cluttering the net since 2001

i got this message today...

Sunday, Sept. 29, 2002
I got this message today…

I'm sure it's hard to celebrate life with all the hardship. At the end of the day, you can choose to make the best of it and see things as positive, or live every day thinking about how it will end. I prefer the former. There are positive things going on. Don't think about taking a picture of your husband and Bucky walking together because it may be the last, take the picture because it's father and child being together. If your husband stops walking, he'll still be a father regardless of the disability.

My best friend Ray was in a car accident several years ago and now his right arm is paralyzed. He is in constant pain due to problems with the nerve endings. There is no cure for this. Ray learned to cope with it. I know when people first meet Ray they may feel kind of weird that he shakes hands with the opposite hand. However, after you get to know Ray, you don't even recognize that anything is wrong with his arm. Note that Ray WAS a nurse, Ray WAS a keyboard player in a touring rock band, and Ray WAS left-handed. He functions unbelieveably. Most people can't do with two hands what I see him do with one.

Everyone can adapt. It takes a while to get over the felling sorry for yourself (as I'm sure your husband is) and feeling sorry that you are in the situation (like you are). The sooner you grow to accept that this is happening, the sooner you will all find happiness again just by "being". ;)

This was my reply….

There is a part of me that wants to scream at you “you don’t know!” “you don’t know!” “you aren’t seeing it!” But the other part of me knows that what you say is true. But like all grieving and that is what is going on in my house. A grieving for what once was reality and now is memory. There is a grieving and I have every right to cry and whine and rage and throw things. I have every right to react however my body and mind chooses to.

This moment like all other horrible ones in my life will pass. But it will pass on its own due time. It will pass when I am done raging and screaming and being angry. When the tears stop pouring forth.

There is a part of me that wants to recapture moments like this…make you sit unaffected and listen…

Bucky: Daddy can we go to the mall today and play with all the toys in the toy store?

Daddy: aww buck you know I can’t walk that far.

Bucky: c’mon Dad I’ll get you a wheelchair and I’ll push you, you only have to stand up in the toy store then, ok?

Daddy: (reaches for Bucky *winces in pain*) that’s a very nice thing to say but Dad’s lots heavier than you and you couldn’t push me around


Bucky: hey we could get one of those battery ones that those crippled people use

Daddy: *pained expression* yes I guess …how about we play a game here?

I want to make every person that thinks they know what I am going through…walk into my living room and watch that. Watch that scene and tell me not to rage, not to be angry at God at the world around me and not to race out of the room without running and being obvious so that I can gulp air, head against the cold bathroom tile wall trying to understand how in 2 months my life became this. This which I cannot change or control.

I watch him and there are moments when I think “good for you… fuck you fuck you for everything you did to me, this is karma getting you” And then I realize the hateful thoughts I have and I am back leaning against that cold tile wall asking god to forgive me for my evil thoughts. Telling God I’ll make any trade he wants just to make him healthy again. I’ll never think another bad thing for all my life if he just lives to raise his son.

Come watch my 9 year old instinctively lean against his Daddy as they walk…wanting to put his feet on Daddy’s feet like stilts like so many months beforehand and when Daddy gently nudges him off and the rejection flies across my sons face…tell me not to be fucking angry. Tell me then.

A little boy that can no longer go roller blading along the coast with his best friend, Daddy. A little boy that can no longer run and jump on Daddy’s lap. A little boy that just wants Daddy to come back…

To compare your friend Ray and his accident and the non-use of one limb is not a fair comparison. My husband is losing use of his arms and his legs and may one day be a quadriplegic unable to shake anyone’s hand ever again, he might be unable to move any limb. At this point I’m sure he would trade Ray in a heartbeat. He might go to sleep one night and his lungs might not get the proper electrical impulses from his brain to sustain oxygen and breath for him, rendering him unable to breath. Does Ray fear for his life every time he tries to find solace in sleep? While I don’t doubt that Ray has battled his own fights, it is not an accurate comparison in the end.

I understand however the message behind what you were saying to me. I do. I just want you to know that right now anyone telling me they know how I feel…is just a mere insult in my mind. Come watch what is happening and you, a stranger, will cry. You will rage, you will walk away on your two healthy legs thanking god for what you have so long assumed was a given.

My son just called me from Walmart where he is with Daddy to tell me the following

“I’m scared Mom, I have to push the cart all over the store by myself and you know how I always run into people, what if someone gets mad at me?”

To which I replied, “tell them… “my daddy’s sick, I’m helping him” and they’ll understand sweetie”

Maybe I just lied to my own son, because I don’t think the average person with a head full of worries about what they’re going to have for lunch and what meeting they need to schedule…and which shoes to buy and whether or not they brought their coupons today does or will understand.

Yes, I’m angry. I have every right to be angry. Yes it will pass, but let me throw something through a glass window and let me beat my fists against the wall and let me do whatever it is I need to do to get through this moment. This moment is mine, and I will do whatever I feel like doing. Damn it, you don’t know! And for the record..its ok with me that you don’t. I really don’t want anyone to ever truly understand this.

I intend to take the pictures so that someday when it is a far distant memory, my son might have a good memory of what once was to remember his Daddy by. The days that were good. The days that Daddy hugged him.

You don’t know. I hope you never do. I’m not angry at you for leaving me comments, I get part of what you said. I’m just angry at the world right now… I have every right to my feelings. They are the only things I will not lose.
12:46 p.m. ::
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