Sounds of Silence: TN and Tinnitus

Silence is golden – or so it’s said. I wouldn’t know. I always thought silence was a utopian exaggeration. An absence of ambient sounds with plenty of space for background noise to make itself known. A fantasy state dreamed up by children-should-be-seen-and-not-heard types as an excuse to punish children who took the ‘seen’ part of the tenet to be true.

My ears are a constant zone of noise. Sometimes, the volume varies, but the sounds never switch off. Most are gentle and wouldn’t be out of place on a CD of music for meditations (except for those random times when my ears decide to crank the decibels up to rock concert volume). If I could press a button to put the playlist of my ears on shuffle favourites, it would cycle through top hits like:

silencepinAqua Dreams – streams rippling over rounded pebbles pouring over small waterfalls,  accompanied by the haunting sound of panpipes

Marine Dreams – breathy hiss of the ebb and flow of ocean tides accompanied by the haunting sound of panpipes

Forest Dreams – undulating whispers of breezes rustling trees in full leaf accompanied by the haunting sounds of panpipes accompanied by… you guessed it, the haunting sounds of panpipes

But around a decade ago, as I reached my early forties, I started to get the playlists that sound like a soundtrack from a horror movie (or a rerun of the worst of the ’80s synth-pop that made my ears cringe as a teenager):

Kitchen Catastrophe – sharp, jangling tones of metal spoons clattering inside metal saucepans, with a backing band of fingernails scraped across old-fashioned blackboards

SeaStorm – shrill, piercing whistles of wild wind arguing with angry grumbles and rumbles of thunder

It’s only a couple of years ago that I discovered this incessant orchestra is down to a physical malfunction causing tinnitus, and not my wonky definition of silence. I was so used to it, I thought it was normal. Over the years, I’d developed techniques that helped me ignore it as much as possible, but when my trigeminal neuralgia grew worse, so did the tinnitus. One night, after we’d turned off the TV, the dishwasher had finished its cycle and the house should have been quiet, Kitchen Catastrophe started to play on repeat, at maximum volume. I announced, amongst various expletives, with some frustration, ‘I wish silence was really silent.’

silencepin3It turned out silence is actually a thing! Who knew? Well, my husband, for one. And the other 80 to 85% of the population who don’t have tinnitus. And all the people who have had brief episodes of tinnitus. And all the people… oh, lets face it, everyone except me!

It also turned out that I am one of the 15 to 20% of people that do have tinnitus. But how did I not know for so long? After all, I had heard of tinnitus, I just never connected the little knowledge I had of the condition with what I experienced. Anything I had heard talked about tinnitus being a ‘ringing in the ears’ or being loud, intrusive, strident, discordant sounds impossible to ignore.

For many years, I only ever experienced the Dreams soundtrack. There was nothing unpleasant or intrusive about those sounds, they were just there. Sometimes they got louder – for the first time when I was 13 and did an Eskimo roll in a canoe. My ears weren’t too keen on the cascade of muddy Poole Harbour water that flooded them. For months after, my personal playlist was cranked up loud enough to compete with any real music.

But the only concern then was that since my canoe trick, I had extreme earache and I couldn’t hear normal sounds, voices, music etc. Everything sounded distant, muffled, hazy, as if my head was still submerged under water. At the time, the doctor my mother took me to see explained it was temporary and entirely due to lake water getting in my ears. Tinnitus wasn’t talked about. Wearing earplugs if I kept on with canoeing was.

The doctor was right – after a few weeks, the pain and deafness passed, and after a few months the soundtrack reverted to the normal, more subdued version. At least until the next (and every) time I caught a cold, or had a plane trip.

Subsequently, as an adult any conversations I had with doctors about my ears focussed on those periods of pain and deafness. I was twenty-three the first time I flew, and despite sucking on sweets to stop the ear-popping, as I’d been advised, the pain in my ears was excruciating on both ascent and descent, and my hearing stuffed for a fortnight after each flight. This doctor decided it was buildup of earwax, and suggested I get my ears syringed each time I was going to fly.

I don’t know if it helped. I do know that I’ve taken around 40 individual flights in my life. All but the last four or five of them triggered eye-watering, knuckle-clenching bouts of sharp ear pain in-flight, and two of them triggered pain so intense that I was curled up in a ball rocking back and forth in my seat feeling like my head was going to split in half. All of them have caused a period of submerged-under-water deafness, lasting anything between four days and a fortnight. And all of them have caused an extended period of elevated volume tinnitus, lasting from weeks to months.

wing-221526_960_720When my husband first mentioned tinnitus as a possibility, it made perfect sense of the constant sounds. And as I found out more about tinnitus, I realised that all these different issues with my ears were probably connected by one thing – trigeminal neuralgia. The trigeminal nerve is responsible for sensation and movement in the face. When the nerve is damaged, all sorts of weird and whacky things occur in the face and head, on top of the pain. Tinnitus, it turns out, is one of them.

What is Tinnitus?

The sensation of hearing sound when there is none.
These phantom sounds include:
buzzing
ringing
roaring
clicking
hissing
humming

Pitch and volume may vary
It may be in one or both ears
It may be constant or intermittent

What Causes Tinnitus?

silencepin2Often tinnitus is due to another condition. Causes include:

Old-age hearing loss

Over-exposure to loud noises

Earwax build-up

Ear infections or burst eardrums

Some medicines

Excessive alcohol or caffeine

Dental/oral problems such as temporomandibular jaw disorder (TMJD)

Injury e.g whiplash, blow to the ear, head trauma

Neurological disorders such as multiple sclerosis and, yes, trigeminal neuralgia

Conditions that effect the nerves in ear

Chronic health conditions

Treating Tinnitus

The bad news is, tinnitus has no cure.
Most people only experience it as a temporary event. But around 1 to 2% of people experience it as a permanent issue. The jury is still out on medicinal treatments  – drugs won’t stop symptoms, but sometimes do reduce severity of symptoms. Incidentally, the medicines used for tinnitus are the same as used to treat trigeminal neuralgia – anti-convulsants and some anti-depressants like amitriptyline or nortriptyline.

The good news is, tinnitus can be managed.

Tinnitus is phantom noise. Real noise is effective at distracting the brain and drowning out the tinnitus. Here’s some ideas:

Music – at a moderate volume. Too loud might damage your ears which can also cause tinnitus or make it worse

TV/Radio – again, moderate volume

Audio-books

Focus on listening out for environmental sounds, like birdsong or breeze in the trees

Stress is a known exacerbator of tinnitus. Manage your stress levels with these ideas:

breathing exercises

yoga

relaxation exercises

meditation

I’ve noticed my tinnitus always seems to increase in volume when I go to bed at night. That’s probably due to the lack of other sounds to distract my brain from the phantom noises. When it’s the dream soundscapes, that’s fine – they lull me off to sleep. But if it’s the synth-pop soundtrack, not so good. I find breathing exercises are ideal then – I listen to my breathing and the exercises help me get to sleep. Win-win!

If you think you have tinnitus, do speak to your doctor. It is good to get checked out for any underlying cause. And if you have trigeminal neuralgia and were wondering if it’s also responsible for the funny sounds in your ears – I’m no doctor, but I’d say the answer is a resounding, echoing, ringing yes.

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Creating Soundscapes: 9 Ways with Words

Last night was a crap-television night. We haven’t signed up to Netflix or Lightbox, so rely on whatever offerings the free-to-air channels serve. Yesterday’s menu looked more like leftover crusts of sandwiches from lunch than carefully prepared cuisine. Often I’d just tuck right in to a book instead but last night we treated ourself to a takeaway instead – the DVD from the library type of takeaway.

If you haven’t watched the BBC miniseries Wolf Hall, based on Hilary Mantel’s books Wolf Hall and Bring Up the Bodies, you’ve a wonderful treat waiting. It portrays Thomas Cromwell’s rise from poverty to power and his enormous influence on events in England during part of Henry VIIIs reign. Although it is set during the dissolution of monasteries which Cromwell was responsible for, the story focuses most on Cromwell’s management of Henry’s divorce from Katharine of Aragon, and subsequent marriage to Anne Boleyn.

creatingsoundscapespinWe ended up binge-watching the entire series over two evenings, we were so engaged with the story. I’m not going to review it here, or give any spoilers, although I might let slip that at the end of the series, Anne Bole… no, no spoilers! Why I’m writing about the programme is because – poetry. Wolf Hall is beautifully scripted. The performances, from a stellar cast, were outstanding. The soundtrack was potent – a skillful and particularly subtle portrayal of mood and tension. This is what made me think of poetry – specifically the musicality of poetry.

