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 shortens life. It makes life a little harder. And then a lot harder later on.  A little sweeter 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 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 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 paint what it muddy the colors of her perfectly painted 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.


  1. A beautiful song and singer. If our healing starts in the heart, everything truly will be alright. We are love, and we are with you, right beside you, even when you are sideways.

  2. Jennifer, you are loved and we are with you. Enjoy each day as much as you can and as Michael said too, everything will be alright.

  3. If I had magic or something that would help you, I would send it your way. I wish I could hold your hands and heal you right away.

    Knowing this about you makes me more in awe of what you do with your assemblings. Your beautiful work doesn't show the sadness of the Fabry's disease. Your beautiful work shows what I have known all along, a beautiful person inside and outside. Your beautiful work (assemblings and writings) have inspired so many including me and I am forever grateful to have an opportunity to read and have a piece of your work.

  4. Oh Jennifer, thank you for your candor and such a beautiful post. Please know you are in my prayers...

  5. Oh, fervent prayers and most heartfelt concern are offered for you...You, who touch so many, by being the inspiring and creative person that you are... I just have to believe that every little thing(and big thing)IS gonna be alright!

  6. Bellaluna1323 July, 2010

    This is my first time reading your blog, I'm from Malaysia and I do think that you are blessed with talent, compassion and love..Your writings give me inspiration..I thought I have big problems but none compared to you..thank you for sharing...

  7. As always, my thoughts are with you. Some of us have tortured bodies, others tortured minds, but your ability to rise above it all constantly inspires me. You are a light in the darkest moments. I feel truely blessed to have you in my life.

  8. Dearest ~ Thank you for sharing your heart & soul with us, in your writing & in your most beautiful creations. You are a precious gift to us all! Sending you warm embraces of love & comfort today ~ for you and darling E.

  9. I'm so glad you decided to share your truth. I feel for you, I feel all of the emotions you described and so much compassion/empathy for what you must be going through.

    I had this thought come to me as I was reading this. I've had daily migraines for my entire life, and just recently discovered certain foods, namely gluten have been causing my migraines this whole time (it causes inflammation!) I've read it worsens arthritis in people too. Its just an idea, but maybe a holistic approach (a special diet geared toward reducing inflammation) could help (at least w/ the pain/inflammation)

    Know that you have so many friends/family out here who believe in + support you, who see your truth + love you!


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