we tell ourselves that we will only be happy when something happens in the future that changes our lives. That kind of thinking can't keep us depressed.
Fight for a better future for your precious son, but please don't live in the future. I guess in a way acceptance is really about living the life you have. You have a wonderful young man, how fortunate you both are to have one another. And from the bottom of my heart, I hope that you are able to enjoy this great kid and his wonderful spirit.
And as far as the nurses are concerned, I am sure we could all collaborate on a book about our experiences. The only problem with writing the book is that nobody would believe that it's nonfiction!

Please stay in touch with us. You may not find solutions, but you will find kindred spirits

All I can say is that I wouldn't have the quality of life I have now, had I not reached some degree of acceptance of my condition. It has been 22 years since my "golfing accident." (I was in an MVA while on the way to the golf course and it made me an 'incomplete paraplegic."

Reader's Digest did a profile of me several years ago, because they were interestered in the concept of being 'disabled' and a humorist. (Many people have difficulty with that combination, but I tell them that the SCI impacted my sense of feeling, not my sense of humor.) I was quoted in that article saying that if I could trade my former life before the accident with my current situation, I would stick with the current even with all of its problems, because I was having more fun now than I ever had in the past and was a ble to write what I wanted, not what other people were paying me to write for them.

Have I reached total acceptance? No. I think if I were to say I totally accepted my situation that would mean I no longer held hope for future improvement possibilities.

Gordon Kirkland

Dr. Dan, I am  wheelchair mama's mom!  When  she has these setbacks my heart breaks for her.  How can I tell her how much we love her and to just hang on and things hopefully will improve each day.  Her beautiful children need her and love her.  Thanks to you for your  helpful words of encouragement.

Just like Joyce said, when Wheelchair Mama's not right none of us are.  Having cared for my mother in law through her time with Alzhiemer's, a bout with pneumonia, as well as trouble with blood clots that led to the loss of her left leg, small strokes, a fall that caused a broken right knee bone, then a major stroke that paralyzed her right side, I understand WCM's feeling of being tired of fighting.  With each subsequent medical crisis her body, then her mind, became less able to bounce back and recover.  But she was 91.  Your kids still need you, they will for years to come.  I know, I'm 57 and I still need mine. I try to let her know when she gets tired of fighting like you feel right now.  Along with Dr. Dan's suggestion to give your body comfort as it heals, try to imagine that the group of us here are surrounding your hospital bed, tending to your needs, stroking your face and head, propping your pillows just so, bringing in flowers of spring, quietly talking words of encoragement, spritzing the room with smells of lavendar.  We'll walk with you through each hospital visit, let us know when you go.  We want you to be with your kids forever, you deserve to have that time, because you aren't ready to totally give in yet.
Deborah

Maxysmom - Since your son loves time at his computer I wonder if he's aware of Eye Writer.  It's a device designed by some guys whose friend was SCI injured and they wanted to give him back the ability to continue "tagging" buildings like he'd done before his accident.  They divised this program, and simple set up, that allows him to Eye Write on buildings.  Here are links to watch him do his craft, and a link to information about the program.  I think Maxy would really enjoy watching it and probably be able to use it.  There are several art programs designed for accessible use, on an IPad or Mac, some reviewed on the CRPF site.  

http://www.youtube.com/watch?v=84H-xLrLvvk&feature=related
http://www.eyewriter.org/developer/
http://www.youtube.com/watch?v=84H-xLrLvvk

As for his acceptance, living IN his computer is his way of coping and acceptance.  In his computer he can move in three dimensions, can freely communicate, can go anywhere in the blink of an eye.  Any kid would want the opportunity to do that, and their parent's permssion to use a computer daily is a huge bonus for a 16 year old.  He says he's cool with it, let him learn, discover, travel, communicate, and maybe he'll be the one who developes the app that lets people like him get off the vent, or a way of providing the hardware that lets him use his arms at a reasonable price, or he makes the connection between all the research information that solves the puzzle of finding a solution to paralysis.  And your feeling like he has no life is your interpretation of what his life should look like at this moment.  Does he have internet friends?  Do they talk on a regular basis?  Are they good people?  Is he taking classes for graduation?  Is he going to take college courses online?  Does he have a goal for the future?  Has he thought about enrolling in research studies that he could participate in online?  Does he participate in online blogs or support groups like those on the CRPF site?  And most important, is there a support group in the area you live that you could go to?  You could benefit from talking to other parents of kids with chronic conditions like Cerebal Palsy, Cystic Fibrosis, parylsis, MS because they are all in situations of caregiving and worried about the same issues you are.  There are ways of planning for your future so you don't have to be quite so worried about your son all the time.  There ARE better caregivers out there, you just haven't come across one yet.  My Mom has had two amazing caregivers among the several we've had, and they stuck with her for 5 years each.  We were quite blessed by God for the time they were with her.  I'll put Maxy and you on my list and see if we can't pray a few into your lives - in the meantime tell the chick you have now to imagine how she'd feel if he were her son and she came home to see him sitting in such an uncomfortable position.  You just want her to treat him like he was her child, because someday she may be in the position where someone is caring for her's, and it's paid forward.

We'll pray for better care, for you to find better support and some peace, and for Maxy to find something to do outside of a computer screen (now THAT WILL take an Act of God!).
Deborah

hi Joyce,
very often living with spinal cord injury means experiencing acceptance, despair, hope and hopelessness – and back again. When I feel despair, I want to be with people who can tolerate my pain and not try to talk me out of it. I want to be with people who love me and have faith in my own resilience. And I want to be with people who will be able to turn to me when they are in pain.
Joyce, when your daughter suffers so do you. You have to be what I've described above for her. But you also need people in your own network that can nurture you when you feel this great pain. Please don't ever turn your back on yourself.