Narwhal

My lungs hungry for air, my eyes sticky and heavy, laden with sleepless restlessness and a pain so bone deep it feels like my marrow is aching.  I peer through the blurry constellation of floaters that whisp across my vision in the dark night room where the curtains hold back the midday heat and glare of newly sharpened knives, desperately trying to reach their target of my vision, like a knife thrower finding the balloon.

This is the way I wake every day. It is why seventeen years have passed and still I feel like I am the girl who just fell ill and believed confidently she would recover quickly.  Instead my life rolled slowly down a hill with little peaks, until it found the massive decline and sped recklessly towards every more endangering moments. When suddenly days were filled with such intense suffering my body began to accept that adapting to the new and life threatening addition of symptoms was the path of least resistence.  

Doctors were useless, except those who braved the special subset of uncharted or at the least secretly charted treatment of this confounding curiosity - like the long believed extinct Narwhal - passing newly discovered research and anecdotal information amongst a network of explorers. The rest, those outside the network live in a state of cognitiive dissonance believeing the impossibility of the existence of such a combination of curious symptoms were nothing more than a psychological failing of the patient and the treating doctors.  While the doctors who knew better, risked reputation, invested fully in unmasking the reality of us, their curiosities.

It became tiring gambling constantly on the hopes that some new specialist may have access to the network of explorers quietly accumulating knowledge and occasionally sneaking research papers out into the public, placed in the revered Lancet. Yet still ignored by pathologists and the medical profession at large who sought to cage the Narwhal, like patients with inaccurate classifications, easing their own egos, for they dare not imagine a beast of fable when they could instead more easily concern themselves with easy to treat classifications, however ill fitting.

So today I sit here, my gray matter aged some ten to fifteen years past my bioloical age, my youth stolen, and I wonder have I lived in denial for this long.  Patiently waiting for some explorer to find me befrore I became extinct? Although truth be told there was not chance of extinction for there are too many of us and we're nearing pandemic levels.

The realisation was and is earth shattering.  I am on a ledge psychologically dealing with an age that befits someone who has a history of life, of moments filled with love, joy, loss, happiness, sadnes, grief, choices in career, partners, children, buying homes and cars, instead I'm dealing with the most intense heart ache I have ever felt.  This time stolen from me, this life of memories and connections, the alientation that taunts me and the bravery it took to get here feels like a rising tide full of flotsam and jetsam.  When the ledge slides into the sea I hang on perilously to the pieces of who I used to be and yet imagine letting go and just drifting to find myself.

Who am I?  I am not illness. And despite knowing my classificaiton by the explorers as being a Narwhal, which is scientifically astounding, I don't want to hear that anymore.  Simply put I wish to be normal.  Not some curiosity that fits nowhere comfortably. 

My body betrays my understanding of who I am.  If I look in the mirror I find myself wondering what happened to me.  Who loves me?  Can I love that reflection of a person some seventeen years older than my inner voice knows me to be? How did I earn all these lines and suddenly gain weight, despite eating so well?  It is like in the night someone slipped on prosthetics, a suit if you may of what I would look like if I aged while ill.  I find myself reflected back a portrait of someone who looks like they've lived nearly two decades when really I spend every moment trying to breathe my way through another undulating wave of pain and exhaustion.

The assault on my system has been too much.  Without access to appropriate care my body has misfired and no longer functions normally. The comounding of one failure of a function upon another, has led it to become this curiosity.  And daily I am left wondering if I alone have to find the answer to my own riddle. 

When I finally move on the bed, a thirst so all encompassing overwhelms me.  It is as though I have been in the desert for days without water. My legs refuse to do as they're told, my face is red and burns with chronic sinus infection, my hair greasy as my hormones surge unhealthily, my weight would suggest my once athletic body had taken to snorting sugar when the opposite is true.  Pain is an octopus of tendrils starting with an intense migraine and working through my nervous system, so that every nerve is on fire, my teeth and jaw aches. I fear the accidental contact of neurotoxins (wrapped so alluringly in advertisers brainwashing packaging of 'lasting fresh smells' of body sprays and products) lest I stop breathing, after seizing, getting paralysed, convulsing and eventually my airways closing in an ever increasing beat of bronchial spasms.

Yet I get up every day and find my way to the lounge/day bed where I sit and half zombie, half Narwhal.  I imagine life in colour, the giggles of children running around my house as my partner mows the lawn, the windows thrown open and sunlight making patterns through the greenery that thrives in the light.  Where I am worrying if I have all the ingredients for the dinner we planned and if the kids are too hyperactive, then basking in the moment, before realising it was all a delusion. I am still on my day bed unable to move, burning up, yet suffering through the heat as my back aches from moving in a slightly different way to the way I normally move. I can't concentrate on which sensation is most pressing because there's too many.  But I feel the tears as they stream down my face soothing my burning cheeks and yet failing to lighten my heart's load.

