A Definition of Insecurity

The Cluster

A definition of insecurity on the eve of my next book, Insecure going live.

This is the rhythm of a cluster headache.

And old, old enemy who comes too often, makes extreme selfish demands and overstays; then returns too soon.

No reason.

No cure.

No bloody manners.

No warning, unless it’s daylight and you’re conscious and not distracted and you pick that tightness in the jaw, that stiffness in the neck.  But those things can come from other parts of your day, your life, so sneaky, hard to pick them for what they are, the early signs of the vice that grips your head, your face, the sludge that invades your brain.

No warning if your start time kicks off in the middle of the night.

No point to a warning anyway, there’s no effective treatment.  No specifically tailored medication.  Only the stuff that’s used for regular migraines.  You try it.  Episodic migraine meds can deaden the effect, and on a rare occasion, kill the single incidence, very rarely the whole cycle.  Note the rare.

For you, most often, it’s wake in pain, neck crooked forward in a spasm, head the size of the universe and twice as heavy, eyes shoved so far back into the swollen puffy mess they are useless slits.  Eyelids hurt, face pains.  Some sadistic bastard, who knows you don’t want this, has taken a hot jagged icepick to one side of your cranium and left it there for giggles.  Every few seconds he twists it trying to dig your eyeball out, like the pit in a fruit.  He’s in no hurry, he can take all day with it.

It’s better to be upright than laying down, moving around than still.  Unless it’s impossible to stay upright.  It’s usually impossible to sleep through it.

Your eyes tear.  Your gut cramps.  You’re thirsty and dizzy.  It’s hard to hold your head up because your neck is so rigid.  Voice is a gravel growl, no volume; it’s fitting, your whole life is a scream after all.  It’s too bright, too loud, too irritating, too complicated.

Can’t tie a shoelace.  Can’t recite your own phone number.  Forget the name for things.  What’s the black animal’s name?  The one on the end of the bed looking at you like you’ve offended him.  That piece of metal you use to open the front door, what’s the called again?

You make up a word so people don’t think you’re mad.  The first time you lose words inside a cluster it freaks you out worse than the icepick.  You need words.  You make your living from them.  Not having them is frightening.

If you’ve made it upright and you’re trying to write you have to leave blanks where the blanks are.  He Xed the X and when she looked at him like he was a disappointment, he Xed.  You have to come back and fill in the blanks when you have your brain online again.

You have to avoid people so you don’t have to talk because you might not be able to form a coherent sentence.  You have to avoid making key decisions.  You may not make the best one.

You’re bloody cranky too.  Angrier and angrier the longer the cycle.  This is a waste of time, of a good day, of productive hours, of your relationships and ambitions.  Of your life.

Your brain does come back.  From hell to purgatory.  In a couple of hours, two, four, eight, if you’re lucky.  So you stagger through those hours faking being alive knowing you’ll get a few hours to catch up what you missed out on.  To call the cat, finish the sentence, tie the shoelace.

If you’re lucky you get half a day or an evening to make up time but you’re on a deadline because the thing with a cluster is, it’s a cycle.  It’s not one headache, it’s a continuous stream of them, day after day after day, happening at the same time, lasting the same time, until you wake one day with the headache hangover, limp and sluggish, and it’s done with you.

For the moment.

So don’t get too cocky.

It’ll be back.

Whenever.

On the best of days you graduate out of purgatory into heaven, and you’re clear.  It’s no longer too bright.  You could be an astrophysicist your brain is so quick, you could solve world peace.  Everything is easy again and you have so much more energy.  Colleagues fear you far more in your post cluster brilliance, than they do when you’re on autopilot, because you are boundless, unstoppable.

Those days are the diamonds.  You’ve stopped having those intense bounce back days, but you remember what they felt like, how they shone.  Post cluster you were on a natural high.

This whole thing happens so often you get good at faking.  You learn how to triage your day.  It’s a sport of extreme prioritisation, of rampant inconsistency.  You get so good at it most people don’t know you’re not really there unless they’re watching you carefully.  Your pupils are pinpricks, they could see that, but they don’t.  Your reaction time is slow or you’re ponderous but they don’t remark.  That voice, you’ve been talking too much.  You’re pale and quiet, and sometimes over-heated but everyone is busy and you’re good a deflecting.

This happens so often that you stop even mentioning it.  You appear to function so it can’t be that bad.  And it’s just a headache after all so what are you whinging about?

