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.

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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.

10245377_10201114270258452_3799546275297138876_nI 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.

sprig-3908934_960_720Wind 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.

normal pinMy 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

sunny

Dear Healthy Person…

healthy person pinDear Healthy Person,

Congratulations.

You won in the lucky jackpot of healthy genes.

You are twenty of me.

I think I lost my ticket.

I am a twentieth of the old me.

You can work, eight hours a day, five days a week. Maybe more.

I used to work eight to ten hours a day.

Now I’d be lucky to manage eight hours over a week.

You sleep eight hours and wake refreshed.

I used to sleep well and wake energised.

Now I’m lucky if I sleep deep enough to dream, or long enough to stop being tired.

You can go out for drinks after work, and dinner, then on to the movies. Or to the gym and a catch-up afterwards with friends. Or to football, then beers in the bar. You can go to the theatre, a concert, visit the family.

I used to. Five years ago we’d take the dog on a five kilometre walk every evening, just for starters. Now I’m lucky if I can walk for longer that ten minutes. Meeting friends for coffee wipes me out for an entire day.

sleeping-woman-2772395_960_720If you do more than you really have energy for, push yourself to your limits, you get tired. Exhausted, maybe. Nothing an afternoon nap or a night staying in and an early bedtime won’t fix.

If I push myself to my limits, my body shuts down. Any movement hurts and is as difficult as wading through waist-deep porridge. Not the thin-water-with-a-touch-of-old-sock gruel Oliver Twist was served. Real, thick Scottish porridge. My mind shuts down. Not the have-to-read-same-paragraph-three-times way, but as if my brain has turned to… to… that stuff I’m wading through, whatever it’s called.

bed-1836316_960_720It would be great if an afternoon nap or a night in and an early bedtime was enough of a fix. But when I get that exhausted, it takes anything from three days to a week’s worth of four-hour long afternoon sleeps, days and nights staying in and early bedtimes to recover.

You know, back when I was you, Healthy Person, I used to think tired was a demanding week at work, three university assignments due on the same day, a couple of late nights out with friends, and a weekend gardening, cheering kids on at sports, a day at the beach or walking in the hills, and a visit with family. That was on top of the standard fare that comes with the domestic bliss and bounty of being a one parent family.

There was a time when it meant feeling like the wheels were falling off because the baby was up again at 11pm, and 2am, and 4am, and you hadn’t had an unbroken night since she started teething, and just one deep and undisturbed eight-hour sleep would set you on your feet again. Once, it meant aching muscles after a day gardening, or cycling, or mountaineering, that a long soak in a hot, foaming bath with a good book and a glass of wine would soon cure.

lion-1949785_960_720Back then, none of that meant pushing to my limits. Sure, some weeks required a hefty dose of stamina, and maybe a couple of those foaming baths and early nights, but it was just normal life. Actually, I’m not even sure I had limits. A bout of tonsilitis might make everything flounder like a fish on dry land for a few days, but mostly, tired was a problem with a simple and swift solution.

Now I am not you any more, Healthy Person, my limits are a daily trap for the unwary. And I have been unwary more times than I can count. Because my natural instinct when I have started doing something is to keep going until either the job is complete, or come to the end of a particular stage. I don’t want to stack half of the groceries away in the cupboards, and leave the other half still sitting on the kitchen bench. When the garden needs watering, I don’t want to leave half the plants still gasping for a drink.

So I ignore the creeping ache in my wrist and finger joints, and just use my left hand for a while instead. I pretend my left knee didn’t just sublux, and shift my weight entirely on to my right leg instead. And I keep going.

I know, Healthy Person, this never buys much extra time, and even if it does, it’s often not worth it later. I know what pushes me at those moments is pride, or frustration, or stubbornness. It’s hard sometimes, to accept I’m not you any more.

I’d rather push myself beyond my limits and risk being wiped out from pain and fatigue than never to push myself at all and give up trying, instead settling for a life of less than.

I know there are things I have to say an outright no to, because there is nothing worthwhile to get from doing them. When I was you, Healthy Person, I used to love an evening bike-ride with my husband, on the track along the river. But now I’m a twentieth of you, a bike ride turns me into a Raggedy Ann doll because after about five minutes turning the pedals most of my joints sublux, never mind the lightning storm going on in my face because of the helmet and the breeze from riding.

Mostly, though, I’d rather try things first and find out later if they have to be a no or a with conditions kind of activity. Because the benefit can outweigh the negatives. No point avoiding things because you’re in pain, if you’re still in pain and miserable from missing out.

But what if you’re used to being able to do whatever you need? How do you go from being on the go morning to night, to having to dole out your energy in small rations, and manage the frustration of not being the old you? How do you accept that you are not Healthy Person any more, and you’re just writing an angry letter to yourself?

You learn to balance the cans and the can’ts.

You learn to pace yourself.

You learn to change your expectations.

You learn to do things differently.

You learn to listen to your body.

And on the days that none of that works and the wheels fall off, you learn to be kind to yourself.

Some practical tips to aid the learning:

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Keep a pain diary

This is the one I used when I was first figuring out a management plan for trigeminal neuralgia. There are different versions online, or you can make one to fit your own specific needs. They are valuable documents because recording activities and subsequent pain levels allows you to see at a glance the relationship between the two. Same with weather, what you’ve eaten, how much you slept the night before. I remember noticing that a seemingly unaccountable spike in pain every evening always occurred an hour after I had cleaned my teeth.

Identify what triggers which symptoms of your illness

This is especially vital if you are managing more than one condition. I really enjoy Qi Dong when I am having a relatively pain-free period. But many positions trigger face pain, and because of dislocations, standing up time is limited for me. Knowing which positions are problematic enables me to adapt a programme to enable me to get the most out of it by avoiding some positions, and having a chair to do other sequences sitting down.

Figure out new, less demanding ways of doing things

I can’t ride a real bike outside anymore. But I can take a spin on a static bike, indoors, with no helmet, no wind, no need to hold the handlebars. Good music playing on the phone, a nice view out the window, and four minutes plugged into the stopwatch.

Break tasks down into their component parts

I used to water the whole garden at once. Now I do it in increments, one bed at a time, and have a rest in between each.
Putting the groceries away. Do the fridge/freezer stuff first. Come back later to do the fruit and veg. Later again to do the tins. Work out how long you need to rest between each task.
Putting clean laundry away. I do bed sheets as one task. Towels as another, etc. etc.

Do things take all day, that once would have been a job of a few minutes? Yes. Do I care? Not any more. I like the feeling of accomplishment I get when I have done the whole pile of laundry and don’t need to collapse for a three-hour sleep.

Delegate

Sometimes, lifting a basket of wet laundry and carrying it out to the tumble dryer in the garage is impossible. So my husband carries it out, and I stuff it in the machine and press the button. Other times, I can’t do any of it – so he does it all. And sometimes, all I can do is put my socks away. So I do that, and I mark it down as an achievement.