Just as a music soundtrack portrays mood and tension in visual storytelling, we can use language to create a soundscape that portrays mood and tension in our writing. Common literary devices used for creating sound in writing are rhyme, and repetition of  similar and/or identical sounds. There are several good reasons to do this:

  • rhymes and repeated sound patterns are effective mnemonics, as repetition aids recall. Memorable writing makes a stronger impression on readers and makes your message more powerful
  • music evokes strong, emotive responses in people – echoing musicality with word sounds achieves a similar effect, creating a more profound response in readers
  • enhances flow and pace of writing
  • helps set mood and atmosphere

You probably remember learning some, if not all of these literary devices studying poetry in English Literature lessons at school. But they are not only used in poetry. They are effective for any writer to incorporate in any kind of writing.

Alliteration

Alliteration is repetition of the same initial letters, and the same initial sounds for words used in close proximity. Alliteration uses either vowels or consonants:

foxglove pin1.pngWinter unfolds white
lace over railway wasteland
early foxglove waits

In this haiku I wrote on a train journey after seeing a single foxglove growing beside the tracks, as if oblivious to the time of year and the thick frost, I played with sound in a couple of ways – alliteration with the w sound and assonance with the a sound.

Most tongue twisters use alliteration:
she sells sea shells on the sea shore

Many children’s books and cartoon characters use alliteration in titles and names: Mickey Mouse, Donald Duck, Sesame Street, Peppa Pig etc.

Newspaper headlines often use alliteration. Here are a couple I saw today in Stuff, an online newspaper in New Zealand:

A Remarkable Aussie Rescue

Back the Black Caps with a High Five
This headline also uses rhyme and assonance, so quite a hat trick going on here.

Assonance

seeking synonyms pinAssonance is the repetition of vowel sounds in quick succession:

I‘d like a hundred words for white –
an achromatic writer’s palette
to paint my page with winter

This was a response to a writing exercise I was given. The task? Write a poem in 24 syllables including the word achromatic. I played with both assonance in the internal sounds like this, setting up echoes between words that flow through the poem. What I love about writing tasks with tight constraints like this is the opportunity to experiment, capturing a passing thought in a tiny poem. Any excuse to play with language!

Cacophony

Cacophony is the use of words in a phrase or sentence that suggest harsh, jarring sounds:
Footsteps clattered up the stairs behind me and the echo ricocheted like gunshot in the concrete stairwell.

sharp, metallic jangles like metal spoons clattered inside steel saucepans

It is an effective tool for creating mood in a story, for example, a dark, menacing atmosphere to create fear in a story.

shiftingsands (2)Consonance

Consonance is the repetition of consonant sounds, often at the ends of words:

I had left the spares at home.
I didn’t mind. I’d always thought
a desert island would be right
up my street. I explored
while he strip-searched sand dunes.

Euphony

The opposite of cacophony, euphony is the use of words and phrases that create appealing, melodious sounds.

This is so dependent on the eye – and ear – of the beholder, but I know these beautiful lines from William Blake’s Auguries of Innocence are amongst my favourites:
“To see a world in a grain of sand
and a heaven in a wild flower
hold infinity in the palm of your hand
and eternity in an hour.”

Onomatapoeia

Words that sound like their meaning:

buzz, bang, roar, snap, zap etc

Rhyme

Words, or ends of words, that have corresponding sounds.fish&fowl

Half-Rhyme/ Slant Rhyme

Words that almost rhyme, but not quite. Often the end consonant sounds correspond, but the beginning vowel sound does not. In a fully rhyming poem, a slant rhyme is often used rather than forcing a full rhyme with distorted grammar/ word order.

When I write poems, I don’t tend to use rhyme as I prefer free verse, and the subtleties that other literary devices like alliteration etc offer. Often I find rhyme overwhelms the content in a poem. But I always like to flex my writing muscles with a challenge – and with Fish and Fowl the challenge was to write a poem in the form of a Muzdawidj (a Persian form), about animals and for children. I had a lot of fun with this!

Sibilance

Sibilance is a specific form of alliteration using soft consonants that produce a slight hissing sound, such as f, s, z, x, soft c, sh, ch, th:

Bobbing as sure as sand pipers
through sky-scraping sand dunes

All of these literary devices, while mostly associated with poetry, when used well will enhance most types of writing. Which do you already use? Which would you like to try using more? Let me know in the comments section below.

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Sanding Down and Polishing Up: redrafting short stories

Tucked into a bookshelf in my spare-room is a red cardboard envelope folder with creased corners and Ideas scrawled on the front in thick, black marker pen. Inside is a motley sheaf of papers. A4 foolscap rubs shoulders with blue Basildon Bond and old, used envelopes hold hands with pages torn from spiral-bound journalist pads. Every piece is covered with my handwriting. When it comes to the used envelopes, every centimetre is covered.

These are some of the brainwaves I’ve had for short stories. Some are skeleton frames of an idea, others are full outlines with a bonus thrown in of the opening paragraphs. One or two are complete first drafts that have languished unloved in the file waiting for some attention to polish and shine them for an audience.

Some of this writing stash might never progress beyond the scrawled notes because on rereading, it turns out to be less brainwave and more brain fart. But most of it is worth developing. And not only have those first drafts been very patient waiting for that development (one is at least 5 years old), but also there is a deadline fast approaching for a short story competition I want to enter. Who wouldn’t like the chance to win $5,000?!

sand and polish pin3Last week when I saw an advert for the competition, I pulled out one of the stories. In its first-draft shape it was like a rough-hewn piece of wood masquerading as a sculpture. This week I’ve sanded and polished it into something much more beautiful – paring bits, rewriting bits, inserting more detail or cutting irrelevant guff. It’s not finished, but I like to leave work marinating for a time before doing a final read over and edit.

While I was working on it, notes jotted in the margin in a different colour ink reminded me of ways of crafting later drafts of stories that I’d learned at a writing workshop by Vivienne Plumb, a New Zealand poet, playwright and author. She shared some great suggestions, and I have subsequently added more of my own ideas for writing short stories, such as character development, enriching themes and meanings in stories, and writing dialogue.

These are effective methods both for writing a story from scratch, and reworking subsequent drafts.

1) Read 

If you want to write short stories, read short stories.
Many of them, by different authors, in different genres.
The more you read, the more you see what works – and what doesn’t!

2) Elements 

Keep a record of what you need to consider when writing short stories, such as:

Theme and content
Form
Narrative voice
Character – POVs (point of view)
– wants, needs and motivation
– personality and behaviour
– age, lifestyle, beliefs
Plot
Conflict
Dialogue
Key events and climax
Atmosphere and mood
Setting – place and time
Imagery and symbolism
Presentation – tense, punctuation, format

3) Tools for Shaping Your Story

PRINT MEDIA

sand and polish pin2Collect shopping and library receipts other people leave behind.
Look at the items listed on them and write a brief description/ list of characteristics of the person you think would buy those items or read those books.
Develop this list into a scene for a story.
You can do this to create a character/scene for a brand new story, and/or to develop an existing story.

Collect photos of people from magazines, newspapers, online etc.
Write a two-page story (around 500 words), starting with a line of dialogue spoken by one person to another in one of the photographs.
What is the relationship between the people, what are they talking about, how are they talking to each other?
Why are they together, what are they doing?

Old knitting and dress-making patterns can also be good for this exercise.

Collect news items and use as the basis for a short story.

Holiday brochures, real estate advertising, leisure activity pamphlets, National Geographics can help you write an authentic sense of place in your story.

Hairstyle design catalogues and clothing catalogues are great sources for writing physical descriptions.

Old albums and music CDs often have detailed and creative covers. Trawl these for ideas for stories, or for developing existing stories.

