As I watched football with Sam in the Chattanooga Choo Choo Hotel this weekend, I surfed the web, searching for info on Mitochondrial Disease. My 82 page muscle biopsy report arrived in my in box ten days ago and while I know it confirms I have adult onset Mitochondrial Disease, there's a lot more I don't know.
My search led to the mito action web site where I read, "When facing a diagnosis of something like Mitochondrial Disease, it is important to acknowledge feelings of grief. There is the grief of the parents over the life they had dreamed or imagined for their child, and there is grief for the adult of the loss of the life they thought they were going to have. Do not underestimate the impact of this grief, and the time that it takes for a person or family to heal... First there is the crisis stage which usually lasts only a short time and is followed by isolation - the person is exhausted by the crisis and now just feels totally alone and wants to be alone..."
Stop right there! It wasn't until I read those words that I understood what I've been feeling the last few months. Yes, my new med is helping a great deal.
But while I've enjoyed relief, I've also grieved continued limitations that may never go away. Trying to filter the good with continued loss made it easy to shrink back into isolation.
The article continues, "Then there is the stage of reconstruction; life is not like it was before but you can reconstruct your sense of self, or your sense of 'normal' for your family." (By Cristy Balcells RN MSN and Joanne Turco, RN, MS)
www.mitoaction.org/blog/coping-mitochondrial-disease
Sometimes I think writing about all this is blah and self focused. But then I read this quote from Joni Eareckson Tada, a quadriplegic who is now battling cancer, "God's up to something big. How can I showcase Him to others?"
www.worldmag.com/articles/17198
Armed with her words and numerous facebook birthday well wishes, I've decided to come back out of hiding and try to get faithful with writing... again. For "we are not of those who shrink back and are destroyed, but of those who believe and are saved." (Heb 10:39)
The above photo was taken at a fund raiser for a mito clinical drug trial. Yes, that's me, a poster child for mito disease. Its' not exactly where I thought I'd be at this point in life... "But we are not of those who shrink back..."
2 comments:
You're so much more than a poster child for mitochondrial disease. You're one of God's beloved Children, and a poster child for love, life, and faith! Happy birthday Susan!
So proud to be your friend. You're in my thoughts and prayers as you begin this new adventure. Allow yourself to feel the grief and know many are praying for you.
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