Stringing a Necklace

saturnsmallBack in another century, when I still had all my milk teeth, the concept of the year 2000 loomed large in my imagination. And not just mine. It dominated schoolyard games and conversations. We knew we would all be so old by then… 34! We were certain bikes and cars would be relegated to the scrapheap, and we’d zip around everywhere in personal spaceships.

Everybody’s brains would be tuned in to a massive television screen that could read our brainwaves and transmit our thoughts at a press of a button to anyone, anywhere in the universe. I wasn’t so keen on that idea: even back then, I loved writing, and the thought that people could read my stories in my head before I’d finished them was a bit disturbing.

Holidays abroad wouldn’t mean travelling to other countries. No way. We’d be rocketing off to the moon and other planets. ‘Other’ always included planets nobody had discovered yet, that were waiting behind a curtain of spacedust for us to discover them. Although I have to admit, I set my route finder for the southern hemisphere just as often as for Saturn. In school assembly, we’d had a presentation/photo show from a seventies version of inspirational speaker.

They’d been to New Zealand, and when I heard about black sand, volcanoes, pumice stones as big as your head lying around on the beach, the Maori haka, kiwis, dense sub-tropical bush, boiling mud pools and natural hot springs, I knew I had to go there too someday.     

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boiling mud at Wai-O-tapu and black sand beaches at Taranaki

Of course, some of our imaginings about the future turned out not to be too far from reality.  I did get to New Zealand, though I conceded to travelling on a conventional aeroplane. Just in time for Christmas on the beach in 2005, my daughter and I took the plunge and emigrated from England.

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Kapiti Island from Paraparaumu

Twitter and Facebook are pretty close to that tv screen. And with the internet, we can write our blogs and share them around the world in a matter of seconds. We’re not quite zipping round in spaceships, but hey, there’s drones to do that for us, satellites relay our communications, and Elon Musk did just launch a car into space.

It turned out 34 wasn’t so old either. Or 44. Or 5… nope, not quite there yet. But old, I discovered, is a wildly fluctuating concept. I don’t plan on being it until I’m at least in my eighties. But life is full of unexpected twists and turns and it seems my body has other plans. My mind is still the curious, creative, imaginative thing it was when I was a primary school kid, but my body has aches and pains far beyond its vintage.

Six years ago, the shooting pains in my jaw, teeth gums and throat I’d been experiencing intermittently for around 40 years, spread into my ear and rest of my face, becoming extreme and permanent. I’d also developed symptoms of cluster headache, which complicated diagnosis, and a whole bunch of other symptoms that didn’t seem to fit under any particular diagnostic umbrella. After many hospital trips, tests, neurological exams, dental surgeon exams, months of research, and second opinions, the face pain was diagnosed as Trigeminal Neuralgia. necklaceOver the next few years, those other random symptoms presented a clearer picture, mainly by virtue of getting worse, and more diagnoses arrived. If rare conditions were beads, I’d have enough to string a necklace.

Chronic pain/chronic health conditions force big changes, place tight limitations on life. This is why I first started a blog. I’ve loved writing since I was very young, creating poems, stories, and novels, sending silly letters to friends. I’ve had a few published pieces amongst my poems, and won a few poetry competitions over the years. I’m focusing this year on a collection of international poems, and getting my novels publisher-ready.

Through adjusting to the reality of living with disability, I also discovered the potency of therepeutic writing. My first blog posts were thoughts on what I was dealing with, reflections on the attitudes and thoughts that helped me sustain myself. I realised too, that my posts helped sustain other people. And so I write. I write opinions, because I have a lot of them. I write poems, because everyone needs to experience the world through different eyes. I write about writing, because I have insights to offer. I write about my health conditions because it helps. I choose Verve, because pain and disability doesn’t have to mean you stop loving life.

Pretty Lights

londonOnce a month when I was little, we would visit my grandparents for the day. The drive home was always in the dark, and I’d press my nose up against the car window, staring out at squares of yellow light spilling out of windows, lines of white streetlights striping the pavements, swathes of silver sequins freckling the dark shadows of hills in the distance. The best was when we drove past water, and ribbons of light shimmied across the ripples. Or when it rained, and raindrops falling through the beam of streetlights created a dazzling corona. street-3064806_960_720Back then, those were pretty much the only colours of public lighting. Even at Christmas, only reds and greens joined the party, dancing across every street in every town we drove through. Pretty lights were my first words, on one Christmas drive home. 

The first time I saw any other colour of municipal lighting was when I was twelve, and we had moved to the north of England. The civic centre in Newcastle was always lit up at night, the whole side of the tall, concrete block curtained in a glow of pink and purple and blue, like aurora borealis in a winter sky.

