epilepsy · stories

Finding beauty in the broken: From the other side of diagnosis

I was recently given an “assignment” from a community group, in which we were tasked with writing a health care scenario in order to help participants think about navigating the health care system from multiple perspectives. As usual, I got a bit carried away and wrote not just a teaser for my story but pretty much the whole darn thing. Again.

I first wrote Our Story during diagnosis and updated it to reflect later surgeries and developments … and as the curtain of emotion began to pull back, allowing time and perspective to shine light on the darkest chapter of my life.

This story, without me realizing it at the time, allows for that light. And although I cried many tears, this time was different. Something shifted. And that shift was how I think about Our Story. How it defines me. How I’ve let it define me in good ways and bad. I’m kinder. I welcome and respect all people, of all abilities, colors, religions … I’m more compassionate. I cry more easily.

I’ve also let Our Story define me as someone who is broken. Who is weakened. Who will forever be defined by this chapter.

This was my a-ha moment, despite the challenges and worries each day continues to hold: I’m not broken. And neither is he.

This reminds me of Kintsugi (or Kintsukuroi, which means “golden repair”), which according to My Modern Met “is the centuries-old Japanese art of fixing broken pottery with a special lacquer dusted with powdered gold, silver or platinum. … This repair method celebrates each artifact’s unique history by emphasizing its fractures and breaks instead of hiding or disguising them.

“Kintsugi often makes the repaired piece even more beautiful than the original, revitalizing it with new life.”

New life. New beauty. A new story. Which I hope you’ll read along with lessons we learned along the way.

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