If you’re someone who has always rushed around doing things for everyone else, wean yourself off the habit. Give your kids age-appropriate tasks they can do to help out – even the tiniest toddler can learn to do things to help around the house. You’ll be doing their adult selves a favour too!

Focus on I can, rather than I can’t

Be honest about what you really can’t do, of course, because people need to know.
But don’t forget to think about what you can still do – or things you can do now that you couldn’t before.
I can’t drive longer than hour without my ankle dislocating. But I can drive. I can drive for half an hour, then pull over to rest my ankle for a few minutes before I drive the next half hour. We live an hour-ish from all 3 hospitals in the area, and I need to go to each of them regularly for appointments. I also know all the best coffee shops or scenic laybys in the area so I can stop en route.
I can’t go out to work any more. I was a primary school teacher and I loved my work. But now I can’t work, I have time to spend on writing and art that I never had when I was working.

So dear Healthy Person, dear old me, maybe I am only a twentieth of you.

But I’m the best darn twentieth I can be… and I’m not going to let you forget it.

 

 

Finding Ideas

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last time they were washed

Clouds billowed in from the north today, hiding the critical sun, with its nasty habit of shining a light on my housekeeping deficiencies. They are many, and the sun is far worse than my mother ever was at pointing out cobwebs in the corners, and streaks and smears all over the ranch-sliders.

On a dull day, the windows look quite clean enough. I can still see the neighbours’ bottlebrush tree, hanging over the fence with its spiky red flowers, and the blue-green flash of tui wings dive-bombing the flax bush for nectar. It’s only when the sun shines that there seems to be a thin film of gauze making outside the glass seem a bit blurred – smudged at the edges like a pastel drawing.

callistemon-3360610_960_720I spent quite a long time today, considering windows. The expanse of plate glass in ranch sliders with a view of our driveway seems wasteful – they should be the other side of the house, looking out over the garden. At least the neighbours’ bottlebrush draws attention away from the car. The panels in the dining-room windows make it look like 18 mini-windows – each with their own specialised view of the roses. The two skinny panels of frosted glass in the front door, carved into diamonds by black lead, cast impressive geometric shadows on the wall when the sun shines.

Amongst the smears on the windows in our house are two sets of small handprints. The grandchildren love to use the windows as a lightbox – draw a picture, then hold it face up against the window and draw its reverse image on the back of the paper. I love seeing their resourcefulness.

When I was a kid, our front door had a round window, and when the sun was in the right direction, a perfect gold disc appeared on the hall carpet – as if the sun had fallen to earth, and chosen our house to gift with itself.

Generations of British kids cut their television viewing teeth on what could be seen through the Playschool windows. My favourite was always the arched window.

One window thought led to another. None of them quite coalesced into anything productive – yet. I was thinking windows because I’d received an email about a writing competition that closes next month. I don’t know what I will write yet – if there is an idea forming, the curtains are still closed on it! But it has to be about windows. It’s the theme of the contest, and even if I don’t get a poem written in time, that’s OK, I’ve still got a fascinating subject with plenty of potential to explore. Even if I put it aside to focus on other current writing projects, I’ll put it in my ideas notebook for another time.

An ideas notebook has been one of the best writing tools I have ever used. Although ‘notebook’ is a bit of a misnomer – more accurate is several notebooks kept in strategic places throughout the house, plus another in the car glovebox. When I want to write, but my mind is wiped clean of inspiration, I excavate my notebooks and flip through the pages until something sparks up a connection.

gravity
my grandson’s poem

Sometimes those ideas are single words, like windows. Keys. Gravity (that was inspired by my grandson when he was six and learning about space and gravity, and was so excited by the concept, he wrote a poem). Others are half-written poems, or first lines and last lines with nothing in between. On the laptop I also have a long list of links bookmarked in an ‘ideas’ folder.

But how do you fill the notebooks in the first place? Where do you gather ideas from? Here’s a few of the ideas I always find pay dividends:

Your own life

You might not want to write autobiographical poems or stories, but events in your life are a great starting point for creative writing. What if is a good question to ask – what if I’d had a twin, learned to play piano, witnessed a murder, got lost in the city. What are your wishes, lies and dreams?

Everyday things.

Sleep. Food. Weather. Kitchen utensils. Look around the room you are sitting in and write down 5, 10, 20 objects. Keep the list in your notebook. What did you have for your dinner? What stories lie behind the ingredients that made it on to your plate?

Newspapers and Magazines

These are a great source for ideas. Not just for current affairs, but also social for comment and local interest stories. Some newspapers offices might let you in to see their archived collection. Last year I was fascinated with the hunger stones that appeared across Europe because of the extreme drought, and wrote a poem in response.

Pictures

Photos, paintings, pictures from print media. Take a trip to an art gallery and write some potential poem/story titles in response to the paintings. Using a title as a launch point for a creative piece is an interesting exercise.

Music

Listen to something you’ve never heard before, or a favourite piece. Close your eyes and let the music play round you, then write whatever comes into your head in response.
Lyrics can also be a good source of inspiration – take the first or last line of another poem or song, and use it as the first line of yours. When you’re finished, replace that line with a different one of your own.

Random words

Write a list of 100 or so words – the first ones that come to mind, or picked at random from the dictionary – on separate slips of paper. Store them in an envelope. When you want to write, take a few slips out of the envelope and write someting using those words.

People

Keep a list of people who interest you – family, famous, historical or mythical people. British poet Carol Ann Duffy wrote The World’s Wife, looking at histories, myths etc usually known for the men involved from the point of view of their wives. Fantastic poems – and the possibilities are pretty much endless. Jot down things you observe people doing as you move through your own day. What was in that red bag that man on the bus was clutching so tight to his chest? Who was the women behind you at the supermarket check-out talking to on her phone?

Places

Open the atlas at a random page or spin a globe. Close your eyes and see where your finger lands. Even if you can’t afford to travel, you can always write about other countries – or other places in your own country. Find out where your grandparents were born and write about their birth places.

Fairy Tales

Re-tell fairy tales and old legends, either from your own culture, or research the stories of another. Tell them from a different angle – was the witch in Hansel and Gretel really as wicked as the story says? What would she say for herself?

dazzleMix and Match

Write about a historical person from the country your finger lands on in the atlas. Use five of your random words in a re-telling of Beowulf. In this poem, mixed food and place.

~     ~     ~     ~     ~

This isn’t an exhaustive list, by any means, but it’s a good launch point. The thing I find with ideas is having one often generates many others. My daughter suggests apples as a topic and I end up writing one poem about crop circles and another about buying bread at a Danish bakery. It’s win-win – I get two new poems and I still have apples on my ideas list for another time!

If you’ve enjoyed this post and want more writing tips, please follow Verve for future posts, and check out my previous ones. 

