Marionettist's Escapee

Trapped in a deadened slumber, my body sinks into the bed. I am awake but my brain is only dimly aware of the world, far away, muffled through a lens and filter of the sleep only those who've gone days without it understand.  My heart is suddenly galloping, a terrified thoroughbred, mane trailing, tail horizontal, clip clopping manically through my arteries causing anxiety to follow in its hoofbeats. My heart is trying to escape a throbbing bass reverberating up my throat.

Adrenaline is flooding my system in a  desperate push to move me to act in response to the poison it's sounding the alarm for.  The smell of chemicals burn my nasal passages,  grip my neck, my throat muscles clench in and out touching each other in painful escalating speed. My chest aches and asthma is a medieval corset. It squeezes my lungs. Instinctively my breathing shallows and the exhale whistles in a thready gasp. 

My brain lets rip a muted roar for oxygen. Words are beyond my capability. I mime uselessly at Ma gathering all my strength to wildly eyeball my nebuliser, my hand a dying fish on its last pointless flop against my chest as life giving oxygen drains from me. 

We suck at charades or rather Ma does.  Yesterday while paralysed having stopped breathing, tears leaked out of my eyes, my body's distress streaming rivulets down my face as I tried desperately to get her to notice my unmoving chest. My muscles remained stubbornly fixed my eyes unblinking. I had been here before, paralysed, not breathing but some part of me had known to preemptively put oxygen on... this time I was not so fast. Even then the nurses called a code and started resuscitation as my lips turned blue. Screaming, "Come back Amara, come back." I was right there but helpless in my silent bubble.  Locked in.

Have you tasted the poison of chronic infection? It drips steadily down your burning, aching throat, throbs and leaks in your ears. That is what's happening except I can also feel my cells ablaze with stuttering inefficiency.

A galaxy of cells sputtering and choking on tendrils of infection. Webs of bugs catching cells and causing my immune system to misfire. 

The fighting cells, warrior cells are weakening my body in their battle to thwart these infections and viruses. Draining my energy dramatically like a car with a battery that goes dead suddenly. 

My body is desperate for the poisoned Snow White slumber to recharge and build the energy necessary to untangle my immune system warrior cells from their battle. It is a crash episode one that echoes my earliest days of 18hours of sleep daily and 6hours of zombie. Stacked on top are neurological symptoms  twisting my body into contortionist dance coordinated by a wicked marionettist formed from the bugs that riddle my brain and bones, a hive mind demanding my body seize, convulse, freeze me in paralysis and cease my breathing. 

I am not destined to be a marionette forever. One frayed cord snaps off at a time. The more determined I am, the more focussed, I find myself using my contortions to pull tension on the elaborate construction holding my body in the mad marionettist's rough hands.  His beloved frame is dragged haphazardly across the sharp edges that inevitably meet my body. Each time those strings wear and fray, a fine fibre of yarn, one strand at a time discreetly snaps and I am ever closer to my escape.

Broken Winged Bird

I woke yesterday morning in the dark. Around me was an ominous and oppressive feeling of grief. It filled my lungs so quickly that I could not even scream out, I was drowning on sorrow.

There was this most awful realisation, one that I avoid contemplating too deeply most days, that the world is beyond the glass and stuck behind it, I am trapped like a wounded bird. My wings are broken and my flock has flown away. The loneliness in my heart aches so deeply I wish I could cradle it and whisper to it that you are not alone and you are loved, but it cannot hear me and it does not feel what my head is attempting to persuade it to believe.

Over the last few months I have experienced some of the hardest times in my life. And the anchors that hold me together, my friends online, my healthy friends, I have mostly been unable to manage connecting with. I am too fragile, too consumed by fighting to exist. Every single moment is a struggle, every breath a weighted heavy sigh, every step a painful uncoordinated dragging limb, every fall into paralysis another inch closer to permanency, every seizure more painful, every bronchial spasm more brain starving and every reaction to chemicals a gamble on anaphalaxys.

