When it's time to rewrite the story

A twenty-year tale

Nearly twenty years ago, I found a strange mark on my arm

Red and raised, it made a circle near my right elbow. As I was living in Maine that year, a course of revolting antibiotics followed, which caused a lot of vomiting but no improvement.

Over the course of the next months to a year — the exact amount of time is no longer clear — I tried to find out what was wrong. Opinions varied, but none of the doctors who saw me thought it was life-threatening once Lyme was ruled out.

Eventually, I saw a dermatologist who gave the condition a name:

Granuloma annulare. Latin, essentially, for ‘red bumpy rash.’

The amount of space this took up in my 27-year-old head was massive, especially as the bumps spread. I met with multiple doctors, none of whom could tell me why I had it or how it was likely to progress.

Everyone agreed on one thing: it won’t go on your face.

However, no one said it wouldn’t end up everywhere else. As a single woman, I was willing to try anything to eradicate what the literature helpfully described as “resembling leprosy in appearance.”

The treatments I attempted ranged from steroid pills and creams, to dancing around naked in a UV light booth a few minutes at a time several sessions a week¹, to a rheumatoid arthritis drug I had to sit on an IV drip for alongside chemotherapy patients. Even as I berated myself for the vanity that had me receiving medication to make my skin clear again next to those fighting for their lives, I didn’t give up.

I took to wearing long sleeves and pants or long skirts in all weather rather than answer questions about whether I’d burned myself when someone spotted a red patch.

At an age when women are most praised for how they looked, all I wanted was to look unremarkable.

The hunt for a solution extended into my thirties, after the heartbreak of the drip drug causing the condition to disappear and then return even worse than before once the drug stopped. Staying on it wasn’t an option; the side effects were worse than the original skin condition.

I held on to the hope that it would just go away — in some cases, it did. But those happened before the five year line. Once past that point, it tended to stay for good.

Throughout this time, I wavered between levels of anger and grief. I recognized that I was an able-bodied, otherwise healthy woman. But under that awareness lurked a fear that no one would ever love me with this condition. Even if I was attractive with clothes on, who would want to be with a leper?

This fear dissipated and then swirled back, much like depression and anxiety have floated in and out since I was a teenager. I’d be fine for months and then end up weeping against the lockers in the Hollywood Y, having found a new spot after a ballet class I took for years with a friend.

It won’t go on the face. But where will it stop?

How can I remain in charge of myself?

I recently finished Rebecca Solnit’s Recollections of My Non-Existence², and as with everything else she’s written, her writing encapsulates my innermost thoughts without our ever having met or spoken.

Reading this passage hit me deep as the most accurate summary of my feelings in my late twenties and early thirties:

One of the struggles I was engaged in when I was young was about whether the territory of my own body was under my own jurisdiction or somebody else’s, anybody else’s, whether I controlled its borders, whether it would be subject to hostile invasions, whether I was in charge of myself.

-Rebecca Solnit, “Disappearing Acts”

To be a woman in early adulthood is to struggle with an equal and opposite fear of being ignored by the people you want to notice you and noticed by the people you wish would ignore you.

As every woman has, I’ve dealt with unwanted attention in public spaces that has only barely waned in my mid-forties. Just last week in the U-Bahn, full to a level of crowded I rarely experience these days, I felt something press against my ass with the slight curve and solidity of a backpack. I shifted away from it immediately.

When we reached the next station and people cleared out to let more in, I turned to confirm my theory. Instead, I saw a man facing me, also holding the pole in the standing area, not meeting my eye. While I cannot confirm he took advantage of the packed car to shove up against me, the revulsion I felt was indication enough that something was off.

We learn to expect these encounters, as women. It’s not whether or not these things will happen, it’s how bad they get.

Having that red ring appear on my arm felt like a target for attention and questions about my body I didn’t want to receive. So I hid it. For years.

The barrier between ourselves and the world

Dating was, as you can imagine, fraught. I worried that men would be disgusted by my appearance. This led to my staying with people longer than I might otherwise have, simply because they didn’t object to the bumpy red areas that covered much of my inner arms and the backs of my thighs, all the way down to my calves and across the tops of my feet.