 

 

 

 

 

Surprise Gifts

I have gift giving on my mind.

I have bought nothing yet. No cards, no wrapping paper.  Not even a bag of chocolate money, which is one of my favourite treats of the year! christmas-tree-311316_960_720 (1)

It’s not that I don’t like Christmas. It’s just that… well, my homage poem to William Carlos Williams explains it best. I grew up in the northern hemisphere – where even if it didn’t always snow,  chestnuts roasting and Jack Frost nipping were never out of place. But now I live in the southern hemisphere. Sun hat and sun- glasses weather and newborn lambs bounding in green fields don’t shout Christmas to me. Turkey and twenty-eight degrees centigrade aren’t the best partners.

Shopping is always a marathon affair for me nowadays too. Besides being a bit over excessive consumerism, the tendency of my joints to dislocate makes wandering around shops for hours on end looking for the perfect gifts a physical nightmare. To be fair, even if I could walk around for hours, I still hate going shopping. I like walking in the hills and fields or on the beach, not pounding the polished tiles of a shopping mall.

I don’t mind. I’ll save my energy for spending time with the family. Instead, I was thinking about the sort of gifts that don’t come in boxes or bags from retail outlets. The sort of gifts that are more about life experiences and opportunities than material ownership. Like a family trip to the… oops, no, better not say here, they read my blog! My favourite kinds of gifts are ones that people can engage with at an intrinsic, emotional level.

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thank you for the nomination!

Just as I was thinking this, an unexpected gift pinged into my email inbox, making me smile from ear to ear. It was from my friend in Scotland, saying she nominated me for the 2018 Liebster blogging award. Such well-timed proof of what makes good gifts. Sometimes the best gifts are the simplest – a sign of appreciation, something that lifts the heart.

Incidentally, lifting the heart is exactly what my friend does on her excellent blog, Despite Pain. It’s an encouraging, positive-thinking approach to living with chronic pain conditions.

The purpose of the Liebster award is to connect newer bloggers with a wider audience. Each nominee has a set of tasks to complete, like the twelve labours of Hercules. (Those stories were my favourite thing about high-school literature classes.) OK, I don’t have to slay any nine-headed hydras, but I do have to come up with some creative, interesting questions for my nominees, so that could be almost as challenging.

1: Write about what makes you passionate about blogging.

Words. Writing. I love writing, painting pictures with words. I’ve been writing since I was three and figured out black squiggles on paper actually meant something. Nobody else knew what mine said back then, but I knew what the story was. Now I write poems, short stories, blog posts, daft emails to dafter friends, novels, reviews, tweets etc. What I like most about fiction and poetry writing is that it allows me to explore and create worlds and experiences I don’t inhabit. What I like most about blog writing is it allows me to explore the world I do inhabit in more depth and create connections with other people through that exploration. Writing about writing helps me hone my craft, and share my knowledge with others. Writing about pain helps me manage my own needs and offer support to others. Writing about social issues allows me to raise my voice about injustices in the world.

2: Share ten random facts about yourself

I’ve scattered them throughout this post. See if you can find them all.

3: Answer questions set by my nominator

It’s five minutes to midnight on New Year’s Eve – you can call one person to tell them how you think THEIR year went… who will you call and what will you say?
I’d call myself, on a time-machine phone. Myself, the same time last year. And I would say, you know that challenge you set yourself? To get your latest poems publication ready and send them off to a publisher to seek their fortune? You did it (and now I have 13 days, 2 hours and 45 minutes to make it true. Plenty of time, no sweat!).

An alien from an unknown planet comes to your house and ask for directions to the most beautiful place on earth. Where will you send him/her/it?
I’d say it had already found the way itself – can’t beat New Zealand!

If you were a season, which season would you be?
I’d make up a new season. A hybrid of spring and summer – a perfect 23 degrees, with an occasional wisp of breeze to keep the air fresh, and rainfall only at night.

Hot, spicy, salty or sweet – which seasoning would you be?
Spicy – so much variety and opportunity!

Think ahead 10 years. Will you wish you had done more with this part of your life? Will you have regrets?
Nope. I do what I can do when I do it. I banned regret from my life a few years ago. I’m not going to regret what I did/didn’t do, I’ll just own it, look at what went wrong, and how to make it right in the future.

That alien has come back… he wants to learn more about [people’s] feelings and behaviour. In no more than thirty words, how would you describe us?
I’d give the alien a dictionary of emotions, and take it out to people-watch.

You’re a fly on the wall. Whose wall?
The Great Wall of China – I’d love to go there. And if that means being a fly, then OK!

Do you have a cure for hiccups?…
My aunt. Once she promised she’d give me 10pence (that was a good rate when I was a kid) for every hiccup –  and they stopped straight away!

What music would you play on a long drive? Or would you rather have silence?
Depends. If we’re on a road trip, and meandering along windy back roads, or through amazing countryside, I’d rather no music because it’s nicer to chat and drink in the views. On a boring, concrete jungle of motorway and high barriers, it’s got to be old rock classics.

The alien… Says that his planet only has happiness and harmony. Invites you and your immediate family on a one way trip to his planet. Would you go?
I love travel adventures! I’d have to negotiate the one way aspect though. One way makes it sound more like a trap than an invitation.

4: Nominate some other blogs for the Liebster award.

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Love animals?
Hate cruelty to animals?
committed
passionate
Voice for the Voiceless

 

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Recipes
travel
DIY
sewing
and a hefty dose of creativity and originality
at  Thoroughly Modern Gillie.

 

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Stephanie Stebbins,
Author
news on past and forthcoming novels
brain wanderings
product reviews
and some great poems.

 

origami
Mind over Latte
family
travel
wellness
personal growth

 

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Mediterranean Love Affair
recipes –
Albanian cuisine
Bolivian cuisine

 

 

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The Mythlings
creative writing
short fantasy pieces

 

5: Create 11 questions for my nominees

If you had to come up with new collective nouns for some animals, what would they be?

If a dolphin had a conversation with a fox, what would they say?

Which is most important – rational thought or emotion?

Imagine you could influence a historical event in some way. What would you do?

What advice would you give to a youngster experiencing their first broken heart?

What would be in your room 101 and how would you overcome the fear?

What makes your heart sing?

What would make you protest-march?

What’s something all your friends love but you think is over-rated?

What’s the best present you’ve ever received?

Fantasy dinner party for 12. Who are the guests (dead, alive or imaginary)?

Red-Wire

And that’s it. Job done. I’m crossing my fingers until 31st December, but meanwhile, I’m off to book that family trip – and I’m still not saying where. Maybe in the next post.

Happy Christmas, everyone.

Ten Ways to Understanding

may-703626_960_720A constant claim from many people with chronic pain conditions is that nobody can understand the pain unless they have experienced it themselves. On a superficial level this is obviously true, at least in that people who don’t have chronic pain conditions, have not felt what it is like to have chronic pain.

