This time last year, you wore thin blades screwed to the sole of white leather boots and wobbled close to snow-clad skirts of a frozen lake.
Your tongue still spilled English words
skates ice cold
The lake remained solid for weeks long after you coaxed your borrowed skates into swooping curves and spirals to explore further from shore
and your tongue learned new shapes
skojte frossen koldt
Today I hear you talking on the phone. Danish flows like summer streams. Er den vejr godt til skojte? Is the weather good for skating?
The answer is yes. I can tell, because you say we don’t get the right sort of cold here. I hear that whistle in your chest from the wrong sort of cold. Last year, it was silent.
I miss that, and the way every day you tumbled in the door, tongue tripping out new words: Mum, I can say ‘Jeg kan skojte’, and, Mum, I know ‘koldt and sne’. I miss sleeping with my curtains open, icicles teething outside my window.
I suggest we drive to the ice rink in the city though I know it’s not the same. At the rink, you can’t see marsh-grass trapped like flies in amber, can’t gaze through the icewindow at fish still swimming below. You can’t roll on your back when you fall and trace aeroplane journeys in white stripes across icebergblue skies. You don’t feel it move beneath your feet, don’t hear the icesongs chime.
It was hot summer when we left. Back home, we skated on thin ice, trying to force our feet into old shoes too small to fit.
7th October is an important day for people with Trigeminal Neuralgia. It is the international awareness day. People will be wearing teal t-shirts, getting buildings to glam up with teal lights, sharing facebook pics of teal ribbons and TN facts. This year I’ve decided to unpick some of the myths that exist about the condition.
MYTH – TN only occurs on one side
Well, no. It is more common on one side of the face, but bilateral trigeminal neuralgia does occur. The pain is often less severe on the second side, and rarely happens simultaneously. It can’t cross from one side of the face to the other, because the nerve doesn’t.
MYTH – Removing teeth stops TN
The pain of trigeminal neuralgia is sometimes felt in the teeth because the nerve goes into the teeth (the three branches of the trigeminal nerve separate into many tiny twigs). In the vast majority of cases, removing teeth won’t stop nerve pain.
MYTH – TN is always caused by compressions
Sometimes it is. But not always. There are many other causes, such as:
Herpes zoster virus This is the virus that causes chicken pox and lies dormant in the system long after a patient recovers from chicken pox. Sometimes later in adult it reappears as shingles, which can also cause TN. Other Diseases Trigeminal Neuralgia is a secondary condition to a number of other diseases, such as Sjögren’s Syndrome, Multiple Sclerosis, Lyme disease, and strokes. Physical Trauma Head injuries can cause TN
MYTH – My face pain must be TN
Not necessarily. There are twelve pairs of nerves in the head, and any of them can malfunction, causing neuralgia. There are also other conditions, such as cluster headache, which have similar symptoms. To make a diagnosis, a doctor/neurologist needs to consider all options. A patient can help by keeping a comprehensive pain diary, recording symptoms, triggers and other details.
MYTH – Nerve pain elsewhere in my body must be TN
No. Trigeminal Neuralgia only affects the trigeminal nerve, which is only in the head. If you are having other pain elsewhere, talk to your doctor about it.
MYTH – Only adults over 60 get TN
Not true. Trigeminal neuralgia is more common in older people, but it can and does strike at any age. I’ve had it since I was about seven years old. Babies have it, teenagers, thirty year olds.
MYTH – Only women get TN
Nope – TN doesn’t discriminate. Men get it too, though in fewer numbers.
MYTH – Children can’t get TN
They can and do, although it is much rarer than in adults
MYTH – 50% of people with TN commit suicide
There are so many versions of this myth floating around on the internet – 25% of people commit suicide within a year of developing TN, or 50% within three years, or 26% overall. None of them are true. People with any chronic illness/ chronic pain do have an increased risk of suicide, and many people with chronic illness/pain conditions do experience depression/suicidal thoughts. If this is you, don’t suffer them in silence. Ask your doctor for help, talk to friends and family, join a facebook support group, ring a telephone helpline.
MYTH – There is no cure for TN
I guess this depends on your definition of cure. If you mean that a particular surgical procedure or medicinal treatment will stop TN symptoms in their tracks for everyone, then no, there is no cure. But there are a range of meds and surgical procedures available to treat TN and many people do go on to live life entirely symptom-free, or only experience occasional flare-ups.
MYTH – People can only understand TN if they have it themselves
I don’t think so. Empathy, compassion and knowledge is all people need to be able to understand what someone else is experiencing. And in the end, isn’t that what awareness day is all about – sharing information and knowledge so that people can understand?
If you know anyone who needs to know more about TN, please share this post with them.
‘The magic of mosaics is. . .’ the tutor says, her arms out wide like a preacher, ‘regenerative art.’ Laura snatches a tissue out of her pocket, camouflaging a snort. She gazes around at the other women sitting in a horseshoe at the plastic trestle tables, searching for an echo of her reaction. They are nodding, serious, all eyes on the tutor. ‘Take this plate,’ the tutor says. She plucks a cracked and chipped china plate from a box and holds it up, waving it like a fan. Laura sees a blur of pink and gold. ‘It’s an ugly, unwanted thing, but we are going to transform it into a thing of beauty when we make our house numbers.’
Laura sighs. She had grander plans in mind than a decorative 12 when she signed up for the course. After Italy, she wanted to mosaic the concrete floor of her front porch. She’d envisioned girls in flowing dresses and garlands of flowers pirouetting across her hall floor in a perpetual dance of welcome.
The tutor’s box is a graveyard of broken china. Laura picks a blue mug with no handle, and a cracked orange plate. The colours remind her of Italy. They break into pieces with one sharp tap of a hammer. In the end, that’s all it had taken with her and Marco, to shatter their relationship into angry shards. She snips the china into smaller pieces, and glues them to a board. Two orange islands grow in a sea of blue.
‘See,’ the tutor says when they stop to pack up. ‘See how beautiful your work is looking already.’ Laura shrugs. It’s not dancing girls.
The second week, they grout. Laura chooses black. It reminds her of Marco’s eyelashes.
The third week, they seal the grout, and start a new piece. The tutor has brought a box of tiles. ‘The tile shop throws away any they can’t sell.’ She shows them how to add depth with tonal changes. Laura picks two greys and starts a tree. A slender silver birch, stretching up to the sky like a dancing girl. She doesn’t think of Marco.
