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.

Don't Give Up

Dear Me/Amara (aka Marzi to my friends or variations of that – Marzipan, Marzipants, Marz, Marzsticles, Mara – or to my family RaRa or Aunty Ra Ra or the dreaded Tomato Jane and Fanny – as in the old ye English version of bottom - Fart Draws)

I wonder if that quote is true of humans as well as cats, that the more nicknames you have the more loved you are? I have loads. Maybe it's more that I give them out with regularity and it induces loved ones to respond in kind.

Anyway I digress, it is rather weird writing to oneself, so likely I'm hopping on a tangent as a form of distraction. But I do want to have a bit of a serious chat with you. Since I am you, well, I know what that brain and heart of yours is feeling. And you are struggling quite badly.

To be honest I don't believe you have ever had it quite so bad as you have it right now. In fact were it not our reality, I would not think it possible to even live this close to death for so long and to have not died yet. That you suffer the way you do, in the manner that you do, breaks my heart and you do yourself a disservice sometimes by being so strong. Although I am aware of you faltering now, in this moment, and that is why it is important to say these things to you.

You have to stop doing so much and distracting yourself from your reality by throwing yourself into helping others. Yes, stop, I know that's who you are in your very core and I know you can't be anyone else, but you are no good to anyone else dead, or worse still suffering even more than you are now.

I know you want so badly to be a mother, to lead a meaningful life, to write that book and to help people who are like you and can't help themselves, but how can you do and be all that if you won't stop and just first look after yourself?

I am terrified that this time you've gone too far. What does it take? You already suffer daily with seizures, Tourette's, dystonia, paralysis, risk of death from exposure to chemicals even just transference of them to your environment and now you've suffered your second minor stroke, they have found some sort of artefact in your right temporal lobe that travels into your frontal lobe (which thanks to the lack of any neurologists in your team means you are relying on the public hospital – CRINGE – to ensure they have read all relevant scans and understood the gravity of the situation and will action it appropriately) and to top it off, you've been advised you have cerebral atrophy. Then there's the low blood volume, the clogged arterial veins to the heart, your suddenly visible veins when you were never able to see them before, your inability to be upright without falling into paralysis after just minutes, your worsening dementia symptoms, frequent and innumerable dislocations of bones and joints, small and large, the cyclical vomiting syndrome, acidic blood, rashes over your vital organs, yucky overgrowth of bad bacteria in your gut, very low oxygen flow to the brain... and well really do I have to go on?

This is not the life you wanted. I know that. In the absence of life has been moments, minutes, hours, days, months and years of endless suffering. Decades. To have made it this far is, well pretty damn impressive. Most would have checked out by now. But you still laugh with your Ma and your loved ones, just not as often or not as freely as you did before. Because it's really hurting isn't it? You wanted to fill your life with meaning. To nurture life and mother a child, more if you were gifted with them and yet you lost your baby. That makes you a Mum still you know? No one can take that from you. And you wanted to help people – which you have done simply by sharing your story and starting Change for ME with Lee and the gorgeous team – it may not be all you wanted it to be but you did something and you did it while so sick you couldn't bathe yourself, that's no small achievement. I know you wanted to write too. To publish a book or books. To really tap into your soul and let out one of the gazillions of stories that travel around your brain and you have done that too just in a different way. You bare your soul in your blog. And it gives those who are not sick like your community an insight into their reality. That's something. Stop minimising it. Plus you let people see all of you in your most vulnerable state. That's no small thing.

Ever since you were a child, a tiny innocent child, you have been more like an adult. You always had a lot of emotional responsibility and you know how to be good friend and to look after others (just not yourself). And I know it kills you to not be able to participate in your friends lives the way you would if you were well. You used to juggle so many friends. And you loved them all and were in all sincerity close to them. But why do you judge yourself when no one else is judging you and you wouldn't judge them if they were sick? In fact you'd be making all the effort if you loved someone who was sick. So why do you still feel like it's your job? It's not your job. And those who have let you down or worse, been unkind and self involved are not worthy of your love or another moments thought. People are not perfect, do not worry if they are not there all the time, worry only that they are there at all and when they are they are they are good to you.

*Don't give up

 'cause you have friends
 Don't give up
 You're not the only one
 Don't give up
 No reason to be ashamed
 Don't give up
 You still have us
 Don't give up now
 We're proud of who you are
 Don't give up
 You know it's never been easy
 Don't give up
 'cause I belïeve there's the a place
 There's a place where we belong

Don't give up, you are loved. Don't give up, things will get better. Don't give up, hang onto hope. Don't give up Marz. You are a good person. You try very hard to help others. You are not perfect but you are NOT supposed to be. Yes I know you hate caps but I need you to hear me. You don't have to be perfect, stop trying so hard. No one else is perfect and you're okay with that so why do you think you have to be?  Be your beautiful imperfect self and own it.

I am begging you, please, don't give up, I need you to fight. Don't give up, because around the corner could be the answer. Don't give up, you are not alone. Don't give up, you are not on this journey alone.

I love you because despite what your inner voice says, that toxic inner dialogue of yours, you are innately good, ethical, moral and giving. Ignore the bugs that riddle your brain and taunt you with their lies and paranoia. Ignore the stroke induced doubts in your brain berating you and clouding your instincts. Listen to your soul, tune into the love in the universe, it's tangible, it will cocoon you and keep you safe, give you a soft place to land if you'd just let go and tap into the network of people who love you and their connections act like a safety net. Don't give up, I need you to survive, we have got shit to do. Please, don't give up.

More love than you can handle and squishes to crush you with

Marz

PS You may still have all you dream of. Don't give up.

NB Thanks to Jayne for dedicating this song to me and inspiring me to let this out xxx

*Song Lyrics by Herbie Hancock - 'Don't Give Up' (ft. P!nk and John Legend)