*Personal Post – Writer getting real – Longreads*
© All Rights Reserved Kim Koning.
The soldiers are unseen
Camouflaged in skin
Their weapons are lethal
They are elements of torture
They have captured me
Stretched out on a rack
Every muscle screams in protest
Every muscle held in a vice-like grip of agony
My jaw is locked shut
My eyes are blinded as the blades enter
My mouth is slack with pain
My fists tied down, tightly clenched
The torture has only just begun
My body fights to find an inner strength
The needles pierce the back of my neck
I am held in place, too weak to struggle
I try to call out for mercy
I am ready to confess anything
The needles enter my skull
There are hundreds of them
The prison is too bright for me to see
Shadowy figures surround my body
Slowly I feel the needles draining my veins
I try to release the bindings on my limbs
They use my body as a pincushion
I have no more strength to fight
I can feel the weakness take over
My mind tries to fight, to shout
I open my eyes
I stare into blinding white light
The needles in my skull blind me
Bile rises up from my empty insides
I search for the unseen enemy
These faceless soldiers dealing in torment
I open my eyes and see a figure before me
It looks familiar, a faint echo of disbelief
The reflection is myself
My very flesh the rack of agony
I lose hope, I lose the battle against my skin and bone
My body is my battleground, my flesh the enemy torturing me
This is my invisible reality. This is the Bell Jar that hangs suspended over my life. My Bell Jar is: Chronic Migraine. A genetic neurological disorder.
This is not something I speak about often. Partially because it is a fairly invisible illness. Partially because so many people don’t understand what the difference is between headache, migraine and then chronic migraine is. Partially because I do not like admitting vulnerability. Partially because of the inherent shame and guilt I have in having an invisible illness.
But no more shame and no more guilt. No more “invisible” illness. Living life is about embracing all of life, the good and the bad, the strengths and the vulnerabilities. This monster that turns my body into a torture chamber has been my constant companion for the last 18 years and counting. For the last 6 years this companion has become a jealous and possessive monster determined to isolate me from those who truly love me. This monster does not live under my bed or in the cupboard like the Bogey Man. This monster has taken permanent and unwelcome residence in my exploding head.
Migraine is so much more than a bad headache.
The worst migraine I have had caused me to have a seizure where I lost consciousness for over 2 hours. I didn’t even realise I had been put through a CT scan. Anyone who has had or observed a CT scan knows just how invasive and uncomfortable a procedure it is.
I have had migraine episodes where I honestly believed I was having a stroke and those around me thought I was having a stroke. This is not to far a stretch of imagination as stroke has run riot in my family and I am a high risk for stroke.
I have had migraine episodes where my fever has spiked so high that I start hallucinating.
For the last 18 years I don’t know what it is like to wake up in the morning without pain. This could explain why I have come to hate mornings as a very personal and peculiar form of torture. On top of this monster that lives in my head called Migraine, I also suffer from painsomnia. I have always had insomnia since as far back as I can remember but painsomnia is a demon I wish I could slay. Painsomnia is a specific type of insomnia caused by rolling episodes or chronic pain which in turn causes the painsomniac to live a kind of zombie experience: never quite asleep and rested, never quite fully awake and alert.
My migraines have debilitated me more times that I can count than not. They are a constant companion that sits paralytically like some gargoyle on my shoulders just waiting to attack. There is no white knight who can defend me against these attacks, no magic pill, all I can do is grit my teeth – that happens literally as my jaw goes into lock jaw mode at the worst point of the attack – and hope I pass out from the pain or the pain leaves as quick as it arrives. Unfortunately it never leaves quickly.
I cannot drive because of my particular migraines. It is unwise for a person who unpredictably blacks out periodically losing all vision to be behind a steering wheel of a moving vehicle. When my migraines attack I sometimes will get a warning sign of sorts. These warning signs are called auras. Every migraine sufferer has different auras.
Mine typically are made up of:
A sense of vertigo.
Loss of balance.
Loss of sight. ( I call it white-out because literally everything goes white before my eyes. Imagine holding up a Snow White opaque sheet in front of your eyes, a sheet so large that all you see is whiteness.)
A persistent smell of something burning. (This particular sign happens a day or two before a major attack. So for a day or two I drive everyone around me mad by constantly checking the stove or anything else that could be causing a fire. My mind is so tricked into believing there is a fire in very close vicinity to me.)
Severe pins and needles in my fingers and toes determinedly moving to complete loss of sensation in my hands and feet.
If I am talking, I slur my words and mumble rubbish as if I am drunk.
My personality changes. I become extremely short-tempered and easily irritated. Which is also when I tend to withdraw from friends and only be around the closest family members. I also experience night terrors prior to a migraine attack which leave me quite jittery.
When all of these signs happen I know I am in serious trouble and need to get somewhere safe and dark very quickly.
When the actual migraine hits me. All my senses go into overdrive. Every inch of light – both natural daylight, LCD and LED light, lamp light – becomes a cruel form of torture and pierces my skull right down to my cells. My hearing becomes extremely acute. (I already have off-the-chart acute hearing but this gets ramped up to an excruciating degree.) My sense of smell becomes an enemy, every single thing smells vile like I have stepped into my own personal hell. I lose sensation in my hands and feet but every other inch of skin on my body becomes a pincushion of pain and sensitivity. My taste becomes so acute that I cannot stomach anything more than iced cold water, my nausea also ensures that I cannot keep anything else down. Then there is the pain. There is no one word to describe this pain. The best way I can is in the poem I wrote above. The pain starts in my head but travels throughout my whole body. It hurts so much that a soft bed and soft pillow feel like a torture chamber. The torture is relentless and takes no prisoners. There is no stopping it, no pain killer strong enough to kill the pain – and I have tried all of them. I just have to hope to get through it. My greatest fear since my seizure is that this is the migraine attack that finally causes a stroke or worse.
