Published on XO Jane
As a kid, were you ever embarrassingly honest? To the point where you completely mortified your mother? As a kid, that was totally me. We all know that kids say the darndest things. When we hear an alarmingly honest comment from anyone under the age of seven, we usually laugh, think it’s adorable, or take it with a grain of salt – at least I do.
Caption: My art
I’d like to think I’m pretty good with kids. I’ve taught nursery school, art classes, and I even used to be one myself. I’m used to little comments about my shoes being “yucky-colored”, or I pronounce a word “weird,” or my art is “really bad.”
I’ll usually respond to them with a witty answer, or laugh it off with no answer at all.
But during one of my art classes, a little boy asked a question that I didn’t really have a quick answer or “quip back” for.
“So, what’s that thing on your neck?”
Oh wow, it’s been so long I didn’t even remember I had it, but yes, that scar on my neck, it’s there.
It’s my tracheotomy scar.
My Scars and (Some of ) Me…
I have many memories of that awful tracheotomy.
It felt like a bolt in my neck, and for the longest time, I could only feel something there — I had no clue what it was, what it looked like and what it was for.
I stumbled and tried to think on my feet, semi-self-conscious at that moment — what would be a cute response? How was I to show that I was not hurt, ashamed or embarrassed? It took me a long time not to feel self-conscious about how I feel in a new body.
What do you call a scar?
I was about to say it was my “Harry Potter” scar, but then I realized a kid that age probably had no idea who Harry Potter was. Suddenly, I felt my age. What was I supposed to tell a kid without scaring him off or making me feel uncomfortable? My impulse was to laugh, just to reassure those around me that my own feelings weren’t hurt. I’ve survived on thick skin, and I try to keep that persona when it comes to all I’ve been through. I don’t like others to feel sorry for me. I always declare that I’m happy this happened to me – 27 surgeries and all – because it’s made me who I am.
Caption: My art
But this tracheotomy scar is part of who I am too. And sometimes, that’s not so easy to think about.
Scars are part of us. They are beautiful.
They are healed flesh.
It reminds me of one of my favorite poems, “For What Binds Us” by Jane Hirshfield.
Do you have a scar? Is it visible, is it hidden? We all have physical, emotional, spiritual, beautiful scars. What do you say to others about it? What do you say to yourself? Think about a scar you have — big or small, hidden or on the surface. What does it say about you? What does it mean to you?
One of my earliest memories after waking up from a coma is hearing this guy cry in his deep, kind voice, “Oh Amy, I’m so sorry, I’m really so sorry,” and feeling this burst of pain, and blood going everywhere I think. It was when he was trying to put a tracheotomy in my throat, and by accident, he shoved one in that was a size too big. I don’t really remember what happened, but it was a big, bloody disaster.
I remember seeing the world that time as though I were at the bottom of a hole looking up at the light coming down from the sky. Like I was underwater seeing the sun shining through the surface of the ocean. Because for a long time life was just lived on my back, so the only things within my view were the doctors over my head. Sometimes I would see people brushing by the curtains, peeking their head in to say hello. I could strain my neck and see the television, which was very misplaced. And if I looked to my right all the way, I could see my mom lying in her cot, but I couldn’t really turn my head that way because I would choke from where the esophagostomy lay.
I remember when I finally got the tracheotomy taken out and a guy — that’s the thing, there were so many people coming in and out who knew me for some reason, and I just had to pretend like I knew them and let them manipulate all my various plugs and drains just like they were playing with my hair or something. So this guy took out my tracheotomy and covered up the oozing gap with a Band-Aid and said it would be hard for me to talk for a few days until the hole closed up. And I remember someone said this was the first real milestone in my journey. And I just thought to myself, Well wow, this is going to be a really long journey I guess…
The wound this peg left eventually closed, and when it did, I no longer had to press a thumb to my neck in order to emit sound. But the scar never went away. I am so used to that indent in my throat that I don’t even notice it anymore. I didn’t think anyone else did, either. But this kid did. And just like he happily called my hair messy, or my art yucky, he wasn’t meaning to say anything negative — he was not repulsed by my scar. So how was I to respond?
