The truth about me...

When you are young, your life is filled with dreams... Hopes for the future... Grand plans and wild schemes. You have your whole future ahead of you... When you are in your twenties, you are bold enough to grab your life by the horns and try to squeeze the most out of every second of every day. You somehow manage to find a way to get an extra hour that time did not take into account. At least that is what it seems like for how much you put into each moment of every day... And then life catches up with you and you start growing up. Taking on more responsibilities...

Most people that I meet take their lives for granted. They move from one day to the next, sometimes marking the time by a special event or momentous occasion...

But for me... Every event, from getting up in the morning, to running an errand is momentous. Every action that I take, every conversation with every person, is a special event. At least it has been for the past seven years. (There are days that I cannot believe it has been as long as seven years, it seems like I was "normal" just yesterday... And there are times when I cannot believe that it has been seven years, it feels like an eternity has passed and that the end of my days stretches out to eternity...)

You can never see what the future holds... And I cling to that thought. It both brings me peace and terrifies me. But in the end, I embrace that thought. You see... For the past seven years, I have been living with a disability. One that others cannot see... One that rules my life, and I have learned to function within the confines of that dictatorship.

There are days that I cannot get out of bed... I actually spent most of the first few years bedridden or sofa-bound because I could not move for the pain that I felt. And there have too many times when I have become short of temper or seemed a non-committal flake because I could not push onward. And there are times that I am willing to do whatever it takes for just one moment, even if it means damaging my kidneys or liver or stomach lining to do so... (But we all have choices... And not all of them are "good"... Only we can define if they are "right"...)

My Mother in New York sent me an e-mail this morning. Enclosed was a message from one of her dearest friends, who also has a chronic illness, a life- altering disability... She had written to those that she loved and included a link to a very short story. A very clarifying description of what reality is like for those of us who live the lives that we do... AND IT MADE ME CRY...

Me, who rarely sheds a tear over this thing that I cannot change, shed enough that I now look all puffy and red. The story is beautiful in it's simplicity... It is poignant in it's truth... It is how I have always wanted to be able to explain things to those that I love... Those that are curious... And those that wonder WHY it is that I do not commit to something, or WHY I often back out at the last minute... Or WHY I plan everything so far in advance, but then leave it all open ended...

But for the record... While I hate what my life has become, I also am blessed by it... The appreciation that I have for every little thing is larger than life itself... I really do stop and smell the roses. I deeply inhale the aroma as it wafts past my nose. Everything that I do, I put my everything into... Because that is all I have... That moment. That moment must be memorable enough to savor during the "down times"...

For the past several years, my life is once again filled with dreams... Hopes for the future... Grand plans and wild schemes. And I know that I have my whole future ahead of me... I am bold enough to grab my life by the horns and try to squeeze the most out of every second of every day. I somehow manage to find a way to get an extra hour that time did not take into account. At least that is what it seems like for how much I put into each moment of every day... And even when life catches up with me and I have to slow things down again, disappear for a time, I know that I really have come a long way towards growing up. And I am at a place in life where maybe, just maybe, I can start taking on more responsibilities... And so the cycle never really ends..

So... Please... Cut and paste on the link... Click on it... But take the moment to read the story... It is short... and it can say everything that I have always wanted to, but never quite knew how...

www.butyoudontlooksick.com/the_spoon_theory
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

And then you will understand the photo at the top of this blog...
As well as what is the largest part of my life...
That part I have worked so hard to keep hidden in my desires to appear just as I was before...
Just as everyone else is...
How do I love you.. I give you one of my spoons...
How do I trust you... I show you my weakness...