CN: This Post includes mentions of assault, drug use, and body image issues
On May 14th, I finally managed to get my first tattoo. Ever since I was a kid, I had an obsession with drawing pictures on myself. Whenever I was able, I would get henna tattoos of various sorts. I loved the idea of wearing art on my own skin.
Growing up, my parents would appreciate the art, but still disapprove of the whole concept of tattoos. They believed them to be irresponsible, silly, and a waste of money. They made the jokes that have become a social trope, about the hilarity of aged skin and what those tattoos would look like on a senior. It’s not uncommon to hear boomers of all sorts complaining about them and about the people who get them.
Until I was diagnosed with Psoriatic Arthritis and lost major functionality in my legs, I expected to grow up to be a doctor. If not that, I at least expected to be a professional of some sort. I knew that I would be doing myself if I got a tattoo somewhere visible, and so I made myself a deal: I wouldn’t get a tattoo until I turned 25. If I still wanted it by that point, then it was something I truly wanted and could find a way to make it happen.
My plans were all disrupted by disability however. While in itself none of my disabilities are disqualifiers from being able to work in a professional capacity, the combination of all of them at once, as well as the medication I was on and a variety of additional factors meant that I had to make the decision at one point to give up on those goals and focus instead on taking care of myself and finding a way to be happy.
Because of everything I’ve been through, I have a complicated relationship with my body. In some ways, it feels sometimes like an entirely different entity that I am forced to share space with. An entity which more often than not appears hostile to me, even tries to kill me from time to time. Growing up, I was taught by society to have the way I look. To judge each fat fold, each stretch mark, each bump, as a sign of imperfection. An indication that I would never be pretty.
When I lost weight thanks to my crohn’s, there was a secret thrill in the fact that for the first time in my life I was slender: a size four – a size I had never previously fit into. Still, even my body rejected food, even as it slowly consumed itself to stay alive in the face of illness, I was still convinced that I was too fat. I looked at the bump on my stomach absolutely hating it. When prednisone made me not only gain the weight back but actually put on even more, I didn’t know how to deal with the disgust I felt for this flabby flesh prison – especially since I knew that things likely would never change.
Learning to live as a disabled person and eventually a disabled woman was a process. Having to accept that I will probably never again know what it is like to be completely pain free, assuming I ever did. Having to accept that I can’t trust it the way other people trust theirs. I can’t even know in any given moment if I will be able to do tomorrow what I am able to do today. I know that there is still possibly worse to come. That there will be a moment where all the treatments and conditions will come together to try once again to end my life, only this time as cancer.
There are still times when I find myself relating to my body as though it were a different being altogether; hating the pain it causes me, lamenting the fact that I will never physically fit the mental image I have of myself. That I will never look in the mirror and see the same me I see in my thoughts. That I will never, NOT experience that jolt of wrongness that hits me when I catch my reflection.
Learning to come to terms has been a many step process. First I had to accept the fact that I was disabled. That this wasn’t a temporary state of things. More than accept it, I had to own it – own my disability and make it a part of me and not something that stands in my way. I really came into my own when I discovered that I could write about what I go through and the various lessons it has taught me. More than that, that there were other people going through the same struggles who related to my writing. Who found solace in my words.
I had to learn that I wasn’t me diminished, I was me different, and that that difference gave me a different perspective. A needed one.
I found a purpose in fighting for justice. I found a connection to my family through it as well, feeling like the latest in a long line of those who would struggle their whole lives in the hopes of leaving behind a world that was just a little bit better, a little more welcoming and kind to those who needed it.
Finding myself again and finding my raison d’êtres isn’t enough. I also need to make peace with my body and make it feel like a part of me again.
I started off with my dermals – my cheek piercings. They were not only pretty sparklies but also a sign to myself and to the world that I was through being defined by others’ expectations. I would be me, unabashedly.
The problem with dermals, and really any piercing, is the frequency with which I get medical tests. When the time came for me to have another MRI, I would have to remove them. Because of the strangeness of my immune system, one of them already managed to fall out. Dermals are not permanent, and in a world where too much of my life is uncertain and can be taken away at any moment, that lack of permanence bothered me. I needed something to help connect me to this body, something that couldn’t be taken away.
With that my mind came flying back to tattoos.
Because of our financial situation, I would not have been able to get the one I have if someone else hadn’t generously paid for it. I have already been waiting to get one for several years, so I wanted to make sure that this one would count.
Tattoo the First:
The Rebellious Squid.
For the record, I know it is an octopus. That has more to do with the fact that I couldn’t find a version of a squid that fit the esthetic I had in mind. I did use a bobtail squid at some point, but this is close enough for my own enjoyment.