These days, we’re all accustomed to see a rainbow of colour lighting up cities and towns at night, scaring off the natural light of stars. And although I’d far rather see the stars, and the aurora, I still think the lights are pretty.

When you are out tonight, many of those lights will be shades of blue and teal. Public buildings, hotels, office buildings etc. in Australia, Brazil, Canada, China, Cyprus, England, Estonia, Ireland, Mexico, New Zealand, Qatar, Scotland, Taiwan, and the USA are lighting up for October 7th. To most people, the date means nothing. Yet it’s a significant day to thousands of people around the globe. International Trigeminal Neuralgia Awareness Day.

Unless you know someone with trigeminal neuralgia, you’re unlikely to know anything about it. You’re even less likely to have heard of International Trigeminal Neuralgia Awareness Day. So buildings glowing in a fuzz of teal lights will probably just make you say pretty lights.

Trigeminal Neuralgia is a debilitating chronic pain condition. tnIt is the result of a damaged trigeminal nerve, which is responsible for movement and sensation in the face. The nerve may be compressed by an artery, or the myelin sheath, like the plastic coating on electric cables, may wear thin and bald. It may be attacked by the shingles virus, or damaged through diabetes, stroke, Sjogren’s Syndrome, Multiple Scelerosis or a head trauma. The damaged nerve misreads ordinary stimuli and movements of the face as pain. And the pain is intense, a barrage of electric shocks that can drop you to your knees, or a constant hammering ache burning the face.

It occurs in about 1/10,000 people. There is no cure, and medicinal and surgical treatments are a hit and miss affair. Most GPs do not recognise it, and even many neurolgists know little about it. Patients often experience years of extreme attacks, going back and forth to doctors and dentists (the pain often manifests as extreme toothache), having teeth removed, and receiving mis-diagnoses of psychological illness before they may be fortunate enough to encounter a doctor who recognises their symptoms.

It took nearly 40 years, two teeth extractions, several hospital stays and a second opinion from a more experienced neurologist before I was correctly diagnosed. Since then, I have assembled an array of knowledge from my own research, scouring the internet for reputable medical articles. I have joined a Facebook support group and shared information I learned. I volunteered as an admin for the group and attached page, working with others to produce accessible, accurate and useful information that people can use to help get proper and prompt diagnosis from their doctors, to manage the condition more effectively, and to explain TN to their families and friends. I know that my experience is echoed again and again throughout the world of TN patients.

There are many FB support groups for TN patients. Today, many of those people will be sharing pictures of teal ribbons, videos, information, selfies of themselves in teal clothes and accessories, pictures of their new teal awareness ribbon tattoo, or their teal-dyed hair. Oh, and pictures of buildings lit up in teal.

city-932511_960_720The buildings that light up do so because a group of TN sufferers work hard to recruit more buildings to the cause every year. They are determined to make the world recognise teal as the colour of TN, and 7th October as the day of TN awareness. It’s a lofty goal. But without effective information being shared to explain the reason behind the lights, I can’t see the point of asking buildings to wear teal ones as part of an awareness campaign. Unless the lights strobe the night sky with messages like Donate to the Facial Pain Association, or electronic billboards explain Trigeminal Neuralgia, or the building owners give every one who enters a leaflet about TN, the teal glow is nothing more than pretty lights.

 

 

Resisting Doubters & Blamers

desperate-2293377_960_720280 characters doesn’t seem much, to tell a story with any impact or punch. Fifty words, give or take a few. But right now on Twitter, there are hundreds, thousands of tweets telling stories packing a huge punch. Horrific stories, brave stories, grief-filled stories. Stories of abandonment and cruelty. Stories of shocking and unforgivable injustices. Stories of #WhyIDidntReport You may have read some yourself. You may have tweeted one. I haven’t, yet, though I have more than a few that I could.

Every one of them is about sexual assault, sexual abuse, rape. Many are about the failures of friends, families, colleagues, teachers, employers, doctors, military personnel, and anyone else who didn’t care enough to believe the victims, or to act with compassion, or to do anything in their power to help bring the perpetrator to face the proper consequences.

The tweets are stark in their simplicity and lack of detail, pared down to the bare bones of what happened in the aftermath. Snippets that show not what happened, but, exactly as the hashtag says, why the people it happened to didn’t tell. Or didn’t try to tell again. Or did tell, but telling did no good.

#WhyIDidntReport They remind me of in memoriams etched into headstones striding in rows through a graveyard. Epitaphs to the death of trust. cemetery-2246071_960_720

“The day after I was raped, his dorm mates came and told me they would kill me if I told.” 

“I did. The police just laughed in my face.” 

“I did. The police destroyed my rape kit.” 

