A New Kind of Normal

There is a storm brewing. I can feel it in my face – the way my eye burns, a vice tightens on my skull, and one hundred knives fresh off the whetstone slice at my gums. Just for starters.

To everyone else in my family, the sky looks perfectly innocent. Perhaps the breeze has a hint of chill and damp, but nothing to write home about.

Before I became a human barometer, I would have agreed. I used to watch the weather forecast if I wanted to know what the weather was planning for tomorrow. And if I forgot, then I’d just look at the sky before I left the house in the morning. Grey for rain, yellow for snow, blue for fine. And when I still lived in England, I always took a coat anyway. Just in case. There was always a just in case. Blue skies and sun would be swept away in seconds. Why have four seasons spaced at regular, predictable times over a whole year when they can all be squeezed into twenty-four hours?

When I was a little kid I hated being made to stay indoors because of rain. I wanted to run out and dance in it, jump in the puddles, drop stones in them and watch the ripples compete with rain-drops to ruffle the surface, to tilt my head back and drink the sky. But Mum said I’d catch cold, and who was silly enough to want to dance in the rain anyway.

My Nanna was a good antidote. She always told me if there was enough blue sky visible to make a pair of trousers for a sailor, then it would soon stop raining and the sun would come out.  She made me a little sailor doll that fit in the palm of my hand.

I used to love being outside, whatever the weather.

Rain makes puddles and puddles just cry out to get splashed in, or kicked up in an arcing spray of droplets. Rain transforms the little, burbling stream into a wild, raging thing. It makes grass and foliage shine in a way that makes them seem brand new. raindrops are clusters of pearls clinging to branches.

Sunshine makes the air smell sweet and tropical. It makes people smile. It paints the world in a bright palette. It touches rain and makes rainbows. It makes the sea glitter and the world glow.

Wind races through fields of corn, or grass-covered dunes like the ocean tide. flowers dance, leaves piruoette. It makes my laundry smell of gardens, and blows my cobwebs away.

Snow turns the world into a Christmas card. It sharpens the air, mutes sound. It feathers the sky and softens hard corners. It is play.

I still love to be outside. But the weather is not my friend anymore.

My body is a meteorologist.

It’s not just storms threatening. I know how cold it is even before I open my curtains in the morning. Anything below 15 degrees, and my face-pain registers 5+ on the pain scale before the day has even started. Usually my teeth and lower jaw. Warm is good. But not too hot. More than 24 degrees and the pain ramps up. Not so much in my teeth, though, more in the upper jaw and forehead. Wind is indiscriminate, wherever it hits, it hurts. Rain, same. Snow… well, I can pass on snow now. Where I live in NZ is temperate. The weather pretty much sticks to its own seasons, the winter temperature doesn’t usually go below 10 in the day, and 4 at night, or much higher than 26 in the summer.

It’s over four years since I have been able to go outside without a scarf, without feeling the consequences. I can leave my coat at home, walk around in bare feet in the summer, but I always need my infinity scarf. Even the slightest breeze can trigger a massive attack. Yesterday, I wandered outside to see how the passionfruit are coming on. It was a hot day, and I left my scarf inside. 

Sometimes, all it takes is a rogue spurt of wind. Or a brief tailwind from a truck thundering past. Or a quick blast from the air-conditioning. And what was a good day, a level 2 or 3 pain day, so a get-things-done day, a meet-up-with-friends or a go-for-a-walk day, becomes a whole different ballgame. By the time I had investigated the passionfruit (all green still, but a big crop), and checked on the feijoa trees (blossoms dropped, fruits beginning to show), my face was aching and burning, and had shot up to a 5/6. All because for a moment I forgot I wasn’t normal.

My Nanna, of sailor’s trousers fame, would have said, “Normal is as normal does.” And sniffed. Then laughed, and said, “See what I did there?” And I could have said, “My kind of normal.”
And she would have said, “Normal is different every day.” Or something.
Because that’s what she would say.

And she’d be right.

So what happens when your kind of normal changes? It happens to us all, all the time. Mostly though, we don’t even notice. It’s just life, we change, we grow. At 18, my kind of normal was walking in the hills every weekend, no matter the weather. At 28, it was wondering why my face seemed to hurt after a cold winter’s day in the hills, long after everyone else was warm again. At 38, it was making plans to move to another hemisphere, with warmer winters. At 48, it was learning to live with chronic illnesses. 

What happens is you adapt. You find a new balance, new expectations, new goals. New things to enjoy, to be positive about. A fresh perspective. Maybe not right away, because when life changes shape, there are losses to grieve for. I’ve lost a job I loved. I’ve lost the financial security, professional satisfaction and respect, the career and social opportunities that went along with it. I’ve lost the ability to engage in outdoor activities I loved.

But I’ve gained too. I’ve gained a worldwide set of new friends through online support groups, amazing people I would never otherwise have ‘met’. I’ve gained knowledge and understanding of rare, chronic conditions that can only enhance my experience of them, and become an active and useful member of the online community. I’ve gained the time to focus more on things I couldn’t when I worked full-time: study, my writing, my family, art…

It’s all about the little scrap of sky for a sailor’s trousers. Are you looking for the sun, or the stormclouds? I’ll go for the sun. Thanks Nanna. Yup, I see what you did. xx

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