Make a playlist of the soundtrack to TV programmes or films. Which of the songs would be the favourites of your characters.
Write a description of how a particular song makes you think and feel, and incorporate the passage into your story.

SOCIAL MEDIA

Use your Twitter feed or Facebook comments.
Take one comment out of context and write a different scenario with it as part of a dialogue between characters.

If, like me, you’re trying to curb hoarding habits, Google is a good substitute for many of the collections!

AUTOBIOGRAPHY

Write a short, autobiographical story of about thirty sentences.
Alternate the sentences between fact and opinion. This can help you start a story, or dig deeper into a story you’ve already written.
The first car my parents owned was a white Hillman Hunter, number plate NPB 143L
(fact – and I am amazed that 50 years later I still remember the number plate!).
The way my mother drove it, you’d think it was some kind of fierce monster (opinion).

As above, but alternate between facts and lies, or facts and wishes, or facts and dreams.

sand and polish pin4LETTER-WRITING

Write a short piece of fiction (one or two pages) about where you live.
Write it as if you are writing a letter to someone (real or imaginary) who has never visited there.
Be detailed and specific in your observations.
This will help you develop observation and descriptive skills.

Read old family letters to get ideas for your characters’ back story or plot events.

Write a letter/email from one character to another.
Is it a love letter, a DearJohn letter?
Is the character asking for something, or angry about something.
Is it a formal letter or casual?
Work what you discover from this exercise into your story.

REPEATED WORDS

This is a good exercise for second-drafts.
Write a list of the seven most frequently used words (interesting words. Exclude articles, personal pronouns, prepositions etc.).
For each word on your list, write a couple of paragraphs about each character in your story and how the word relates to them. Delve deeper into their personality, history, motivation, desires.
This helps you gain a better understanding of what you are writing.
Work these new paragraphs into your original story.

If you don’t have repeated words, list words that repeat a similar idea or theme. For example, in my story I counted travel, journey and place, as one word.

SPEECH AND ACTIONS

Reread your story and write down everything the main character says or does, or is heard and seen saying or doing.
Write down their thoughts.
Write down descriptions of the way they look.
This helps you compile a complex dossier on the character which will help you understand more deeply who you have created, and see what you may have left out.
It also helps you study the character’s motivation and find any gaps in motivation and plot.
Repeat for other characters as needed.

sand and polish pin14 PARAGRAPHS

Take four paragraphs from your story. Select those that you know need deepening and enriching.
Jot down notes on atmospheric detail, concentrating on the five senses – sight, smell, sound, taste, and touch.
Use these notes to expand your four paragraphs.
Repeat the same excercise for any other paragraphs you feel need attention.

100 SENTENCES

Write 100 short sentences about your main character.
Keep writing until you have at least 50 sentences before you pause.
Write each sentence without using the name of the character or personal pronoun to start .
Just write freeflow – no self-editing. See what comes out!
The sentences don’t need to relate to each other.

This exercise helps you learn new information about your character.

DAY IN YOUR LIFE

Think about one particular day in your life.
Write what happened – where you went, what you did, what you saw, who you met, conversations you had.
Try to write the whole day and concentrate on all the little details.
Use these details to help develop experiences for characters.

QUESTIONS AND ANSWERS

Find a part of your story you think does not work well.
Write ten questions and answers about this.
Ask challenging, probing, explicit, and imaginative questions about this section.
Now think deeply about your answers – be thorough and honest.
If you’re not sure of an answer, theorise.
Now put the questions aside and focus on your answers, weaving them into your story. They will help enrich your story.

I’d love to know what you think of these suggestions and, if you try them out, how they work for you.

Happy Writing!


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Sixteen Habits of Mind

June 1st. Here in New Zealand that means the last, colourful leaves of autumn drifting off from the trees. It means the feijoa and passionfruit crop is over for the year, and it’s time to prune the trees to replenish and make room for spring growth.

Time to buy that electric blanket to replace the one we had to chuck away a few months ago. Time to do what we’ve been promising to do for a few years, and actually cull all the junk collecting in our garage, so we can put all the stuff that’s in the spare room where it should be in the garage, and pretty up the spare room ready for our visitors coming in August.

If you think August! that’s miles away – plenty of time to get sorted by then, you haven’t seen the state of our garage. We’re renovating our house – slowly. It’s a bit like a slow-slip earthquake – the land constantly shifting beneath your feet, but so slow you don’t feel a thing – yet over years, the contours of the land changes.

Even just carrying a basket of laundry out to the tumble-dryer is to face an assault course of old doors, plumbing pipes, leftover ceramic tiles from the hall floor, half-finished stone-carving projects, a rusty, collapsed barbecue, and boxes of stuff. Boxes and boxes of stuff.

dav

I started sorting out the boxes yesterday. They contained my old lecture notes and assignments from my university degree and my teachers diploma. All my lesson plans, student assessments and teaching resources from my years teaching. The books I’d had students make, and the cards and pictures they had made for me.

While I was sorting through all this for what to keep and what to discard, I spent some time reading through my reflections on lessons and student progress. There are multiple references to Art Costa’s Habits of Mind and how I used them in the classroom.

What is Habits of Mind?

It is a philosophy of thinking that is about effective management of problematic situations, and challenges. Sixteen key behaviours were identified as fundamental:

Persisting
Thinking and communicating with clarity and precision
Managing impulsivity
Gathering data through all the senses
Listening with understanding and empathy
Creating, imagining, innovating
Thinking flexibly
Responding with wonderment and awe
Thinking about thinking (metacognition)
Striving for accuracy
Finding humour
Questioning and posing problems
Thinking interdependently
Applying past knowledge to new situations
Remaining open to continuous learning

It may sound like a complex list of behaviours to teach five year old children, but it is a lot simpler than it sounds. If children are encouraged to try again when the picture they drew didn’t turn out the way they wanted, praised for giving the tricky maths equation another go when they got it wrong first time, they learn the habit of persistence.

dav

If, instead of being asked to solve 5 + 3, they are challenged to come up with as many ways as they can of making 8, they learn to think flexibly, and strive for accuracy.

It’s a few years since I’ve been in a classroom now, but apart from the delicious sense of nostalgia reading my teaching stuff gave me, it also gave me the idea for this post.

It struck me how useful these key behaviours are in managing life with chronic pain and illness. Life with chronic illness provides daily challenges and problems, and how we approach them is critical to how well we manage to live with our conditions.

How Habits of Mind can Help

Persisting
Persistence is all about keeping going.

If your doctor is fobbing you off with evasive or unsatisfactory answers to your questions, persist – even if that means getting a second opinion.

If you had high hopes of that new breathing technique you learned relieving your pain, and it hasn’t, persist – things don’t always work first time around, or even second.

Thinking and Communicating with Clarity and Precision
Clarity and precision are your new best friends when it comes to managing chronic health conditions. When you need to explain symptoms and/or side effects to medical people,  describing them as clearly and exactly as you can will enable faster, more effective diagnosis and treatment. My pain is so bad I want to die may be how you feel emotionally, but it’s less helpful to a doctor than My pain is lancinating, intermittent, and a 9 on this pain scale:painscales triptych

You may need to request accommodations at your workplace, or describe to friends and family what you are dealing with. The clearer you speak, the easier for them to understand.

Managing impulsivity
I know, that advert promises an instant cure-all with just one sip of this elixir and one drop of that tincture, and you are desparate for help after so many failures of conventional medicine, is enticing, but really, stop and think. Ask yourself how reputable is the source, how likely is the claim, how authentic are the glowing testimonials.

Gathering data through all the senses
To reach a diagnosis, your doctors need a useful and complete set of symptoms. With many chronic illnesses, that presents a problem because symptoms are often many and varied – and seem unconnected. Your five senses can help you. For example, trigeminal neuralgia pain flares are often triggered by touch – a blast of icy wind, a soft stroke of fingers. By sound – a screech of opera singers, the clatter of supermarkets. By sight – bright sunlight, dazzling car headlights.