At home, she hangs the blue and orange 12 on her gatepost. She doesn’t have a hammer, has to bang the nail hard, twenty, thirty times, with a block of wood she finds in the garage. She thinks of Marco as she hits the nail.
A box arrives in the mail from Italy. Everything she couldn’t carry. A blue porcelain vase Marco gave her, the coffee set with the green vines curling around delicate white china. They’d bought it together that weekend in Florence, before he told her. She rips open the flaps, peels back the top layer of bubble wrap.
All her precious things lie in a shattered, kaleidoscope mess of china shards.
Three weeks ago, Laura would have cried.
Today, she smiles. Regenerated. She knows how to make beautiful things out of broken pieces.
This story won first place in a local short story competition, with the theme ‘crisis’. I ‘found’ the idea when I was making a mosaic for an old piece of furniture – no dancing girls or orange number twelves in my mosaic either!
I first came across Diane Arbus about twenty-five years ago, at a poetry workshop.
The tutor had brought along a pile of photographs cut out of magazines, for a writing exercise. She spread them out on the table and had us each pick one at random, that we then used as a visual prompt for that session’s writing.
There are many ways we can use photographs in our writing. And there are many ways to get hold of photos to use – old family snaps, pictures from magazines, Pinterest, or Google, whatever is in your camera. Use landscapes and buildings to help you write about place, portraits to write about people, news shots to help you write about events, photos of paintings to write about art and colour . . .
Here’s a few ideas how to use portrait photographs to generate writing exercises or poems/stories.
Imagine the person in the photo has a secret.
What is it?
Why are they keeping it?
How long have they carried it around?
Is it a guilty secret? Dangerous, good, embarrassing, frightening, silly… ?
Do they want to tell someone, but can’t trust anyone else with it?
Is it a secret that could topple governments, break apart families, or change the world?
Do they keep the secret voluntarily or under duress?
Is it about themselves or someone/something else?
How did they discover it?
Think of some other questions you could ask. Write an answer to each question, spending no more than a minute on each – don’t overthink it. Write what first comes to mind. Later, you can take your notes and shape them into something more detailed.
Now spend another few minutes thinking/writing about the secret about a secret. If the secret is that the person in the photo once killed another person, what is the secret about the secret?
What does someone else know about their secret?
Who knows a secret about their secret?
Why/how do they know it?
How is this going to impact on the first secret, and the secret-holder?
Does the secret about the secret create a conflict or dilemma? What is it?
Give the person in the photograph an item – either something from the photo, or if it is only a portrait, something the person is wearing.
Why is the item significant to the person?
What is the person going to do with the item? Why?
Does somebody else have a vested interest in the item? Why?
Describe the item – both physically, and in terms of what it can do or be or represent.
How did the person get the item?
What would be the result if the person lost the item?
Does the person have to keep the item hidden? Why?
Does the person know the true value of the item?
Write a list of questions to ‘ask’ the person in the photograph, and then write the answers. Go deeper than name, age, occupation etc. Think of things like:
What is the worst thing the person has ever done?
Have they ever committed a crime? What? Why?
What is a quirky hobby they do?
What are they most frightened of?
What do they desire most?
Who has been a strong influence on them, good or bad? How? Why?
What is an unpopular opinion they hold?
What misconception do they hold about themselves/ their world?
What do they regret?
What is their earliest memory?
What is an issue they would stand up and march for?
What is something they think should never have happened?
What is the last thing they purchased? Why?
How would they describe themselves in their Twitter bio?
The best dialogue tends to advance a plot, advance character development, create conflict. Write a conversation between the person in the photo, and someone else, either in the photo or someone you think up. Try these ideas for dialogue:
one person wants some information the other person doesn’t want to share – and neither want to be explicit
a confession to an unsympathetic listener
a revelation about the person they don’t know themselves
These exercises are a good launching point for a new piece of writing, or as an exercise to help you go deeper in an existing writing project, or even just as a way to flex your writing muscles.
The exercise I had to do at that long ago workshop was to write an interior monologue from the point of view of one of the people in the photograph. My picture was a 1966 black and white photo by Diane Arbus, Two Ladies at the Automat.
In my stash of writing notebooks, I still have the scrawled notes from that evening’s work, which eventually turned into this poem.
The peacock needs glasses
Thirty years, and the first words in her mouth are lies. Sugar-coated, so I can swallow them easy, like those pills for my blood pressure. But her pasted mouth never savoured an alphabet of sweet stuff. Honey. Milk chocolate. Plums.
What tickles her tongue is oniony and raw. She says You ain’t changed a bit but who’s she kidding, in that Woodbines drawl? I was there too, back when we were flapping, foxtrotting, flirting.
Peacocks should be on parade in the zoo, but she is sipping tea at my table, in some get-up lambs shouldn’t wear, preening at herself in a spoon.
These days my mirror is a caged parrot, curtained with a black cloth of fake night, so it won’t spawn wisecracks and cackles, making me blush. I don’t need to see myself to know how I look. Not much of a looker, our Vic, Dad always said, but handsome is as handsome does. Whatever that means.
But I was never a girl who hugged walls waiting for dances they never got. Seventeen pairs of dance slippers I went through one summer. I was Markova, I was Fontayne, spinning, whirling, flying, in silk and sequins the colour of flowers, the colour of spring.
All the spinning I do now is yarns that make my grandchildren yawn and leave. They jive to the beat in their own feet, live like tomorrow is a day that only dawns for the old. They don’t want to wear the pearls and diamante I hoarded for my granddaughter. You think I want to wear scarves where fine gems used to shine? I was a swan once.
Haven’t changed? All I can say is, it’s time the peacock wore glasses.
I bought a chest-of-drawers recently, from a local op shop (thrift shop/charity shop). The wood was in pretty good nick – sturdy and solid. But it had a sad, tired paint job – chipped, peeling, and the wrong colour scheme for our bedroom. The other day I got busy in the garage with the sandpaper, and today the paint came out. The frame of the chest has now gone from a battered and dirty looking white, to a sleek, pale grey. Tomorrow, I’ll start on the drawers, transforming them from a dark bluey-grey to a deep pohutukawa red. It’s a colour scheme I love – the calm, soft tones of grey a nice contrast with the cheerful warmth of the red.
