Monday, August 27, 2012

Iron Woman and Darth Vader

Everything is easier when you do it with a friend.
Living with a chronic illness is easier when you do it with a friend. I'm guessing that is why they have support groups but I never wanted to be one of those people that sits in a room every week talking about how crappy I feel.
 I would give anything to NOT have my friend be sick even tho knowing I don't face this alone is making every day just a little easier.Not many people even know I'm as sick as I am because this particular sickness is an insipid beast. It lurks. It is invisible. It is easy to fool everyone into thinking I feel fine and yet have the act of breathing hurt. Knowing that someone really GETS this and that I am not alone is bigger than anyone "normal" would understand. Somehow, my friend Jennifer forces her body to do things I could not dream of doing. She runs marathons. She is an iron woman. She is an inspiration. Instead of being overrun by this disease...I'm beginning to run IT over. This is the influence she has on me.
I was never one to really take care of myself. I forget to take my medication. I baby my muscles because I'm afraid of over exerting and suffering the next day when just a little walking would actually improve things a great deal. I eat all the wrong things. And I refuse to wear the mask. I have refused the mask for ten years now.
THE MASK. That Mother F'ing mask. How I HATE that mask.
I have sleep apnea. It is so extreme that I stop breathing more than 75 times an hour. Apparently, I'm lucky I dream at all when my REM stage sleep is disrupted so often. The cure for this kind of apea is a CPAP machine. And I have one with comfortable little (nauseatingly ugly: see ALIEN) nasal pillows and an ELITE O2 machine hooked into it so I can avoid those life changing near death episodes. Not that the first one did not completely transform my life. But I would really like to see my kids grow up...or you would THINK I would but, until Jennifer went for her sleep study and came home with her very own CPAP machine I was not wearing that disdainful mask at ALL. Ever. Even when I knew it could help. Save my life. Make me a happier, better person. It was pride, really. Ego. I feel like I'm eighty years old wearing an oxygen mask to bed. I feel UGLY. My mother made all kinds of jokes with the respiratory therapist about some very creepy role playing she thought my partner and I could make happen with that mask and although I didnt run out of the room when she laughed about it, I certainly could not laugh WITH her or envision any scenario in which that damn cpap would be sexy. Unless you find Darth Vader sexy. Or fighter pilots. Ok...Top Gun was sexy. But I'm not deluding myself that I'm in the same category as Tom fucking Cruise. I'm not even a GUY for christ sake.
Anyhow...the point of this whole rant is that I've been wearing the mask. Because, Jennifer is wearing her mask. She even sleeps next to her husband wearing the mask. The reason I love Jen is that she is so totally fucking REAL. She does not hide behind pretense. She is who she is and she does not ever seem to make apologies for who she is. I LOVE THAT ABOUT HER! She inspires me to be ok with who I am. So WHAT if I have to sleep with a mile of hose strapped to my head. So WHAT if I feel like hell and cant make my house into something out of House Beautiful. So WHAT if some of the University mothers look at me and think that my dreads are a desperate attempt to fit in with art students half my age. Why do I care what they think?
I love my friends because they TELL me what they think, even if it hurts just a little to hear it. I need to hear it. I love that kind of honesty between friends. I love that I can accept myself because I feel loved. I feel loved and appreciated even when I disappear for a month or two every so often to "cave" and get my shit together. I feel loved even when I fall asleep half way thru a party. I feel loved and appreciated for ME. I can only be who I am. And the women in my life that inspire me to use my bread machine, to grow gardens, to walk slowly and to take my time...and to laugh at myself...those women are keeping me alive. That is what sisterhood is. We hold each other up. We compare notes on our kids and our relationships and somehow we affirm each other at the best AND worst of times.
If I could heal my dear friend I would. In a heart beat. I would make sure she woke up every day without pain. But in the meantime, I'm grateful that God gave me a friend who looks like Darth Vader when she sleeps every night. Maybe we can pose for a picture in our masks someday and find it actually funny. She could do that for me.
I woke up today feeling better than I have in a long time. And she did that for me too.

Friday, August 24, 2012

Commander in Chief

Lower Manhattan is filled with ghosts and somewhere far away, vengeance is sought as satellite guided bombs light up ancient cold stone mountain caves.
But my children laugh from deep in their bellies with cherry red kool aid lips and purple sharpie whiskers on their cheeks.
It is here I find my center. In their eyes is an end to the vengeance and wars of their fathers and the bombs my children throw are rainbow confetti, glitter and phlox.
A purpose driven life. A saint, a martyr, a teacher, a Buddha. Fulfillment in having the future solidly in my hands. A commander in chief training my troops to be the boots on the ground that win the hearts and minds of the future with compassion and laughter.
My children ARE my IRA. My future IS secure. I am living a life filled with meaning. I am changing the world, tying one shoe string at a time. When I lick my finger to wipe away the slyly tasted mud pie, I am a conqueror of the universe.
There really is NOTHING I want more than to raise my children. Together, we are shaking the universe.