When I was 12, I found myself sitting in a consultation room in front of a doctor I’d never met before.
The doctor asked: “What would you like us to do if you end up on a breathing tube after this surgery?”
It was a heavy question, and it terrified me. But it wasn’t my first experience with surgery — even at 12, I was a veteran.
I’d already had more spinal and brain surgeries than I could count, due to an early diagnosis of spina bifida, a neural tube defect that meant my spinal cord failed to develop properly. It led to pressure on my brain and spine that would cause weakness in my limbs, headaches, back problems, and fine motor issues.
By the time I was 18, I’d had a couple more surgeries related to my initial diagnosis, and an unrelated gall bladder removal that interrupted my final year of high school.
I felt like my body was no longer my own — literate with scars and imperfections.
It was around this time that my sister went for her first tattoo: a snake on her calf. She was about 24, and I was so curious about the process that I went with her.
Once inside I immediately fell in love. The parlor was covered from wall-to-wall with artworks of American traditional-style tattoo designs. Six or so artists were hunched over clients, and the buzzing of their tattoo guns was almost deafening. I remember thinking that the ink smelled like caramel, and there was a friendly, easy banter amongst the clients and the artists. It was incredible, and I immediately wanted a tattoo of my own.
I soon took the plunge. I was still just 18 and mum was skeptical, but I think she saw the value in making this initial, permanent change to my body before I did.
“You’ve had so many surgeries you didn’t want; I’m not going to stop you making this choice,” she told me.
The tattoo is a black and red mandala on my inner bicep. I looked at hundreds of mandala pictures before I settled on the sort of design I wanted. At the time, the tattoo had very little sentimental meaning personally, but I liked the idea of the mandala. Something that, in some cultures, would be worked on for hours in the sand, only to be wiped away in an instant. I recognized the irony, and that mine would be permanent.
I can remember sitting down for it, and the anticipation of the pain. This is where my history came in handy, because of my prior surgeries, I have very little sensation in my arms. All I felt when the tattoo artist began was a light stinging. When it was over, I looked in the mirror for a long time, admiring this new addition to my body.
Reclaiming my body autonomy
I hadn’t yet finished Year 12, and I remember parading my first tat around proudly at school. One teacher even asked if it was real. It gave me a feeling of toughness, of strength.
I didn’t immediately make the connection between tattoos and my trauma until much later, and after a many more pieces — a bear, a knife and rose, a fortune teller, the list goes on.
I finally felt like I had done something to reclaim my body autonomy, and no longer felt like just a victim of my previous traumas. I had these badges of honor that proved my body was my own. More than just a collection of surgeries.
Corey, 45, from Kensington in Melbourne, lives with cystic fibrosis and shares a similar experience to my own. Corey’s medical history includes a lung transplant and two kidney transplants. He looks at some of his tattoos, of which he has 10, as a bit of rebellion against doctors telling him what to do with his body.
“You get told when you have a chronic illness what you can and can’t do all the time,” he tells me.
“I had a friend who had got himself couple of tattoos as well. And I’m like, ‘Well, why not [me]’?”
His first tattoo was of one of his favorite Marvel superheroes, Sunfire.
“It looks like reds and yellows all mashed together now,” he says. “You know, it’s quite close to 30 years old.”
It was after his lung transplant, and doctors telling him he should no longer get tattoos because of a risk of infection, that his tattoo journey started in earnest.
“It’s definitely been able to sort of give me sort of that feeling of, well, this is what I want to do with my body,” Corey says.
“I’m not gonna let my body tell me what I have to do, or the doctors [tell] me what I have to do.
“Like everything with someone that’s got a chronic illness or a disability, I tend to sort of do things with a level of calculated risk. Something you want to do you look at it, is it really going to affect you? What are the worst consequences? How likely is that to happen?”
‘More than simple aesthetics’
I’m now 26 and I have 15 tattoos. There are some that mean more to me than others. The two I love particularly are the red flowers on both my hands.
To me, my hands have been nothing but cause for frustration. Unable to do the simplest of tasks, like doing the buttons on a shirt or holding a pen for a signature. These flowers, the most visible of all my pieces, now represent beauty to me, and help me come to terms with my limits while also understanding I am more than the things I can’t do.
I also have a few that have connections to my family — a heart for my mum, who has supported me through my medical journey, as well as a pelican to commemorate my late grandfather.
But I do believe my tattoos are more than simple aesthetics. Being able to look at them every day reminds me that it’s my body, and my choice about what goes onto it instead of the many scars and limitations that were not my choice.
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