I am Amara aka Marzi and I have ME, MCS, TVBD and so on and so forth. I can't breathe properly, tend to myself, shower myself, feed or shop for myself. My treatment is sporadic and dependant on the love of my fellow travelers. We are the watchers, the voyeurs of life and we hold each other up. I am a warrior and my light burns bright because despite it all, I am not defeated, nor will I drown but I have fallen deeply into a ditch.  So I need you to help me get out of here.  

Please weave a ladder of love by donating a strand of healing light, through donations, sharing my story, my writing, my spirit, by being another beacon in our network of watchers readying the charge to break free of the cages we were never meant to be placed in.  I am what life carved of me, an ethereal beautiful statue whose spirit is trapped inside.  Come bring your chisels and get me out of here.  If I am going to survive this, I need you to help me.  Love me and see me joyous, glowing and well.   And so it will be.  For the Narwhal thrives despite it's hunters and ignorant disbelievers.  I am a Narwhal.

"Our hope now is to help her have a life.  If you want to help please go to:

https://www.facebook.com/Aid4Amara/ or https://www.gofundme.com/a-life-for-marzi and help us get her there.

Please share widely and donate as much or as little as you can. We thank you for following her journey and supporting us and The Amara Campbell Foundation  :)

💛 Aid 4 Amara team 💛
e aid4amara@gmail.com
b lifelikethis-me.blogspot.com
v https://youtube.com/channel/UCyOCaXCd9DpN7ChzFR3UbFQ
d PayPal aid4amara@gmail.com
   Bank Westpac A Campbell
   BSB 734083 ACC 629164"

Stitched Up

Someone took an ice cream scoop and scooped out all of me. Hollowed me out and made me an empty, echoing, lonely space.

With slight of hand while busy torturing me in new and ingenius ways, upping the ante every single day I didn't notice the stitching. I recognised how trapped I was feeling but I did not notice my loss of movement.

The further I crawled inwards away from the light, away from the pain, away from the feelings of being less than, the faster they stitched. So every time I wanted to peep out and try to reach for someone, I would have to contort myself into painful positions just to squeeze my way out of the opening.

Slowly I was being cocooned in a huge sack of misery, hollowed out so my soul clattered around sadly whispering for company in an empty vessel. The hole has become so small no light or love gets in any more.

I wish I had known to bring matches or a torch. I can't see my hand in front of my face at night, the gloom of pain is so murky and thick like soup it fills the hollows and wisps out of the bag letting out little puffs of sighs.

Alone I am. No longer certain anyone can see me. I've been completely stitched up. Trapped in a bag of misery. Sighs are my only breeze. My soul has become embittered, too much time trapped alone has made me grow prickles and that which is not hollowed has puddled into soft gooey mess of over-sensitivity. All raw nerves, wrapped in a sack, still through the hole comes the pain. With the covering stripped off each nerve so that I am a huge network of beacons for the collective energy, it all brushes over my nerves and even thoughts and whispers are torturous.

Life devolved to a prickle, in a sad sack, sighing like the breeze. No one will find me. Perhaps it's best I give in and stay in the dark. But I would miss the world. So I will hibernate instead and hope to grow new skin, cover my nerves and stop feeling everything. I may love abundantly but I need to protect myself from absorbing the energy of those around me. Mine is enough. So I will re-emerge in the spring a prickle-less bundle of new born love and joy having shed all the sads and pain. Escaped and reborn, tearing at the stitches of the darkened pocket where they trapped me, emerging anew full of abundant light, joy and belief in the possibility of anything and everything.

Paper

I am flat. So flat I am paper, brittle and dry, devoid of life. Just here. Existing. I want to abundant colourful life. Alas all I do is sit here unmoving, an invisible, ordinary nothingness that has been allocated to isolation. I am just a dry old piece of paper waiting for the rubbish collection, the fussied tidy up, here where the fan blew me down to act as a mat for dust bunnies. I am a flat white nothingness a void of existence.

Fold me into a paper plane and throw me through the blue skies. Let me soar and feel the wind rush under my little paper wings. Let me feel the glory of the sun on my wings and the simple beauty of the world as I dive softly to settle into the dewy glistening grass as I am quickly surrounded by an army of insects seeking shelter and food.

