You never know what expectations you have about life until they are not met. I was never a girl who had wedding dates, locations, dresses or honeymoon destinations picked out. Nor did I have a set age by which I expected to be married and have kids. But as I approach 37 I find for the first time a sense of overwhelming panic enveloping me in the most unexpected moments, catching my breath and bringing tears to my eyes.
I may not have expected a faerie tale, but I certainly didn't expect hell either. If I am honest I imagined a love deep and soulful, where I was with my best friend, and we talked on intellectual and emotional subjects and had similar senses of humour. We worked as a team to achieve things, no matter how big or small. Instead I was with my best friend and everything that was our friendship slowly got lost as his very traditional parents whispered in his ear about my inability to work and how that made me a less valuable human being. My illness progressed and in retrospect I have realised that he often relied on emotional manipulation or guilt tripping me into doing things that I wasn't up to (he simply couldn't understand my illness) and because there was a familiar underlying dynamic he was inadvertently pushing all the right buttons. That pushing caused my illness to escalate and it made our relationship crumble. But we had the most beautiful and amicable of break ups because of that foundation of friendship. What I didn't know then was that while we were parting because he couldn't cope with my illness, what he really meant was he couldn't even manage to be a friend to me while so ill at all. Ever again.
I imagined kids always, it was obvious to anyone that I had an innate calling to motherhood. I had a miscarriage in my mid twenties, so that was stolen from me, but in some ways I am thankful because the type of mother I want to be would never have a child and potentially pass on an infection (that I didn't know I had then) nor would she bring a child into a world where she couldn't look after herself let alone a child - but I was younger and more naive then - time and hard lessons have made me cynical and harder. Nonetheless I would have kept that baby. And she would have been eleven today.
Thankfully I don't need any sort of reassurance from anyone about my self worth. I am a kind, resourceful, generous, intuitive and giving person who gives all of what I have to spare to others to sustain them and help our illnesses get recognised. I have my faults and I own them, certainly there is a big flaw that has become more apparent lately, I self sabotage and I throw myself into advocacy to distract myself from my reality. And it has been working, it has given me purpose when I felt like perhaps it was best if I were no longer here in hell.
Time moves forward, as naturally it does and my illness keeps me trapped. My beloved friends are passing all those milestones adults take for granted as markers on their path through growing up. And now my heart aches as my best friends all fall pregnant and have babies. Although thankfully the love in me can put aside any sort of envy and just feel pure unadulterated joy at their gorgeous tiny humans, but the mother in me - and I am a mother because I carried a child in my womb, full term or not - dies a little more each time I think about the fact in a parallel universe my children could be growing and experiencing the world with theirs. Little faces side by side grinning mischievously at the camera faces smeared with food, feet dirty and laughter tugging at their mouths.
To distract myself, I try to imagine a normal day. One in which I awake and notice the sunlight catching dust motes where the curtain is parted, and I stretch cat like, feeling so rested and dreamy. One of my two kitties Cooper chases my feet around under the blankets trying to catch my toes in a gentle bite and I giggle spontaneously.
Just those few moments would be heaven. Instead in hell, it is very, very, different. The room is heavy with darkness because I cannot stand the light, it burns my eyes and my head throbs with the slightest movement. And when I wake the first thing I feel is the intense bone deep ache that is always present. I feel hungover, and am disoriented uncertain of the day or time. Tobey my older cat lays near my head, ever my minder, while Cooper screeches at me to wake up and his voice is unbroken, frozen in the kitten stage and he sounds like he's being tortured when he is merely serenading me with his song of the morning and yet that sound yanks viciously at the motherly instinct in me and my body floods with adrenaline. I am intensely pained and cranky simultaneously. And now thanks to the cat opera wide awake in hell.
I go to speak but I have yet to fumble for my medication as my mouth will not be manipulated into shapes to form words until I've gulped it down. So I grunt and reach for my phone to call Ma, who recognises my number and drags herself up my stairs to get me from my bed. I try to sit but my body doesn't cooperate and it takes six or seven attempts to manage to get upright. And then like a well oiled but clumsy machine, we load my walker with meds, pillows, water bottles, pawpaw ointment and I roll off the bed so we can pull the sheets up.
I fall down. Hard. I get up again trying to avoid the hand Ma is offering as her back is always paining her. Then I start my weird gait, like a ping pong ball bouncing from wall to wall. At one point I get stuck my head against the wall my eyes open, my arms dangling behind the bar that runs the length of the hallway and I am paralysed. Thankfully I am at a lean to, so my chest takes my weight on the wall but my cheek is excruciatingly painful. Having been upright for a few minutes, my hands and feet have started to burn and the ache in my soles and palms is like nothing you can imagine. My mouth is dry. And it is all I can do to will my fingers to gently squeeze Ma's hand once to indicate yes I am present, with a predetermined form of communication. As the time stretches my eyes widen in panic, my throat is not getting the air I need and my face is crushed against the wall.
Abruptly as though by magic I come unstuck and my body frees itself into an uncoordinated dystonic twitch as I rub my cheek and slur that I am okay to Ma. We make it to my day bed where I unload the stores from the bedroom and assemble my pillows so that I am reclined with no strain on my heart and my knees are lifted with my feet slightly raised to take the pressure off my hips and knees as they are constantly dislocating. I am very hot and my skin crawls as though a thousand bugs are marching over my body hairs. My face is flushed and now my soles and palms burn to touch, I place them against Ma's cold arms for relief or hug one of my stainless steel water bottles between my palms, relocating my hands as the bottle warms.