But I want to investigate this idea a bit further. Seems to me understanding is a different ball game from experiencing. Do I have to experience a burglary myself to understand it would be distressing to have all your precious, irreplaceable photos and belongings stolen? Do I have to experience winning an Olympic gold medal to understand it would make you feel excited and proud? Do I have to be dyslexic myself to understand that it would be frustrating and confusing trying to read and write? Do I have to be a sheep to know I wouldn’t want to be eaten? No. No, no, no.

Six years ago, when I was first wrangling with specialists over diagnoses of cluster headache and trigeminal neuralgia, the picture was complicated by several extra symptoms that didn’t fit. The neurologist did not recognise what he was seeing. He wanted all my symptoms to fit together like a jigsaw puzzle from a box with the same picture on the lid.

After a year of trying to put these mismatched pieces together and discovering that pieces of autumn trees can’t be squeezed into a picture of an ocean-going schooner, I ended up seeing a rheumatologist. That’s when we discovered we weren’t dealing with two jigsaw puzzles, but four, and the rheumatologist sorted all the pieces into the right boxes.

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These extra two jigsaws, Ehler’s Danlos Syndrome and Sjogren’s Syndrome, are also rare conditions. Like cluster headache and trigeminal neuralgia, they are often unknown by GPs (primary care physicians), are difficult to treat, and difficult to manage. So many diagnoses like this are a little like trying to do a jigsaw puzzle when there is no picture on the box at all.

puzzle-2500333_960_720.jpgAt that point, I didn’t understand much about my jigsaws. I had names, lists of  symptoms, and prescriptions for meds. I knew how they manifested for me, and swiftly gained a clearer picture of how much they always had, simmering away under the surface. With help from Google, and my husband’s research skill at sniffing out useful articles, we gathered information to help us understand.

But I didn’t only want to understand what my conditions were. I wanted to learn how to live with them. Because I have to – there are no magic cures. So I also learned about breathing exercises, Mindfulness, and other techniques to help manage pain. I wanted to understand how I could still live my best life. And I wanted to talk to people and ask questions, so I joined Facebook support groups.

hands-1427881_960_720Support groups are invaluable for people dealing with rare conditions. It’s often difficult to meet anyone in real life dealing with the same issues. Facebook groups provide a place where people can interact with others, ask questions, share learning, make suggestions and give/get support. Many people in these groups who are positive and upbeat, despite facing intense pain, depression, anxiety and fear that often accompanies chronic health conditions. 

As I visited the separate groups for each condition, I noticed one disturbing thing every group had in common. Repeated in almost every conversation thread was the claim nobody can understand what it is like having trigeminal neuralgia unless they have experienced it themselves.

Nobody can understand cluster headache unless they have it them themselves. Nobody can understand Sjogren’s unless… Ehler’s Danlos unless

These conversations often continue by discussing how hard it is to sleep when you are in constant pain, how much easier life would be if their disease was visible, how depressed and anxious and scared their pain sometimes made them feel, how it’s about time doctors found a cure… the same in every group.

Group members talk about a doctor saying they would have to learn to live with it as surgery was not an option. They interpret this as the doctor didn’t care, because Nobody understands how bad *insert rare disease here* is if they haven’t experienced it.

They talk about real-life friends or family asking a member if they had tried acupuncture? yoga? eating more fruit? de-stressing? getting more sleep? meditation? this amazing cure *insert name of snake oil product here*? heat packs? ice packs? burying an unwashed sock filled with your toenail clippings in the garden at midnight under a full moon? Only two of those suggestions are nonsense, but every suggestion gets the same response: Nobody understands how bad *insert rare disease here* is if they haven’t experienced it.

Nobody understands how bad *insert rare disease here* is if they haven’t experienced it is an unthinking kind of thinking that needs to be challenged. It’s isolating, damaging, unhelpful. And it’s just not true. Sure, dealing with any difficult situation – health issues, work issues, bullying, domestic violence etc. – it is easy to feel nobody else understands. But feelings aren’t always true. And sometimes they need to be questioned.

Experiencing a disease themselves would not enable doctors to click their fingers and magic a cure out of thin air for it. When it is an incurable condition, learning to live with it is not an insult, or an uncaring statement, nor a lack of understanding. It’s just the truth.

Questions – even the outlandish ones – from people, healthy or otherwise, are not examples of their failure to understand, but of their success in caring. They ask if you have tried things they believe will work, because they want to help.understand1

Understanding is knowledge and comprehension. And it is tolerance, compassion. It does not require experience – it requires learning. What I didn’t understand about my conditions and how to manage them, I  learned. I’m still learning.  

If nobody understands if they haven’t experienced is the definition of understanding you live by, you’re destined to be disappointed because you’ll misinterpret people’s motives. You’ll see a doctor’s honesty and a friend’s suggestions as ignorance. You’ll be miserable.

How to help people understand

Learn everything you can about your own condition, so you understand it, and can explain it to other people.

Get (and give) honest, accurate information – use reputable sites like Mayo Clinic, Johns Hopkins Hospital, British Medical Journal, the UK NHS, and official organisations like national societies for specific diseases.

Avoid clickbait articles. Verify information/articles from Facebook groups is accurate and from reliable sources. At End Trigeminal Neuralgia any information shared is always reliable.

Decide who needs to know, and how much they need to know. Be succinct and clear. The nerves in my face are broken is a simple explanation for neuralgia

Explain what causes you problems e.g cold wind on my face triggers a pain attack 

Explain your symptoms e.g dry eyes, mouth, skin / aching, stiff joints / fatigue etc

Explain what causes your symptoms e.g faulty collagen makes connective tissue too loose to hold my bones in place, so I get frequent joint dislocations

Explain what help you need e.g talking on the phone hurts my face so please text instead of ringing

understanding pinAsk what concerns/worries your friends/family/colleagues have. Allow them time to express them, and listen to them. Discuss what you can do together to manage them.

Get counselling, either alone or together, to help you manage any feelings of depression,  isolation, fear etc.

Remember, understanding is not dependent on experience. People may not feel your pain, but they don’t need to. They need to understand you are in pain. They need to understand there are things you can’t do, and other things you have to do, in order to manage the pain. These are things you can help them understand.

 

Who Needs Matching Pairs?

Spring is flourishing here in New Zealand. The days are warm, the skies are blue, the birds have plenty to say for themselves and our feijoa trees are full with red promises of the fruit to come.

Some days though, the weather likes to remind us that the season isn’t all sunshine and glamour.  This afternoon we watched clouds of every shade of grey from donkey through to smudged charcoal, loom over the hills and spears of lightning slice through the sky.

Out of the cornucopia of symptoms my conditions deliver, crap body heat control puts in a frequent appearance. Although it’s muggy, the rain in the air dropped the temperatute by a degree or so – enough to make my bare feet think they’ve time-travelled back to the middle of winter.