There were periods where I chose not to date at all, partly due to lack of interest, but just as much because I didn’t want to explain my skin to yet another person, especially one I might never meet again after a few dates.

For some reason, the image of of a high-necked, long-sleeved wedding dress, should I ever meet someone I wanted to marry, left me feeling claustrophobic and miserable. I send love to my younger self when I recall these moments, because she was of an age when any other aging and physical change was inconceivable. The obsession was with fixing this one problem so I could finally “look right.”

I didn’t see the trap then, that looking right never happens.

I lived in Los Angeles for the twelve years my skin was the most distressing to me, a city that was possibly the most unhelpful one I could have chosen. Given the concentration of blindingly attractive people, all hoping to get their name in lights, there was an endless parade of “perfection” for me to compare myself to.

What makes me the saddest about this time is that it never occurred to me to question the narrative that how I looked was a significant marker of my value as a person. Perhaps the only gift Los Angeles gave in this case was that men were equally self-conscious about their appearance, even if the power they exert over women was anything but balanced.

When the story changed

A few days after I turned 41, we moved to Berlin. I met my husband in LA, who barely noticed my skin despite being a visual artist. However, I don’t mention him to make this a happily-ever-after story where the man rescued me from my dermatology tower.

I bring him up because he got a tattoo before we moved away from LA.

It was not his first, and I enjoyed watching the process while he considered the idea, found an artist, and headed off to the appointment, coming home with his forearm wrapped in saran hours later. He’d combined two things he loves: Moby Dick and cycling in the mountains, resulting in a whale that looks like it came from an engraved novel illustration with a mountain range behind it. He returned to the artist later and completed the piece, wrapping his arm in ink.

I was envious of the experience of choosing what was on your skin, instead of just waiting for another patch to appear. I wanted a tattoo for myself.

I’d gotten my first tattoo when I was 18, on my lower back (of course) in a motif favored by that time and place. Before getting it done, I put on a one-piece bathing suit and drew along its edge with pen, directing the artist to keep the whole tattoo below the line. I wanted a tattoo, but I wanted showing it to be optional.

After B got his arm done, I revived an idea I’d thought would be gorgeous: an illustration of Venus’s orbit in relation to the earth³, as seen in an old astronomy textbook:

Rose of Venus, from James Ferguson’s book Astronomy Explained Upon Sir Isaac Newton’s Principles, 1799.

This image had haunted me, not just its swirling shape, but the idea that this image was a product of changing the fulcrum. Instead of the sun at the center, this was Venus moving in relation to the Earth. I wanted to change my experience of looking at my skin, of living in it as well. I wanted to stand in the center.

Perhaps if I made a choice about what I saw when I looked at it, I could feel more myself. This felt like a way to start.

After confirming with a dermatologist that there was no discernible link between tattoos and granuloma spreading, I asked my husband’s tattoo artist if he’d do this design for me.⁴ We simplified the design a bit and made a date.

It was 2017. I had recently turned 40, and was ready to mark the occasion, quite literally, with this piece. We kept the Fig 1 just above the image, because I wanted to keep the feeling of it living inside a book.

As photographed by Danielle Cohen in Berlin in 2019. Yes, my skin has been retouched. :)

Five years later, my skin issue remains.

It fades and flares up, and I now have odd new patches on the insides of my wrists. My feet have beet-colored splotches across them, and the backs of my legs remain my most-insecure spot. Not that most of us need any help feeling self-conscious all over our bodies as women, when young or now, in middle age.

But what has changed is my desire to tell a different story when I look at my skin. I don’t want to see a failure of medicine to stop a condition that no one seems very motivated to research. After all, there are far more urgent issues that need solving. I would never put my patches higher on the priority list than cancer and diseases that steal life.

Given that I’m watching what gravity has in store for my skin, at 45, I decided there needed to be another chapter of choice.

I’d followed tattoo artists for years online, even finding a few whose work I would have gotten done, only to be heartbroken by their popularity making appointments as unlikely as a lottery win.

I keep watching and eventually found the artist I wanted. She was edging toward the level of impossibility I’d faced before, but this time I was truly invested. Thanks to tips from friends, I set alerts so every time she posted, my watched pinged me. I commented on all her work and what I loved about it for months, until she opened her books in March 2023.

On a train with friends back from Hamburg, I wrote an impassioned email detailing the piece I wanted to create with her, should I get an appointment. I scheduled the email to hit her inbox at 1am during the 24 hours her books were open, and held my breath.

A few weeks later, I got a yes. And a date: April 15, 2024. The fact that she books out a whole year of work within 24 hours makes me happier than I can say.

For anyone who has ever believed that there is no job security in the arts, I give you Dzo Lama, now booked until 2025.

Shedding like a snake

This past week, at last, we went to Poland, where my artist is based. I stuffed myself with gluten-free pierogies and vegan gf dumplings with mushroom sauce, and spent two days getting tattooed, while B wandered museums and bookshops.

Did it hurt? You bet your ass it hurt.

Anyone who has color in their tattoos and says it didn’t hurt is lying. If they stuck to black and white and it only took an hour or so, “Not as bad as I expected” is possible, but suspect.

No matter how gentle the artist, if you go for hours and hours, eventually the adrenaline is gone and you’re stuck with just the reason you decided to get the tattoo in the first place.

After twenty years of a story that my skin condition looked like leprosy, I was ready to see an arm covered in beautiful art. We made a piece that includes a Hooded Crow, my favorite bird — native to Berlin and Europe; a group of chanterelles, which grace seasonal menus throughout Germany; gorgeous tansy, which repels insects and has been used for numerous medicinal treatments, despite being quite toxic in large quantities. I’d long admired her raspberries, so we added a cluster with a trail over one shoulder and finally a moth on the front of my shoulder. And we ended with ferns, which I saw everywhere in Maine, when this story first began.

It’s now been five days and my arm is not fit for public viewing. I wash my snakeskin, as I’ve been calling it, gently twice a day and watch the shedding proceed. Due to the presence of the moth, I have taken to muttering to myself, “It puts the lotion on its skin, or else it gets the hose again.” It makes me laugh every time.

First, the top will flake off, leaving a cloudy layer of skin below. When the original piece emerges, and I’ll have my arm back. This takes a few weeks to a month or more. I’m glad it’s not instant, since the idea of emerging into a new skin on the other side feels earned this way.

While I know not everyone wants or understands the desire to get a tattoo, especially one this big, (hi Dad! Hope you’re not hyperventilating), I share this story to show one way making choices can allow us to tell new stories about ourselves. This is the choice that felt most empowering to me.

As a writer, I create arcs of transformation for characters all the time. After decades of hiding myself, I’m using that ability to start a new story of my own.

Thank you for witnessing its beginning.

In addition, I want to acknowledge that there is so much wrapped up in appearance and the choices we can make and those we can’t. So many people are treated unfairly based on their appearance every single day. I don’t experience that unfairness directly, which is in itself part of the injustice.

We all have such sensitivity about our own appearance. If we could extend the same respect and kindness to all humans, regardless of their race, ethnicity, age, background, sexual orientation, gender, class, and so many other ways we look different than each other, the world would be so much safer for all of us.

I’m choosing to start with me, while hoping to do better in how I interact with everyone else, too.

1. This treatment was conducted at USC’s hospital. I have found that university hospitals are more curious and willing to try things to help, whereas a lot of private hospitals shrugged and said “Not sure what we can do with that,” before hitting me with their full bill. If you have something weird, get thee to a research hospital.

2. If you do nothing else after reading this, please read this book. In fact, read all of her books. But here is a link to this one: http://rebeccasolnit.net/book/recollections-of-my-nonexistence/

3. Further explained here: https://briankoberlein.com/post/rose-of-venus/

4. After we finished the tattoo, several hours of circling round and round the same point, he asked me never to tell anyone he had done this piece. Not because he wasn’t proud of it, but because keeping the circles consistent was so hard he never wanted to do another one like it. I’m still grateful he made this one happen.