For some time I have been trying to write about how life long disability shapes a person. I have mulled over the title of Accent of Disability or something like that. I have gotten great input from people who frequent the Cerebral Palsy is Awesome board and others. But, I haven't been able to get very far in my writing because I don't think I had faced a foundation of my beliefs about lifelong disability yet.
I was born with diplegic spastic cerebral palsy. That's a mouthful to say that my brain does not control the muscles to my legs and right arm or hand very well. I walked late. I fall often. I am uncoordinated and clumsy. My speech is a little disarthic. And now in my mid-adult years I am weak and frequently in pain. And, I am finally at peace with all of that. I can no more change this then I can my genetic structure. Cerebral palsy is a part of me. It permeates deeply into what makes me, me. It has strengthened me and changed what I would have otherwise deemed important. It has made me search for the inner value in people instead of looking at outward appearances. Cerebral palsy has taught me to be gentle with myself and others in ways that I don't think I would have learned otherwise.
I wasn't always at peace with myself. I have written before of my pentecostal roots. In those circles many people believe in and seek divine healing. There is nothing wrong with that in and of itself in my opinion. A more recent development in those divine healing beliefs is that healing is the right of all Christians. True believers have only to claim this right. If they are to continue to be sick or have symptoms then they need to hang on to their healing anyway, it is their divine right. If healing is a right of all Christians, then those who are not healed are ignorant, in sin or lack faith. Which of those categories did I fall in? I used to ask myself that question over and over again. I poured over my soul looking for little tiny excuses of sin and unbelief trying to purge myself of whatever would keep me from my divine right - healing of my cerebral palsy. Others thought this way too and tried to help me. My ailment is not invisible or silent. It hung out there on public display for people to see.
A church I attended in the 90s had a tradition of declaring a direction for the year every new year. One year it was proclaimed that that year would be the Year of Miracles. It wasn't too long after that proclamation that I announced I had been healed of cerebral palsy. This wasn't a lie. I fervently believed I had been healed. I believed this passionately. And when my symptoms declared otherwise I clung to what I believed. I even signed up for a ballet class. Me, in ballet? It would be comical, but I can only compare that now to the king parading in his invisible clothes. What was more interesting is so many people around me refused to acknowledge the fact that I was in fact, not better. I still couldn't dance and I still for all the world looked like I had cerebral palsy. Many were afraid of looking unspiritual if they didn't stand in faith with me for my healing and acknowledge anything different. One person claimed to have a ministry of deliverance and even offered to help me cast out the spirit of cerebral palsy. I questioned how one casts out a brain injury and that pretty much ended that conversation. Everybody was afraid to state the truth - the emperor had no clothes, I had cerebral palsy.
When I left church and began a period of soul searching I was amazed at how all the shame and guilt just dropped off of me. I was free to be me, who I really was, in many different ways. And I was amazed at how much emotional energy I had used fighting for a healing. A healing that will never come and that is okay. This was a great relief in many ways. That is not to say that I don't go to the doctor or work with physical therapist to maximize what I can. But, I will never be as someone who doesn't have cerebral palsy. And that is not only okay, that is wonderful.
Tuesday, February 16, 2010
Sunday, November 8, 2009
Most of us remember vividly the first time we meet our children. When I met my oldest daughter for the first time she was staring up at me with impossibly blue eyes - wondering. That has been something I have become used to Treasure doing through the years. She wonders about everything, the ridiculous, the mundane, the fantastic. She is always questioning. It seems to be part of who she is.
Two years ago I felt like I stepped into a Stephen King novel when both my little girls were diagnosed with ecoli poisoning. It is rare enough for two children in a home to be hospitalized from ecoli. But when they were both diagnosed with a much rarer, potentially lethal syndrome, caused by the ecoli poisoning, that felt like being struck by lightning twice. The weeks in Pediatric ICU are a blur of tests, doctors, blood transfusions, dialysis and beeping alarms and strange but necessary machines. Then one day the thunder storm seemed to be passing - Tori had recovered enough to go home. Treasure was improving and was undergoing some of her last dialysis sessions. It was one of those last dialysis sessions that Treasure became very uncomfortable and complaining of terrible head pain. She was restless and I was very relieved when the dialysis session was over. I was leaning over her and looking into those impossibly blue eyes again when she calmly looked up to my face with her familiar wonder and asked, "Who are you"? No parent is ever prepared for their 5 year old to not recognize them. But, with the torrent of emotions I was feeling at that moment, never once was I ever mad at my daughter. A steely resolve rose up in me that she should one day know me and how much I loved her again, whatever that would take.