All I needed was socks. Two socks were easy enough to find, but a matching pair – not a chance. When my feet are cold, all I want is to get warm, so if I have a sports sock on one foot and a hand-knit stripy sock on the other, I really don’t care what they look like.

As my feet warmed up, I remembered a blog post I wrote a few years ago. My laptop at the time was falling apart. Half the keys on the keyboard weren’t working if I typed faster than a one-finger plod, so anything I typed required a PhD in code-cracking. 

During a Facebook conversation with a friend, after one particularly incomprehensible comment from me, she told me ‘It’s like washing socks. You put seven pairs in the machine and get two pairs and three singles out.’

So I wrote a blog post about socks and fatigue. I figured it’s worth updating and including on my new blog here.

Life with chronic health conditions/chronic pain is just like those socks. Each sock is like an uncalibrated burst of energy. I’ve never had seven complete pairs since my conditions started to kick off six years ago. But some days I might have four pairs and two singles, others I might have only two pairs, or only singles. I never know in advance how many socks a day will bring me.

Sometimes I start the day with enough socks to take a shower, make the breakfast and empty the dishwasher, before I need to sit down for an hour. And sometimes even getting out of bed and putting on real socks is enough to empty the drawer all in one go. 

When I first wrote about this, I had had a good day. After the shower, breakfast and dishwasher routine, I’d still had socks left in the drawer for later. Later then was plastering a small hole in the bedroom wall, and driving to the hardware store five minutes away for a tin of paint. Later ended up including meeting my daughter and two small grandchildren for coffee.

None of that sounds demanding, but when you have chronic health conditions, fatigue is a major player, and even just talking to people, smiling and laughing, can make your socks unravel. After we’d finished our coffees and the little ones had shown us paintings from kindy and pointed out giraffes made of wire, red wire, Oma, look, all my pairs of socks were used up.

When I do laundry, I always turn jeans legs inside out to look for lurkers stuck in the ankles, or fish around inside the duvet cover. But you always know, however hard you look, when you only have odd singles left it’s time for home and another rest. 

Once all your socks, pairs and singles, have been used up, fatigue wraps you in a straitjacket. Then even simple tasks like getting a glass of water become monumental hurdles. Not only because fatigue makes the body seize up like a frozen turkey, but because it attacks the brain too. My mind has to make a conscious effort to remember where the glasses are kept, which way the cupboard door opens, and how to turn on the… the… that thing the water comes out of.

That day had been a good day though. So after another rest when I got home, I was able to get my own glass from the cupboard and fill it with water from the tap before I sat down to write about socks. Typing one finger at a time.

In the end, the laptop ran out of socks too and I had to get a new one. Sometimes I like to think I could just get a new body and be the me who didn’t know about sock counting. But the reality is, getting a random number of pairs and single socks out of the drawer on any given day is how things are for me.

Here’s a thought though. At least I have socks at all. Who says I have to count in matching pairs?

Suggestions for managing fatigue

 + Showers are typically exhausting for people with chronic health conditions. Have a shower the day before you plan to go out anywhere or before bed at night.

+ Break tasks/activities into small time slots. Ten minutes, then a sit down for a while before doing another ten minutes. 

+ Still time-limit activities on good days, just take shorter rests in between. It’s always tempting to push to your limits, but is it worth it if it takes days to recover?

+ Delegate. Make sure children and partners pull their weight with tasks.

+ Take naps when you need them.

+ Listen to your body – don’t keep going until you’ve finished something. If you start feeling tired, stop, and go back to it later.

 

Moonlight on Broken Glass

dark-3061610_960_720Most writers know that procrastination is one of the biggest issues to stare down. Somehow, especially if you write directly on your laptop, Twitter always beckons with its enticing maze of opinions, arguments and random thoughts. Pinterest can soak up hours of time. You know if you just give it five minutes, you can beat your high score on Tetris. Well, maybe one more time… one more time… Much as I hate domesticity, I have even been known to defrost the freezer or wash the windows when an empty page yawns in front of me.

I’d love to make suggestions on how to beat this, but I still haven’t got it cracked myself. Even when I set limits on my social media fixes, like ‘Write 500 words, then 5 minutes checking notifications’ or ‘No social media until after the sun is over the yardarm’ (I know, it’s meant to be for gin, but it works!) – I can still be diligently typing away and a bus will rumble by on the road beyond our neighbour’s place. I might not hear it, but I will feel the tremor beneath my feet, because this area is soft peat and relays every vibration.

So I pause, figuring out if it is just a bus or a heavy truck, or if I might any moment see the light fittings sway and hear the house timbers creak, and need to make a dash for a doorway and hold on tight while the whole house rocks and rolls to the beat of the shifting earth beneath. Most times, it’s a bus and I can get back to work. But by then, my mind has strayed to the tectonic plates and the different motions earthquakes cause, and how to capture the exact, vertiginous sensation of the aftermath.

I still count this as writing, because I’m still engaged with putting concepts into words, but it doesn’t help progress the current project.

So I’m not going to write about dealing with procrastination – though if you have any suggestions for me, please comment below! Instead, this is a continuation of my post Channelling Chekhov, looking at more ways of using language to invigorate your writing and achieve that glint of moonlight on broken glass.

Personification

This is the act of giving human characteristics to inanimate things, non-human creatures, or abstract concepts. It is imagery using human emotions (love, sadness, pleasure etc.) and human actions (laughing, crying, shouting etc.) to describe things like toy kites, wind, climate change. It makes writing more powerful and emotive. This then engages readers at a deeper level as it helps bring concepts to life using familiar experiences and ideas.

Personification makes for a neat writing exercise. Try writing a story from the point of view, say, of a fork or a raindrop. Or describing a number of objects with human qualities, such as whispering wind, or blank stares of concrete. It also gives a relatable touch to big concepts and creates a vivid visual picture, such as in this short poem I wrote about coastal erosion where I live.

beach eating

Note: anthropomorphism is often confused with personification. They are similar, as both involve assigning human qualities to non-humans. But there is a difference. Personification describes a nonhuman with a human trait, whereas anthropomorphism describes something nonhuman as if it is human.

Metonymy and Synechdoche

These are figures of speech where one thing represents another thing.

  • Metonymy involves an idea being represented by an associated idea e.g. London hosted the 2012 Olympic Games. London here represents all the people involved in arranging the event, but saying London hosted is a cleaner, more simplified form of expression. An easy ride to describe a gentle horse safe for children. Again, it is simplified, but encapsulates the overall meaning.
  • Synechdoche involves using a small part of a thing to represent the whole thing e.g. telling someone keep your nose clean to mean stay out of trouble, or safe pair of hands to mean a reliable, helpful person.

This excerpt from a poem about choosing a pet uses synechdoche:
Reptilian scales, or cautious shells, feather,
hair or lemon-sharp spines? I wonder whether
fish and fowl can live and play together.