Listening with Understanding and Empathy
You’ll want to be on the receiving end of this, when you tell people about your condition. But you’ll also need to exercise it. When you have extreme chronic pain, it sometimes becomes difficult to care about someone who has appendicitis, or a toothache, or any other pain that is extreme, but acute. You know they will get better. And when people complain about a stubbed toe or a heavy cold, you think, so what, that’s nothing.

Understanding and empathy will stand you in good stead to continue worthwhile, caring relationships with other people.

It will also allow you to be kinder to yourself in those moments when you feel like a failure, or a burden, or guilty because your illness has made your life less than you wanted.

Creating, imagining, innovating
Creative arts are great distractions from pain. Focussing your mind on an activity stops your brain noticing the pain signals. Imagination will help you with pain management techniques like visualisation – who wouldn’t like to be able to pretend to be lying on a beach in the tropical sun, the sound of the waves lulling you to sleep? Innovation will help you think of new ways to manage your life despite limitations.

Thinking flexibly
Flexible thinking allows you to take on board other opinions and suggestions, to assess each for its merit. It allows you to adapt to new situations.

Responding with wonderment and awe
This lets you find joy in small moments, even when pain and fatigue seem to dominate your life.16habitspin2

Thinking about thinking (metacognition)
Allows you to figure out how things
like the Habits of Mind can apply to your
health situation.

Striving for accuracy
Accuracy will help you find that clarity and precision.

Finding humour
Laughter is often said to be the best medicine. Even if it can’t fix your health condition, it goes a long, long way to making things seem better.

Questioning and posing problems/Thinking interdependently
Don’t just accept what doctors say, especially if they dismiss your pain as psychological, or say there is nothing more to be done, when you know there are options they haven’t explored.

Don’t stay quiet if you don’t understand something a medical professional says.

Ask questions, write down the answers, ask for clarification.

Remaining open to continuous learning
Do your own research. Medical knowledge is a constantly shifting field. What was true 20 years ago may have changed.

Applying past knowledge to new situations
Draw on your experience and knowledge to help make decisions that can help you adapt your life to your illness.

You know the sharp sun triggers your face pain, so wear sunglasses.

You know the wind triggers your face pain, so wear a scarf.

You know a whole evening out with friends costs you  several days-worth of energy, so cut it down to an hour.

You know clearing all the junk out of the garage in one day will exhaust you, so take it a bit at a time. Slow enough that you can read all the old papers and rediscover things you’d forgotten.

Habits of Mind aren’t limited to the classroom. They are a tool for life.

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Distractions & Diversions

There’s a change in the air. The tropical, coconut lemony smell of summer has faded.  The air is thinner, clearer. Last week, the air was thick enough to wrap around us like a blanket – now it’s more like a filmy sheer curtain, with a window behind it letting in an uncomfortable draught. Most days are still warm enough for bare feet and sandals – at least after 10.am or so – and a thin cardigan or sweater over a t-shirt, but my shorts are back in the wardrobe. And by four p.m, there is a sharp edge to the air, like a freshly-sharpened knife.

Yep, it’s Autumn in my hemisphere. Halfway to winter really – our crop of feijoas and passionfruit are over, it’s dark by 6pm, our heatpump unit has been switched from air-conditioning to heating again, and the need to replace the dodgy, ten-year old electric blanket is getting urgent.

Like a smoke-alarm reacting to a fire in the house, my face detects the change in the air, and lets me know about it with as much vehemence as the smoke alarm. Autumn temperatures trigger the ever-sensitive trigeminal nerve and it reacts with a constant heavy ache along my upper and lower jaw and across my eye brow. It’s an early reminder to wear scarves to protect my face when I go outside, and to prepare for days when the southerly winds blows Antarctic chill right into our back yard.

It’s not that it gets particularly wintry here – we rarely get frosts where we live, and snow stays on the top 50 metres or so of the 500m high hills behind us. But my trigeminal nerve doesn’t care about physical manifestations of winter like snow and ice. It’s hypersensitive to any temperature fluctuation outside the range of 15 – 23/4 degrees centigrade, and hyper-hypersensitive to any temperature below 15C, and any stirring of air stronger than the gentle lick of a summer breeze.

With the exception of particularly sunshiney, wind-still days, late autumn and winter climate is crap for my face. I’ve written before about the kinds of self-help techniques people can learn for managing pain.

But one of the best ways I know of managing pain doesn’t involve any special tricks or techniques. It’s just about… your hobbies.

How can hobbies help?

davDistraction. Pain thrives when we think about it. Focussing our mind elsewhere deprives the pain of attention and consequently it hurts less. The science behind why this works is more complex than I’ve described here, but in a nutshell, we need to distract ourselves from our pain. What better way of distracting yourself than doing something you love?

I’m not suggesting that if you love going for walks but wind triggers worse pain that when you are in the midst of both a pain attack and an icy, howling gale you should go for a long walk.

But if you’re in the midst of a pain attack and curled up crying on your sofa or in your bed, even just count stripes in your wallpaper (or if you’re as bad at cleaning house as I am, count the spiders in the cobwebs on the ceiling!) to divert your mind from the pain.

Like anything worth learning, distraction techniques take time to develop and become effective. Test yourself – put on a timer for a minute, and read a book, draw a picture, whatever, just DO NOT think of your pain for the whole 60 seconds. Easy? Then increase the timer to 2 minutes, 5 minutes, 10, 20 – keep going until you don’t even need the timer any more.

It’s worth putting the effort in. Who wouldn’t want less pain?

And you know the best thing? There are no downsides, no nasty side effects. No risks.

Just time focussed on doing things you love. With less pain.

Five of My Go-To Hobbies

Writing

I’ve been writing stories and poems pretty much since I could hold a pen. I thrive on crafting and creating something meaningful from those little kernels of ideas that slide into my mind like a curl of grey smoke. Creating characters with their own problems and concerns certainly takes my mind off mine!

Writing is versatile. I get as much pleasure writing my blog posts, which are essentially information and/or opinion pieces, as I do writing fiction.

There’s therepeutic writing too. Writing a list of your fears, for example, or a letter you’ll never mail to express something you know you could never really say to someone is a powerful way of dealing with negative emotions.

Or writing just to communicate with friends you don’t see very often anymore. I’ve friends in the UK I haven’t seen for years, but we keep in touch via daft e-mails and letters.

Art/Craft

distractpinI’m quite possibly the worst ever painter when it comes to using oils, but watching oil-painting videos on you-tube and then having a go myself keeps me happy. I love trying different media, like charcoal, pen and ink, water-colours, mosaic.

And even if I don’t have a more creative project on the go, just the mindless act of slapping a coat of coloured paint on an old tyre to make raised beds for the garden is an effective distraction from pain.

Music

Even if, like me, you don’t play an instrument, putting on a CD (oops – showing my age) and listening to your favourite music is perfect distraction. TV and radio shows do the same job.

Reading

I’ve been hanging out for the latest Joanne Harris book, The Strawberry Thief. Picked it up from the library two days ago and am halfway through already. I always have a pile of books to hand, and I’ve got a library-full on my Kindle. Like writing, reading lets you get immersed in lives other than your own for a time. And if reading is physically difficult, try audio-books.

Word/Number Puzzles 

We have a bit of a ritual around breakfast in our household. Our neighbour always passes on the daily newspaper to us when she’s finished it. We get our news off the internet, but we love doing the cryptic crossword and/or the kenken puzzles together over breakfast. I save the sudoku for me for later.

These are just some of the things I can do without leaving home, or even straying far from an armchair. I haven’t included physical activities here, but excercise, even a gentle stroll around your own garden, is just as effective. Probably more – happy hormones, and all that.

You’ll have your own hobbies you can use as a distraction.
What would be your top five?

distractpin3.jpg


 

 

 

 

The Words in my Notebook

Words – I love words. Words that probe and words that play, words that delve and words that dance. Words that explain, words that explore. I’m not so keen on words that complain and words that hurt, but they do have their uses.