Suddenly I am cold, so I pull up the blanket that sits at my feet although the weight pains my legs and I wrestle on the jacket that rests behind my head. It is this crazy flip flop of thermodysregulation where I cannot ever find comfort in whatever the climate. In fact most all of it makes me sicker. Ma cracks the back door for the cat to wander out and after one second I smell smoke, maybe a burn off. I have ten seconds to yell shut door, turn on fan - thankfully we have an extraordinary ability to communicate without words and I gesture wildly as I lose my speech and the contortions take hold of my body. I am wildly thrashing smashing my limbs about and when I can slamming my hands into my head to attempt to stop the explosion that feels like it's about to emanate from my brain. The movements slow and for half a second it seems okay, but then my eyes widen and my throat muscles stretch and contort. Bronchial spasms take over my throat, closing my air ways and preventing air access to my brain. Although the oxygen is getting to my body, it is not getting to my head. I pass out and continue the whistling breathing that indicates my throat has constricted to just a tiny space as though someone is gripping my throat with both hands and squeezing every half second. Then I come to, frightened and disoriented and find Ma with the nebuliser and asthma meds held under my nose. I grip her hand tightly and hold onto the nebuliser port with my other hand, wrapping my lips around the top. I can't use a mask, they are idiotically made of plastic which sets me off. It feels like forever, but it's mere minutes and my breathing is no longer musical but my senses are dulled and I cannot see. The lack of oxygen to my head has starved my brain and I am slow witted and uncoordinated. Ma lurches for a towel and the valium and presses the towel to my chest, she finds the water bottle with the smallest opening, to slow the speed of the water down my throat and pours it into my mouth and quickly shoves the valium in. I clap my hand over my mouth to keep it in. Take another sip of water and cough, splutter and dribble it over my chest. I am shattered.
At least this time I didn't have a convulsion. They now incorporate my tongue rolling back into my throat choking me. It seems like every day I accept a new normal and yet the gaping maw that is the hell I fall into every day is bottomless. Every time we find a ledge, it dissolves and we have to adapt. So we do, we just keep adapting. And I keep dying slowly, because that is what chronic is, acute illness that doesn't abate. But we went from third gear to fifth really fast and something shifted. Not just the gear. In me. I felt it. I feel like a ticking time bomb. My low blood content means my blood is thick and throws clots and all the main veins to my heart are now clogged so I cannot get a peripherally inserted central catheter or a port because the veins are clogged, my body is a genius though, it's created a network of spider veins to carry my blood around the clogged parts.
I wish it would work out how to heal me. I guess it is doing it's best just to keep me alive. Technically I probably shouldn't be. There's too many things wrong. It could be sheer willpower. It is the thing that's kept me going for the last fourteen years, arguing with doctors and specialists who kept getting it wrong and keep getting it wrong. Thankfully there has been a few good ones on the way whose genius I didn't appreciate until much later and whose friendship I treasure.
This last six weeks or so I have been certain that death was near. Two steps closer than before. We've been neighbours for a long time, but now it feels like death is invading my space, getting in my way, like a guest who overstayed their welcome and is a little too familiar with your home and your things. And I'm not ready to go. There's too much to do. Too many people to stop this happening to. A government to be held accountable and specialists that need to be reamed out for their arrogance and misplaced logic.
I authored an article that appeared on the Mamamia website, although they sort of hid it - perhaps it's the paranoid cynic in me, but they ignored my comments and didn't respond to my email querying its placement - buried it in the second page under the wrong date when they sort them chronologically, perhaps Tick and Vector Borne Diseases are just too controversial for them. Imagine how it feels for me and my community, we're not too fond of the controversy either but we don't get to choose to say oh well we will pretend it doesn't exist. Didn't matter anyway, it didn't stop my peeps. It very quickly garnered nearly a thousand likes and shares. I also edited together a video of Tick and Vector Borne Disease warriors and that too has over a thousand views. Plus I have shared the stories of my community on my charity page with my dear friend and co-founder Lee, Change for ME, to give insight and support to our members and their healthy loved ones. I have been filmed for a documentary for students for their assessment piece for Griffith. And I have kept trying to reach out. But I think I broke myself. Because I have nothing left. And since death has decided to play dirty, I have to take myself out of the ring. Concede this round. Take a time out. Try and heal. Because if I don't heal now, I can't help anyone later. And I will be damned if I am one of those people who lives with this illness in our community for so long, fights to get my life back and leaves you all behind. I won't do it. I will always fight for us. It is my calling. Sick or not. Let's hope not, but frankly I would settle for half and half. Be a hell of a lot better than where I am now. Shhh don't tell anyone. I don't want the universe knowing I'll settle at all. I want it all the way back. The whole hog. The normal life. Not some faerie tale, just normalcy.
So in the meantime know this, I have a burning need to fight for you all. I am not going anywhere. I'm just taking some time to slow down deaths march. I don't fight dirty and he does. And there's something about being so sick and having had a few real scrapes with death that teaches you the difference between actual dying and feeling deathly. Unfortunately I am in the former category. So I got to do what my wise friend Kae says, I have to put my oxygen mask on first, stop trying to save everyone else and save myself. Because when I can save everyone. There will be no stopping me.
Please don't forget about me or think I've abandoned you. You can always message me through my awareness team Aid 4 Amara if need be and I will be back eventually - time is weird for us it can feel like forever and yesterday simultaneously, but it will be months if I am disciplined - so just hang in there.
Also in the mean time my family and friends are fundraising through The Amara Campbell Foundation which you can message if you have any offers of support or help you can give them. They desperately need volunteers, as the beautiful team that put together the last fundraiser are all very busy and or recovering from surgery.
Love to you all. So much love.
Marzi ♥