There are many examples of both these figures of speech in common usage, so be careful when including them in your writing. A well-crafted figure of speech injects a richness and originality into writing, but regurgitating a cliché can make writing dull and lifeless.

Synesthesia

Synesthesia uses the five senses in writing but combines them in unexpected ways, such as using touch to describe a visual thing, or sound to describe a scent. The rasping blare of sun uses both touch (rasp) and sound (blare) to suggest heat and conjures the sensation of a very hot day at a deep level of understanding just saying it was a very hot day cannot achieve.

Using figures of speech like this allow you to craft precise descriptions that show the reader what you want them to see or feel. They allow you to convey to the reader an experience they may never have had. It was a very hot day will be interpreted the way the reader perceives heat, whereas a specific figure of speech describing how hot the day is helps a reader imagine desert heat, Nordic heat, humid heat, inferno heat etc.

Hyperbole

The art of exaggeration for dramatic effect.

My twin is bold, a clamour of noonday sun,
red spice, and crackling fire. She spits out dragon
flame, fights with demon claw. I’m the quiet one.

It was cold enough to freeze the nose hairs off a polar bear.

Again, if you think about it, there are probably millions of examples of hyperbole (see what I did there?) in our day to day conversations. I’m starving, when it’s more than three hours since you last ate. They’ll kill me, when you are worried someone will be angry with you. There are millions… when you mean a large quantity.  All of those are clichés, and best avoided.

Onomatopoeia

Words that sound like their meanings. Slap, tick, buzz, zip etc. Find ways of using them in an original way e.g ‘I’ve had enough,’ he says, his voice a slap in the air. The dialogue suggests the speaker is angry or fed up, and slap shows a sharp, hard tone of voice. The writer has not stated he is angry, but the reader understands it.

A last comment on cliches…

Clichés detract from your writing – unless there is good reason to use them, such as in dialogue, or reported speech. People often use cliched phrases when talking so an occasional cliché in dialogue helps make written conversations seem more real and natural.

But what is a cliché? It’s a phrase that, newly-minted, was clever and original but becomes over-used. How do you know if a phrase is a cliché? An easy guide is if you have heard, or seen, repeated use of the phrase by more than two or three different people, it’s probably a cliché. You might also have to research common sayings by area.

It’s always possible It was cold enough to freeze the nose hairs off a polar bear is a cliché, if you live in Alaska or Finland, or anywhere else where snow and minus temperatures are a regular feature of the climate. Or maybe if you just share your homeland with polar bears. I know I hadn’t come across it before when I saw a friend use it, and I thought it was a lovely phrase, but sometimes a cliché depends on your audience. If you are writing a book set in England, then phrases like time for a nice cuppa and mustn’t grumble are clichés, never mind being weird and dated stereotypes. But a phrase I’d never heard before I moved here, mad as a meataxe (which I love, it’s so surreal!) is common in New Zealand.

Finally… deceit of lemons

good writing takes practice and crafting, and a judicious use of figurative devices. We don’t need synesthesia in every sentence, or personification in every paragraph. But learning to use all these devices well, and sprinkle them through your writing at intervals, especially where you want to emphasise a particular idea, will definitely make your writing shine.

Sunhats and Selfhelp

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Waikanae River

On a hot, wind-still, summer evening, the park by the river is the perfect place to be. When you are only just two, this perfection poses a few dilemmas. Climbing and running and jumping, your very favourite things to do, make your shoes and sunhat fall off, and somehow turn the hat inside out. And when you an only just two year old, these are pretty serious dilemmas. Shoes are just too difficult yet. But the grass is nicer on bare feet anyway, so no worries, you can stuff the shoes in your pocket and keep going.sun hats pin

But the hat. This is the strong New Zealand sun, that burns in seconds, and hurts your skin and stings your eyes. You already know all about slip-slop-slapping with sun-cream and hat. And you are very fond of your hat, with the sharks and dinosaurs on it. You want to wear it, but it’s just not working. You don’t want help, because you are someone who likes to do everything you can for yourself, and you are pretty sure, if you do it once more, try it this way, it might just work.

You are so utterly focussed on turning your sun-hat the right way out and getting it on your head, that you are breathing like a grampus, and forget to finish what you want to tell me.

“I’m fixing my hat Oma, and putting it on my head, because…” Breathe, breathe, puff.

“What are you fixing it for, sweetie?”

“Oh! For shade, Oma.”

Five minutes later, despite the success of Operation Sunhat, the inconsiderate sun manages to shine its sharp evening rays directly into your eyes.

“I need to put the sun away!” you say, although when you realise how much higher it is than the trees you’re not tall enough yet to climb, you decide the sun can stay where it is, and run off to find the highest thing on the park to climb. To practise for the sun. I know one day you will discover that putting the sun away is beyond you, but no worries: you have a sunhat, and you know how to use it.

That particular summer evening is an old memory now, but it’s one that recurs whenever I see my granddaughter learning a new skill. Putting her hat on didn’t work the first time, so she tried again. And again. And she kept trying until it did work. It might not seem much of a skill, but the real skill is not in hat management (though success with the hat stood her in good stead later for clothes with tricky buttons and zips, and shoes with buckles or bows). The real skill was in her attitude. Every repeated attempt was another show of persistence, of resilience in the face of mistakes, or of ideas not working as well as expected. Each time she tried again, she was developing patience, planning, and problem solving skills. And each success, no matter how small, taught her that those skills are valuable and productive. She is six now, and she still approaches learning with that same spirit of exploration and determination.

Many people could do with a hefty sprinkle of her persistence and self-belief over their morning cornflakes every day. I often see people in Facebook trigeminal neuralgia support groups ask for help with dealing with their pain, and then dismiss any suggestions with “I tried that once before. It didn’t work.” Chronic pain conditions are life-limiting and debilitating, no doubt about that. Fatigue, anxiety and stress often walk alongside. But there are many strategies we can learn to help manage all of this.

Will they make the pain recede so that normal life, whatever that happens to be, becomes less difficult?

Yes: we can all learn to manage a misbehaving hat.

Will they reduce those pain attacks that are a 10 on the pain scale, that drop you to your knees on the floor, leave you vomiting, or half-conscious?

Not necessarily, but they will help you focus on getting from one moment to the next.

Will you get them right first time?

Maybe. If not, keep trying. New skills take time and practice. If you practice them at times when your pain isn’t a problem, they’ll be second nature by the time you need to use them.

Will they cure the pain?

No. None of us can put the sun away. But we can all wear sunhats, sun protection dark glasses etc to reduce it’s effects. It’s the same with pain.