Each coat of paint took about five minutes with a roller, and another five minutes with a brush to reach the tricky corners and skinny edges. I love rescuing old, unloved pieces of furniture and giving them a make-over, but in the past I hated waiting for each coat of paint to dry, because I’m impatient to see the finished product. These days though, a short burst of painting, and a long drag of paint drying suits me perfectly – thanks to my various health conditions, pacing any activity is essential.
By the time I was putting the top coat on, the chest was already starting to lose its tired look and become a spruce, new thing. When the painting is finished, I’m going to mosaic a design on the top. that will take another week or two though, because mosaic work is a lot more demanding than painting – cutting and nipping the tiles is hard on my joints. But when the whole thing is finished, it’ll be a very flash piece of furniture for our bedroom.
It’s tempting, when you have chronic illnesses, to wish there was a makeover available that would transform you from sore and tired to sleek and spruce. But, just like sometimes the furniture I see in op-shops is beyond my skill level to renovate, some illnesses have no definitive cure, and wishing for a make-over is a depressing waste of energy. I’ve written before about treatments, and surgeries for trigeminal neuralgia, and about pain management techniques for chronic pain. Here I want to look at different ways of managing some typical triggers of trigeminal neuralgia – a make-things-the-best-you-can approach.
Sometimes, making even minor changes to your life pays dividends in helping you to reduce frequency and severity of attacks.
Carry an emergency bag of tricks with you, and at home have one in reach of your bed, and where you like to sit. Keep any emergency medications in there, heat/ice packs, any creams/sprays/CBD oils etc you find help, and alert cards
Heat, cold, or a combination of both are often effective in reducing the pain of an attack. There are a few options you can use:
– gel heat packs – electric heat pads – microwave wheatbags – hot water bottle – hot, damp facecloths – gel ice packs – freezable ice packs – instant icepacks (click and use) – bag of frozen peas – cold, damp facecloths
Triggers and tips
Temperature and weather
Cold and/or heat, especially at the low and high ends of the spectrum, and wind (especially cold wind) and snow or rain on your face are common triggers.
Get a selection of bandannas, scarves, hats you can wear all year round. I like infinity scarves and have a few ranging from lightweight cotton ones for the summer, and thick, woolly ones for the winter.
Keep the temperature in your house at an even heat – I find anywhere between 18 to 22 degrees is the best for me, but use a thermometer to measure the most comfortable heat for you
Keep your bedroom warm overnight – on those sultry, summer nights the temperature plummeting around 3am is a relief, but the rest of the year, it’s more likely to wake me up with those familiar stabbing pains, and hiding my face under the blankets isn’t as effective as a properly heated room. If you don’t have a heat source in your bedroom, hats and scarves come in handy here too
Get a ski mask, and a coat with a big hood for autumn/winter
Check your house for draughts, and seal any gaps in window and door frames
Avoid the breeze from air-conditioning or fans
In your car, keep the blower vents turned away from your face when the air-conditioning is on
In public places, avoid sitting near exterior doors or open windows – the blasts of cold air every time someone comes or goes are no fun for your face
Keep your house cool – air conditioning, windows open etc.
You may still find wind triggers attacks, so direct fans away from your face, and wear a light scarf outside
Use ice packs
Stay in the shade
Turn down the water temperature when you shower/bath
drink plenty of water
Eating and drinking
Biting, chewing and swallowing often trigger attacks, and it’s not uncommon for people to stop eating during attacks. But eating a healthy diet and drinking plenty of water keeps you healthy and makes your body better able to cope with pain.
Avoid hard, crunchy or chewy foods like steak or crisps/chips or salads
Strong flavours like citrus or spice overstimulate the trigeminal nerve, so you may need to avoid hot curries etc.
Caffeine, fizzy drinks and sugar often trigger attacks, so try fruit teas, smoothies, and artificial sweeteners rather than coffee, tea and sugar
Heat and cold can be an issue with food too – avoid eating anything straight out of the oven or fridge/freezer and don’t put ice in drinks
If opening your mouth wide is difficult, try using smaller sized cutlery and chop food into small pieces so you don’t have to bite it
Drinking can be easier with a straw
Find a range of recipes for a soft-food diet – you don’t have to rely on apple-sauce and yoghurt. Soups, stews, slow-cooked casseroles, pasta and sauce dishes, risottos, eggs, etc are easier to eat than food that needs a lot of chewing
The trigeminal nerve reacts to any touch on the face. So any action that involves touch may trigger an attack. Here’s a list of some more common triggers:
if your neuralgia is only one side of your face, ask people to kiss you on the opposite side.
do the same if you need your temperature taken, or a nasal swab or any other medical intervention
bilateral TN is trickier. Sometimes you might need to air-kiss, or pick a spot that doesn’t hurt, or take a rain-check
Talking, smiling and laughing are typical triggers
explain to people who need to know that sometimes this kind of shared communication is difficult and painful for you.
You’re not being rude if you stop talking or don’t laugh. Carry an alert card, or have a photo on your phone explaining it, which you can show to people if necessary. Something simple like “Can’t respond – face spasm. Give me a minute”
try talking quieter and slower and smiling or laughing gently so your face moves less
if you have to communicate with someone at a distance, e-mail or text rather than phone
if you have to phone, use speaker-phone as the phone against your ear can trigger attacks
wash with warm rather than hot or cold water
turn your back on the spray in the shower if the water hitting your face hurts
direct the shower spray at your shoulders and lower, not your head/face
use sponges or the softest facecloths and towels you can get
use face wipes or baby wipes
use unscented washing products
be gentle – dab, don’t rub or scrub or splash
clean your teeth with a soft, small brush, or a child’s brush
clean your teeth with warm water
use a soft silcone brush, or your finger, if even a child’s brush is too painful
don’t rinse, just spit
use mouthwash if flossing is too painful
if you use a waterpick for your teeth, fill it with warm water
avoid strong minty toothpastes
use soft brushes or wide-toothed combs to groom your hair
use tangle-free shampoos and/or conditioner for washing your hair
use dry shampoo to reduce amount of touching
keep your hair shorter so it’s easier to manage
too sore to wash your hair – cover it up with scarves/hats/headbands or pin it up
shave straight after a bath or shower when your skin is softer
use coconut oil hair conditioner instead of shaving foam
use shaver on number one setting
grow a beard and keep it trim with clippers
Keeping fit and active is good for our mental and physical health, but it can be difficult to achieve when certain positions and activities trigger neuralgia attacks
Bending your neck or turning your head is a typical trigger
get a grabstick so you don’t have to bend down to pick things up
if you do bend, bend at the knees and keep your head straight
use a stool or step-ladder to reach things from high shelves rather than stretch
turn your whole body if you need to look at something to your side
slow your movements down so you become more aware of your body and any awkward head/neck postures and movements
do you clench your teeth? this is a common reaction to pain, but increases TN pain. Rest the tip of your tongue on the back of your front top teeth to keep from clenching and to relax your jaw
Getting those endorphins flowing increases positive feelings and reduces the brain’s perception of pain. So many people find exercise fantastic for pain management. But depending on your specific triggers, you may need to amend your exercise habits.
