Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Is it possible?

My AS robbed me of a lot when I was young. At that age my response against this disease was all rage fury and fire.

I awoke everyday and fell asleep everynight with one wish.

Is it possible that the new day will bring a miraculous end to this nightmare?
Like DOrothy escaping OZ I wanted to click my heels three times ( I'd have even donned those ruby slippers if absolutely necessary) and be back from my AS nightmare to a world of normal health.

In retrospect those "early" years of my AS lasted long and the rage still smoulders a wee bit within but I awoke wonder,ing "Is it possible this will all be gone tommorow " for the longest of time.

Accustomed to my AS in my thirties and single I figured I'd attach myself to nothing and have nothing to lose. I'd enjoy what health I had at the time to the "fullest" usually by overindulging and hoping that with exercise and thoughtful handling of my ailment I'd find a way to find the equilibrium to maintain the status quo and not let AS rob me of more.

I awoke every day and fell asleep everynight with one wish.

Is it possible the powers that be leave me alone and let me lose no more? The nightmare is reality but I can cope with it if it doesn't keep robbing me more. After all I only have so much to give to the thief.

Well I didn't stay detached and I tried to stay irresponsible but a lovely lady changed all that and corrupted me into being a semi-contributing part of society. Three little girls my body just allows me to cradle in my arms up to bed every night are the greatest of gifts. A tattered golf swing that doesn't see the light of day often enough fuels the occasional fire within.

Now I rest at night and awake hoping for balance within. Is it possible I can coexist in this body with this foe? Is it possible I can learn from it and teach because of it? IS it possible that despite the heartache I know it is sure to bring me in the future I have what it takes to comeout with a smile?

Of course its possible. The boy who was me survived, the young man who was me grew, the adult I feign to be can overcome.

Not so silly this martini Friday but inspired by some very courageous folks here.

 
stevec-they also serve who stand and wait

Edited by stevec on 05/09/03 07:04 PM (server time).

Steve,
YOU are inspiring!! I wish you had never had to even know what AS was, let alone suffer from it from such a young age. But I really admire the man you have become inspite of this disease.
All 4 of your lovely ladies are blessed to have you. I know KickAS is a much better place because you are a part of it.

Thankyou for always sharing a part of yourself with all of us.

Hugs,
Pam

My boys, Noah & Isaiah

This is the post I needed to read today!!!! Thank you. I myself have wished that same wish for almost 30 years and I thought my wish had been granted, but whoommfff!!!! it was gone as fast as it came. With the intensity of the pain it is really hard not to fall into the why me's? and poor me's? I feel as if I have suffered enough and learned everything I am suppose to and even felt that my AS has made me a better person and a better parent. So why this pain ? I guess these are questions we may never know the answer to,but your insight and candor and honesty really helps me to keep fighting looking for the next thing that will give me physical freedom. I feel I have obtained an emotional and spiritual freedom despite the demands my body has put on me. I can see the picture of you so clearly carrying those little ones to bed. Cherish those times. My 13 year old little girl was practically carrying me to bed today. I love that girl so much. She was a true gift from God.

Thanks Steve for the inspiration, pick-me-up and hope on a dark day!!!

Hugs

Simone

I hear you Steve.
You truly are an inspiration to all us AS sufferers. I relate to all that you say my friend.
Always love your Friday night martini post.....


Let me finish by quoting you how I have felt many times myself.

" I awoke everyday and fell asleep everynight with one wish."

Ray

AMEN Steve!

I decided (but just a few stubborn body parts didn't!) that I too would not be brought down by this disease.

Yes, it stops me doing all the things I want.... I can't run bases with my 9 year old... but I can sure pitch a ball....... I can't referee soccer games.... but I'm a damn good coach.....

and when it comes down to the most important things of all.......I might be 'gimpy' but I am raising three wonderful boys.

These days, instead of saying "why me" I find myself just saying.... "so what?"

I dance in the rain.... pick up heavy objects when I shouldn't...... and blow a raspberry in the general direction of the AS. Yeah... I still get the flares.... I also have really odd things happen to my body on a regular basis..... I just try to deal with the flares.... and laugh at the oddities...... what else can you do?

And just look at you.......... three wonderful little girls, and a wonderful wife........(and well deserving too!)

Keep the martini's flowing and toast to tomorrow..... at least WE can appreciate life fully.... and our road markers are not shallow like a new house/promotion/boat/jewellry... but the stuff that COUNTS!


Make it count.... every day!

(((( hugs )))) Maxine!

(I'd go get a martini myself... but this message was so long... I fear I might be stuck in this chair!




May the roof above us never fall in, and the many friends gathered below it never fall out. - Irish Blessing

Very inspiring post Steve!!! Thanks for taking the time to write such an inspiring post. I believe a lot of us spare similiar feelings.... you are just better able to write them in a post than the rest of us

Take care,

Tim

A pessimist sees the difficulty in every opportunity, an optimist sees the opportunity in every difficulty. - Winston Churchhill

Is that a stuffed olive or a straight olive you have in that martini
Thanks Rat

Ok, I'm gonna say it....

you ROCK...

Peace
Linc

Linc O'Brien

Hi Steve... thanks for sharing these thoughts with us all!

It is so easy to relate to your words, I have wished for those ruby slippers for so many years.

Your words make me wonder how AS has affected some of my major life choices. Have I chosen detachment for the reasons I've told myself over the years? Have I been truthful with myself?

I have never had difficulty accepting this path (except for the earliest years) though I've had tremendous difficulty accepting offers of assistance from others. Independance became a means, a method of fighting the fight, emotionally.

I'm no longer trying to escape through independance. I'm no longer going to assume that others only see me from the outside, or that our contributions exist solely in the physical. Your words speak directly to the opposite of these things. And now I am choosing attachment. We are all so much more than our shells. I, too, am inspired by some very courageous folks here,... and you are one!

Figure I will still occasionally peek in my closet, just in case those ruby slippers show up when we least expect them.
Hope works!!!

mig

Exactly! Exactly! Exactly!! Nobody, including myself could have said it better.
You are an inspiration to us all and those beautiful girls of yours are going to become sweet, but strong little woman because of the father they have.
Go Steve Go!
Hugs,
Lisa