When I was 12, I sat in a doctor’s office with a doctor I had never met before.
The doctor asked, “What would you like us to do if you need a breathing tube after this surgery?”
It was a tough question, and it terrified me. But it wasn’t my first experience of surgery — even when I was 12, I was a veteran.
I had already had more spinal and brain surgeries than I could count, due to an early diagnosis of: spina bifida, a neural tube defect that prevented my spinal cord from developing properly. It put pressure on my brain and spine that would cause weakness in my extremities, headaches, back pain and fine motor problems.
By the time I was 18, I’d had a few more surgeries related to my initial diagnosis, and an unrelated gallbladder removal that interrupted my senior year of high school.
I felt like my body was no longer mine – riddled with scars and imperfections.
Around this time, 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 fell in love instantly. The parlor was covered wall to wall with artwork of traditional style American tattoo designs. About six performers sat bent over customers, the buzz of their tattoo guns almost deafening. I remember thinking the ink smelled like caramel, and there was a friendly, easygoing banter between the customers and the performers. It was incredible and I immediately wanted a tattoo of my own.
I soon took the plunge. I was only 18 and my mother was skeptical, but I think she saw the value of this first permanent change in my body before I did.
“You’ve had so many surgeries that you didn’t want to; I’m not going to stop you from making this choice,” she told me.
The tattoo is a black and red mandala on my inner biceps. I looked at hundreds of mandala photos before deciding on the kind of design I wanted. At the time, the tattoo personally had little sentimental meaning, but I liked the idea of the mandala. Something that in some cultures would be hours worked on in the sand, only to be swept away in the blink of an eye. I recognized the irony, and that mine would be permanent.
I can remember sitting in front of it, and the anticipation of the pain. This is where my history came in handy, because of my previous surgeries I have very little feeling in my arms. All I felt when the tattoo artist started was a light sting. When it was over, I took a long look in the mirror and admired this new addition to my body.
Reclaiming my body’s autonomy
I wasn’t done with year 12 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 toughness, of strength.
I didn’t immediately make the connection between tattoos and my trauma until much later, and after many more pieces – a bear, a knife and a rose, a fortune teller, and so on.
I finally felt like I had done something to regain my body’s autonomy, and no longer felt just a victim of my previous traumas. I had these badges that proved my body was mine. More than just a collection of operations.
Corey, 45, from Kensington in Melbourne, lives with cystic fibrosis and shares a similar experience to mine. Corey’s medical history includes a lung transplant and two kidney transplants. He considers some of his tattoos, of which he has 10, to be a bit of rebellion against doctors telling him what to do with his body.
“When you have a chronic illness, you are always told what you can and cannot do,” he tells me.
“I had a friend who also had a few tattoos done. And I thought, ‘Well, why not?’ [me]†
His first tattoo was of one of his favorite Marvel superheroes, Sunfire.
“It looks like red and yellow are all mashed together now,” he says. “You know, it’s almost 30 years old.”
It was after his lung transplant, and doctors telling him not to get any more tattoos due to a risk of infection, his tattoo journey began in earnest.
“It’s definitely made me feel like, well, this is what I want to do with my body,” Corey says.
“I don’t let my body tell me what to do, or the doctors.” [tell] me what to do.
“Like anything with someone with a chronic illness or disability, I tend to do things with a calculated risk. Something you want to do, look at it, is it really going to affect you? What are the worst consequences? How big is the any chance of that happening?”
‘More than simple aesthetics’
I am now 26 and have 15 tattoos. There are some that mean more to me than others. The two I especially love are the red flowers on both my hands.
To me, my hands were nothing but a source of frustration. Unable to do the simplest of tasks such as buttoning a shirt or holding a pen for an autograph. These flowers, the most visible of all my pieces, now represent beauty to me and help me accept my limits, while also 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, as well as a pelican to commemorate my late grandfather.
But I do believe that my tattoos are more than simple aesthetics. The fact that I can look at it every day reminds me that it is my body, and my choice about what comes on it rather than the many scars and limitations that were not my choice.
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