Of course, two years later I have accomplished that goal. But Treasure's past inability to recognize me speaks to a deeper search I have been on over the last decade. Suffice to say that my faith has been ravaged in many ways over the last ten or so years. It was assaulted in every possible way, to such a point that I have on more then one occasion looked up to the heavens and wondered, who are you anyway? I have come to many conclusions while I have sought to answer that question and even settled for an unhappy period of agnosticism when I despaired that question would never be answered.
One thing I am sure of tonight is that my heavenly parent is no more angry at my questions and wonder then I was at my daughter's. Life is complicated and uncertain. I cannot believe that a God would be insulted by my confusion, but instead I do sense a steady leading in my life as this God answers my wondering and challenges my perceptions about who God would be. I have read countless books and spent many hours wondering about God. My beliefs have changed. I was a devout pentecostal girl who was on the edge of all things Charismatic. These days I no longer speak in tongues. I am not involved in endless evangelism, spiritual warfare, worship seminars and everything else Christian ad-nauseum. But, there is a strange satisfaction I am discovering as my wondering is being answered. The God I am rediscovering is different, but no less fantastic. And, I am so caught up in people, and our imperfections and flaws and strengths and weaknesses. How we can be there for each other.
I would not try to convince anybody else of the truths that I am finding. For me they are just the answer to my blue eyes looking up into a storm and wondering. If someone else doesn't see the same thing - well, that's okay, maybe they are just in a different place in their walk or their eyes are looking at a different sky. At least I am no longer afraid to wonder.
Two years ago I felt like I stepped into a Stephen King novel when both my little girls were diagnosed with ecoli poisoning. It is rare enough for two children in a home to be hospitalized from ecoli. But when they were both diagnosed with a much rarer, potentially lethal syndrome, caused by the ecoli poisoning, that felt like being struck by lightning twice. The weeks in Pediatric ICU are a blur of tests, doctors, blood transfusions, dialysis and beeping alarms and strange but necessary machines. Then one day the thunder storm seemed to be passing - Tori had recovered enough to go home. Treasure was improving and was undergoing some of her last dialysis sessions. It was one of those last dialysis sessions that Treasure became very uncomfortable and complaining of terrible head pain. She was restless and I was very relieved when the dialysis session was over. I was leaning over her and looking into those impossibly blue eyes again when she calmly looked up to my face with her familiar wonder and asked, "Who are you"? No parent is ever prepared for their 5 year old to not recognize them. But, with the torrent of emotions I was feeling at that moment, never once was I ever mad at my daughter. A steely resolve rose up in me that she should one day know me and how much I loved her again, whatever that would take.
Of course, two years later I have accomplished that goal. But Treasure's past inability to recognize me speaks to a deeper search I have been on over the last decade. Suffice to say that my faith has been ravaged in many ways over the last ten or so years. It was assaulted in every possible way, to such a point that I have on more then one occasion looked up to the heavens and wondered, who are you anyway? I have come to many conclusions while I have sought to answer that question and even settled for an unhappy period of agnosticism when I despaired that question would never be answered.
One thing I am sure of tonight is that my heavenly parent is no more angry at my questions and wonder then I was at my daughter's. Life is complicated and uncertain. I cannot believe that a God would be insulted by my confusion, but instead I do sense a steady leading in my life as this God answers my wondering and challenges my perceptions about who God would be. I have read countless books and spent many hours wondering about God. My beliefs have changed. I was a devout pentecostal girl who was on the edge of all things Charismatic. These days I no longer speak in tongues. I am not involved in endless evangelism, spiritual warfare, worship seminars and everything else Christian ad-nauseum. But, there is a strange satisfaction I am discovering as my wondering is being answered. The God I am rediscovering is different, but no less fantastic. And, I am so caught up in people, and our imperfections and flaws and strengths and weaknesses. How we can be there for each other.
I would not try to convince anybody else of the truths that I am finding. For me they are just the answer to my blue eyes looking up into a storm and wondering. If someone else doesn't see the same thing - well, that's okay, maybe they are just in a different place in their walk or their eyes are looking at a different sky. At least I am no longer afraid to wonder.
Sunday, September 20, 2009
Dual Personality
So strange - reading a book on poverty and a moral response to it. And at the same time searching for maid service to help me stay on top of my small apartment. I feel conflicted.
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