This is Day 34 of the Positive 100, a countdown to Rare Disease Day 2014 and an exercise in being positive despite it all.

When I posted today’s theme this morning, a friend wrote “A scar is like a tattoo but with a better story,” and I couldn’t agree more with that sentiment. Some people look at scars like a disfigurement, I see mine as a roadmap of my own story.

It is thoughts like this one from my dear friend KC’s story that show me just how much we need to change how we see our scars:

“I felt ashamed, unattractive, disgusting even. I told myself that my friends tolerated all the gross parts about me because they loved the pieces of me that are funny, intelligent and strong. I allowed several people to treat me like hell because I felt like hell.” – KC Pomering, We are all Made of Scars

Scars should be a badge of honor, not something we see as a disfigurement. But I get it, because I have been there too.

Scar-y stories to tell in the dark

I have a now nearly invisible scar on my lip, courtesy of one of the family cats from my childhood. When people asked what it was from, I told told them I had a lip ring pulled out. There is a scar on my forearm from a run-in with a fire hydrant that was attached to a building. There are a few scars on my knees from my klutzy past. There are even some scars on my finger tips from my past attempts to learn how to use a curling iron. (I still cannot do that one…)

Those are stories of adventure and life.  They tell you that I was never destined to be a ballerina, no matter how much I love dancing. But all they really are is normal wear and tear. It’s the other ones that tell you about the war I wage with my body.

They are my battle scars and they are the proof that I have survived. That I showed up to the battle, and though I did not make it through unscathed, I made it through just the same.

The first time someone other than myself, my medical team or my mom saw the scars from temporary intrathecal drug pump (a fancy term for having an automated stream of medications directly flowing into my spine, I didn’t know what to expect, but it turned out to be the beginning of the end. There were already a series of small scars, which, had they been anywhere else, might have led you to conclude that I was some kind of junkie. But it was that last one, seeing where a tube entered my spine for 6 weeks that did it. 10 months later, the spinal cord stimulator scars sealed it.

They were evidence of a fatal flaw. I was broken. I was fragile, too fragile to be touched. And every time they were glimpsed, I was treated less and less like a person and more and more like something else. Like a pity case who would break with a mere breeze.

The next time someone caught a glimpse of the still-pink 4″ scar on my spine and its partner on my left hip, I was frantically trying to find an explanation that didn’t involve admitting to being part cyborg or discussing a certain rare, progressive and incurable  neurological condition that makes me not quite your average twenty-something. What could I say that made them seem normal? Car accident? Suspicious moles like the scar on my shoulder? A fight with my cat?

How do you explain to someone you are just getting to know that your packaging is damaged? How do you make them see past the dented and torn box to see that it is just the outer wrapping that isn’t the best?

These thoughts, racing uninvited in my head, took over my thoughts so completely that I failed to realize that they had gone unnoticed (or at least unremarked). All that worry for nothing. In that moment, I didn’t need to explain why they were there. It wasn’t time to share the story of those scars. They were just part of the story, a small mark on a painting. Beautiful and interesting and right where they belonged.

Do you see?

The moment wasn’t about my scars or what was wrong with me. The moment was about the whole picture and what was exactly right with me. And it is when I really learned that scars are unique and beautiful. Mine are woven into my story, a crucial part of the tapestry, but they are not the whole story. They are a fragment of a moment and their part does not make this tale a tragedy.

The scars prove that I am the opposite of fragile. That it would take much more than a touch to break me. No hug is going to crush me. That is the story they tell. One of strength and perseverance. Where disease and pain are the enemy and I have waged one hell of a fight.

Scars are beautiful because the prove we survived. They are a mark of courage and strength.

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