What I have lost is my sense of entitlement. My confidence that I will get everything I want if I just work hard enough. My distain for people with disabilities....I mean I used to believe they could do a lot more. And my belief that I can do everything on my own.

What I have gained is a strength and purpose that is amazing. I have had to learn ways to do things even when the pain is too much. I have learned to appreciate the things I used to take for granted.

And every day I learn just how strong I am .... because I have to be.

I seem to have lost my sense of humor..........and that hurts almost more than the pain:(

You have asked a very difficult question.

I graduated from college, majoring in music, piano. Have been a church organist, pianist, choir director for 30+ years. It came to a screaming halt, loss the use of muscles after 6 surgeries. Lost use of fingers due to neuropathy, cervical stenosis, Chiari Malformation, ulna nerve impaction, have not played keyboards in 2 years, cannot. Keyboards require 10 fingers, not 6. A death occured, all that I was is now gone, my former identity is no longer.

Google "the five stages of grief". Even though the piece was written about dealing with death, it is also applicable in having a debilitating disease. It has helped me understand what I am going through. The last stage, acceptance, is not mine yet, still dealing with it and jumping back and forth in other stages.

Why did God take away the gift that was given to me. So far, there is what I believe is a shallow answer, because another gift is on the way. For me, that is a difficult answer to accept right now, I want my old life back, God.

Not a pity party. You, I and others are struggeling with the same issue. It is that you are dealing with the issues most likely by yourself, trying to understand why all is happening.

No more can I play Rachmaninoff, Bach, Chopin, Brahms, a long list. Now retired on disability, cannot work. Fixing supper tonight to a lot of reserve energy.

Recently, I applied to join a Family Health Council at the hospital which I attend. It is a patient advocacy council which has quite a bit of power. The CEO of the hospital attends all meetings, he wants the imput. This may be my new place in life. My past may have been replaced, but I still want a taste of the old.
Peace,

caleb, I hear you. One of my heroes has always been Frieda Khahlo. An aspiring artist in Mexico when she was severely injured in a bus accident. I believe her art saved her. If you don't know of her google her. There was a movie with Selma Hyack as Frieda a number of years back that captured her pretty well. When it became clear my pain wasn't going away my daughter sent me a notebook with one of Fried's portraits. I hope her spirit can give you some comfort.

I have lost so, much too much to mention. I think all of you know what we have lost. I also have gained, but still miss the days I woke up and bounced out of bed and took a long run, or got together with friends for a long day shopping. Spur of the moment thing are the hardest to let go or explain to others.
One thing I find in the CP group is a great sense of humor, no matter how down. Some of the posts make me smile after reading a sad story earlier by the same author. It is nice most of us still have that, even though it is hard at times to smile!
:)

everything we work for as children and hopes and dream and have gone to this stupid cp.
everyday is just a battle to stay alive in this world and to be heard.

I lost the person I was and I found a much more compassionate, caring person. I lost my strength of body but I gained strength of mind and spirit. I lost friends and I found new ones. I lost my ability to work and I gained the freedom of time.

I totally get it. It's hard to lose oneself. I'm a musician and I feel for you not to be able to do your art. But with CP and disabilities, we have to keep reinventing ourselves over and over.

I hope you find a way to express beauty in a different way. Can you sing?

Ama

The things I have lost;
I have lost a high school experience with going to classes and talking to friends about silly shallow things.
I have lost going outside and hiking or canoeing and wondering at the beauty and order of the natural world.
I have lost the ability to be reliable to my friends in things like going out or anything that requires energy.
I have lost my exuberant love for just living and being alive I now live for others.
I have lost security of being young and being able to do or accomplish anything I set my mind to.
But I have gained a respect for people who are disabled in any way and know that people with disabilities can't just get over them.
I have gained a will stronger than steel that can not be bent or broken when I set my mind to accomplishing a task (it may take me longer than I wished to or encompass me not being able to physically do things but I am capable of doing so much more because of this will to never surrender)
I have gained true friends that will stick by me even when I am trying to chase everyone away.
I have gained an appreciation for the little things that I still can do and once did that everyone else just takes for granted.