I have notebooks full of words. What writer doesn’t! But some of these words aren’t part of an idea for a story, or a title for an otherwise unwritten poem. They are just words I like. Savannah. Hemisphere. Perfidy (sometimes words sound so much nicer than their meanings). Or words I’ve just discovered, usually from the cryptic crosswords my husband and I do together over breakfast. Derailleur (some doodacky for changing gears on a bicycle) Legerdemain (deception, trickery) – actually, that’s not a new word to me, but I only discovered what it means yesterday.

words pinWhen my grandson was two, I did it and disgusting were his favourite words. I did it was always uttered in a high-pitched crow of pleasure rippled through with a throaty chuckle and usually accompanied by him clapping his hands together. He said it the way most children say ‘Look at me’ – when he had achieved something that made him proud, like building a complicated tower from his wooden blocks, or walking across the balance-beam at the playground.

Disgusting was high praise, each syllable drawn out and emphasised, distorted by his huge smile, his eyes wide and shining. Disss- gast- iiiing! He’d say it when he saw anything both amazing and awful – like the massive carcass of a whale washed up on the beach.

Now he is eight, and uses disgusting to describe things that are just awful – like turtles in the oceans suffocating on plastic straws humans chuck away, and seahorses swimming around with cotton-buds in their tails. He uses his words to explain to cafe owners why single-use drinking straws are a bad idea.

When his little sister was around 18 months old, her favourite words were brother (him!) and exciting. This was from something I wrote back then:

She saw some silk butterflies in a shop yesterday. Three of them perched on the ends of pencils in a plastic tub on a high shelf. 

“Look Oma, up there. Butterflies.”

butterfly-1373146_960_720“Oh, yes, three butterflies.”

“Pretty butterflies, Oma.”

“Yes, they are pretty. There’s a pink one, and a purple one…”

“And a blue one, Oma. It’s exciting.”

She’s so right. It is exciting – the speed and fluency of her language learning, the ability it gives her to experience and influence her world.

She’s six now. These days she gets more excited by real butterflies – particularly the Monarch butterflies that lay eggs on her swan plants every summer. Her vocabulary is full of words like chrysalis, cocoon, metamorphosing.

If you think about it, learning new words is a kind of metamorphosis. They help us move from one stage of understanding to another.

When my granddaughter was born was around the time I was going through a major language metamorphosis, spreading my wordwings with new medical terms and descriptions. Trigeminal Neuralgia. Glossopharyngeal Neuralgia. Geniculate and Occipital Neuralgia. Trigeminal autonomic cephelalgias. Carbemazepine, Gabapentin. Micro-vascular decompression, balloon rhyzotomy, anaesthesia dolorosa…

These words may all sound like some mysterious, magical spell to you. They did to me, at first. In fact, seven years ago I’d never even heard of most of them, much less tried to speak them. Now they trip off my tongue as lightly as butterflies.

As they are words that belong inside a neurological department or research paper, I shouldn’t be more fluent than some neurologists. But I am. I’ve been dealing with the meaning of some of them for 45 years.

The trouble is, when you have a rare disease, it is difficult to find a doctor who has much knowledge or experience of treating that disease. My neurologist had only come across 18 cases in forty years of practice. And because there were words he knew in relation to trigeminal neuralgia but that didn’t apply to me, like over sixty years old he had trouble diagnosing me properly. I was 46. But I’d been experiencing lancinating, shooting pains in my face intermittently since I was seven.

Unfortunately, during the diagnosis/discovery period, he also misapplied what knowledge he did have of trigeminal neuralgia. His favourite phrase was ‘That’s not trigeminal neuralgia’. But because of other words that applied to me – woman, middle-aged, peri-menopausal – he drew on Freud rather than fact.  He ignored the tests that suggested my face pain was organic, and ignored the test that showed my other symptoms were from another condition that often also causes neuralgias, and ignored the reports from other specialists that confirmed my face pain was neuralgia. Instead, he declared the problem was psychiatric.

One word that has always applied to me is stubborn. Persistent, determined, if you want to make it a compliment. And I knew he was wrong. So I had words with him. The words I used about him in the privacy of my home were a lot ruder than those I used to him, though I’m pretty sure he didn’t relish having words like incompetent directed at him.

In the end, a proper diagnosis took a couple of years, reams and reams of medical readings, a psychiatrist asking why the hell he’d wasted her time sending me to him, a second neurologist who had actually read medical research on trigeminal neuralgia published less than forty years ago, a locum GP who recognised a symptom that had been overlooked, a rheumatologist who followed up a statement like ‘That’s not trigeminal neuralgia’ with statements like ‘So lets find out what it is.’

So ‘not trigeminal neuralgia’ metamorphosed into other words, other conditions. Ehler’s Danlos Syndrome, Sjogren’s Syndrome, hypothyroidism. More new words blossomed from these additional diagnoses. Dislocation. Subluxation. Faulty collagen. Not new in the sense that I had never heard them, but new in that I hadn’t known they applied to me.

One word that cropped up over and over was rare. Trigeminal neuralgia is rare – around 1 person in 10,000. Ehler’s Danlos is rare – 1 person in 5,000 to 20,000, or 1 in 20,000 to 40,000, depending on the type. Sjogren’s is debatably rare – around 1 person in 1600 (generally a rare disease is defined as less than 1 person in 2,000) but it is rare to reach a diagnosis in less than six years. My Sjogren’s symptoms first flared when I was around 29

wordspinRare in a medical context is a word that often has a dual meaning. Not only does it mean something that seldom occurs but also something that is hard to diagnose, and therefore often goes undiagnosed for many years, or forever, meaning that the disease looks rarer than it is. some rare diseases, like trigeminal neuralgia, are just words medical students might have heard mentioned once back in first year at med school.

So I don’t expect doctors, even specialists like neurologists, to have come across cases of particular diseases, and instantly recognise what they see. But I do expect them to use their words better. I do expect them to listen carefully to the words their patients speak and do the necessary research if they don’t recognise a patient’s symptoms. I do expect them to listen to the words their colleagues speak. I do expect them to use words like investigate and research. I’ve realised only some of them do.

I’ve also realised just how well-informed and able to advocate for ourselves we need to be as patients. Rare diseases are complicated. They are difficult to diagnose. They are often slow to be diagnosed – I often wonder if that’s why we are called patients. We need a phenomenal amount of patience.

Some Words Patients Need to Know

Accuracy

be accurate and specific about your symptoms.
General statements too open to misinterpretation.

Believable

saying ‘worst pain in the world’ to describe TN, sounds like an exaggeration.
Root the description in a concrete example e.g. more painful than childbirth

Diary

an accurate and detailed diary of your pain/symptoms is a good record of the progression/pattern of your condition, and you don’t have to rely on memory at appointments.

Facts

your doctor needs to know the facts of how your symptoms manifest.
Being outside hurts is not helpful.
The cold air outside causes stabbing pain attacks in my cheek gives factual information.

Knowledge

don’t assume a specialist knows everything about your particular condition.
If only 1 in 2,000 or 5,000 or 10,000+ has it, how much experience is possible?
Be prepared to need a second opinion.

Questions

always ask if you’re not sure what your doctor means or why they said something, or how to manage your condition and how to take your medication etc.

Research

learn as much as you can about your condition. Get your information from reputable sources – university hospital sites, medical journals etc. Information from other patients with your condition is anecdotal – it can help you get a deeper understanding of how people experience the condition, but your doctor will need research papers.

Support

join support groups. They are a good source of friendship and understanding and shared experiences.

These aren’t all the words you’ll need, but they are a good start.

What words would you add to the notebook?


What Women Wear

Breasts are in the news again.

This time, it’s a photograph that’s the problem. A photograph of a young woman with no top on.

She sent her photo to the man she was dating. He then shared it with colleagues at the school where they both taught.

I say worked, because one of them was fired. The other was not even disciplined. This, despite the basis of the firing being that the teacher had “caused, allowed or otherwise made it possible” for the photo to be shared, and failed to take adequate precautionary measures to prevent the photo being shared. This apparently made it impossible for the teacher to be a role model to the students.

Which of the two teachers do you think was fired? The woman, who shared her photo with her boyfriend? Or the man, who shared his girlfriend’s photo with others? Which one do you think faced no consequences?

It shouldn’t be a hard question to answer.statue-2830702_960_720

Wrong Answers

Time and time again in situations like this, people take some bizarre journey of logic and morals to arrive at destination wrong answer. In this case, the young woman was fired. Because her boyfriend shared a picture of her breasts meant only for his eyes.