if you run or cycle, and the wind on your face is a trigger, wear face-coverings like bandannas or ski masks, or get a treadmill and/or static bike so you can exercise indoors
try tai chi or yoga for gentler exercise – just be careful with bending
swimming is problematic if the water is too cold, or the air-conditioning and noise of a public pool is a trigger. See if you can find a hydrotherapy pool in your area, or a friend with a pool at home!
keep a diary of your pain after exercise – is half an hour of vigorous exercise fine, but an hour too much? Is gentle exercise fine, but vigorous exercise too much? Know your limits and adapt your exercise needs around them
if you are already hurting, but the pain is not too debilitating, get up and do something active to get those endorphins working – even a gentle walk
Light and sound
Bright lights and loud, sharp noises are often problematic for people with trigeminal neuralgia.
wear dark glasses in bright places like malls etc
replace any incandescent or fluorescent lights in your home or work space with renewable energy, lower wattage bulbs. These give off softer light.
Install dimmer switches so you can adjust the light to a comfortable level for you
go to public places like malls, supermarkets, swimming pools at their least busy times
wear ear-protectors, if you can
play music at a lower volume
in restaurants etc. ask the manager to turn the volume down on the music
don’t listen to music through headphones
wear ear plugs when doing noisy tasks like vacuuming – or delegate the task to someone else, and leave the room
The key thing with triggers is finding out what yours are and how much you can tolerate before needing to change the way you do things. I was out in the garage, painting the first coat of red on the drawers. Around four o’clock, as the sun went down, it felt like any warmth had been sucked out of the air. I probably should have come indoors to get my infinity scarf to wrap round my face, but I only had one drawer left to paint, and I didn’t want to interrupt my flow! I know, from experience, that a few minutes in the cold air may cause a few burning and aching sensations in my face afterwards, but generally now nothing a heatpad can’t fix. So I kept going. If it had been blowing a gale, though, I’d have got my scarf – one gust from a southerly blast is enough to trigger hours of extreme pain.
Keep a pain diary for a few weeks to help you figure out what and how bad your triggers are, and you’ll be able to work out what adaptations from this list, or others you think of, will help you.
We can’t cure trigeminal neuralgia, but we can make it less trigger-happy. Please comment below with ways you’ve found that work for you.
Feijoa season is finished for the year in my garden. I’ve pruned the trees now the fruit are finished, snipping off the branches growing too close together, making sure there was space for birds to fly through. The sun was hot for late May, more like a spring day in the northern hemisphere than an autumn day here. Our cat lay on the hot metal of the shed roof, watching me through the red leaves of the acer tree.
We have two feijoa trees. We planted them a few years ago, when they were knee-high – just like our grandchildren. Now, the tallest grandchild is nearly up to my shoulders, and if feijoa trees have shoulders, I’m nearly up to theirs.
From summer when the first flowers appear until autumn when the fruits fall, the grandchildren check on the trees every time they visit, hoping for a good haul to eat for afternoon tea. Previous years, the crop has been pretty sparse, only a couple of fruits each day for a couple of weeks.
This summer, though, the trees were painted red with firework flowers, and by the beginning of February, hundreds of tiny grey-green fruit hung from the branches, growing a bit bigger and a bit greener every day. The first thing the grandchildren did every Friday afternoon was rush out into the garden to inspect progress, counting and measuring, and giving the branches a gentle push just in case any feijoas were ripe enough to fall into outstretched palms.
The last Friday the kids visited, the feijoas were bright, shiny green, as big as eggs, but still stubbornly clinging to the branches. Next week, we said, next week they’ll fall.
The next week, New Zealand went into lockdown. Alert level 4, for four weeks. Friday visits morphed into Friday video calls. And the feijoas fell. Tens of them. Hundreds. Thousa. . . oh, okay, not that many, but still, it’s the first year the grandchildren couldn’t help us eat them, and we end up with a bumper crop. Way more than two people could get through. Every day through lockdown, I’d get up in the morning and find another ten to twenty feijoas scattered on the lawn. We’d eat some for breakfast, cutting them in half and scooping out the flesh. I hunted out recipes for baking with feijoas. We’d eat the results for afternoon tea. Feijoa crumble slice was the favourite.
And so the grandchildren didn’t miss out altogether on this year’s crop, I started cutting and peeling, slicing and bagging and freezing. The top shelf of our freezer is all feijoas. We’ve enough to make feijoa crumble slice for fifty Fridays.
The first Thursday of lockdown, I got an email from my writing group at the local library. Write about lockdown for this month’s meeting, she suggested. I thought about writer’s block in lockdown. About how much clearer and sweeter birdsong is without the orchestra of traffic noise. About metaphor and meaning. I ate a slice of feijoa loaf for afternoon tea.
The first week, I saw a poetry journal asking for submissions of poems about lockdown, and a literary magazine asking for submissions about covid-19. I saw memes about Shakespeare writing King Lear while quarantining from the plague. I saw a poetry competition with the theme of bubbles, because in lockdown we’re living in our separate bubbles. I thought about people living in cars. We played games with the grandkids on video-call. I thought about missing hugs, and feijoas.
I didn’t write. My writing mind was on blockdown!
