Living with alopecia: Lessons in courage

Girls open up about life with hair loss

AIMIE CRONIN
Last updated 11:26 14/12/2013
alopecia
MARK TAYLOR/Fairfax NZ

Same but different: Twins Leah, left, and Kelly regard the lack of hair in different ways.

	 alopecia
MARK TAYLOR/Fairfax NZ
Kelly Porima and Hilary Collins, then: Lots has changed from two years ago, when Kelly was 13 and had just lost all her hair.

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The Waikato Times first met Kelly Porima and Hilary Collins in 2011. Kelly was 13 and had not long been diagnosed with alopecia. Hilary was the one person she knew with the same condition and the pair formed a friendship that continues today. It's been a tough two years. In October last year, Kelly's twin, Leah, developed alopecia as well. Aimie Cronin reports on three brave women. 

KELLY

Everyone knows she has alopecia, and if people don't, she doesn't mind telling them.

Yo. I'm bald.

She reckons it culls the nasties. That if they freak out, well, that's them gone and good riddance.

Round school and down at the netball courts, people are used to seeing Kelly Porima; legs to the heavens, golden skin, perfect teeth, not a scratch of hair on her head.

I'm definitely known as the bald girl.

Though she still thinks she kinda looks like an alien and she won't go to town or The Base without a wig.

I don't think I look cool bald, but it makes me different.

Kelly and her twin are alike in beauty, but not in nature. Before alopecia collided with them both, Kelly was the funky to Leah's classic, the loud to Leah's conservative. Now, their difference is evident in the single wig Leah owns and the 10 or more that live on Kelly's bedroom floor. And the fact she steps over them every day to head into the world with a shiny head.

Kelly developed alopecia in year nine - 18 months before her twin - and one day that year she decided she was done with her wig. But bravery has its limits.

She arrived at school, the intrepid student, with eyes big as Bambi, and everywhere she went, she looked to find people looking straight back. She told her mum, she said,

Everyone looks at me.

It was so caught up in her head that she looked bad, she thought everyone must be thinking that, too. Her mum said,

That doesn't mean that they are being nasty, they are just curious.

And that made sense. Now when she sees them looking, she smiles and thinks they must be curious, they must be curious, they must be curious. It's a mantra that's petrol to her courage, and she carries on.

Alopecia, to Kelly, has been a kind of communion. If you approached her on the street tomorrow and asked to touch her head, she would lower it to your hands.

She chooses to wear no wig with a kind of pride that goes way beyond a lack of vanity. It says something to the world.

I like being bald. It's something that makes me me, and I feel like it's something that's cool and a bit funky.

A trip to an alopecia conference in America with Hilary and her mum, Diane Ormsby, was a life changer for Kelly and being around hundreds of bald people gave her an enduring confidence.

But there are bad days,

When high school sucks and there's too much pressure and there are friend issues and blah-blah-blah.

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Days when she waits for mum to come home, then folds into her arms saying,

This happened, then this happened, then this happened, AND I have alopecia!

Being a teenager is hard enough. She and Leah agree on that.

LEAH

She doesn't want to meet you because then she would have to tell you. And you might say, Is it hard for you? And she would say,

Well, OBVIOUSLY it's hard.

She doesn't want to tell you it has ruined her life, but, pretty much. Being young is brutal and she would give anything to have her hair back.

Leah Porima is a beautiful girl who doesn't want to be looked at. Not up close. A glossy brown wig clouds her face, with a fringe that hangs heavy over tattooed eyebrows and sides that swing forward to hide the edges, where wig meets skin. Her life is lived within the parameters of being 15 with alopecia. Will she run? It might expose her. Will she swim? It might fly off. She's always wondering if you'll notice. You know how people say negative things about you?

That's how I feel about myself every single time I look in the mirror.

Like most teens, Leah feels safe within the confines of what other teens look like and The Look these days is ubiquitous: long, long hair.

Some time into your visit, she folds her legs up on the couch, and loses the long locks. You're scared to look. In case your face reacts in a way that might confirm her biggest fear. She says

If I don't have hair on, honestly, I think I look like a freak.

But holy hell! she looks like a strange goddess, and with the most perfectly rounded head.

People tell me, ‘oh', they say, ‘you look just as good without hair', and it kind of annoys me because I know they are lying.

She will not be convinced. She's stared too long into the mirror within the confines of a teenage head. And she knows guys her age don't have posters of bald women on their bedroom walls.

Boys are probably the worst part about this whole thing. With girls, you can kind of handle how they react,

But if a boy said something, I would freak out a million times.

There's a bang on the door. Her fright has every heart in the room thumping. On goes the wig and on it stays. It's like this every day. Alopecia plugging away at her.

There's always something to do with it in the back of my mind.

She knows exactly how much to shut the curtains so she can sit in the lounge without someone being able to see her from the front door. Only then will she take her wig off. Her family knows not to bring people home unannounced.

Leah Porima topped every subject she took this year, bar one. At prize giving, she was named junior dux. She says alopecia made her try harder at school,

Because something about me was so bad, I wanted to be better at everything else.

Next time you see her, she hopes to have her Freedom wig. It's the next best thing to a permanent head of hair and she will wear it every day so that alopecia becomes the smallest part of her life.

I want to become someone, not someone with alopecia.

HILARY

Her car has broken down, so she has to walk with the kids to get to the Porima house so they can have their weekly swimming lesson. It's hot out. She arrives, no wig, all smiles, a T-shirt that says BALD AND HARD, but she's the softest person you'll meet.

The bald hasn't changed in the two years since you saw her, but other things have.

Well, I look after these kids now.

Twin brothers, 8, and a sister, 12.

Hilary Collins looks exhausted, but she still inquires after everyone else.

Kelly takes the boys out to the pool for a lesson, and Hilary wants to make sure they're not imposing.

Are you sure? Are you sure?

She talks with an upward inflection that insists she's buoyant.

The kids have been amazing; there are way more people who are worse off.

Her dad died from a brain tumour four years ago and this year her mum up and went to Australia,

To try and make a better life.

A better life.

This year, Hilary got made redundant from her fulltime job, without redundancy pay. You look at her T-shirt again and you think, yep, LIFE is what's HARD.

And then, alopecia.

To be honest?

I've been through worse than alopecia, so it's kind of like it's the least of my worries.

Hilary was once a hero to Kelly and now the whole Porima family revere her. In two years she's taught them about courage and about carrying on.

And now she has a family to raise and siblings to teach.

Back when they first met, Kelly sat with eyes like Bambi, and described her new friend,

We went and had lunch together and Hilary went without a wig. I was so nervous for her and when people kept staring at her, she would just smile. It was so inspiring to me. That day I thought to myself, I want to be that cool one day. I want to have the guts to be a little different and not worry about anyone else.

Hilary Collins sits in the lounge and smiles and says though much has changed since you saw her last, her dreams have stayed the same.

I want to become a policewoman still. But I haven't done anything about it. And I wanna get married and have kids. One day.

Kelly and Leah's makeup was done by Ktizo Hair and Spa's Paige Churchill and Ashleigh Jeffries, 24 Tristram St, Hamilton, ph 07 856 0180, visit ktizo.co.nz.

For more information, or to get in touch with people who have alopecia locally, visit alopeciaaotearoa.com

- Waikato

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