Use your delicate, creative hands to fold me into a paper crane and hang me from a mobile so I dangle over your gorgeous tiny human, fat fingers and bright eyes twinkling, melodious giggles erupting as the breeze blows me in patterns above the cot.

Write your grandmother's favourite chocolate cake recipe on me in your easy drawling handwriting, the text unevenly spaced and sweetly messy. Then take me to the shop. Pull me from your cluttered darkened bag where I was wedged between your lip gloss and the keys and let me see and smell the people, the foods as you trail up the aisle hunting ingredients among the blustering chorus of activity.

Little human, fold me in your best most perfect alignment of creases, four times to shape a card and use your sweet little hands, covered in biscuit crumbs to draw art for your aunty for her birthday. Make me into a treasured message of love. Coloured crayons textured on my bare dry skin, tattoos of childhood thoughts forever etched artistry.

Artist, sketch your most favourite place on my skin, send me into a world you have created by using simple pencil and pen strokes before layering me with water colour and making me art to be stared at and adored.

Author unbridle your dreams and unblock your consciousness, let your subconscious flow and write the most profound message your soul yearns to share. Watch it flow naturally without pause across my skin, your words changing the future for those who read it.

Gasp, someone has scooped me up. This could be it. Oh please don't let it be the bin. See the beauty and infinite possibility in the blank canvas you hold casually in your hands. Oh I am not paper. I am me again. The paralysis has passed and my communion with the floor while immovable and locked in, has come unstuck. Now I am back where I started.

I will not fly, or watch over your babeling. I will not be carried to the shop with a treasured recipe etched on me, I will not carry the wishes of a little human on her aunties birthday, I will not live in artist's world or carry the words meant to change the futures of those who read me.

I am just paper again. Flat. Unnoticed. But now I am crumpled, dirty and I have several tears in my skin. There is that. I have character.

♥ Love ♥

I have breathed out and released some of the bleakness that has completely overtaken my body in dark shadowy patches of intense sorrow and grief. So I am going to try to breathe in the light.

For there is so much beautiful, dazzling, uncovered treasure in my life. Despite all that ails me I have a network that stretches like a twinkling, glistening, barely visible spider web surrounding the world like a beautiful orb of criss crossing love. Perched upon it are not captured or wounded beings, but beloved connections who together knit the web and use it like a hammock to rest upon when their day gets too weary. We each rely on those connections, feeling the vibrations of love from across the globe even when we are unable to speak.

So to those who have woven the beautiful web which works as a safe place to rest my head and dream of swinging madly about in joyous tumbles, I thank you. To those who I have uncovered in the rubble and ruin of life, in the dark heavy sorrow, whose love has forged connections between me and other broken winged birds, some now angels, I adore you and whisper softly always to your faintly beating heart, “I love you, I love you, I love you”.

To my beloved healthy friends who share dazzling moments past with me, jewels in my memory that shine bright when they're tended to and polished up to focus into perfect clarity, I love you for standing by me, holding our shared jewelled memories like keepsakes, protecting them for me, keeping them in your hearts, ever present so you do not allow me to forget who I was and who I can be.

For my family, some of whom are not blood, but I have chosen to adopt in my closest network of glistening connections to share my resting space, you see both sides of me. You see my grace and strength and joy and you see the depths of my struggle and how I fight so very hard to hang on to my sanity, to war with the bugs that are forever inching closer to a coup in my brain. You keep me fighting, you fuel the fury that allows me to control the bugs and prevent them overtaking my very being. And most importantly, you love me despite the days in which I cannot summon grace, the days in which I lose the battle and the bugs take over, the days in which I am so deep in despair and desolation I drag you down. Your love is what love should be. The love of imperfect perfection, the love without conditions, the forgiving love, the understanding love, the momentarily angry but quickly forgiven love, the true and gritty messy love of truly seeing each other and accepting each other's faults love.  The real love, not the manufactured candy love we've been sold, the messy, ugly, gritty, beautifully tainted, imperfect, perfect love.

And lastly, to those of you who witness my suffering, who do not turn away, who stand by me quietly unwavering, it is you who inspires me. You who patiently waits for the moment when I can properly communicate, you who sees me despite my inability to fully fulfil myself, you who supports and loves me without conditions, you are all the best of me. All the loves of my lives.

Thank you for the love that fuels my fight.

NB please click on the image to be taken to the website of media artist who created this meme quoting Molly Friedenfeld.

Tiny human in the mist

Little by little it crept up on me. I feel as vulnerable as an innocent tiny human lost in the forest as the the light of day fades out and a dark and menacing mist curls its way towards me around the trees, enveloping the trunks at eye height. The mist is primeval, it radiates an intense and threatening presence and I feel myself panicked, my little heart beating like a bird fluttering uselessly entrapped in a too small cage, the bars painfully catching its wings.