SEVEN WAYS FOR MANAGING PAIN:

Toe-tappingtoetapping2018

I come back to this one again and again. I lose count of how many times I do it during even one day. It’s simple and unobtrusive, so I can do it wherever, whenever. Thumbs and fingers do the job just as well. I was talking to someone today, when electric shocks of pain snaked along my jaw in sudden, eye-watering, stabs. Inside my jeans pockets, my thumbs sprang into immediate action, tapping left then right, in a slow rythmic beat against my hips. And because the brain is distracted by the movement, it switches its focus from the pain to the thumbs, and keeps it busy until the pain fades or passes.

Eye-trackingeyetracking

Another one that is unobtrusive and easy to do wherever you are. If it’s not possible to sit down, don’t worry. I’ve often used this tool when I’m standing waiting in a queue in the supermarket. You don’t even need to move your eyes too far either side, so if you’re self-conscious trying this in public, nobody looking will notice. Pretend you are reading a book!

Breathing exercisesbreather balloon

I have a range, from energising ones for those days when fatigue is the worst problem, and I just need to make my brain wake up out of sluggish mode, to ones that make me conk out into sound sleep at night. This one above is my favourite for pain.

 

 

Relaxationrelaxation

I keep an app on my phone and my laptop, so when I need it, it’s always at hand. www.calm.com but the internet is full of others you might find more up your street, (or on your whispering beach, or in your rustling forest). Gentle yoga (avoid bending if you have face pain), tai chi, meditation etc are all great relaxation activities too. You-tube is your friend here.

 

Visualisationvisualisation

You can do self-guided visualisations or search the internet for guided ones. Make sure guided ones are narrated by a voice you can enjoy listening to for long. I found it easier starting off with guided ones, and once I was accustomed to the practice, moved on to self-guided. 

 

Mindfulness

mindfulness set

Mindfulness is one of my favourite techniques, and I use it for pretty much every aspect of my life. It’s not complicated or as mystical and otherworldly as it might sound. It’s simply focusing on the moment you are in right now and allowing yourself to experience it through your senses. Giving yourself a mental breathing space.

Distractionmodelling

Anything goes! When the brain is busy focussing on something, anything, it does not respond so much to the pain signals. So any activity you can get absorbed in works well. For me, the list always includes writing, walks, art, games, reading, music, crafts, the garden. Figure out a whole range of things you enjoy doing, so if physical activity isn’t possible, you have some mental activities to fall back on. And if thinking is too much because of brain-fog, then playing gentle music in the background, or leaving the TV on as wallpaper, or staring at the birds out of the window.

As my granddaughter learned with her sunhat, not every idea will work every time. But don’t be a tried-it-once-give-up kind of person. Learn all the tools, and practice them often. Figure out which ones work best when. Make them work for you.oma and opa play date (5)

 

 

Ten Minutes in the Monkey Forest

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On the edge of Nikau Reserve

Beside a small gravel carpark next to State Highway 1 on the Kapiti Coast in New Zealand, huddled in a small v between the shoulders of two hills, is a remnant of ancient kohekohe forest and sub-tropical bush. It is crammed with palms, vines, and ferns. Most people in the area know it as Nikau Reserve. The signs on the highway point to Nikau Reserve. Such imaginative naming comes from the abundant nikau palms, the southernmost variety of palm. There are probably thousands, from the baby, feathery sprouts of green poking above the leave litter on the forest floor, to two hundred year old soaring giants, spreading their umbrella canopy ten, twelve, fifteen metres above our heads. These are Doctor Seuss trees, with their long, striped, green trunks tapering into a polished, bulbous crownshaft and a fountain spray of fronds.

In the spring, lilac flowers bloom from crownshaft and after the flowers, the fruit. Red berries cluster in strings, like dangling necklaces of beads, tantalising treats for kereru. Fantails, grey warblers, tui, bellbirds and kereru fill the gaps between the trees with song and wingbeats. Creatures scuffle in the chaos of the forest floor. Brittle, brown nikau fronds too large to lie prone lean at an inebriated tilt between tree trunks. The foot of the fronds balloons into a scoop as big as a bucket, the head flourishes two ranks of spears. A narrow path loops through the trees and thin, shallow streams meander either side. At the apex of the loop, a fork in the path holds out the promise of a steep, twenty minute climb to a lookout with panoramic views: coastal plains, townships, the glittering turquoise Tasman Ocean, Kapiti Island, the coastline north, and on clear days maybe even a glimpse of a volcano on the skyline.

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View to Kapiti Island

This four acre gem is two minutes drive from my home. On a day when the sun is hot

enough to fry any bare skin, the cool green dim, trellised with green-gold sunlight, is a haven.

On a day when grey rain stripes a greyer sky, listening to the raindrops tapping on an impenetrable roof of leaves is better than any meditation music. On a day when I need a walk, but my zebra joints fall out of their sockets if I walk too far, or the wind is too vicious for my face, this sheltered, ten minute loop track is the ideal solution. And on a day when two small children are thirsty for adventure, this place is the perfect destination.

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Nikau frond

These two small children are our six year old and seven and a half year old grandchildren. They have been coming here with me and my husband for five years now. To them, it has never just been a walk through the Nikau Reserve with Oma and Opa, or a scramble up a rocky path through pillars of trees to a pretty view at the top. It is far more exciting. It is freedom and exploration. It is play, curiosity, mystery and discovery. It is The Monkey Forest.

The first time we brought them here they were toddlers, intensely curious about the world around them and beginning to soak up knowledge they spouted at every opportunity, from naming the raucous bird with the white ruff as a tui, to explaining why few flowers grow on the forest floor. 

Then they were young enough to believe, when we asked them if they’d like to come on an adventure to the Monkey Forest with us, that they really would see some monkeys. They loitered for at least half an hour, peer up into the distant canopy, convinced they might see the whisk of a monkey tail or the flick of a monkey paw. A few stones thrown at judicious intervals into the undergrowth helped keep the magic alive.

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kereru – woodpigeon

Sometimes a woodpigeon helped out by dropping some shiny red berries from its beak, or flying through the trees with that drum roll beat of wings that could surely be a monkey jumping from branch to branch.

While they were looking for monkeys, they were discovering so many other treasures.

“Look, there are flowers growing up in that tree!”

“See that bird, it’s got a tail.”

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piwakawaka – fantail

“That plant looks like a monkey tail.”

“A furry, curly monkey tail.” And the fun didn’t stop when they decided the monkeys were probably all having their afternoon nap so the closest they were going to come to one was the coiled brown fur of new-growth on the ferns. There was still paddling to be done in the little stream beside the path, and leaves and stones to be washed. There were stones to be thrown inside drainage pipes, and shouting to hear the echo.

They are wiser now. They both know that when we said monkeys, we might just have meant them. Seven year olds know that monkeys don’t live in New Zealand. He knows that nikau palms take a hundred years or more to grow ten metres, that each stripe on the trunk is a scar of a fallen leaf. Six year olds know enough Maori to call the fantail piwakawaka and the woodpigeon kereru. She takes my pronunciation in hand, explaining how to get that tricky rotic r. ki-di-do, Oma. It’s a soft d.

