Why talk about having a rare disease? Should it be done for advocacy, to raise awareness, to garner funds, or to simply highlight the beauty in our diversity? Of all of these, perhaps the last one is the least mentioned. This post is in honor of Rare Disease Day, a day on which we celebrate by highlighting that which makes us completely (or perfectly - read on for the significance of these two words) unique.
There is a Japanese art form, known as Kintsugi or Kintsukuroi, that involves repairing cracked and broken pottery with materials that are mixed with gold. (Chances are you might hear more of this, since Death Cab for Cutie has just announced that Kintsugi will be the name of the band's upcoming album.)
We in the West generally try to minimize the appearance of damage (think Bob Ross: “We don’t make mistakes; we have happy accidents”).
From the day we first use Elmer’s Disappearing Purple Glue Stick in preschool, we learn that imperfections (in our sense of the word) are to be masked. We may slather them on purple but we want them to dry clear. As if they never were.
On the other hand, the Japanese almost seem to highlight the brokenness of two things brought together in an act of repair. Rather than damaged, the object is seen as showing a more complete story, with no event in its history masked or hidden. In the West, we often seek out unsullied objects for our collections: that unopened, factory-sealed doll; that mint-condition World War II-era gun that has never been shot; that boxed Commodore 64 complete with all its parts.
But “kintsukuroi” translates as “golden repair,” a two-word pairing that may seem almost paradoxical to our Western minds. If something needs repair, isn’t it by its very nature broken and worth less (not necessarily, though sometimes, worthless as well)?
It is, and then it isn’t. It is broken, but then it is mended, with its brokenness highlighted, celebrated. Its flaws become beautiful storytelling features, communicating with shimmering gold that life happened here. In Japan, far from being worth less, an object that has been repaired using the kintsugi method is sometimes even worth more than the flawless version.
Can something that is broken truly be golden? Yes. I believe the rare disease life is an important example of this. Our bodies are broken, mended with surgeries and medications, and then broken some more; but with many invisible conditions, our flaws can be hidden from sight if we so choose.
Yet should we choose otherwise, our individual stories of living with a rare condition provide us an opportunity to share some of the cracks and blemishes that make our autobiographies remarkable.
But how do we go about sharing these flaws? Do we share them as battle scars, wounds that create a negative impact in our everyday, excuses for us to live bitter, cracks in the pottery? Or do we share them as elements that add value, humanity, and gold to our lives?
Perhaps a piece of pottery that has never cracked or broken (or shows no evidence of this) belongs on the shelf for everyone to ooh and aah over, much like a model in a magazine. Maybe we don’t examine it closely enough to discover that it is really a photoshopped facade. But if life is for the living, I’d rather be pieced back together over and over, each time with gold that brings more attention to the ever-growing number of flaws that represent mistakes made, lessons learned, and grace offered.
The word “perfect” comes from a Latin word that means accomplished, finished, or complete. Applying an air brush effect to a model doesn’t complete her. It creates a new, unnatural, flawless but nonexistent creature. She is only complete with the full effect of her humanity present.
Our flaws can be made beautiful, but we do have to be careful about how we wear them. They should add beauty to our lives and should never be masked or hidden - or unduly lamented. They are not to be deprecated or assist in the victimization of ourselves. They are part of our story, part of our shining history. Our story is incomplete - and therefore imperfect - until all our flaws are stitched into the fabric of our lives with golden thread.
Share what makes you rare. Share your flaws.