Thanks for the input everyone, although I wish that we all felt better but since that isn't the case I do find comfort in the fact that I am not alone. I believe that is the main reason I joined these forums, don't get me wrong I have people who love me and will always be there for me, but none of them get it. There's no way of understanding how bad each of us hurt, or how utterly hopeless it feels to not be able to remember the last time I had a pain free day.

I also sense a common trend here as well, up until now I couldn't put a finger on what I felt but several of you have hit the nail on the head. It is like I have died, and in all sense of it I have, the person I was no longer exists, in his place is this semblance of who I was. In many ways I am a better person, I am less quick to judge others, but there is also a part of me that I fear has become dark and twisted. It's not what I want but after a certain point how do you keep the little monster growing in the back of your mind at bay? As hard as I try, I find myself lashing out at those around me so I choose to alienate myself from people when I get like this.

In every person there exists both good and bad, being a person that suffers constantly I believe its much more of a challenge to keep the fragile balance between the two. I no longer hold the opinion that I used to about disabled people, I used to think that they just wanted attention and pity. i now know this isn't true, quite the opposite actually. Although I do confess I want to be noticed it's not because of whats wrong with me, more-so I want to be noticed for who I am inside, judge me not by the wheelchair I have to use but judge me by the inherent sense of enlightenment and morality I have obtained since become a member of a community of people that I once judged so unfairly before my "death".

This is only my second day here but I already am so happy that I joined, I am still afraid and lonely, but for the first time in what seems like forever I no longer feel alone. thank you all for listening and if any of you ever need that light in the darkness, or just someone understanding to vent to, remember I am here, and i will be for any of you. maybe by being there for others I can in some way save part of myself...

I too have a hard time with that dark and twisted me. I tend to hide from the world when she comes out and I can do it easily because I live alone. But I have heard that the dark side is where the potential for goodness is. It needs transformation and the best weapon is love. So I am practicing loving her and my heart is growing bigger and bigger.
Ama

Welcome Cale!

I understand ...

I HIGHLY respect the way you are around your children- I know how hard that is... IMHO .... why worry the child if the situation (most likely) won't / can't change? Obviously, they have no "control" over anything like "adult stuff" all they *can do* is worry...

As long as the cues from YOU are good... DAD will be fine.

That is strength ... no matter what else ... YOU have that for sure!

You are so right about feeling like a part of you has died I have had that aw well. In the place of the living me is a dark and twisted soul that tries to chase people away if I let her. It is so scary having this other side of me but thank you Ama for what you have said. I have never looked at it that way before.

Oh boy, do I get you. It is the art that I miss too. I am very creative. Now I can't bear the thought of trying to lay out the equipment

I have to say my heart breaks for you. Its hard to loose the things we love so much in life. Its been 6 or so years & I'm still working on acceptance. Yes we do grieve because we have lost parts of who we are & are future has changed.

Its hard to not let this pain change who we are on the inside. For awhile I think I was letting dictate who I was. My moods & attitude were changing. Lots of anger I think. Its an ongoing battle some days to not hand over my entire being to pain. For my loved ones & myself I refuse to give up.


I wont go over what I lost as I believe we have all lost things we love. I will say my family & friends still need me. The person I am inside. The one they can confide in & trust. The one who loves them for who they are.

I struggle with expectations of myself. Not sure if that will ever change but I want those I love to know deep inside I am still me.
You are still you, dad. Your love does not change. Don't let this define you 100%. Hard I know that & each day I work on this.
I miss the old me, my old life, some times so much it hurts to think about it. I no longer think about what would have been.

You obviously love your children, you can create wonderful memories & be the best of fathers. Remember that.
God bless, Sammy

Read those stages of grief. It is not a once thru and done process. As you grieve, the stages have to be gone thru over and over and in random order based on the stress of the day.