This whole bad side-show starts in your early twenties with weekend headaches.  The first long cycle was ten weeks.  The second was three months.  That became the standard.  You’d have long periods where you could almost forget you got these headaches.  But when they came, there was no trigger, no inciting incident, no ground zero event, they just came and they outstayed any reasonable welcome, leaving you shipwrecked when they left.

You never missed a day of work, but during a cycle you came home and died, too done in by the pain, by the juggling of your disability and return to ability, to eat, to shower to be.

Then there was that time the cluster didn’t end.  It didn’t end bar a few days here and there, except for a surprising three week period, for four years.  For four years you had that painful wake up call, that icepick, that vice, that daily juggle of surviving the foggy hours to grab hold of the clear ones.

That drove you back to the neurologist who’d already diagnosed you and told you there was no direct cure.  He told you cluster headaches were a form of brain damage, something wrong with the circadian rhythm section of the band that’s supposed to play the song of your life.  That band is not supposed to break up. The only potential cure was to treat you for another condition you didn’t have such as low blood pressure or depression.

You could well be depressed, but you’re not.  Just cranky.  Just tired.  There would be a cure for this if enough people suffered from it.  It’s not a big enough market for drug companies to invest in.  No one dies directly from it.  (Indirectly is another story and not for now).  It’s the kind of brain disorder they’ll find a cure for by accident when they’re looking to cure something else altogether.

Since you first saw the smartest man in the room, with the most annoying bedside manner, the treatment he’d favoured for years, has been shown to cause blindness.  This was a trial cure you’d rejected, against his advice, deciding to tough it out instead.

Thank God.

This time around you’re desperate and opted for having your blood pressure lowered and ending up feeling like Jabba the Hut.  You stacked on the weight, you could hardly keep your slits for eyes open and get through the day, you were so lacking in energy.  Your pulse beat in your ear keeping you awake at night, and you were breathless all the time.  You lost your fitness in a matter of weeks.  Your hair started falling out.

You still had the cluster and you got no relief at all from the episodic migraine meds.

You were miserable.

You had to fight to come off beta blockers, and you declined another go on that particular roundabout of trying to shock your brain by treating you for a condition you didn’t have.

You went back to what you know best.  Faking it, fighting it, avoiding, catching up, taking advantage of the clear hours.

You don’t medicate because there’s no point.  You just get through, trying to hold the dread at bay, trying to seize the moments of clarity and ease.  And that works in an odd way.

Then as suddenly as it arrived, the four year cluster stopped.  It put you on your back in bed for a fifteen hour stretch, wishing if was next year, and then it left.  Rudely, unexpectedly, with no notice of it’s intentions.

It took a few days to realise it was gone.  You operated in an extended hangover, junior zombie state.

You approached the next few weeks like you’re walking on a tightrope.  One false move and you’d plummet to certain destruction.  You have a few clear days in a row, and then a few more and the clusters still come but they don’t barge in and stay, they just come for breakfast and they’re gone by dinner.

Something has changed.  All by itself.  No warning.  No notice of intent.  No way to know what will come next.

You have a whole month clear.  Then a bunch of short clusters.  You can work with that.

You have another month clear.  You’re starting to feel hopeful this demon that’s taken residence inside  is going to let you live without having to strategise and fight for the privilege.

You’re starting to hope that sheer plodding persistence has bored it into taking off for good.

If the band has got back together again for a reunion tour.

Maybe.

If you’re lucky.

But it’s not as easy as that.  Every time you get a tight jaw, a sharp poker up your neck to the back of your brain. you wonder.

Hello you miserable mongrel, you marauding thief, how long are you staying this time?  How much of me are you going to try to eviscerate for no good reason?  How long do I have to endure you to end you?

A few hours, a day, a few days, a few weeks.  Four years.

I’m writing this in the purgatory of a post cluster that stole my day in the night.  I’ve got my words back and I can work despite the lingering halo of pain and tension.

I’m on a deadline and I have no way of catching it up because I can’t be sure I won’t make a mistake, I’m not clear enough to get it right and I don’t want to settle for good enough.

I don’t know if tomorrow will be different, or if it will be groundhog day.

I can’t know.

I can’t plan except on a contingent basis.  If this.  If that.

I have to take what I’m given and use it the best way I can.

It’s probably no surprise to learn I earned money for years as a crisis manager.

My latest book, Insecure goes live on March 22^nd.

There’s not a single headache in it, the characters are insecure for their own reasons, fearing their own dreams and battling expectations.

I’m hoping it’s more entertaining than a cluster headache.  

You can get it where all good ebooks are sold.