When I was 12, I found myself sitting in a consulting room in front of a doctor I had never met before.
The doctor asked, “What would you like us to do if you end up on a breathing tube after this operation?”
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 had already had more spine and brain surgeries than I could count, due to an early diagnosis of spina bifida, a neural tube defect that meant my spinal cord was not developing properly. This caused pressure on my brain and spine which would cause weakness in my limbs, headaches, back problems and fine motor problems.
By the time I was 18, I had had a few more surgeries related to my original diagnosis and an unrelated gallbladder removal that interrupted my senior year of high school.
I felt like my body no longer belonged to me, littered with scars and blemishes.
Discover the tattoos
It was around this time that my sister got her first tattoo: a snake on her calf. She was around 24 and I was so curious about the process that I went with her.
Once inside, I immediately fell in love. The living room was covered wall to wall with artwork of traditional American style tattoo designs. About six artists were bent over clients and the hum of their tattoo guns was almost deafening. I remember thinking that the ink smelled of caramel and that there was a friendly, easy banter between customers and artists. It was amazing, and I immediately wanted a tattoo of my own.
I quickly took the leap. I was only 18 and mom 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 from making that choice,” she told me.
The tattoo is a black and red mandala on my inner bicep. I looked at hundreds of images of mandalas before deciding on the type 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 for hours in the sand, only to be wiped away in an instant. I recognized the irony, and that mine would be permanent.
I remember sitting down for this and anticipating the pain. This is where my story came in handy, due to my previous surgeries I have very little feeling in my arms. All I felt when the tattoo artist started was a slight sting. When it was over, I took a long look at myself in the mirror, admiring this new addition to my body.
Regain my bodily autonomy
I hadn’t finished my 12th grade yet and I remember proudly parading my first tattoo at school. A teacher even asked if it was real. It gave me a feeling of tenacity, of strength.
I didn’t immediately connect the tattoos to my trauma until much later, and after many more pieces – a bear, a knife and a rose, a fortune teller, the list goes on.
I finally had the impression of having done something to regain my bodily autonomy, and of no longer feeling like a simple victim of my previous traumas. I had these badges of honor that proved my body was mine. More than just a collection of surgeries.
Corey, 45, from Kensington in Melbourne, lives with CF and shares a similar experience to mine. Corey’s medical history includes one 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’re told all the time when you have a chronic illness what you can and can’t do,” he tells me.
“I had a friend who also got a tattoo. And I was like, ‘Well, why not [me]’?”
Her first tattoo was of one of her favorite Marvel superheroes, Sunfire.
“It looks like the reds and yellows are all mixed together now,” he says. “You know, it’s pretty close to 30.”
It was after his lung transplant and doctors telling him he shouldn’t get a tattoo again due to risk of infection that his tattoo journey began in earnest.
“It’s definitely been able to kind of give me that feeling of, well, this is what I want to do with my body,” Corey said.
“I won’t let my body tell me what to do, nor the doctors [tell] me what I should do.
“As with anything with someone who has a chronic illness or disability, I tend to do things with a calculated level of risk. Something you want to do, look at it, is it really ok with you affect? What are the worst consequences? How likely is it to happen?”
“More than just aesthetics”
I am now 26 and have 15 tattoos. Some are more important to me than others. The two that I particularly like are the red flowers on both of my hands.
For me, my hands have only been a source of frustration. Unable to do the simplest tasks, like buttoning 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 accept my limitations while understanding that I am more than the things I cannot do.
I also have a few that have ties to my family – a heart for my mother, who supported me throughout my medical journey, and a pelican to commemorate my late grandfather.
But I believe my tattoos are more than just aesthetics. Being able to look at them every day reminds me that it’s my body and my choice of what happens in it instead of the many scars and limitations that weren’t my choice.
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