But breasts (and skin) keep appearing in the news – with a frequency and fervour that is out of all proportion to their size and style of covering.baby-21167_960_720

If it’s not breasts being used in public for their natural purpose (you know, to funnel nutrition into hungry babies), no matter how discreetly, it is a young woman not wearing a bra and the silhouette of nipples against her modest top being held responsible for boys behaving like apes on heat. If it’s not a private photo of bare breasts shared in trust, and passed on by a sleazy boyfriend, it’s a young woman being blamed for rape because, undies. If it’s not a young woman being told she is too busty to wear a top that touches her breasts, it’s women having their hijabs ripped of their heads by violent, hatred-filled men.

There’s this about a little girl in kindergarten whose attire had offended some over-sensitive soul’s eyes and morals. Her sartorial crime? To wear a summer dress with spaghetti straps that revealed her shoulders. Her shoulders. The problem was not a practical one, that she might get sun-burnt.  No, this five year old was told she had to keep her shoulders ‘private’. Because, you know… skin?

And this from 2015. In another kindergarten, in another town, another 5 year old was punished for the temerity of showing her shoulders.

Now, okay, I know shoulders aren’t breasts, and five year olds don’t have breasts anyway, but they’re pretty close by geographically. This kind of morality-monitoring on 5 year olds is only the beginning of what girls and women experience lifelong from self-appointed clothing-police.

Like this. Not even shoulders this time, but underwear. In Ireland, a man was acquitted of rape in part because of the defence arguing that the 17 year-old victim had been wearing a lacy thong.

woman-1987808_960_720And this, from 2017, when a teenager was told the outfit she was wearing was a violation of the school’s dress code because… well, it leaves me baffled why, but the teacher’s objection was that the girl was too “busty” to wear a long-sleeved, loose-bodied gypsy-style top. Correct me if I’m wrong, but when a body has parts that protrude even a little, anything said body is draped in is going to cling to said protrusions. Is the poor girl supposed to put some kind of metal frame inside her clothes to make sure the fabric never touches her? Or wear something so voluminous it looks like she is wearing robes, Gilead style? Like burkahs that so many westerners like to scream about Muslim women wearing?

And just today, I saw this about a school that thinks it’s a good idea to share classic art with children after having taken a black marker pen to all the naked bits apparently children should not know exist. Imagine the Mona Lisa with a thick black stripe swiped across that daring couple of inches between throat and dress neckline.

Everyone has Nipples

Last year, this about a student who had received a dressing-down from her school principal due to a dress code violation when she had dressed down for school. The violation? Not wearing a bra. A bunch of teenage boys giggling over not being able to see a bra strap through layers of clothing, then craning to cop a glimpse of a hint of nipple beneath her long, baggy shirt was considered her fault.

You know, everybody has nipples. Men too. They are for feeding babies (not men’s). They are sensitised little pleasure zones and uncalibrated temperature gauges that react to friction against fabric (bras don’t stop or even hide that) or to the cold. Men’s too. I’ve seen plenty of male nipples embossed against men’s shirts and sweaters, but I’m yet to hear men harangued for not wearing a bra.

I’d expected to at least find that the girl’s dress code violation was a specific and reasonable rule she had broken. But no. The school management reprimanded her under a coverall clause that states students clothing must not distract other students from their learning. So just like the teacher being fired for her sleazy boyfriend’s shitty actions, the shitty actions of sleazy teenage boys was made the girl’s crime.

Policing What Women Wear

Meanwhile, many people in many countries call for burkahs to be banned. Women get attacked for wearing the hijab. In Austria, Belgium, Cameroon, Chad, France, Italy, Netherlands, Niger, Republic of Congo, Spain, Switzerland and Turkey and the UK, and Belgium, woman are banned from wearing clothes that covers skin. By people who get incensed about countries like Qatar and Saudi Arabia who ban women from wearing clothes that dares to reveal skin.

Those bans are on the full burqa, under the guise of being concerns for security or for women’s freedom to choose what they wear. Oh, the irony.

Policing what women wear, or don’t wear, is the kind of behaviour that creates people who think men either don’t have to or can’t take responsibility for how they behave towards women – women, incidentally, are often dismissed as over-emotional and hormonal. Ironic. I can’t think of anything more over-emotional and hormonal than men who can’t control their sexual desires within the bounds of respect and consent and permission.

Policing women’s clothing is the kind of behaviour that creates men who think they can touch who they want, how they want and when they want.

It is the kind of behaviour that creates people who blame rape on clothing choices rather than rapists.

whatwomenwear1And I am sick of it. I’m sick of the army of the morally outraged, flinging weapons of blame and repulsion at the female body and anyone who has the temerity to live in one without shame or clothe it the way they see fit. It is patently obvious that unwelcome sexual behaviours towards women have nothing to do with the clothes we wear (If you remain unconvinced, have a look at this exhibition from Belgium of the outfits worn by rape victims).

None of these behaviours are solved by forcing women into wearing a bra, or covering up shoulders, or eschewing lacy g-strings. All it does is foster beliefs that women are the problem, women’s bodies are the problem, and men just can’t control themselves.

I’ve got news for you. Men can control themselves just fine when they choose. And if they can’t, or won’t, then blame them, hold them to account, punish them for their own actions. Stop blaming the women.

It’s time to burn our bras (unless, of course, you want to wear them) and bury nipple-nobbling, breast-bashing, skin-shaming dress codes in the smouldering ashes.

 

Why Trigeminal Neuralgia Needs to Lose its Nickname

Billy Bones. Roribug. Little Bear. Flop-Eared Houndybeast. These are some of the nicknames I have for my daughter and grandchildren. Well, the last one belonged to our dog, who had many and varied nicknames. The kids don’t have floppy ears.

I’m sure we’ll all be familiar with the concept of nicknames as affectionate (or otherwise!) terms for people and things in our lives. Usually, nicknames will carry some characteristic of the thing being named. The Millenium Bridge across the River Tyne, in Newcastle, UK, is often called The Blinking Eye, in reference to the way it looks when tilting to allow ships through.

Nicknames serve a useful purpose. They badge our emotional and intellectual relationship with people and things. Anybody who hears me referring to the UK Prime Minister as Theresa Mayhem would be in no doubt about my opinion of her.

Sometimes, people use nicknames for their chronic illnesses, or to refer to themselves. Spoonies has been coined to refer to people who deal with fatigue as a major component of their illness, based on the idea of spoons as energy units. Zebras is often used to describe people with Ehlers Danlos Syndrome, although personally I prefer Loose Women, as my friend describes those of us with joints that dislocate at a whim. Another friend, who runs a support group for people with chronic fatigue related illnesses, talks about Munted Men and Tired Tarts.

These are nicknames, to raise a smile – satirical, witty, with a touch of resignation.

But some nicknames have much darker connotations.

Type ‘trigeminal neuralgia’ into Google, and you’ll get screeds of articles calling it ‘suicide disease’. Nothing to smile about there – it’s a name we need to stop using.

Why Should We Stop Using TN’s nickname?

It’s Wrong

nickname pinI was first diagnosed with Trigeminal Neuralgia six years ago. Every few weeks since, my now 89 year old father-in-law asks me how I’m feeling.
He’s not talking about pain levels.
He’s been googling.

Google is chockfull with articles on trigeminal neuralgia. The problem is, many of those articles are chockfull of melodramatic fiction masquerading as medical fact. Like the ones that claim 25% of people with TN kill themselves within the first year, or that 26% within 2 years, or 50% within 3 years (somewhere in those articles is often a promise of a miraculous cure by an unregistered quack, but worried people often don’t recognise snakeoil when it slithers down the page in front of them. Chronically ill people often don’t either – when people are suffering and desparate, they are more susceptible to false promises).

I spend a lot of time reassuring him that I’m in no danger, and that the claims he has seen are wrong.

But how wrong?

In UK: less than half a per cent of suicides are people with TN.

There are 1 in 10,000 (6,000) suicides and 1 in 20,000 (3,000) TN patients.