The second week, I saw a writing magazine asking for submissions on the theme of wildlife, and a poetry magazine for submissions on the theme of fruit. I still didn’t write.
My writing room is at the back of the house, with ranch sliders opening into the garden, and a view of the feijoa trees. Early in the day, the sun pours in and I spend a couple of hours working there every morning before breakfast. Sometimes the cat comes and joins me, curling up in a patch of sunlight on the carpet, or hiding under the desk and pouncing on my shoelaces. Goldfinches hop around the lawn, combing it for seeds, and pīwakawaka, my granddaughter’s favourite birds, flit and chirrup in the feijoa branches. I got some nice photos, and did a few sketches for a mosaic panel I’m designing for the garden. But not much writing.
Most writers, I think, will recognise the experience – you want to write, you may know exactly what you want to write, you’ve carved out some me-time in your day to write – and the words won’t come. Ideas might flourish, like this season’s feijoas, but they cling stubbornly to their branch, instead of falling in juicy, ripe words to the page. Or maybe you’re right out of ideas – there were no feijoas on the tree this season, or the birds and possums ate them all before you could get them.
How can you get your words flowing again?
Take a break
Grab a coffee and put your feet up. Go out and catch up with some friends. Or take a few days holiday from writing – or all of the above. Sometimes, you may be struggling to write just because you are tired, so take some time to relax.
Do something different
Read a book, create some art, do some gardening, go shopping… doing something else gives you the chance to step back from your writing. A change of focus often helps to bring clarity to whatever it is you are stuck with. Gathering fallen feijoas one morning gave me the idea for the poem below, which broke the back of my lockdown blockdown.
There’s something about physical activity that loosens up the thinking process. Going for a walk, especially if it’s on the beach or along the river in the trees, fires up the body and the brain. Even just driving somewhere – the motion of the car puts the mind in motion too.
Talk to someone
Articulating the problem is often all that’s needed to find the solution. Join a writing group or an online workshop where you can share work, discuss writing issues, and get feedback.
Try a different angle
Park the scene you are having trouble with, and move on to another part of the narrative. You can go back later, when you’ve figured out what you need to say. Or try rewriting the scene from the point of view of another character.
Exercises and prompts are good launching pads. Search for writing prompts on Google or Pinterest, or click here for some more ideas.
Try this stream-of-consciousness journalling. Each day, hand write three pages of thoughts – don’t worry about making sense, or spelling, or grammar, just write whatever random thoughts occur to you. This can free your mind up for more focused, crafted writing later.
Change of scene
Take your laptop or tablet or pen and paper somewhere different. Try writing in a cafe, or park your car up somewhere and write. Being in a different environment gives your senses a boost as you see, hear, smell etc. different things. If it’s too distracting to focus on a sustained piece of work, just write notes, and craft them later. Or treat it like an exercise – you could write a list of three things you can see, three you can hear, smell, touch and taste. Then choose to focus on writing about something from that list, in a ten-minute freewrite session. you might be surprised with what you create!
Often, the block has nothing to do with our writing ability or creativity at all, but has an emotional source – like fear, or fatigue. You might just need a good sleep. Or maybe you are worried and anxious over events in the world, in your life, at work etc. It’s hard to concentrate and create when you’re stressed. Or is it something more personal? I used to find finishing writing projects really difficult because of an unrecognised fear about taking the next step to publication – the spectre of rejection.
Once you acknowledge a fear or emotional issue, you can take steps to solve it. I solved the rejection fear by getting rejected a few times – I submitted poems to magazines. Some were accepted, some weren’t. But I learned I can deal with rejection when it happens – and celebrate when it doesn’t! Rejection is no fun – but the fear of it doesn’t stop me finishing projects any more.
When I was struggling to write at the beginning of lockdown, I realised I was actually struggling to get my head around pandemics and lockdowns – so I gave myself a few days holiday from writing – until the feijoas did their work! Once I got going again, I wrote three poems, two short stories, and one and a half chapters on my novel.
The feijoas are the best they’ve ever been. Last Friday, you counted one hundred feijoa promises, a few days shy of ripe.
Feijoas are best fresh from the tree and eaten for breakfast, halved, scooped out with your favourite spoon. The one with ABC on the handle your Mummy used when she was small.
Lockdown cancels a month of Fridays. The feijoas ripen, giant green raindrops free-falling overnight and gathered from dew-wet grass.
Feijoas don’t last. We can’t eat twenty a day. Don’t waste them, you say when we video-call. I peel and chop and freeze, search Pinterest for recipes, add dates and ginger and vanilla essence to our weekly shop.
I bake feijoa loaf, feijoa and ginger muffins, feijoa crumble slice, feijoa date cake. After lockdown, you’ll visit again and we’ll make feijoa ice-cream. You can eat it for breakfast, scooping it from the bowl with Mummy’s ABC spoon. When you finish, you can help me prune the feijoa trees, ready for next year’s crop.
Next year, we will gather feijoas together. They will be the best they have ever been.
My running shoes lie strewn on the floor, pointing in opposite directions. A ladder of darker grooves imprints the white leather tongues.
The first time, we have this conversation.
– Have you seen my shoelaces?
– What do you want laces for?
– I want to go for a run. There’s no laces in my running shoes.
– It’s raining. You can’t go running in the rain.
He doesn’t like me running. Thinks other men in the park will watch me, stare at my breasts, my legs. Not my face – he says my face would put a man off his beer. I tell him I don’t run in the park. I go along the river, under the trees. Nobody else runs there, the path is too winding, straddled with tree roots like old bones. It’s safe in the trees. I like to hear wind sing through leaves.
The second time, we have this conversation.
– My shoelaces are missing again.
– How the hell do you lose your laces?
– Did you take them?
He gets that look on his face – eyes flashing icicles, nostrils flare like wings. White-lipped smile. His voice hums like velvet – the touch of velvet rubbed against the nap.
– What would I need with your laces?
He laughs, as if I’ve cracked some eccentric joke. And he sighs, a shivering sound that makes me think of ghosts.
– I don’t know.
– I need a beer. You’re doing my head in. Get me a beer.
He stretches out on the sofa, socked feet propped on the arm. Grey socks. Lighter grey in a patch wearing thin on the heels. A thread hangs loose. If I pulled it, would the whole sock unravel?
– Beer, woman. And nuts.