I have been fortunate to have medical gurus in my journey. But I am now alone on my travels. Only one left an unhealing festering sore, the doctor whom promised me a life and then told me dispassionately that I should tie up loose ends, write a will and seek out palliative care. The other doctors have been my stewards but obstacles have meant that I am now mostly without them and in this moment, this moment of grave illness, this moment when I am so terrified I cannot breathe, in this moment where my eyes leak as my body mourns the loss of all my safety nets, in this moment of utter vulnerability, I find myself alone.

There is so much to carry, so much to learn and I cannot walk nor can I find answers. My brain is unwilling. This broken winged bird has thrown herself against the glass too many times, breaking more tiny bones and finding only again and again that I cannot will the world to shape itself into how I wish it to be. In this second decade of fighting, failing and picking myself up day after day, I find the dark more and more inviting.

We travelled to the hospital not so long ago, they looked upon me as though I was nothing, they endangered my life, they withheld my medication and they ignored my pleas for help. One of the doctors, just one of the very many who looked upon me was kind, the rest ignored my very obvious, very grave, very dangerous symptoms and history with a cult like investment in the bland paradigm that allows them to behave so inappropriately within a severely deficient system.

How does a broken winged bird stuck behind the glass, drowning in sorrow and grief get help? How does she find hope that has buried itself so deep within her soul that even her eyes look haunted by the loss of it? How does she uncover a reason, even one, to keep fighting? Because she's been on an excavation, picking over the ruins of her life trying to keep the dazzling, bright and shiny moments in focus, but they have all faded to grey and resettled themselves amongst the rubble.

Banality tinged with torture, judgement for her imperfect grace, she cannot carry this load alone. But she is not alone, I wish she could hear me. I wish her heart would feel the messages of love that come from the world, through the glass, even if she can't hear them.

Broken winged bird, I wish I could promise her a better tomorrow, and yet I cannot bring myself to lie to her. So I must let her fall down, drag her broken body into a dark corner and lose herself in grief. I will not let her drown. I will help her excavate the rubble. I will fight for her despite the fact she is me and wants to give up. I won't let her. But I cannot do it alone.

So I ask of you this, please do not let me slip through your fingers. Do not let me give up. Do not turn away from my vulnerable truth. Do not let this system stand. Fight with me, fight for me, fight along side me, help me fight. 

I am not the only one. We are many, the broken winged, flightless birds, stuck behind glass, perched on the rubble and ruin of our lives. We are many who fight and flail gracelessly just to get through the most torturous of days you could ever imagine in our imperfect ways. We only wish to survive this moment and the next. We do not always do things the way you would or the way you think you would. We don't always do what you think we should. We are not you, you are not us, but we are all perfectly imperfect.

Before you judge us, imagine yourself without all the things you've come to take for granted, then imagine you are trapped, you can not turn and walk from this moment or every moment to follow for decades to come, imagine you are so incredibly lonely your eyes leak rivulets of tears that drown you in sorrow, imagine your very existence is so torturous that it seems impossible to be alive and then imagine no one sees you. Imagine yourself alone, terrified, defenceless and gravely wounded. Unless you are a broken winged bird I don't know if you can imagine such desolation, so perhaps just hear me when I say when your life is obliterated and there is no end to the war on your body, and you have no army to protect you, your flock has left you behind, you were delaying them and so they left and now you will find yourself doubting there is any reason to go on.

So please take this pledge with me so that together we might will the universe into bringing about a change for all of my fellow broken winged birds who I gently cradle in my hands as I whisper love and reassurance to their hearts, chase the haunted shadows from their eyes and gently blow hope and laughter into their lungs:

Broken winged bird, I will fight for you. Broken winged bird, I am going to promise you something, one day you'll take flight, you'll soar aloft the beautiful dazzling moments of your life that are yet to come and your heart will beat in time with the collective conscious of loved ones who you will get to touch and love and hold and laugh with. Broken winged bird, even when you hate yourself, hate your life, wonder if you should bother with fighting another day, another moment,  even then know this, you are loved. Now breathe in the light and breathe out the sorrow.

I will be with you tomorrow and all the tomorrows after that. You are not alone.

NB please click on the image to be taken to the website of Theo Aartisma who created this beautiful evocative piece.