Stuck in my throat is an aching lump. Droplets dwell in my tear ducts at the ready, as though all they need is to hear their marching orders, “Get in formation. March down her face. No that's not enough, run, gush like a waterfall, drench that face.”

My heart physically hurts. It feels engorged, overloaded with the injustice, loss and terror. The noise of the world feel like painful barbs, blows to my body and my brain, the light feels like the sun has moved closer to earth and burns my retina with the slightest sliver of yellow that stripes my floor if the curtain parts. My brain hurts, my skull feels tight around my head, the skin taut and pinched. The mist has overtaken the defenceless tiny human that lives inside me. She is trapped, like an ancient faerie tale, in a twisted land, dark, cold and alone and waiting for someone to save her.

But nobody comes. Nobody has heard her cries. Maybe not even me. I have steeled myself against her angst and terror filled psyche. Allowing myself only to pay attention to the now. This very moment. Because it's the only way I know how to get through. And yet something has broken, perhaps she broke through the mist I don't know, but now I hear her and she's been tugging on my heart, wrenching at my gut, choking my throat and welling my eyes up just trying to get me to listen to her and speak her truth.

She is me. The part of me that I don't let out because it feels like letting go to her will be impossible to recover from. I am terrified. Every day my life worsens and I don't know how to sustain the courage to keep facing the next moment, let alone tomorrow. I do not want you to think that I am going anywhere. I will not leave. But I cannot quiet the inner voice of the wise tiny human who lives in all of us. She is unfiltered and unwilling or too naïve to participate in pretence.

Sunday night I was so incredibly ill I thought I might die. And I know the difference between dying and feeling deathly, I've had my flirtations with death, the real ones, so I can differentiate. I have had a migraine for weeks, months even, but this was different. This was like my head was going to come off. And I had a vomiting and gastro bug picked up from a friend who had visited her friend in hospital – I should have thought, should have realised – never again post hospital visits. Then (and warning boys or the squeamish you may want to skip to the next paragraph now) I had my period. But not in the normal sense, this was previously a fortnightly visit that had not come to visit for months and it was doing a hell of a lot of catching up. It was all dark and all clots and all excruciating. Even the slightest loss of blood for me is dangerously weakening, this together with everything else and I had my perfect storm. Then I got chest pains like I've never experienced before. Intense and wrong. I felt wrong. So not right. So far removed from okay.

The paramedics came and in the dark comedy that is my life, my cat Tobey escaped for an adventure so Ma and my Dad were running around the cul-de-sac at three am attempting to herd him back into the house. Meanwhile the paramedics entered the house without noticing the prominent sign warning NO PERFUME. And Jock – the Northern Irishman, oh the irony – had been marinating in cheap cologne for three days. So he nearly killed, an already nearly dead me with his enormous cloud of neuro toxins. I had a massive seizure, got paralysed and followed it up with a sterling finish of an asthma attack.

Since it's Ekka time, the hospital was filled to the brim with the fluey, infectious and gunky sick people. I couldn't risk it. So I allowed my tear ducts to give the order and and my face was wet with streamed tears at the ridiculousness of the situation. Me, people like me, we need help the most. And yet I cannot get it. Thank you government. Thank you health system. You just may kill me yet.

Rochelle, the exceptionally kind paramedic who had thankfully refrained from marinating in her own perfume bath, told me I was the sickest and funniest patient she'd ever had the pleasure of meeting.

Ma and I had giggled our way to and from the toilet while I drooped about like a wilted flower on the walker, unable to control my muscles or limbs and she unable to control the walker.

Maybe it's Robin Williams death that has the tiny human in me yelling so loudly. We're not so different me and him. As far as human beings go. I hide my pain behind a layer of humour. He did the same. But I'm tired.

And interspersed between the dark had been moments of laughter and lightness, but like dashes that conjoin and become an unbroken line, the darkness has stitched itself together and the mist is merciless. So I think I will just stop fighting for today, and we will go to sleep under the mist, pull it over our heads like a blanket, rest on the forest floor and let the world work out its shit. I've got enough to deal with. But if you happen to hear my inner tiny human's cries, please don't ignore her. She was very brave to fight her way out.

The Lost Language

I don't know what the word is for when you only speak one language. But that is me. Except I used to know another. I used to be tactile. To be affectionate. I would talk expressively and often touch the person with whom I was communicating.