The beer is in the fridge in the garage. I hate going into his garage. The light bulb doesn’t work and the light falling through the open door from the kitchen is thin and grey and only reaches halfway. I creep through the guddle of broken chairs, of rakes and spades and old paint cans, careful not to dislodge anything. They can leave bruises.
In the kitchen, I take a packet of nuts from the pantry. I prise the lid off the bottle. Gently, so beer doesn’t foam up and spill over. I flip it into the bin. He shouts from the lounge.
– What’s taking so long? Christ, call yourself a runner.
In the hall, the shoe rack is shoe-shop neat. My running shoes are a beacon of order, heels and toes together, laces threaded through all the eyelets, equal lengths tied in a pristine bow. I never leave them tied.
He is still lying like a fixture on the sofa, eyes fixed on the widescreen. I put the bottle in his outstretched hand. He grabs the peanuts, pours some into his mouth from the packet. Spits them out in a spray.
– These are bloody salted. I told you to get dry roasted.
The third time, we have this conversation.
– Did you go for a run today?
– I had a headache.
You’d think he’d won an Olympic gold, the way his whole body swells, and his face flowers. My stomach unclenches. He doesn’t know. I did go for a run. I found some old garden twine and threaded it through the eyelets, a green link to a snatch of freedom.
– A headache doesn’t get you off cooking dinner.
– What do you want?
I peel potatoes, slice them into chips. I chop red onions and fry them into crisp, battered rings, the way he likes them. I flame-cook the steak.
He hurls the plate against the wall.
– These bloody onions are raw
Food slides down the wall, huddles in a heap at the skirting board. Steak juice drips tears I won’t cry. He doesn’t realise I am an onion. He sees the surface – crisp, brittle skin, easy to tear and rip. He doesn’t understand layers. Each separate skin may be fragile, transparent, gossamer-thin. Together, they are opaque, sinewy. I won’t let him see my eyes sting and smart.
In the morning, I run. I run in the rain. My pony tail bounces, a wet rope drumming between my shoulder blades. I run on hard, wet pavements, my shoes a percussion beat, a cymbal hiss. The rain stops. I run between trees, feet dancing and dodging. The green twine snaps. I walk home barefoot.
The neighbour stands at her mailbox.
– I haven’t seen you out running for a few days. How are you?
– I’m fine. Busy with. . . stuff.
– How are you really?
She touches her finger to my wrist, where my skin wears a bracelet of bruises, the colour of onion skins.
– I heard things. Last night. Smashing. Shouting.
My tongue is locked. She tucks a business card into the running shoes dangling from my hand by broken green twine. Women’s Refuge, it says. And a phone number.
– I can help you. You know where I am, she says.
I hide the card inside a sanitary towel packet. He’ll never look there. I don’t know why I keep it. I don’t need help. I am an onion.
But it isn’t only shoe laces. He is a kaleidoscope of malice. I unpack groceries, put a new bar of soap in the bathroom, a new lightbulb in the garage, and fill his beer fridge. When he showers, he complains there is no soap in the soap tray. I fetch him another fresh bar. At dinner, he demands a beer. I fetch him a bottle from the garage, picking my way to the fridge. The new bulb is a scatter of glass shards on the concrete floor. When I drop the beer cap in the bin, I see a smooth yellow curve of Imperial Leather poking out through vegetable peelings and biscuit wrappers.
I put my house key in the bowl on the hall table when I come home. It disappears. He won’t get a new one cut.
– You’re so bloody careless. Just find it.
When I go for a run, I climb out of the kitchen window. My laces don’t disappear now he thinks I can’t go out.
He has names for me. Crazy. Slut.
He brings me flowers.
– I’m sorry if I’ve been a grouch. Work is stressing me out.
– A grouch?
I whisper. The word tastes yellow, like a wax crayon a child would use to draw a fat sun.
– Don’t make me say it twice. I’m really trying here.
– Thank you for the flowers.
– That’s better. Now kiss me.
He throws the flowers on the table. Throws me on the sofa, pushes my t-shirt up, my pants down.
– No, no.
– Wrong answer. You really should be more careful, you know.
He licks his fingertip and traces across my body, a dot-to-dot of bruises. I close my eyes and think of running. Bare feet, slapping on cool earth. Loose hair, flapping. Wind sings in the leaves. I’ll be safe here.
He zips himself up.
– That will have put a kid in your belly. About time.
This is the conversation I have with him now
I clean the house, make dinner, and fetch beer. In bed, I spread my legs and lie mute. When he sleeps, I slip out of bed, wrap myself in my dressing gown and stand at the window, watching streetlights through glass smeared with rain.
– I am an onion.
What else can I be?
I find the key when I’m dusting, tucked behind a picture on the same nail. I squirrel it away in the sanitary towel packet, with the card. The card is creased, curling at the edges. I recite the number. I might need help.
My stomach starts to spill over my waistband. He grabs a handful, kneading his fingers like I’m a piece of clay he’s sculpting.
– My son.
The ultrasound says it’s a girl. I watch him – his icicle eyes, his flared nostrils. He double checks.
– Are you sure?
– You made a useless effing girl.
He drags me to the garage. I try to run, trip on a paint can and slam into the concrete floor. He grabs a spade.
The baby leaks out of me in red tears.
He doesn’t realise I am a rain gauge. Every rainfall, water creeps up, until all it can do is spill over.
I knock on the neighbour’s door.
– Please could I use your phone?
My fingers know the number. The neighbour says she’ll drive me to the shelter. She waits in her car on the street.
He is at work. I pack a bag, and pull the front-door shut, a black full-stop. I thread a shoelace through my key, tie a pristine bow, and drop it in his mailbox.
When I’m busy on a writing project, particularly if it’s poetry or fiction, one of my favourite things to do is go to a local cafe and spend a couple of hours with a couple of cappucinos and my tablet. Most of my writing time is spent at home, in a quiet room overlooking the feijoa trees and pittosporum shrubs in the back garden. The cat likes to join me, usually slinking under the desk. So a sojourn in a cafe once a week is great – plenty of people to watch and observations and sensations to capture.