It is a reference to a series I am writing with the working title Hunting Blackbirds. In this series, people are divided into three categories that determine what rights they’re entitled to: The Children of Adam, the Children of Eve, and the Children of Lilith. In order to differentiate the different classes, the Children of Lilith are tattooed across their whole bodies, in highly individual patterns and themes. This gave rise to the derogatory term squids. In this world, disabled people, queer people, trans people, etc. are the Children of Lilith, which means I would be a squid.
Hunting Blackbirds is the first fiction novel I ever managed to write to completion. Before this, I has serious doubts about my ability to finish one. It gave me the confirmation I needed that I really am a writer. That Young, Sick and Invisible wasn’t a fluke. It was confirmation that I’m not actually lazy and incapable of completing everything.
The squid is holding a Kotwica. In the original concept I had of this tattoo, the squid wasn’t going to be holding anything, but I really wanted a Kotwica to be a part of whatever Tattoo I got. What is the Kotwica? It is a stylized anchor made up of the letters P and W.
During the Second World War, the Polish scouts started a psychological warfare campaign against the Nazis. They started by tagging the phrase “Pomścimy Wawer”, literally – we will get revenge for Wawer, the site of a massacre of something like 200 largely innocent Poles in retaliation for the murder of an Nazi officer.
Eventually the tag was shortened to PW. Eventually the meaning of PW morphed into “Polska Walcząca” meaning – fighting Poland – the slogan for Armia Krajowa – Home Army – the main and leading underground resistance movement in Poland. These are the people who organized an infiltration by 4 men of the Prison Camp at Auschwitz. These were men who got themselves arrested and sent to the camps on purpose. Then once imprisoned, they collected as much information as they could before organizing one of the only successful escapes from the Prison camp. Witold Pilecki was one of the volunteers and one of the most outspoken lobbyists in favour of organizing rescues of the camps – a goal which was deemed not important enough by the allied troups. His report provides some of the most comprehensive information about Auschwitz that we have available, especially in addition to accounts by survivors.
The Kotwica was once snuck onto the front page of several hundred copies of German Propaganda papers in Berlin, a demonstration of the length of their reach.
After the war was won and the communist occupation of Poland began, the Kotwica was banned. It continued to be use as a symbol of the resistance, this time against fascism.
I don’t know for sure if members of my family served in the resistance, but I would be extremely surprised to learn that they weren’t. One of their brothers, my grandfather’s brother, was a prisoner in Auschwitz. The story as it was relayed to me was that the Germans were forcefully conscripting men of an age to be soldiers. The brothers who were old enough to be forced to fight hid away, refusing to fight for the enemy. One of them was found, and given a choice: the camps, or the army. He chose the camps.
It is true that political prisoners were treated somewhat better than those for whom the most hatred was reserved: the Jewish people, the Romani, the Disabled, and Homosexuals. Polish people however, were also special favorites of the Nazis, since Germans blamed especially Silesian Poles for the loss of Silesia after the First World War. The plot thickens when you realize that his father, my great-grandfather Ignacy Bulla (Buła)[i] is widely credited for having helped inspire the revolution that lead to Silesia being part of Poland with the pamphlets he published and distributed, speaking of the deep root of Polish identity in Silesia. He is considered a Silesian hero. And his son was now a political prisoner in a camp known for its cruelty and torture at the hands of people trying to restore Germany’s honour after their loss of Poland. And he somehow survived the camps.
With one of their own family in the camps, with their father being who he was, I can’t imagine that there wasn’t at least one brother, or sister, or mother, who was in the resistance. Unfortunately, those who could answer the question have passed, and the AK was too dangerous to talk about when my father was around to ask questions.
With everything that has been going on in the world, it feels more important than ever to make our opposition to ideologies of hate and authoritarianism clear. We have seen a rise not just in people who are willing to outwardly identify as neo-nazis and white supremacists, but also alarmingly in the willingness of people to excuse their behavior.
I am a child of resistance, it runs in my blood, and with this symbol it is now seared into my flesh as well. I am branded – Polka Walcząca.
The placement itself is significant. While it appears to just be my lower back, the tattoo is right over my SI Joint – the inflammation of which was my first major diagnosis and my first obvious push into disability. It’s what made me a squid.
The placement of the tattoo in this place actually ended up proving to serve another purpose. Because of something that happened during the tattoo process, I can now know exactly where to ask someone to massage in the event of back pain.
I chose this as my first tattoo in case I could never get another. This at least would connect several parts of me into one unified whole, painted in bright colours across my skin.
The size and location of this tattoo makes it clear that I could easily handle getting more. Once again, my experiences with chronic pain are such that I have a high tolerance for pain. The biggest barrier is the uncertainty of our finances. I couldn’t justify even this to myself, without having had the help specifically donated for this purpose, in this case even paid for directly. It felt too extravagant when we worry just about being able to buy groceries or finishing to pay our bills. (Our fundraiser if you wanted to help ease the burden).