My heart has always loved deeply and quickly and recklessly. Or perhaps not recklessly because I have an innate and unquestionable sense of people. My feel for others is so intuitive and natural it is like breathing. Just moments with someone and I can judge their essence and it's compatibility with mine.

For as long as I can remember I have been open, gregarious and extroverted. It is the strangest thing to take someone so open, so tactile, so loving - with networks of friends that overlap and stretch for miles - and shove them into a house and refuse them contact with the outside world. To isolate and alienate them until you almost break them.

I do have a keyboard I touch, but I do not touch you. I have lost my language of affection and I didn't even know I had it. Nor how fluent I was in it. It was probably my first language really. It was before I spoke that I touched. Now it is like a mysterious old ritual, long forgotten and unused. So it has become awkward and necessarily thought out to remember the customs of the language of affectionate interaction. Now I have seizures at the merest contact or even whiff of chemicals in my environment.

It is as though the perfect torture was crafted for someone like me. To give someone so tactile, so loving, so affectionate an affliction that disallows contact. 

That is why I fight. From here. Behind they keyboard. It's also why I give you glimpses of my suffering. Of my torture. So that you might fight with me. It's not enough that the sick have to fight their illness and fight for help. So I provoke you with my suffering. I hope to inspire in you a burning desire to fight for injustice. And to see the courage of my people. My community of warriors.

All the while I type on this keyboard, automatically clicking my fingers on keys, still able to touch type.... just unable to touch you. My heart is heavy with longing for the squishes and bear hugs I used to give out daily. The brushes on somebody's arm in reassurance, the squeeze of the hand, the kiss on the cheek or the light tight cuddle of a child's arms around you as you scoop them up.

Still I fight from here.  Separated from you by the walls. But every now and then there is no hiding it. The weight of the grief in my heart. Because without fail every time I see a group of people on my TV screen I cry. Sometimes it's silent tears streaming down my face, other times I sob. I miss the collective.

You are the collective. You can change everything. Help me fight. Stand up for my people. We can't do it without you.

To see what it looks like when I am exposed to the teeniest minimal contact with the outside world, follow this link:

http://youtu.be/gPbb8DZdY7M

To fight for us. To support our Thunderclap and make it roar, follow this link:

https://www.thunderclap.it/projects/10276-me-cfs-fibro-mcs-change-for-me

Thunderclap ME CFS Fibro MCS Change for Me

I haven't written in a while.  I have been so very ill.  And it makes for creative difficulties and loss of words makes for writing blocks. But I've managed to fall on my head twice in the last 24 hours and perhaps shaken just a few words loose - not necessarily in the appropriate order - but here we go.  

Yesterday after inexplicably getting up to stand on my day bed - a precarious feat of engineering made of stacked pillows and a layer of memory foam - on the fourth day of a gastro bug, when frankly getting out of bed has been a stretch, I then promptly fell straight from my feet to the floor some five feet or so below me, on my head and shoulder, with my ankle squished beneath me.  I managed to dislocate my shoulder, suffer a mild concussion and sprain my ankle.  Then again this morning when I lent over and mysteriously my centre of balance seems to be above shoulder level, so any time I lean further than that the magic of gravity takes over and plunges me forthwith into whatever obstacle lies before me.... in this case my walker, so same part of my head in the walker carry basket and same shoulder into the carpet.  Effing ouch doesn't even come close to it.

Despite seemingly insistent commitment to physical comedy, my body is just not up to such shenanigans.  And in spite of extreme exhaustion from all this funny business I am passionately committed to advocacy and awareness no matter what shape I'm in.

So please, as a reward for my surviving this week, help me by signing up to this Thunderclap (and no old folk it's not a storm as such).  If you have facebook, twitter or tumblr account (or multiple accounts) you can  use all of them to help Change for Me, my charity with co-founder Lee Lee to raise awareness and money to provide practical assistance to those with ME, CFS, Fibro and MCS.

Change for Me is a charitable organisation dedicated to providing information, support and advocacy for Australians affected by neuro-immune illnesses such as Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Tick Borne Diseases, Multiple Chemical Sensitivity, Dysautonomia and Fibromyalgia. 

These complex, multi-systemic illnesses cause intense suffering, and approximately one quarter of sufferers are house-bound or bed-ridden, cut off from the outside world, and dependent on others for help with basic tasks such as preparing meals, bathing, and mobility. Yet these very ill Australians currently have very little access to basic support services.

Our vision is to help sufferers of these conditions feel supported, connected, informed and visible.  We need your help to make a change.  Please stand with us and fight.  Join this THUNDERCLAP to take over social media simultaneously so we can raise awareness and some money to support these brave warriors.