Worldwide, there were 42 TN related suicides in 2004 – eight in the U.S, and 34 elsewhere. (from Understanding Trigeminal Neuralgia: TNnME)

What if all those other 34 were from the UK? 34 is 0.01% of the number of people in the UK who have trigeminal neuralgia.

In US: again, less than half a per cent of suicides are people with TN.

There are aprox 40,000 adult suicides and aprox 45,000 TN patients.

There were eight TN related suicides in the US in 2004.

Eight is 0.02% of the number of people in the US who have trigeminal neuralgia.

If there were any accuracy to the claims, then there would be between 750 to 1500 TN related suicides per year in the UK, and 11,250 to 22,500 in the US. People would notice. Research shows that people with chronic pain conditions are twice as likely to make a suicide attempt than those without. Military veterans are also twice as likely to than non-veterans. Rates for autistic people are higher than the national average. Rates for LGBTQ people are three times higher. All this shows is that people struggling with any difficult emotional burden are more likely to consider suicide than those who are not. TN is not a special case warranting a special name.

That’s just the facts, of course. And for many people, facts alone just aren’t all that persuasive. Because the name probably has an emotional connection for them. If you know one person who has taken their own life because of trigeminal neuralgia, facts and numbers become meaningless.

My opinion of the name is not based only on facts. There are plenty of emotional and ethical reasons too:

It exacerbates unhealthy emotions

Some say TN is called ‘suicide disease’ because it makes them have suicidal thoughts.

It’s not uncommon for people to experience suicidal thoughts, either from the stress/depression of living with long term pain, and/or side effects of medications.

But suicidal thoughts are not inevitable. They are not a unique feature of TN. People struggling with any longterm health challenges are more prone to them than healthy adults. Equally, people struggling with any challenging life situations are more susceptible than people whose life is moving along just swimmingly, thank you.

Using a nickname that labels TN as a hotbed for these kinds of thoughts does nothing to solve them. If anything, I suspect the need creates more of a self-fulfilling prophecy – if you have the ‘suicide disease’ and begin having suicidal thoughts, you’re more likely to think it’s just a normal inevitable facet of the condition.

It’s not inevitable.

Yet many TN patients struggle far more than warranted with depression and fear because they believe the hype of the name and those invented numbers. Depressed and frightened people become stressed people. Stress often exacerbates pain conditions. Worse pain exacerbates stress, depression and fear. so people often become locked into a carousel of negativity and emotional damage.

Suicide is illegal in many countries. Mental health issues have considerable social stigma in most countries. As a consequence, people with suicidal thoughts or intentions often feel ashamed or guilty, and endeavour to hide their feelings rather than seeking proper emotional help and support.

It’s callous

nicknamepin3TN is such a rare condition, few dentists or doctors recognise it. It is a neurological condition but even neurologists find it difficult to diagnose, and many will never come across a case. After diagnosis, patients need to take charge of their own learning to find out more. I’ve had to educate my own GPs.

Most TN patients are not medical researchers though, and wade through a minefield of poorly-researched, factually-sparse, sensationalist material (NB: Mayo Clinic, Johns Hopkins, British Medical Journal or the NHS are good sites to visit for medically accurate, evidence-based, realistic information), most of which perpetuates the mythical suicide rates for TN. To read almost everywhere that your condition is called the suicide disease because there’s a 50% chance of taking your life within 3 years is terrifying.

Describing a non-fatal health condition shows callous disregard for actual suicide victims and survivors.

Prevention programmes always advise that honest, accurate reporting is essential to help reduce suicides. A term like this is anything but honest or accurate.

It’s outdated

Trigeminal neuralgia is a condition that has been described in medical journals etc for several centuries. Describing TN as suicide disease is a historic label that predates the twentieth century.

It comes from a time when there was no viable form of treatment or relief.

Ineffective opiates were all doctors could prescribe, which did diddly-squat to relieve TN pain.

Or, by the late 1800s, surgeons could perform a crude type of brain surgery, with poor outcomes for patient relief, and 20% death rate.

Surgery was often seen as suicide:

Birks developed a classic case of trigeminal neuralgia in 1900 at age twenty-eight. His local doctor, the best in Montreal, gave him huge doses of the painkiller phenacetin but warned him against relying on opiates. Birks vainly sought relief from unnamed doctors in Philidelphia. ‘Birks, you’re a fool,’ he was told, ‘you have but two choices – opiates or suicide.’ Birks went to London, where the famous neurologist David Ferrier, determined to find something that would work, prescribed more drugs, electrotherapy, and the services of a hypnotist. Ferrier had heard of the ganglion operation but considered it, Birk remembered, ‘as a last desperate resort – a sort of polite way of committing suicide. Dr Harvey Cushing.

Harvey Cushing, known as the ‘father of modern neuroscience’, revolutionised brain surgery and neuroscience. By 1914, his pioneering work developed better outcomes for patient relief, and saw death rate from TN brain surgery drop from 20% to 0.6% – 1 person in 1,000.

Nowadays, the average death rate for TN brain surgery is 0.3% – 1 person in 2,000

The idea that surgery was a form of suicide has been obsolete for over 100 years.

The nickname should be obsolete too.

It’s melodramatic and implies no other solutions

I don’t like the term suicide disease, because it implies that suicide is the only answer to this problem, and it is not. Dr Keith Roach

The thought of suicide being the only solution is frightening.

Badging a condition as suicide disease exacerbates that fear.

It also implies that suicide is an inevitable answer. That is so far from the truth. While there is no definitive cure available for TN, there are many medical options available for the physical pain – surgery, minor surgical interventions, medications, pain management therapies and other remedies, plus continuing research into developing new treatments. There are many strategies, agencies, support groups, counsellors, self-help books etc available for helping anyone with emotional and mental health issues. Suicide is not inevitable. It is preventable.

Many people say using the nickname helps them feel ‘badass’ and in control, because the name reminds people how ‘dangerous’ TN is. They are proud to be strong enough to ‘beat the odds’.

Many people say TN kills. That’s why they use the nickname.

TN is not dangerous. It’s not life-threatening or terminal. The ‘odds’ are less than half of one per cent, remember. You only beat the odds if you were suicidal yourself. I haven’t beaten any odds by still being alive after 45+ years with TN. I’ve never been at any risk.

It is difficult enough adjusting to life with a debilitating chronic pain condition and learning how to manage it well. Using a melodramatic name that makes such an awful and irreversible solution look like the only solution piles on extra loads of unneccesary difficulty.

It’s spurious

Some TN patients justify using the nickname because they say it’s the only way to describe to other people the intensity of TN pain.

But it doesn’t describe pain.

Adjectives describe. If you’re stuck for words, a thesaurus is full of them. Here are a few that describe the pain of TN.

slicing, stabbing, jabbing

drilling, hammering, scraping

zapping, piercing, tingling

freezing, burning,

aching, throbbing

Ever had a toothache or migraine bad enough that you wanted to rip your head off? Similar experiences help to describe and explain. Can you imagine what it might feel like to be tasered, to be hacked at with an ice pick, to be electrocuted, or hit by lightning? Analogy and metaphor are effective descriptors to help people feel something they have never experienced.

Not fluent with words? A well-calibrated 1 to 10 pain scale helps describe the physical impact of pain.painscales triptych

It’s manipulative

‘Suicide disease’ sounds so much more urgent than trigeminal neuralgia, doesn’t it? More harmful and dangerous. Fatal.

Most people have never heard of trigeminal neuralgia. Most people will never experience physical pain anywhere near as extreme as trigeminal neuralgia pain. But everyone has heard about suicide. Suicide scares people, it worries people.

At best, people use the nickname from a lack of awareness: they’ve never questioned the validity of the name (nor the statistics), and never thought about how it causes distress and fear.

At worst, people use the nickname as an emotional weapon: for sympathy (my condition is so painful it’s called…), for control (stop telling about your problems – my condition is so bad it’s called…), to compare (my TN is worse than your terminal cancer, or her fibromyalgia, or his cerebral palsy, because mine’s so bad it’s called… ), as a threat (be nice to me, because my condition is so bad I’ll probably…).

Even if people don’t intentionally use the name to manipulate others, it still has that effect because it plays to insecurities and fears and untruths.