We live near the beach, and along this part of the coast is a cornucopia of fab little cafes and restaurants. Each one has some special characteristic that sets it apart from the others. We recently discovered a Hungarian cafe tucked away in a quiet spot off the state highway. It’s got an outdoor seating area next to an unused farmlet, with a very artfully-placed old, green tractor sitting in the field under an equally artfully weeping willow and a view across the town below and out to the island.
The coffee was probably the best I’d tasted (and that’s saying something – New Zealand is good at coffee) and it came with a little Hungarian biscuit on the side. It’s the little extras like quirky views and tasty biscuits, that help give a cafe its character.
Which got me thinking about other places we like to go, and what their particular character is. There’s a brewery cafe where you can watch through a window while the beer is being brewed. there’s a cafe in a small coffee-grinding warehouse, where you can watch the beans being ground. Often, it’s the garden or the view that entices us. One of my favourites has a tropical jungle feel to the garden. Our grandkids jump up and down with joy when we take them to the cafe that dishes up a handmade chocolate with every drink.
Lots of lovely little extras.
Little extras aren’t always so lovely. Sometimes they are a total pain in the backside. With cafes, it might be that the music is too loud. They might be cranking out 80s electro, techno, or new wave synth crap – although at least you can ask them to turn it down, and change the playlist. Or just go to a different cafe.
Chronic illnesses like Trigeminal Neuralgia often come with a shedload of little extras, or autonomic symptoms if you’re talking to your doctor – and none of them have patients jumping up and down with joy.
With chronic illnesses, you can’t ask the doctor for a different body.
The Little Extras:
Trigeminal Neuralgia is a chronic pain condition, affecting the trigeminal nerve in the face. There are two trigeminal nerves, one each side of your face, and three branches to each nerve.
Autonomic symptoms occur on the same side as your TN pain.
It may not sound like much, when you consider the excruciating pain caused by attacks of Trigeminal Neuralgia, but it can attract some weird looks from strangers when you wander around with one half of your face bright red and the other normal. For many people, the red area will also feel hot and burning to the touch.
Sometimes the affected part of the face becomes swollen and puffy
This is droopy eyelid –
again, on one side.
The eyelid sags,
but generally the patient
is unaware of it,
unless they notice in the mirror.
For me, it’s often a warning sign
of a pain attack, and I get
my pain management toolkit
ready when my husband
points out my eye is sagging.
Red Eye and Weepy Eye
Medically referred to as conjunctival injection and lacrimation, or tearing. The eye looks blood shot, and leaks tears. Many patients also find their eyeball feels like it is burning.
Sometimes it feels like my eyelid, just at one corner, is fluttering like the wings of a humming bird. Sometimes, it really is.
TN patients often go through a lot of tissues, mopping up the clear liquid running from their nose – but from only one nostril. Rhinorrhea, like all the autonomic symptoms, only happens on the same side of the face as the damaged nerve.
Sometimes, your nose might just feel like it’s running. I’ve lost count of how many times I’ve tried to wipe a non-existent drip from mine. You’d think I’d have learned by now that it’s just the nerve playing up, but it catches me out every time.
You know that sensation when you’re driving up a high hill, or ascending in a plane and your ears need to pop? Yeah, that. Only blowing your nose or sucking a sweet doesn’t relieve it, and is likely to trigger a full on pain attack.
Mine is more of a tingle – like those ants crawling – inside the ear canal, but sometimes it stings and itches like a mozzie bite.
It might feel like there is something stuck in your throat, like the hair above, or a crumb of food. But no matter how much water you drink to dislodge it, you can’t – it’s just the nerve triggering the sensation.
Sometimes people experience extreme pain as a cold sensation. And when I say cold, I mean freezing – as if you’ve rubbed an ice cube into your skin or lain down in the snow.
Numbness is sometimes a welcome relief when you deal with constant, extreme pain, but it also causes problems of its own. Remember how difficult it is to drink, eat, talk etc. when you’ve had an injection at the dentist? Some TN patients experience that level of numbness most of the time. When your face is numb, it’s easy to burn your mouth on food and drinks that are still too hot to swallow, or to bite the inside of your cheeks or your tongue – which often leads to mouth ulcers.
Even when the nerve
doesn’t seem to be firing off
at an extreme level of pain,
you can often experience
a low level, niggling ache
that has the same
as bruising –
but no bruise to be seen
Pins and Needles
Many TN patients experience prickling sensations like pins and needles, or tingling like ants crawling on their skin
Stray Hair Sensation
Ah, my ‘favourite’ – the hair that isn’t a hair, stuck in the back of my throat or tickling the tip of my nose
Light and Sound Sensitivity
Bright lights or loud, sharp noises trigger anything from setting your teeth on edge, to extreme pain. This is why any cafe playing electro, techno, or new wave synth will have me walking straight out again.
Classic ‘extra’ with most chronic diseases is fatigue – a bone-numbing, muscle-aching, brain-fogging fatigue. It is exhausting, dealing with pain. And often patients don’t sleep well, or enough, at night, which adds to the fatigue levels in the day. It can also play havoc with your ability to concentrate.
Not every TN patient will experience all these autonomic symptoms. The trigeminal nerve is split into three branches, and if your pain is on the lower branch, along the jaw, you may get the issues with swallowing, but not with nose running or weepy eye.
Not all these symptoms are unique to TN either. Always mention all your symptoms to your doctor. Keeping a diary to record them is a good way of keeping track so you can discuss them without forgetting anything.
Our garden was a farm paddock before they put a road and houses here, and if we don’t keep the lawn under control it swiftly reverts to type and the clover runs rampant. It’s the first time I found a four-leafed clover – despite hunting for one every summer when I was a child.
Back then, I would have made a wish if I’d ever found one. (Or was that if a ladybird landed on you? Obviously yesterday was a lucky day too, as I had a ladybird land on me and crawl up my arm.)
The obvious reason is that they are rare. 1 clover in 10,000 is a four-leafer, apparently, although one study suggests
it’s nearer 1 in 5,000.
Still rare though.
So today was a lucky day.
There’s another lucky day coming up very soon – 29th FebruaryIt is rare too – once every four years, which means 1 day in 1460 is a leap day.
People born on a leap day are rare –
1 in 1,461 people are leaplings.
But rare doesn’t always mean lucky.
29th February is also International Rare Disease Day.
