Reeve Foundation Paralysis Community

I've been paralyzed since 1998.  My injury level is c4-c5 complete with some arm movement but unable to grasp and unable to move fingers.  I can't feel anything from my upper chest and on down.  I write this because I feel as if I can't and don't want to keep on living like this.  I was in a car crash; I was a passenger and only 23 years old at the time.  My boyfriend was the driver.  When I awoke out of an induced coma 9 days after I was told Ray, my boyfriend, had passed.  Ray had some sort of head trauma.  God I miss him.  I don't recall how the crash occurred or if we were wearing our seatbelts.  I wasn't able to kiss, hug and caress Ray goodbye.  I think about him all the time.  Would we still be together?  Would we be married with a family? 

Life has been cruel.  This paralysis makes you depressed and most of all it humbles and humiliates you.  The inability to do things for yourself.  Your independence snatched from you whether you want to give it up or not.

It has been so long since I've felt the touch of a man.  The love of someone who truly does care and respects you.  I know my family loves me but the love I'm writing about doesn't come from my mother or my niece, sister or brother that love would be a crime.  The love I write about is the love that looks at you and you feel invincible as if you can leap up in the air and touch the moon.  The love where your heart is beating 5 miles a second without causing a heart attack.  Lately I have been wearing his cologne because is getting harder to see his face.  I feel like I'm never going to see him again.  It hurts to know.  It hurts to be here alive alone especially at night.  No cuddles, no goodnight kisses, no warm body next to mine.

It's been 11 years this August and every single second feels like an eternity.  I pray to God every day and night that He grants me my prayer, my prayer to die.  For God to take my life because I don't have the strength to do it myself.  I believe in God, in heaven and hell and believe if I were to take my life I would go to hell to burn in eternity.  I'm writing this and I'm holding back tears.  Tonight I'll let them out.  I don't want to cry now 'cause mom's around. 

Qin98,

 

I am so very sorry for your situation, and I can see that you are suffering terribly both the grief of losing your boyfriend plus the grief and loss from your paralysis.  I can’t say that I know how you feel because I can’t possibly put myself in your shoes, but I can say that I hear you.  Even though our situations are extremely different, I think I have felt some of the same things that you describe.

 

My first husband died of colon cancer when I was 27.  We were married just short of 2 years.  The loss of a spouse is overwhelming grief.  I remember feeling so alone, sad, and even mad.  It felt like he took the easy way out, and I was left to face everything alone.  That doesn’t make much sense I know, but that is how I felt.  I imagine you had some of those same feeling about your boyfriend while at the same time trying to deal with your own injuries. 

 

I also understand the feelings you describe about missing the love of a man.  My current husband suffered a C3/C4 SCI and TBI in an auto accident.  His injuries are devastating and consequently the intimacy and romance of our marriage are gone.  Now I am more the role of nurse rather than wife.  I miss so many of the things you describe too. 

 

I don’t have words of wisdom for you.  I guess from discussions here I have learned to try to find even a moment of joy or happiness.  Sometimes a moment can sustain us until the next moment comes.  It sounds like you are still suffering from overwhelming grief, a tremendous sense of loss, and perhaps depression which could also be contributing to your terrible sadness.  I hope if nothing else that we can help you here by listening, really listening.  Sometimes people are so busy trying to find a solution for you that they forget to really listen.

 

I think that grief and despair can blind us from love, so my hope for you is that your grief and despair eases and you find true love again.

 

I’m sure that Dr. Dan will have some helpful words.  Hang in there.

---

Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

I cannot begin to imagine the depth and breadth of your suffering for such a long period of time.  What I do know is that you have found a kind and compassionate community with which you can share your feelings and be heard. 

As I read your post, I could not help but hear your memories of a wonderful, exciting, tender, and deep love that you were fortunate to have experienced with Ray.  Your descriptions of how you felt when you were near him are so vivid that they created a lively image in my mind equaling the love that is written about in the best of the romance novels.  

Is it too painful to meditate on the beauty of your relationship in your imagination  as though you were engulfed in those warm and positive feelings and sensations for a few minutes each day?  I've wondered myself if it's possible to eventually arrive at the place with such a practice that one's heart softens enough to experience this type of love for oneself regardless of the circumstances of our earthly bodies?  I don't know. 

My hope for you is that there is someone with whom you can share your feelings and hopefully find a place of peace.  I believe that this is too big a job to handle alone and that many of us who are doing the best we can to figure out how to live with paralysis, myself included, realize that we don't have to do it alone, in fact I have discovered that I cannot do this without some help.  My thoughts and prayers are with you and I sincerely hope that peace will find it's way into your heart. Please keep letting us know how you are progressing.  We can all learn from each other.  

When I read your post I could feel the loss you were expressing.  Sometimes I wish I could find the right words or wave a wand and make it all go away but I can't.  You could say that god has kept you with us for a reason.  You may not know what that reason is yet but one day it will reveal itself.  I hope you will continue to live for that day.  I know it is not easy.  Depression, anger, frustration are all horrible monsters that rear their ugly heads and take over so easily.  I hope that, as Trish stated earlier, that you can try to find moments of peace that will sustain you until the time that it is found why god wanted you to stay with us and not go back to him. 

Thank you so very much for your sweet kind words. 

I read your posting and I was touched by your words and emotional description of how you miss your boyfriend.
I was injured back in 1991 at the age of 18 and I'm a C6 SCI guy.
I can relate to wanting to connect with someone on a deeper level. You are not alone in your longing to find that unique connection between 2 people. I myself hope to find that feeling someday as well. To feel that feeling of heaven when your with that person.
I extend a heart felt hug to you. I could not imagine what your feeling regarding your Boyfriend and the pain you must feel losing him, but I want you to know that it is possible to find that feeling once again in someone else.
One trait I try to maintain myself is inner happiness. Being out going and positive has lead me to rediscovering myself and in the process meeting some dear people in my life, some of which have lead to romance.
I think that if you allow yourself to get in the fast lane of life you might be surprise to cross your path with that special person who cuddle with you, kiss you goodnight and keep you warm.

keep in touch,
Hot Wheelz

Like all of the others, your suffering causes me to feel great sadness and compassion. Your losses remind me of my losses. Your longing reminds me of mine. Like the others, I am struck by your eloquence and how you are words can really penetrate one's defenses. And I was also struck by one of the last sentences in your first blog entry -- that you had to fight back the tears because your mother was coming.

I hope you are comfortable opening up with your mother about your anguish. And not that she can necessarily do anything to help, but just the fact that she can listen to you could help you feel less alone. And speaking of less alone, you have found your way to a great forum with great people. And look at what you have done for us. Your honesty and vulnerability has caused every one of us to open our hearts to you. You have moved this dialogue to a very tender and caring Place.

My career, my life, has been based on my ability to describe my vulnerability in ways that help people open their hearts. And in turn, they are able to feel less alone.

As a clinician, the I should say that grief that has lasted this long could be depression and perhaps should be treated. And although I think that maybe true, I do not want to reduce your life to a diagnosis and treatment.

You have lost so much, and I guess you feel pretty powerless. But as long as you have a life, even if it's not the life you want, you still have the power to think about what you want to do with it.

Like the others, I look forward to hearing from you. Please take care. Please

Dan

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Dan Gottlieb Ph.D.
www.DrDanGottlieb.com
"wisdom of Sam: observations on life from an uncommon child"
trailer:http://www.youtube.com/watch?v=_V4QrekU1Wk