It’s a mockery

Suicide is not a joke. People take their own lives because whatever they are suffering with is beyond their capacity to cope. It is far more prevalent than the miniscule percentage as a result of TN. Suicide wrecks lives, tears families apart, leaves survivors grieving, confused and often burdened with guilt.

Calling TN suicide disease is a joke – a malicious, practical joke we should all stop playing.

What can we do to change things?

Stop using the nickname ourselves.

Ask people who use it to stop – tell them it makes you uncomfortable

Demonstrate healthy, effective ways to talk about TN.

Don’t share articles that overuse the name, or seem to sensationalise it

Don’t share articles that include the false statistics

In some cases, websites like news organisations may remove articles when asked if readers object to suspicious or false content such as the false suicide statistics for TN.

Encourage people if they are having suicidal thoughts or intentions to acknowledge them. Hiding emotions behind a nickname lets them fester. Sharing emotions with someone who cares enables them to get help and support.

Find out more about suicide and suicide prevention

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Important Note: 

If you experience suicidal thoughts or intentions, it is vital to get help. The best way is to be honest and open with people who will help. State your feelings. Discuss them and ask for assistance finding solutions. Contact your doctor or a helpline for support. You don’t need to struggle alone.

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Getting a Slice of the Cake

Change.

A single, soft-spoken syllable. Yet it’s a powerful little creature, reaching into every corner of our lives.

Sometimes it’s an invitation – welcome and exciting.

Sometimes it’s a burden – disruptive and frightening.

It’s a bundle of contradictions: progress and retreat, secret and flamboyant, havoc and harmony. It can bounce into our lives with the speed and energy of a tornado and it can dawdle and loiter.

It happens all the time.

When big or difficult changes our lives, how well we manage them depends to a large extent on our attitude and temperament – to use a writing analagy, are we plotters (needing control of every minute detail), pantsers (flying free and seeing what happens), or somewhere in between? I’ve always tended towards the pantser end of the spectrum. This too shall pass is a good mantra to embrace. It’s helped me get through difficult times.

A meaningful mantra is always a boon, but changes, particularly unwelcome changes, need more than comforting words. They need practical solutions and flexible thinking too. For me, this has never been truer than in the last five or six years. In 2012, my health conditions decided they’d had enough of skulking around in disguise, dropping occasional, too-subtle, hints of their existence. Nope, it was time, they said – conspiring together in dark corners – to launch themselves in spectacular extravaganza.

There’s no doubt, life tends to shrink into a much tinier thing than you ever envisaged when chronic illness comes knocking on your door.

cakepin3When your body refuses to behave the way it is supposed to, you’ve no choice but to adapt. Some adaptations are simple – if you’re forgetful but need to start taking regular medications, an alarm on your phone, or a daily pill-organiser box solves that problem.

Many are more challenging – how can you still maintain positive, and fulfilling relationships with friends if you have to cancel every arrangement at the last minute because fatigue and pain swamped you again? How can you maintain fitness if having a shower and putting on clothes takes a monumental effort? How can you be the parent, partner, employee you want to be, if every day sends your energy account into overdraft?

Often, with chronic illness the simple answer is, you can’t – not like you used to. You can’t, because what you wanted to be was based on your needs and capacity before you were ill. It doesn’t mean you can’t have positive, fulfilling relationships with friends, but it does mean you have to change how you interact with your friends – maybe even change your friends. Our friendships fluctuate all our lives anyway – you might be lucky enough to still have the best friend you met your first day of primary school, but there are plenty of others that will have come and gone, or changed in nature, along the way. The ones that went off to university when you took a gap year to go travelling, or the ones that were surging up their career ladder while you were knee-deep in baby nappies.

Some things are insurmountable. For me, one of those things was my job. I’d started off thinking when the doctors find the right treatment and I started to get better, I’d be able to go back to the classroom. If not full-time, maybe a four day week. Or two days. Even relief teaching, doing single days here and there each term. Usually, I’m a fast learner, but it took me a year to figure out holding down any kind of job outside of my home was not going to happen. ‘Better’ is calibrated at an entirely different rate when you have chronic illness. There is no setting for ‘not ill anymore’.

Some things only seem insurmountable. Perhaps because we are used to making most decisions based on a big picture overview. If friends ask you to go shopping with them on Saturday, yes or no generally depends on what else is in your diary (or how much is in your wallet!). The details come later.

When you have a chronic illness, the details become the decision.

Because the demands of a day shopping – the journey to get there, the crowds in the mall or on the high street, the music and air-conditioning blaring, the walking around for hours, standing around in queues etc are beyond your physical capabilities now. You want to be with your friends but too often, the decision you make is No.

Days of elevated pain and intense fatigue are a hell of a price to pay for a few hours enjoyment.

That’s the day-to-day reality though, with many chronic health conditions. Every action has a price attached.

But even when change is something that happens to us, cakepin1beyond our control and definitely against our wishes, we don’t have to be like a leaf tossed around in a gale with no way of steering its course. We can be a tree, with roots in the earth, bending and bowing before the gale, but never quite breaking. We can learn to say Yes, and focus on finding ways we can participate, instead of missing everything.

I wrote recently about going on a weekend writing retreat. Once, I would have rocked on up there at 5pm on the Friday afternoon, all synapses firing, and ready to wring every last drop of pleasure out of the weekend. That was before the internal workings of my body decided they’d had enough of skulking in the shadows, masquerading as a healthy person.  Now, if I am to get any pleasure without wringing every last drop of energy out of me, I have to get strategic.

Strategy meant figuring out the core components I wasn’t prepared to miss, and putting everything else in the ‘Maybe’ basket. Making it to the two morning workshops was top of the list, and one of the afternoon sessions.  I didn’t need to go to the welcome session, or the barbecue on the Friday evening, which would have sapped me of energy before the weekend proper kicked off. I went to the free-writing session later that evening, but I had to miss the Saturday evening open-mic session or I’d have been too exhausted to make it back again on the Sunday morning. And I left at the end of the Sunday morning workshop, instead of staying for lunch and the afternoon discussions – it was a choice between staying for the afternoon or being able to drive myself home.

Many people in chronic illness communities say they can’t go to family events or fly to a conference, or… or… or… Can’t because the body isn’t up to the task at all, or because the task will be difficult enough at the time, and the aftermath of increased pain and fatigue will be days laid-up in bed.

Yet sometimes, can’t is because we are looking at the big picture instead of the details. When we bring the details into focus, that’s when we start to see how we can participate, even if it’s only for a fraction of time.

And isn’t a fraction better than nothing at all?
If I can’t bake the whole cake any more, I’d still like to get a slice.

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Crop Circles

We know August by how yellow our bedroom at dawn,
how rich the paints nature daubs outside our window –
blue slash of sky, ribbons of hedge, poppies, gold flag of corn.

Our bedroom eyes this van Gogh view, our window
a silent watcher of that instant our eyes never capture
when the golden flag is branded by three concentric rings.

Circles are an interruption we expect this time of year,
as certain as swallows flying south in autumn.
Blind portholes to a secret place.

I like to walk in the corn,
so tall it sways
above my head.
All I see
is gold spears,
blue sky,
escape.

You can’t see the crop circles at ground level
only the shock of crushed, broken corn.
Village talk grows like mistletoe.
Whispers of alien landings.
We are divided.

He says bored teenagers, me, night winds,
a mini tornado, twisting in perfect geometry.
When wind blows, it laps at ears of corn and I think
of stones dropped in a still lake. On the surface,
ring ripples spread like village rumours.

When sunlight torches water, it makes a window
to below, and you can watch
small pebbles
somersault
and
sink.

Seven league boots, I say, someone night-walking.
On tiptoe so they don’t disturb us sleeping.
Sometimes my mouth is an open window to ideas
best kept secret. His mouth shapes a capital O,
shimmers a smirk. When he laughs, I hear seagulls.

But when he is gone, boy-racing his quad bike
in determined swipes over the back field
and I am up to my elbows in pigswill,
I try stepping large, balanced on my toes.

I wonder how far is seven leagues,
and where my other foot might fall?

 

First published in a fine lineNew Zealand Poetry Society magazine, March 2019

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