Wednesday, May 15, 2013

Posters, Making Every Moment Count, and Caged Lions

I stare at this word-photo everyday. It hangs on the wall next to the right arm of the couch. To anyone who might come in our home, it's in a very tucked away corner. For me it's direct line of vision, 12 o'clock.

Find a passion and pursue it.
Fall in love. Dream big.
Drink wine, eat great food and spend quality time with good friends. Laugh everyday.
Believe in magic. Tell stories.
Reminisce about the good old days but look with optimism to the future. Travel often.
Learn more. Be creative.
Spend time with people you admire.
Seize opportunities when they reveal themselves.
Love with all your heart.
Never give up. Do what you love.
Be true to who you are.
Make time to enjoy the simple things in life.
Spend time with family. Forgive even when it's hard.
Smile often. Be grateful.
Be the change you wish to see in the world.
Follow your dreams.
Try new things. Work hard.
Don't count the minutes, count the laughs.
Embrace change. Trust in yourself.
Be thankful. Be nice to everyone.
Be happy. Live for today.
And above all...
Make every moment count."

When I bought it, I thought, Sure some of these aphorisms seem trite, but I love it. It really is the way to live. I only thought about taking a sharpie through "drink wine," but everything else was dead on.

As you can see in the picture, some of the font is bigger than others, or bolder. But still I know this sign so well, that's not necessarily where my mind goes. If I'm doing well I see so much beauty, positivity, and great advice. I think, Hey, I can do that. I can be nice to everyone and be thankful and be creative. I can smile, laugh, reminisce, love, dream, trust, etc...

But this morning.... This morning I was not doing well. All I could think was I spend EVERY SINGLE DAY on this couch staring at this effing poster that says "AND ABOVE ALL MAKE EVERY MOMENT COUNT." Are you SERIOUS? Why in the Hell did I hang that poster there?

And then there were tears. And there was internal beating myself up. You're pathetic, I told myself verbally and internally. You don't make moments count. You're trapped in a body that can't do the things that define you and you're cursed with knowing exactly that; you're cursed with a disease that steals your body, but not your brain.

I AM NOT PATHETIC. I know that will be today's positive affirmation. But I also know it's true that I am stuck in a body that betrays me, while my mind stays sharp. Living with CFIDS for so long, that has always been my greatest fear. That one day I would be crippled by it, in such a way I spent all my days in bed, watching life and the world go by me. Oddly enough, it's more the TOS that has caused this. I never saw that coming.

CFIDS, in total, has caused me to spend nearly 3 years combined total disabled, stuck in bed. So I am familiar with this type of torture. And I've always told people, whether they believe it or not, that's a fate worse than death.

A few hours ago I was a leaky sobby mess, but I already have my fight back. I don't know how, but I'm going to find a way to get out of this trap. It's like wild animals that are captured and caged. In the movie XXX, staring Vin Disel and Samuel Jackson, Jackson's character says,
"You ever watch lions at the zoo? You can always tell which ones were captured in the wild by the look in their eyes. The wild cat. She remembers running across the plain, the thrill of the hunt. Four hundred pounds of killing fury, locked in a box. But after a while, their eyes start to glaze over, and you can tell their soul has died. The same thing happens to a man."
Jackson's character is referring to prison, but it's the SAME for people like me.