For people living with rare diseases, rare can be a whole load of bad luck. Many rare diseases (and there are about 7,000 you could be landed with) turn people’s lives inside out and upside down and leave them in difficult, straitened, isolated circumstances.
The US defines a rare disease as any condition that affects less than 200,000 people – or 1 in 1,500. Ironically, this is just about the same number of people born on 29th February – and I know which ratio I would rather be part of.
Every year, the last day of February is International Rare Diseases Day. Which means this year it falls on the 29th – I’m pretty sure that’s exactly why NORD selected the last day of February as their awareness day. 29th Feb is a powerful metaphor.
The purpose of International Rare Diseases Day is an “international advocacy day to bring widespread recognition of rare diseases as a global health challenge.”
When I was a kid hunting for clover, I didn’t know I had a couple of rare diseases. Now I’ve discovered I do, I know no amount of wishing on lucky symbols is going to take them away. Instead, I’ve decided to write a post explaining my conditions to help bring about some of that recognition. Today I’m looking at trigeminal neuralgia.
The trigeminal nerve is the main nerve in the face and head, providing sensation and some movement. Trigeminal Neuralgia is a chronic pain condition affecting the trigeminal nerve.
When the nerve is malfunctioning or damaged in some way, it misinterprets signals and reacts to even the mildest stimulus as if it were pain. And the pain is often excruciating.
Incidentally, trigeminal neuralgia is like four-leafed clover.
Rouughly 1 in 10,000 people have it, although if diagnosis-rates were more accurate, the incidence would probably be about 1 in 5,000 too. And anyone with trigeminal neuralgia makes lots of wishes – wishing for their medicine to work, wishing for a pain-free day, wishing for a cure. . .
Any of the following:
Episodes of severe, stabbing pain that patients often describe like lightning bolts or electric shocks.
Repeated bouts of pain lasting from seconds to minutes.
Pain attacks triggered by even mild sensations and everyday movements – such as a kiss, a light breeze, a change in temperature, chewing, swallowing, talking, smiling . . .
Episodes of repeated attacks lasting for a period of time – anything from days to years.
Episodes of constant aching and burning prior to or alongside stabbing pain.
Attacks that do not respond to over-the-counter pain killers.
Attacks that grow more frequent and severe over time.
Pain anywhere along the path of the trigeminal nerve – ear, cheek, jaw, lips, teeth, nose, eye, forehead.
Some Causes of Trigeminal Neuralgia
A compression of the nerve e.g. an artery or vein pressing against it and damaging the protective myelin – imagine an electric cable. The nerve is like the wire inside, myelin is the protective, insulation casing. When the insulation is broken, the bare wires emit electric shocks to anyone who touches them. When that bare wire is a nerve inside your head, you can’t avoid touching it.
Other conditions that cause nerve damage, such as Multiple Sclerosis, or Sjogrens Syndrome.
Injury to the trigeminal nerve, such as stroke, surgery, face and head trauma.
There are also a number of surgeries available for treating trigeminal neuralgia. Usually patients will be treated with medications first, as surgery is invasive and carries risks. But if medications are unsuccessful, then some patients can opt for surgery.
Surgeries and Procedures
MicroVascular Decompression (MVD)
This surgery is only for patients with a compression.
A teflon pad is put between the nerve and the artery which acts as a cushion to protect the nerve. Low risk, high success rate.
A small needle goes into the trigeminal nerve through the cheek. A small balloon is inserted through the needle. The balloon is inflated against the trigeminal ganglion (the joint of the three branches of the nerve). the balloon pressing against the ganglion stops pain signals transmitting to the brain.
A small needle is inserted into the cheek, and glycerol is inserted into the trigeminal nerve. The glycerol numbs the nerve so it can’t transmit pain signals.
Anaesthetic is injected through a small needle into the face. Steroid pain medication (or another medication) is injected into the trigeminal nerve through a second needle.
Gamma Knife Radiosurgery
It’s not really a knife – probably more like Dr Who’s sonic screwdriver! The patient’s head is held steady in a clamp and the gamma knife sends beams of radiation into the skull. The radiation damages the nerves to prevent them sending pain signals.
An electrode is inserted through the cheek. It is then heated and the heat damages the nerve to prevent it sending pain signals.
Peripheral Nerve Stimulator Device
A pulse generator is inserted in the chest. Electrodes run from the generator to the trigeminal nerve. A weak electric current through from the generator is applied through the electrodes to the trigeminal nerve. The electric current reduces the pain signals.
Eight to ten needles are inserted into the face at particular acupuncture points and left there for twenty to twenty-five minutes.
A needle is inserted under the skin and botox injected at trigger points on the nerve.
Nitrous oxide gas is injected through three needles into a targeted area of the trigeminal nerve. The gas forms a small ball of ice below the skin, which freezes the nerve, giving the patient temporary relief from pain.
If you have trigeminal neuralgia and medications aren’t doing the job of managing it, speak to your doctor or a neurologist to get a referral to a neurosurgeon for a proper assessment of what procedures will be best for your particular circumstances.
Life with Trigeminal Neuralgia
Some people with TN find the condition is managed successfully with medication and lifestyle changes, such as avoiding chewy foods, or with surgery.
But many more people struggle with intense pain, and the fatigue that often accompanies chronic diseases.
Some people lose their jobs, their friends, even their families due to the debilitating and disabling impact of the disease. They suffer with fatigue, anxiety and depression in addition to the physical neuralgia symptoms. Their lives become isolated and difficult.
This is the reality of many people with chronic illnesses.
It is particularly so for those with rare diseases, as it is often difficult to find other people with the same condition, or medical staff that know much about the condition. It’s so much harder to deal with anything when you feel like you are alone.
As I said before, rare doesn’t always mean lucky.
I am lucky. Not just because of ladybirds or four-leaved clovers. But because my conditions (I also have glossopharyngeal neuralgia, Sjogren’s Syndrome and Ehler’s Danlos Syndrome), certainly at present, are reasonably well managed. Pain and disability limits my life in lots of ways, but it opens it up in others, and I live a good life. And I have a strong network of love and support around me. Many people don’t.
But let’s not leave things to luck. If you know anyone with a rare disease,
even if they don’t appear to be struggling, give them a call.
Let them know you care.
And please share this post to help get “widespread recognition of rare diseases” and to join me in making 29th February less about luck and more about awareness.