The migraine typically lasts from 24 hours to 72 hours. Although I have had a migraine attack that lasted 16 days, this was also accompanied by a severely high fever.
When the migraine monster has finally ripped my internal cells to shreds, it slinks back to its home on my shoulders. I am left feeling like I have run an extreme marathon. I am literally bone-tired. I experience blackouts in my memory and it takes me hours to regain any alertness. I become ravenously hungry and thirsty. The respite from the attack is only temporary. Within a day or two the aura starts again and the whole cycle of torture starts all over.
I spoke earlier of Shame. Yes I admit that I have been ashamed of this monster. But the only way you can conquer the monster is to name the monster. The shame stems from a myriad of reasons. Shame because disease and disability are dirty words in most cultures but particularly in my culture where only the toughest, fittest and strongest not only survive, but succeed and thrive. Shame because I see myself as being tough, fit and strong and if I openly admit to having this invisible illness then I become vulnerable, unhealthy, abnormal. Shame because I abhor pity. I abhor when people see me at my weakest. Who doesn’t? It is one of the reasons I isolate myself from most people and social events when I get aura warning me of an attack. Shame because of what people might think of me and possibly how they would change towards me if they knew. Shame because somehow this disease makes me less; less healthy, less fit, less normal, less social, less adventurous, just less. Shame because so many people don’t understand what chronic migraine is. Shame because the term “migraine” has been overused, misdiagnosed, misunderstood and diminished.
But this week is Invisible Illness Awareness Week. This is a week when those who have invisible illnesses – and there are hundreds are millions of people – can speak out. We can step away from the Shame. We can educate people on what life with an invisible illness looks like. Because in the human experience there is not one person who is invulnerable to vulnerability, weakness, sickness and pain.
Life over the last few months has made me braver in confronting this monster and lifting the bell jar that constantly hangs over my life. Over the years I have had numerous doctors and specialists, ranging from sympathetic to apathetic, but this year I have finally found a doctor who is literally changing my life. She is able to understand my migraines and how debilitating they truly are because she herself has migraines. Just over the last few months with her help, both our research, both our efforts I am learning more things about this monster. I have also found an amazing community of people who know my monster and his brothers intimately by joining an online support group for both chronic migraine and painsomniac sufferers. Finally there are people who get this. I do not feel so alone and so isolated.
But the biggest change that has given me courage to step out from under the shroud that I use to cover my bell jar is my writing. It began with my poetry. That gave me the words to paint this monster. But it has truly broken out in my fiction. For the first time I am tackling my daily struggles through my main character in my current working series. The joys of fiction is that in the worlds I create I can turn a curse into a gift. So yes my main character suffers debilitating and disabling migraine attacks but her curse masks an extraordinary gift of insight. In one sense it is terrifying to relive my migraine attacks twice, in real life as me and on the screen/page as my main character. But it is oddly freeing too.
I have always said poetry is my salve for life and fiction is my escape. But now when in this series for the first time I am naked in my very real vulnerability, I am not holding back, my writing is more raw, more authentic, more human, more empathetic. I have never enjoyed reading fiction where the characters are “perfect”. I love and crave characters with flaws. Because in fiction as the writer you can show people, just like you and I, living with flaws and becoming better people; as the reader, you get to see that there are people just like you out there and that everyone has problems and crutches to bear. Story-telling encompasses the human condition. Story-telling explains the human condition. Story-telling celebrates the human condition.
As a writer I believe that we writers need to be truth-tellers, we need to be courageous enough to expose our own flaws and vulnerabilities to be better writers and hopefully better human beings. Sometimes it is only through being totally naked in words, in paint, in ink, in lead, in clay, in music that we can give others the courage they need to not feel so isolated in their vulnerabilities.
So here I am, this is my Bell Jar and this is my invisible illness, this is my truth but this is not my definition. I am just like you: Imperfect, vulnerable, flawed, human. I am just One of millions like me with invisible illnesses, invisible secrets. I am just One.
On Twitter, look for the #iiwk14 and #invisibleillness hashtags to find helpful information and learn more about life with invisible illnesses.
Featured image: Exploding head by Salvador Dali.
Salvador Dali famously suffered from aura migraines. Many of his paintings were inspired by these visual auras he experienced during his migraine attacks.
Understanding “The Bell Jar” by Sylvia Plath
The Bell Jar (Sylvia Plath)
The bell jar is an inverted glass jar, generally used to display an object of scientific curiosity, contain a certain kind of gas, or maintain a vacuum. For Esther, the bell jar symbolizes madness. When gripped by insanity, she feels as if she is inside an airless jar that distorts her perspective on the world and prevents her from connecting with the people around her. At the end of the novel, the bell jar has lifted, but she can sense that it still hovers over her, waiting to drop at any moment. (Excerpted from Spark Notes)
Originally posted on my personal blog: Fat Purple Figs