“I was drugged and raped in the Navy. The MilitaryPolice told me if I filed a report I would be charged with adultery because my rapist was married. I would lose my benefits and face a dishonorable discharge. Let’s chalk this up to a bad choice on your part’. “

“I waited over 20 years to report my sexual abuser. Because I was 14. Because it was my hero. Because it was my priest. Because I thought I’d be expelled. Because I feared no one would believe me. Because I thought suicide was easier than telling 1 person.” 

“Because people like you [Trump] exist and make us feel ashamed of ourselves if we come forward.” 

“I told my mom. She reported it but in the end decided to stay with him because he put food on the table.”

“I was a child. He was a family member. He threatened me. I was terrified. I told my mother decades later. She didn’t believe me.”

#WhyIDidntReport follows hot on the heels of #MeToo

If you use social media at all, you’ll have seen the #MeToo campaign, and read the myriad sexual abuse incidents people shared.  You’ll have seen posts from those standing in solidarity against sex pests and sex criminals. You’ll probably also have seen the onslaught of responses from doubters and blamers, the narrow-minded and ignorant people who ask if it’s true, why did the victim not tell, or leave it so long to tell, or not tell an account that recalled every minute detail in perfect accuracy, or only tell a friend and not the police, or… or…

These people aren’t really asking a question. They don’t want to know the answer. For one thing, any cursory search of Google for the psychological impacts of trauma after sexual assaults would tell them. All they are trying to do is discredit the victim. To deny ‘it’ happened, whatever the it was. Or to blame the victim for ‘it’ happening.

And this is the behaviour that should attract the whys. Not why didn’t she/he tell, but why do people seek to blame victims? To undermine victims? To shame victims? To malign victims?

Often, the answer is obvious. Take the case of Christine Blasey-Ford’s allegations, that Brett Kavanaugh, Trump’s pick for Supreme Court, sexually assaulted her at a party, when she was 15, and he was 17. It suits the agenda of the Republicans to smear her. They want Kavanaugh in the Supreme Court for making-him-Scotus reasons. It suits Trump to throw doubt on her claims, while he emphasises Kavanaugh’s good guy qualities. He wants Kavanaugh in the Supreme Court, for keeping-him-out-of-jail reasons. So of course they will say things like if the attack on Dr. Ford was as bad as she says and [he] is a fine man with an impeccable reputation.

But what about the people who aren’t anybody in particular on twitter threads accusing Blasey-Ford of telling lies? What about the people who have sent her death threats? What about the police who laugh at victims? The military police who threaten victims. The teenage friends who threaten victims? The parents who blame victims. The siblings refuse to believe victims? The strangers who abuse and smear victims? What about them? Why do they do it?

Perhaps it is fear. Fear that they too could be raped or sexually assaulted. It happens so often. Blaming the victim weaves a fake spell of protection and righteousness around the blamer. I won’t get attacked because I don’t get drunk, or wear revealing clothes, or walk alone in a dark street.

Perhaps it is denial. Denial of an incident of sexual assault on themselves that they don’t have the emotional ability to admit or acknowledge. Refusing to believe sexual assault happens allows them to pretend it didn’t happen to themselves.

Perhaps it is wilful ignorance. Ideas that sexual assault is uncontrollable lust or passion, or that if the victim doesn’t fight back, they really wanted it, or intimate partners can’t rape their partner, or the body has ways of shutting down to prevent rape if it is really rape, or a victim can’t get pregnant from rape, or unwanted touching is not sexual assault, or victims ‘ask’ for it by the way they dress, or if it really happened they would report it, or any number of other stupid ideas and claims that show a complete lack of understanding.

Perhaps it is discomfort. Sweeping nasty truths of life under a massive carpet. It is less disturbing to believe someone might lie, than it is to believe someone might rape.

Perhaps it is guilt. They are perpetrators themelves, bent on justifying their actions and casting the victims as the villain.

Perhaps it is selfishness. Perhaps it is deliberate power games. Perhaps it is rage, hatred, jealousy. Perhaps it is lack of empathy and compassion.

Without doubt, it is an abdication of humanity. And we need to resist it. We need to hold them to account, the doubters and the blamers, we need to challenge them. Every time they suggest a victim is at fault, we need to turn their whys back on them. Why are you accusing a victim and excusing a perpetrator. Why are you such a snivelling, mean-spirited human being? Where is your heart?

 

 

How to Measure Pain

how to measure painIf only pain were as easy to measure as, say, volume. As height, or weight, or speed. Medical professionals try to quantify it. How bad is your pain on a 1 to 10 scale, with 10 being the worst pain you can imagine?

