This was my response to the amazing Kerry who blogs at Transcending CP. She is an amazing writer and I am in tears over how touched I feel at our shared experiences of being women who have Cerebral Palsy.
Your words touched my heart and brought tears to my eyes. I too have cerebral palsy. I was born 4 months premature with mild cerebral palsy. My grandmother likes to say that I fit in the palm of my grandfather’s hand. He was sure I would survive when no one else was. To this day I wonder if he passed along some of his energy, life and love to me with the surety of his words, because I did survive, and he died shortly after I was released from the NICU.
I want to thank you for writing about your cerebral palsy. It is a tough subject to write about, especially like you, I was treated as someone other and different, who had terrible comments made behind my back and to my face when I was a child, and even more surprisingly when I was an employed adult, before my cerebral palsy, which primarily affects my lower extremities worsened. I recall a customer coming up to me at the used bookstore I worked at and, said as if it were a casual remark. “What the hell is wrong with your legs?” I was flabbergasted. I have always avoided confrontation and cruelty.
In my early adult years I began to cover myself with tattoos. The main reason for this, as well as the on again, off again body piercing and variety of hair colors was that people would look at something other than my screwed up legs. Comment on my tattoos, please, but leave my hurting, dysfunctional hips, knees, ankles, entire legs and left arm when I am too tired alone!
I love that the woman in the store you and your mother went to asked if she could pray for you because she thought your were blind! I wanted to shout out loud when you wrote about the number of prayers God needs to hear in order to lend a hand or not. I think of this often. I also have a rare disorder which I’ve been fighting for three years that causes extreme, constant, horrific stabbing pain in my right ear. I have undergone three failed surgeries thus fair- the worst being a brain surgery a year ago where the neurosurgeon didn’t know how to handle my surgery so he just made up things as he went along, billed my insurance $100,000 and immediately dropped me as a patient, right after looking me in the eyes and telling me I would be living the rest of my life in terrible pain. Needless to say he’s on my “to sue for medical malpractice” list after I recover from the more invasive Oct. 1 out-of-state brain surgery.
I have not felt comfortable writing about my disability on my new blog yet. I’m not sure why. I have written a lot about my second upcoming brain surgery, my long fight to get sober after being introduced to drugs n my mid-20’s by an abusive boyfriend. I have written about being abducted, raped. robbed and having my car stolen from a “friend of the family” that babysat my daughter when she was 2-years old. I don’t know why I can write about these, and not speak of my disability. Perhaps because it is permanent, it defines my abilities, physical limitations and most of all my own self image and self esteem. I cannot thank you enough for sharing your amazing story! Maybe now I can get around to writing mine. I’ll be checking out your blog asap. Thank you for your beautiful, wonderful post. You have touched my heart and made me feel that there will be less stigma around writing about my cp then I thought there would be. Once so many people say such cruel words to your face or judge you silently or out loud for our physical appearances and disabilities I find that I hide from the world more than embrace it for fear of being attacked or hurt again. You’ve given me the confidence to start forming my own story of my life with cerebral palsy, and for the past three years this very rare nerve disorder. Thank you Kerry! This was a wonderful post!
Meet Kerry. She writes over at Transcending CP, and I asked her to write for Sisterwives because she has SO MUCH to teach. Since I found her blog via a mutual friend, I’ve been hooked. She writes incredibly well, in such a gentle way that even the difficult things are somehow rendered palatable – nay, beautiful – by her style. And difficult things they are indeed, for she lives with Cerebral Palsy, and it brings its battles to her every. single. day. And she rises to the challenge, and makes it through, every. single. day. She is stronger and more resilient than almost anyone I know, and I KNOW that her life – her words – are a lesson to us all. It is my honour and delight to feature her here – Lizzi.
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