Sunday, July 18, 2010

Every Little Thing Gonna Be Alright

Last night I broke down just a little...just a little. At my jewelry table in the darkness (surrounded by the circle of light from my old desk lamp), after reading an email from one of my most precious patrons. There was a feeling of profound gratitude for her words mixed with a deeper sadness. Kind of feeling sorry for myself mixed with the sweetness of life and the knowing of how fragile it is. How transient we all are.
...focusing on others tends to keep that ghost away. The ghost of sorrow and worry and the confusion of the questions and the why me?
I have thought about sharing what I am going to share with you this morning, and whether I should. I have told one of my special customers, my dear LoveLady about it, and a few friends and family. Maybe I fear that it will be minimized and brushed aside again, as it has by some so close to me.

But this is real and this is my truth. I suffer daily from quite a bit of physical pain due to arthritis in my spine, and a very rare disease I was recently diagnosed with, called Fabry's Disease. It causes severe nerve damage and severe pain among many other disturbing things....it shortens life. It makes life a little harder. And then a lot harder later on.  A little sweeter too...in a strange way, and I'm scared. That's it. I'm scared.

Over the past two years, I have gradually lost the feeling in my feet almost completely now. Nerve damage is a strange thing...I can no longer feel the dewy morning grass or warm beach sand beneath my feet, but I can feel the pain of my nerves that rage at me incessantly because of their lack of feeling....and now the dullness is creeping up my shins....and I am now loosing feeling in the tips of my fingers. That's where it starts. I knew it would come, I just didn't know how soon. I've been dropping things...
And so it begins; the loss of my hands. And I feel helpless.

I have accepted the loss of my feet. I had hope that a rare treatment option, a monthly two week infusion, would bring them back, though I know that once a nerve is severely damaged it is gone forever.
But now, my hands are leaving me. My tools of bliss. My joy. My life is here....in these weathered gems with which I speak.
There is a treatment available, yes. There is. But not just yet. It doesn't always work. Sometimes the treatment is worse than the illness. And I think the letter I received from the company the other day took some of my hope with it as I filed it away...it basically said, that treatment (the infusions) will be delayed indefinitely. No new patients. My heart sank.
This translates into more pain and more damage to my body ...but the worst part. The worst possible part, is that this disease has a hold of one of my children. Her treatment has also been delayed. Fabry's has been given a beautiful pale-skinned canvas...to paint what it will...to muddy the colors of her perfectly painted insides....to ravage her spirit.

Last night, as I sat creating under my little circle of light in the 2 a.m. darkness, I began singing this song to her as she slept near me. And I woke up with it in my head and thought I'd share it. I am thinking of us. E. and you out there and me here, and how we are all here together. Each of us with a story to tell. Each one of us, touched by pain of some kind. Each one of us so fragile. So human. So needy.

Each day, I search for God. And each day I find God; even in my sorrow and in the questions.
This morning, I found God in my childs breath rising softly from the early morning. This morning God was in my prayer for healing for me, for my talented and quirky E. and for all of us. This morning is a gift, and somehow this illness has become a gift. Life has more intensity. More purpose. More urgency. More beauty. More intricacy.
God was the sunrise and the song and the gift of another day.
This morning, God was Bob Marley with a sideways sunrise... and a laugh when after much trial and error, alas, I couldn't figure out how to fix it upright.