We’ve all heard that imperfection is beauty and our flaws give us character.
Caption: Me and my “body art”
But what do our scars give us? What have they made us?
So when I look back on it and watch my progression through the years, I’m really amazed at how far I’ve come and that I’ve gotten everything back – except the body I had. But does anyone’s body ever stay the same?
As I started to remember where that tracheotomy used to stick out of my neck, and those little neck-bags I’d have to stick onto the gaping hole it left in my throat, I almost have to pinch myself to remind myself that I wore that for so long. I remember that in spite of everything, I am such a warrior.
“You’re a trouper,” everyone would tell me as I put up with anything in the various hospitals. But I’m not a trouper. I’m a warrior. I don’t just go along with things. I fight through them. And I’ll take whatever means I need to fight. When you ask your doctor day after day when you will be allowed to eat, and he simply replies I don’t know, as he copies down the various data displayed on a screen just above your head, you must find a way to get through. You don’t get through surgery after surgery just meekly accepting it and rolling with the punches, or just casually shrugging your shoulder every time a doctor gives you a troubling prognoses. You harness inner resources you had no idea you ever had within you.When I felt like I couldn’t really do anything but be the doctors’ plaything, I told myself, “Fight, Amy, fight to get through. Fight to live, one moment at a time.”
Caption: Me, my one-woman show, and my scar that got me here
The world may see a tracheotomy scar, but I see a powerhouse of strength – a battle scar painted on my neck, right over my throat, empowering me to reclaim my voice, and boldly speak my truth: I am a warrior.
Can I believe I really went through all of that? A world of living in crisis, at the will of doctors, trying to survive from one minute to the next? Touching my scar, I’m reminded that now is a different safer time: Look around you, Amy. notice what you see. This is the world as it exists now. You have a scar, and it just makes this time all the more precious.
Nothing lasts forever. Even the hells I was going through at eight different hospitals didn’t last, or the crying fits I had, as I moaned with the fear that my life would never get better. The sun always has to come back up. I didn’t eat or drink for an extremely painfully long time, but those six years eventually passed. Even my MRI’s didn’t last forever – although they certainly felt like they would at the time.
Now is a different story. The sun is shining out my window and there are no doctors or surgeons running after me with scissors and sutures or pain patches. The engineer will not be wheeling in his gigantic X-ray machine momentarily. It is actually quite calm classroom setting, when that little boy asked me about my scar, on a very ordinary Monday. And nothing is leaking out of me, or medically wrong with me so it’s okay, I’m safe. I’m really safe now. Safe in a wonderful world where children look up to me to teach them art.
Caption: Me as a kid
I’m safe from a world where doctors can casually pull up your hospital gown and a prick there is the same as a prick over here. Safe from a world where nurses ask you how you’re doing and you want to say if you only knew. Safe from a world where I’m chained to a giant IV Pole hovering above my every move. The medical supplies are all tossed or packed away.
My scars have kept me alive. My scars have kept me together. My scars make me remember there was a time I thought things would never get better. When I say that the circumstances have passed, but the “scars” remain, I’ve realized that is a wonderful thing. My scars are what I can show for the resilience I’ve had, and these scars are miraculous proof that the body can heal and amazing things happen every day. Like a wall of graffiti that keeps getting spray-painted over and over and over again, I’ve only got one body, and it’s quite the shape-shifter. It’s been broken, put together, scarred, unscarred, dented and indented.
The good part is, I’m off the hook. The kid walked away, and I was left with the question myself. What is that scar on my neck? My scar is just one of the many stories in me — a story I’ll always carry with me. And that is the beauty of how we move on in life. In the end, only our stories remain.
Healing is hard. But the body is amazing. We all have scars. What stories do they tell?
This is a song I wrote about my own scars on my new body: