The one thing about change is that you rarely see it coming.

 

—

 

Most of the time, it’s already here.

 

First Beat – Sixteen Years Old

When I found the first patch – just behind my right ear, concealed by the hair that would be there for a while yet – I didn’t know what it was.

That’s not an outright lie, but it is twisting the truth a little bit.

A more accurate thing to say would be: I didn’t want to know what it was. The moment that my fingers found that bright, empty spot of scalp and I locked eyes with myself in the mirror, something in my head slammed down the hatches and turned off the lights. It outright refused to correctly process what it’d just seen for me, so right then, with my hair brush set on the end of my bed and my hands in my hair where I’d pulled it back to get a closer look, I didn’t think any more of it. It was like I’d turned up somewhere, only to find a BE BACK LATER sign on the door. I walked away without registering that the building was burning down, and with my headphones in, I didn’t hear the sirens. As it was, I put my hair up, went out, and didn’t think about it until several weeks after, when I thought to ask my mother about it.

That was when the moment of change came.

And the whole thing gets a bit weirder when you think about how my mother’s hair fell out almost a year before mine did. Maybe I didn’t panic that morning because I’d used up all of my hair-worry for her. Worry was all my family did when it was happening, and we didn’t know what it was, asking each other the same questions in hushed voices. What’s happening? It’s not cancer, is it? No, that’s just with chemo. You don’t have chemo without cancer. But what if it is? And so on, as her immune system fought its own reflection, furiously cleansing itself until all her hair was gone. Eventually, all we got from the doctor was a diagnosis: Alopecia Areata – named so because hair loss appears in circles to varying degrees. She was offered a range of immensely tempting treatments such as steroid shots directly to the scalp with a slim chance of them actually doing anything, or UV light treatment, which raises your chances of skin cancer by about fifty percent. Strangely enough, she decided against it (For the record, so did I).  Everything she’d been through and all that she’d endured over those short months while her hair fell out was probably the first thing that came to her mind when I turned to her that morning before school and said, “Oh yeah, mum! I found this weird birthmark behind my ear…”

It’s probably why she couldn’t let me finish. Turns out that she’d noticed the missing patch of hair behind my ear long before I had, and was waiting for the moment that couldn’t be avoided. Maybe she was trying to give me what happy and uncomplicated times I had left before everything changed.

I was still speaking when she tore the plaster away from my skin before I asked for it off.

“It’s alopecia. You’ve got it too.”

—

I think there’s a difference between knowing a change instantly, and realising it was there all along. My change wasn’t as sudden as the world falling away, or waking up one morning to find that I was blind, or encountering that proverbial bus that everyone agrees we might be hit by tomorrow. It was a slow drawn conclusion made up of blurred lines and the colour grey. Grey in the shadows that were never there before and that I would come to consider, over and over. I worried about every corner, every gust of wind. When the shadows didn’t come, I would make them. In the nine months that followed, I didn’t lose it all. It was too slow for that. Like my mother answering me before I’d finished asking, I started tearing my hair out at the roots so that it couldn’t leave me first. Only the strands that were still attached to my skin hurt. The ones already on their way out would just pop free of their follicles. It was all a bit fruitless. I was just slamming the door by the time they were half way out of it.

There’s not an awful lot that I wish I could forget. But that feeling of my hair coming out by the fistful?

Even as I write this, six years on, it’s difficult to recount that period of my life, the one of complete denial and self destruction. But if I put it to the question of the butterfly effect, then things become a little easier. The butterfly effect is the notion that even the simplest, smallest changes have the power to rewrite our destinies, and so I’m wondering: what if the slightest thing had been different? What if I could forget that feeling of the hair coming loose, the worrying I did on windy days, or even the moment that I found the first patch? What would be different now? How different would I be?

Would I still even be here?

(This notion has been largely touch and go for the past few years.)

All I know is that my butterfly effect found its beginnings as I shredded grey wings in a dark place, and waited for it all to end.

“Oh,” I said to my mother that morning.

“Oh.”

 

Second Beat – Being Sixteen and Seventeen

I didn’t deal with it the way that you might expect for a sixteen year old girl who had just been told that her hair was likely to fall out completely. In fact, I don’t think anyone really expected me to do what I did.

I told everyone.

All my family, friends, their friends, teachers — with every vague connection, I told someone new that my hair was falling out. It’s embarrassing to admit why, even though it worked in my favour in the long run, but I did it for the attention. I had spent the majority of my early teens either being bullied or ignored entirely, and finally I had something I could declare as a problem unique to me. Finally feeling respected and even admired at long last, I soaked up the expressions of shock, sympathy and admiration, and felt great. People were paying me some attention that didn’t include throwing things at the back of my head or telling me to go away. And so I kept at it for as long as I could, enjoying this new life of being the host of the grand ball that was Nicola’s Pity Party. Everyone was invited.

However, it was all well and good until my mother suggested one morning that maybe I shouldn’t be wearing my hair up like that.

“What, why?”

“People can see that patch,” said my mother, herding my sisters and me out the front door. “I’m not saying you have to, but just so you know.”

That was another moment of realising that a change had been in the works for a good while before it came to light. I don’t know what it was about the fact that people might see the patch of missing hair when I’d quite happily shown anyone who asked during the Aren’t I Brave act, but maybe it was the thought of not being in control of what people thought about it anymore that changed things. When people walked by me in the corridors and stared a little too long, I wouldn’t be able to pull each and every one of them aside to tell them exactly what it was, along with my life story up until that point. From that moment on, I was convinced that everyone was looking and deciding that I was just a freak.  Maybe they were thinking that the disease I had was probably my own fault and that it might be contagious, like some kind of awful nits.

That was the last morning I wore my hair up. By the time we’d arrived at school, I’d already let it down, and after being registered during form time I cried for a solid ten minutes in an empty bathroom. In metaphorical terms, I’d torn the first set of wings off the many dying butterflies I was to encounter over the next nine months.

I withdrew completely.

Crying in the middle of period two turned into walking out of school in the middle of the day because I couldn’t cope with being around people. The badge of honour I once wore so proudly now turned into hats that I clung onto desperately every time there was a strong wind, and I had to produce a medical note for every time a teacher told me to take them off. Four months in and I started to pull my hair out. I’d do it obsessively, running my hands through it and checking my fingers to see how much had come loose. I’m a busty person, so my chest caught most of what my hands didn’t get.  My bosom would be itchy all the time with phantom strands of hair, and I pawed at myself so often I made my skin sore. Despite all of this conscious and sustained self-destruction, I was in a period of severe denial. It wasn’t happening. It wasn’t nearly as bad as my parents seemed to think it was. I was in control. It was all right.

So you can imagine what state I was in when I finally relented and let my parents buy a wig.

Mum had gone there when she’d started wearing hers. Lovely quality, lovely staff. Private booths, so you could whip them on and off at your whim. I didn’t even get into the shop before a panic attack came, and I had to be held outside of it by my boyfriend at the time, as I sobbed into his shoulder, the crowd awkwardly picking their way around us as my parents looked on helplessly. Once finally inside, I let the staff help me with the first one that looked even vaguely like something I could live with, and was out again like a shot.

I left the bloody thing in its box for another two months and pretended that it wasn’t there. The circles of denial and destruction continued, like the way the circles of bare scalp on my head got wider and wider. The windy days became full on  tornadoes, and storm clouds began gathering in the school corridors as people started to notice that I didn’t have much hair underneath my hats.

I’m aware that buckling under pressure from other people is a very obvious theme here, but I won’t lie about what changed my mind and when. The final straw came when one of the lower year boys – a bit notorious for being loud and obnoxious – spun around with his finger outstretched like a divining rod looking for a source, and laughed in my face. I went home in floods of tears, and the next day I wasn’t wearing a hat anymore. In fact, I seemed to have grown a full head of hair overnight. The compliments, assurances and praise poured in from every angle, but my hair was plastic and nothing I had once trusted felt even halfway real anymore.

I hated it.

 

Third Beat – Being Seventeen and Twenty-Something

If I’m being honest, a large part of my life has been spent waiting for something else. Like a butterfly on a rock sunning its wings to prepare for flight, I’ve always been waiting for the day that I’m a little thinner, a lot more popular, and so on: in short, the day that I’m happy. So as I settled into the four-year wait for any hair to grow back, I got to work planning exactly what I was going to do with it. I imagined a buzz undercut, and something in blue. I’d get it professionally done somewhere fancy, and everything would have been worth it. It would be the perfect ugly caterpillar to beautiful butterfly metaphor, right? Enduring all those windy days only to burst from my cocoon and snap my wings out to catch the breeze. Yeah, perfect.

But it’s never the destination, is it? The magic is always in the journey you take for it.

In the time I spent growing from an unhappy bald teenager to a sort-of-okay bald woman, I learned how to be at peace with myself. While I’d never been the type to invest too much in my looks anyway, you really don’t know what you’ve got till it’s gone. I invested my energy in my present, cultivating passions and talents like a well-tended garden. If you didn’t like the kind of flowers I was growing, then you could take a hike. In my efforts to reform my shattered sense of self, I sank my fingers into everything that was important to me and poured all of myself into those things, until the things I did became indistinguishable from my personality. I love writing. I love gaming. Both are what people would say if asked to name something associated with me on the spot. I won’t hesitate to get up on my soapbox about anything I love, because if you’re questioning them I’ll take it personally. So as my selfhood turned to liquid and then began to take shape again, I got used to my reflection and the idea that this was my lot. Being used to something and being happy with it are two different things, but I’ll always take what I can get. Even if my immune system was trying to fight me, I was no longer interested in fighting with myself. Life is too short, I said to myself one day when I’d spent hours staring at the walls again. Go outside. Jesus.

Still. I was pretty devastated when on my first day of uni I found another patch of scalp behind my ear.

My mind tried to pull the same stunt as it had the first time. Batten down the hatches, pretend it wasn’t there, and wait until it got too much before doing something about it. But this time, I didn’t. I stepped outside and faced the blinding light, even though it hurt to look. At this point I’d stopped wearing the wigs, but had a beanie hat to cover the last stubborn patches. The missing eyebrow was a bit of an issue, but I couldn’t be bothered with drawing it on each day just so that people would stop asking if I’d been that drunk.

And even though I knew how this was going to go, I still clung on to the hope that it might stop any day now. It wasn’t the same kind of denial, though; I even bleached the ever-loving Christ out of the remaining hair and dyed it blue, knowing it wasn’t sticking around for long. Not what I’d had in mind for the past four years, but it made me happy anyway. Like the first time, the whole process was so agonisingly drawn out that it wasn’t until mid-second year that I finally caved and got another wig. Human hair, this time. The concept was a little spooky, but it looked so good that I got over it pretty quickly. The shape was a bit strange but I’ve brushed and washed it into submission. It has its good days and bad days, like real hair, but most of the time it’ll do. It gets by, like me.

Living by the water as I do, things get windy. It’s like facing full gales just to get to class. But I resolutely hang on to my hair and know that things will be a little quieter on the other side. Sometimes I’ve got taller friends with me to tuck myself into so the wind doesn’t carry my wig away. One thing I know, though, is that getting there is well worth putting my head down, one foot in front of the other, and going on. I can even laugh about it now, and I do often. Laughing is better than crying. So when you do catch me cracking a joke about it, please join in. You know that I need it and in doing so, I’m keeping my head above water.

My kind of change was never instant. It was always there, constantly working. Butterfly effect is happening all the time, changing everything we decide on, the places we go and the conclusions we reach. And the one that I found long ago is that, at the end of the day, it’s only hair.

Not air.