Most health professionals I have come across also add ‘childbirth counts as 10.’ This always puzzles me, as using childbirth as a standard excludes probably 70% of patients. It even manages to exclude women who have experienced childbirth, but had relatively painless ones. For me, at my most exaggerated estimate, I would only put childbirth at 6 on the scale. 4 is more accurate. Menstrual cramps were far worse than labour.

I always struggle with the ‘how bad…’ question. If I have sliced a centimetre deep gash into my finger with the bread knife, and someone says compare this to the worse pain you can imagine, I can easily imagine something much more painful; say, a starving wolf sinking its yellow, rotting fangs into the flesh of my finger and gnawing it to the bone before ripping it off at the knuckle. That would hurt way more.

Some medical professionals ask ‘How bad is your pain on a 1 to 10 scale, with 10 being the worst pain you have ever experienced?’ It’s easier to answer. A decade ago, I had gallstones, and the pain was the worst I’d ever experienced. It left me curled up in a ball, unable to function at times. So, yeh, that was a 10. But since then, I have experienced pain that rendered me virtually catatonic. If the current pain is more painful than the last pain recorded as a 10, it makes the pain scale useless. 10 is already the worst. Saying 11, or 12, or off the scale just sounds like exaggeration, and is more likely to make medical people think the patient is just a drug-seeker, or the pain is only psycho-somatic.

For those of us with a chronic pain condition, where pain is a constant companion ghosting your every footstep, these questions are particularly arbitrary and clunky. I have trigeminal neuralgia, a condition very often described by doctors and patients as the worst pain known to humankind. The trigeminal nerve, which is responsible for sensation and movement in the face, is so damaged it misreads signals and reacts with episodes of extreme pain. A soft spring breeze, for example, feels like my face is being sliced by knives.

I also have cluster headaches, a condition also often described as the worst pain known to humankind. The pain is a jack hammer drill, thumping and grinding a shaft down through my forehead, my eye and to my jaw. It is a flaying, acid flame blanket clinging to my cheek. It is a fiery, burning tennis ball trying to burst out of my eye.

Judging by the worst pain known qualifier, I guess most people would think both conditions count as a 10 on the pain scale.

But the truth is, sometimes they don’t. Just because something is described as the worst pain known, it doesn’t mean every attack, every flare up of pain is automatically at the top of the pain scale. Sometimes, my cluster headache just makes my eye hot and dry, and my cheek sting. Sometimes my TN is a dull ache, or an annoying sensation of pins and needles.

Conversely, just because a pain condition does not have worst pain known as a descriptive tag, does not mean it can’t cause episodes of pain at the top of any pain scale. I have other conditions. Sjogren’s Syndrome, which has phases of causing my joints to become stiff, inflamed and painful. Ehler’s Danlos Syndrome, which means most of my joints dislocate as often as most people do up buttons on clothes. And as easily. These two conditions don’t even feature on top ten lists of the most painful medical conditions. Yet with both these conditions, I have had episodes where I was fainting or unconscious.

The label of worst pain known is spectacularly unhelpful. It gives no useful information about the actual pain experience. And a number on a pain scale is spectacularly unhelpful, as it doesn’t convey useful information unless the scale is calibrated in a meaningful way. Description and experience of pain needs to be conveyed clearly so patients and medical staff can give the right, most effective help and treatment.

Through a Facebook support group, I often see other people also experience difficulties explaining their pain. So I decided to have a crack at creating a pain scale, with visual, colour-coded cards I’d find easy to use, and that makes sense whatever the type of pain. 

Now I feel much more confident about giving medical people a useful answer.

painscales triptych

 

 

Filling a Time Capsule

box-2842496_960_720Public places are great for people-watching and collecting gems of overheard conversations. Over lunch in a cafe the other day, I heard people on the next table discussing time capsules.

They were sharing ideas for things they could seal inside one for 30-plus years, things that would encompass who they are, what’s important to them now, in 2018.

Then my pizza came (if you ever visit Wellington, New Zealand, the Bellbird Eatery at the Dowse Art gallery probably serves the best traditional pizza in the area!), and hunger overcame curiosity about what items they planned to include.

But their conversation got me thinking, about what makes us who we are, and things we want to leave behind. I love this quote from Steven Covey, author of Seven Habits of Highly Effective People. To live, to love, to learn, to leave a legacy.” I can’t think of four better achievements to aim for in a lifetime, although I’d add “to laugh” to the list.

Blogging is a bit like a time capsule, capturing moments that reflect life as it is being lived, and standing as a witness, later, when memory might have faded.

Pretty much everything I write about is encompassed by Covey’s categories. Poems, social comment, how to live well/ cope with chronic pain. Writing about writing.

But I’m not going to hide my writing away in a musty old box buried underground for thirty years or more.

It will be right here, for anyone who cares to read it.