To Be Whole…

I know this child. I was she. With few role models to begin the journey, I faced my own mirror and saw a ‘dancer’.

There was no textbook for how family could raise a disabled child with confidence and opportunity. In the late 50s and early 60s few families had the support of established organizations nor were encouraged to meet with one another to share their struggles and successes.

Blessed as a child I knew few limits. My memory takes me to friendships and fun. My memory takes me to travel, family, school and all things that nurture the imagination of a child. The limits that were obvious became challenges (puzzles) to solve. The world was before me and all I wanted to do was move through it with the spirit’s music and rhythm. There were plenty of times when I needed that music to cushion and calm. Every child has to face the hard edges of growing up. These edges were particularly unique for me (as they are for any child growing up with a disability) – I entered the world of medicine, doctors and surgery at a very young age. Recovery from multiple surgeries was hard but to go without I could not have moved forward. So, there was never a question – recovery it was. With encouragement and love from parents and friends, I made my way through those young years and into an adult life filled with opportunity.

“Dancing” takes on many forms and the steps change throughout a lifetime. Ordained an Episcopal priest, I have the honor to lead the steps in faith’s dance, through the grace offered by God’s spirit. Now retired, I am testing the next steps in this dance. Again, the textbooks are few for what the road ahead should look like, which is a good thing because my style would most likely challenge any expectation. As many readers know, I have recently moved. Along with settling in a new home, I am meeting new doctors and other practitioners on a regular basis. To my surprise, there have been several moments when I have been thrown back to hard edges of my childhood. While recently meeting with a new physician, I made mention of how grateful I was to be so ‘healthy’. Her response – ‘yes, you have few immediate health problems which is good. You are in pretty good shape to be so ‘broken’. ‘Broken‘ – a word I have never thought of when describing myself. I may be able to understand her intent but the word used was hurtful.

That same confidence that carried me through childhood, the confidence that knew few limits, is still ever-present – ready to redefine and move ahead with the dance that is before me. I take these new steps grateful that I know the difference between being healthy and being whole. Like the image of this tiny dancer — it is not about seeing the broken – if that is all we see than we miss the beauty before us. She has all she needs.

I know that child, I am she.

14 thoughts on “To Be Whole…

  1. This is exactly what I needed to read today. I, too, am a child of the ’60’s when the standard answer to a diagnosis of CP was, “she’s better off in an institution because she’ll likely be profoundly retarded and never be able to care for herself”. It’s very different now so it’s not something younger people can relate to. Nowadays society encourages and supports the disabled rather than trying to tuck them away.
    I didn’t end up in an institution (although lots of people think I’m nuts ;-P ) and I’ve “danced” my way through a great life so far. Today was not a good day but tomorrow will be better. I have so many plates spinning at once that I get thrown when I can’t keep them all going. I’ll start over; I’ll live.
    You are less “broken” than a great number of people – because you choose not to be. Bless you for sharing!

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  2. i never saw you as a broken anything – only as a fun loving and beautiful person. A person that I am HAPPY to have had in my life.

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  3. What a beautiful piece you have written and shared today. As you said yourself, you cannot trust your health to someone who sees you as inherently broken, and whether or not it was just an unfortunate choice of words, you still have to choose the option to find a doctor that sees all of you exactly where you are today; confident and whole. I’m sorry that even today, you still come across people who have such limited vision.

    Not too long ago, while re-qualifying for disability benefits, I had to go through a series of examinations by a bevy of new doctors. I was surprised at how deeply it disturbed my inner peace, in that they probed and prodded all my childhood memories. It was abundantly clear that they were evaluating my own brokenness based on the echoes of a very painful chapter of my life. So many ghostly memories were rattled to life, and I spent a while uncomfortably trapped in the memories. Yes, I was aware that this was simply a necessary step to move forward, but still, it was quite unsettling and discomforting.

    As you continue to explore your new surroundings, it is my hope that you will have many more opportunities to embrace your new life with confidence and an abundance of good health. When your hear the music, my hope is that you will lean into it, and give your whole self over to the rhythm, as it carries you through this next chapter. Sending blessings, and hugs.

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