And they know too, that you can pack a lot of adventure into ten minutes in the Monkey Forest.


Note: Chronic pain conditions make it very difficult to stay as involved and active in life as we’d like to, or as we were before we were disabled. Sometimes it feels easier to hide away at home, and avoid company, but that’s a surefire route to depression. Sure, there are always times when going out at all isn’t possible. But there are plenty of occasions when breaking activities into bite-size pieces helps you manage your condition without missing out altogether. Put a time limit on social events e.g.

1 – Going to a party for a whole evening is beyond you? Drop in for ten minutes, or half an hour

2 – An evening in a restaurant too much? Join later for dessert and coffee

3 – A long event you can’t avoid? Take frequent rest breaks. Keep pillows and a blanket in your car for somewhere to nap

4 – Spending quality time with children? Structure activities around local places, and factor in plenty of independent play and exploration.

Learn your own limitations, and think quality, not quantity. Remember, you can pack a lot of adventure into ten minutes.

Channeling Chekhov: 4 tips for writing

home-office-2452806_960_720You know that feeling when your fingers are itching to pick up a pen, or rattle across the keyboard, pouring another creation onto the page? Ideas trip over themselves in your mind and words dance. You’ve carved out a generous slice of interruption-free time. Your favourite music plays in the background. You’ve plenty of water and, in case of a bad affliction of the munchies, you’re prepared with snacks; cashew nuts, Dairy Milk chocolate – if you’re on a health kick, carrot sticks.

The blank page entices. You flex your writing muscles and step out into the realm of blank page. It feels great. You’re racing along, your mind is fizzing, your thoughts are fluent, emotive stream flowing onto the page. You capture everything you wanted to say, and bonus thoughts join the original ideas. You write with no hesitation, no awkward pauses searching for an elusive word, and the poem blooms.

First draft done, you take a break for a coffee. You know you’ll need to proofread and edit, to recraft a few lines here and there, and rethink a couple of weaker words. But you like to leave poems to marinate for a time. Nothing is ever pristine and polished the first time round, so you always make space for a redraft.

You drink your coffee, standing by the kitchen window. Outside, young waxeyes dart through the rose bush, and the sun lassoes their haze of feathers in a green corona. You frown, wondering if in the second verse you really managed to capture just how the sun casts its last light of the day. You remember Chekhov: “Don’t tell me the moon is shining, show me the glint of light on broken glass.”

chekhov pinBefore you file the poem in your redrafts folder, you read it again. Aloud, to capture the pace, flow and rhythm.

Your tongue trips and jams on awkward cadences. Your heart doesn’t feel what your mind promised. And you wonder if, when you were distracted with coffee and waxeyes, some goblin snuck in and substituted a different version of your work. This stream of words is thin, flat. It grasps at big ideas, but where is the elemental punch? It says what you think, but where is the invitation to readers to feel, to care? Where is the poem you thought you had written? Where is the verve? The light, the broken glass?

This experience will be familiar to most writers. And even if it’s not so extreme, the writing, marinating, rewriting process is essential to creativity. But how do you capture the ‘glint of light on broken glass’ in writing? Just writing the light of the moon glinted on the broken glass is an improvement on the moon shone but it’s not the most riveting description.

Well, here is how. You fill your writing toolbox with a full set of tools to enhance your craft. Here are four simple tools to start with:

Choose strong, active verbs

Words that convey specific detail give clarity to your writing. If you are describing somebody walking, think how you want the character to appear: purposeful, slow, angry, shy etc. Avoid adverbs. While adverbs do sometimes have their place, they tend to slow the writing down without adding anything substantive. There is almost always a more precise and evocative active word you can choose. Instead of she walked purposefully, try she strode to the door, she arrowed towards her car… Instead of he walked slowly, try he strolled along the street, he wandered from door to door, he ambled up the hill... Instead of they walked angrily, try they stomped out of the room, they stamped downstairs, they marched away... Instead of we walked timidly try we tiptoed out of the shop, we crept through the house, we drifted away from the crowd…adult-3052244_960_720

Create Imagery using the Senses

The five senses are powerful facets of our experience and using them in your writing will add another dimension, helping your readers engage with your poem/story etc at a visceral level as well as intellectual. Avoid obvious structures like he felt, she heard, but suggest in a subtle way using relevant imagery.

Sight from an unrequited love poem set in a Danish winter: I’m standing on solid water and it sings / beneath my feet. Here, sky meets land / in a fold of wedding-dress cloth.

Soundfrom a poem of loss and remembering: I wish my ears were conch shells / to hold the breeze of her voice.

Smell from a poem about being stranded overnight on a beach: They arrived at noon, smelling / of city dust and petrol fumes

Touchfrom a poem about people trying to make you change yourself: He chiselled me into shape / and chamoised me to shine.

Tastefrom a poem about an old lady reconnecting with an old friend after 30 years: But her pasted mouth never savoured an alphabet / of sweet stuff. Honey. Milk chocolate. Plums. / What tickles her tongue is oniony and raw.

Construct Similes and Metaphors

Make good friends with these two. They are simple, effective ways of leading the reader by their intuition and their heart. They will enrich your writing by making descriptions more emphatic and vivid. Well-constructed and judiciously applied (overuse of anything will soon make writing appear forced), they convey a fuller, more satisfying picture than a straight description such as the crowd was small or it was a hot summer. Use them to enhance the mood, meaning and theme of your writing.

Similemakes a comparison of one thing to another of a different kind. From a poem I wrote, referring to the shrinking number of people attending Armistice Day services: Yet on the 11th of the 11th , / the crowd at the cenotaph / is as thin as a poppy petal.

Avoid cliches. They make your writing dull and lazy, and lose the attention of your readers. 

Metaphor suggests one thing as if it literally were another. From a poem about hunger stones  appearing in parts of Europe due to the drought this summer: climate convulsions make summer / an abscess

Avoid mixed metaphors, e.g. in his mind’s eye, he heard the resonant notes of the piano fading away. This doesn’t make sense: mind’s eye suggests vision, not hearing and resonant means deep, clear sounds continuing to reverberate, not fading. Using a metaphor that contradicts itself is jarring.

Extended Metaphor – (sustained metaphor/conceit) metaphor developed over several lines, or an entire piece of writing. They allow a writer to develop a theme, digging deeper into similarities between the metaphor and the concept it compares.

writing-923882_960_720Don’t forget, these tools are not just for poetic or literary writing. All writers need to capture the attention and keep the interest of readers. Showing the glint of light rather than announcing the moon is shining energises speeches, plays, articles etc. Next time you write, practice channeling Chekhov and see the difference.

Look out for more writing tips soon. Until then, here’s an old poem of mine using an extended metaphor:

women are like fruit png