There are other ideas that I would like to pursue:
A symbol of the complicated relationship I have had with painkillers. At first being given painkillers instead of a diagnosis, then later denied pain killers despite a diagnosis because of the presumption of addition. I hate how I feel on opiates: my nausea gets worse, my head isn’t on straight. But sometimes my pain is too strong to be controlled by medical marijuana or other means. There are not a lot of meds that I can safely take, or that are available in forms other than oral when my digestion is uncertain at best. At those times, I need to be able to safely access them, without shame, without being put through more stress than I am already under.
My whole relationship with medication is complicated. The meds that treat my crohn’s and other autoimmunes are also immunosuppressants. They put me at risk of catching every little irritating cold that is going around, and leave me exposed to more serious ailments that are popping up as people choose pseudoscience over medicine by avoiding vaccines. They put me at an elevated risk for lymphoma. Prednisone stops flares in their tracks, but also makes me gain weight and lose bone density, making my arthritic symptoms worse and accelerating my eventual need for joint replacement. It also elevated my risk for various cancers.
They’re necessary sacrifices to make. It is the way medicine works, not because of some insidious conspiracy the way anti-pharma people would have you believe but because of the delicate balance all of our bodies play every day. Too much of anything causes problems, just as much as too little of anything does; Dehydration is dangerous as is over-hydration, we need sun for vitamin D but too much puts us at risk for sun damage and cancer. When you add disease and treatment into the mix, the same balance takes place. To achieve the results required to cure or treat symptom A, upsets the homeostasis of system b, the right balance is highly individual and can be impossible to perfect absolutely.
Why the poppy to represent all that? I like the aesthetic for one. I like the mix of red and blacks, both of which look stunning on me. I like the subtlety. The poppy have many meanings, including remembrance. We wear the poppy to celebrate Armistice Day/ Remembrance Day. In the same way this is a reminder of the blood I’ve spilt to get better. The struggle it was to get my diagnosis, and the war I fought with my body, with doctors, with bureaucratic systems, and so forth.
Quill of Blackbirds.
What I want is a stylized feather quill which dissolves into seven blackbirds.
Writing brought me freedom. I was always an obsessive fan of books, particularly fiction. I used to absorb them almost like oxygen. Sometimes, when I would run out of books to read or reread, I started coming up with my own stories.
I can’t count the number of books I started writing, from a very early age. When I started the blog, or more realistically, when I started writing regularly on the blog, it felt like I found myself. It felt right. Being able to write out my thoughts, to explain things was not even about helping others understand but a way to reinforce my own learning, examine my own prejudices, and make connections that I didn’t see when all the information was confined in my head.
Writing this blog is what helped me come to terms with the fact that I’m disabled. It gave me a voice that I was yearning for. It gave me a community; a family.
Why seven blackbirds? The flight of the birds is symbolic of the freedom I found in writing, the way it helped me soar above my own anxieties and self-doubts (though both are still present in spades, as is imposter syndrome). The reason there are seven is a reference to an old folk poem about blackbirds. There are many versions that exist but this is the one I know:
One for Sorrow
Two for Mirth
Three for a Wedding
Four for a Birth
Five for Silver
Six for Gold
Seven for a Secret, never to be told.
So much of my most liberating and more recognized writing involved telling secrets we are taught never to talk about. We’re not supposed to talk about our own weakness. We’re not supposed to talk about religion or politics. We’re not supposed to talk about bathroom issues. We’re not supposed to talk about mental health. We’re not supposed to let anyone see the embarrassing things. Radical Vulnerability however has been an act of revolution for me. I still get messages or emails from time to time, from people who found something I wrote and felt overwhelmed because for the first time they felt like they weren’t alone. That someone out there understands what all this is like.
Breaking the chain of silence is what helps us break the shame that is attached to things that shouldn’t be shameful. I shouldn’t be ashamed of having been assaulted, none of it was my fault. I shouldn’t be ashamed of being disabled, it is just a fact of my life. I shouldn’t be ashamed of being who I am, and the way I show that is by speaking openly about all these things.
I was punished, socially and otherwise, for telling. I remember the many people who told me I shouldn’t talk about these things, to think about my reputation, about my family’s reputation. I was and am shamed for sharing details of my life, and people do try to use some of it against me. But none of that compares to the benefit I have found in doing so. None of it compares to the feeling of having a voice and having it heard.
Seven for a secret never to be told, and the freedom I found in telling it.
I have other ideas. My Pinterest is filled with stunning designs that fill me with ideas, but these three are the starters. These three are part of the process in making peace, with my body, with my history, and with myself.
[i] My original family name was Bulla. Great Grandpa changed it to Buła in celebration of Silesia’s joining with Poland, in an effort to make it more Polish. My grandfather changed it back but the Communists wouldn’t let him go back to Bulla because it was too Polish and so instead he could only have one l.