I live in the last chapter

I live in the last chapter, in the aching hollow in my chest where a beating heart used to reside. I live in the winter, in tears of loss, in the heavy notes of a haunting lullaby, in muted greys and the most desolate days. Where I live is not next door to hope or joy. To travel there is not a simple step but an exhausting journey in a rickety boat. And when I return, as I always do, to the cold winter to curl up under the fragile pages of the last chapter, the rain of tears is like a tidal wave, the greys become inky black, the cold is freezing and the aching space in which I sleep is heavy with angst.

Where I live is populated by survivors and fighters. We live on a battle field. We live in the mud, freezing and soaked by rain. We live in pain, we live with illness, we live devoid of tomorrow, because time is transient and the only colour is in memories and slumber. We live in today, in the moment, in the weakness, in the fragility. We see each other. There is no need for words. We tell stupid in jokes. We watch life happen around us and marvel that no one notices the moments. We fight without armour, without weapons. We fight every day and the only allies we have are each other. And when we lose one of our army, we roar and scream uselessly at the world who cannot hear us.

For we live on an island. I know you wondered why you couldn't see us. Why we are invisible. Where we live you might journey to in your life, but either you will return triumphant to the mainland where sunlight is taken for granted and hope imbues your dreams, or you will drown in the murky waters that surround us.

Our island is not a destination for tourists, but not everyone who lives on the mainland is foreign. Some have dual citizenship and visit us to bring the sunlight we need to keep breathing and to find our way. For those of you who visit the last chapter in the winter and chase away the dark with tales of summer and laughter, I thank you for your lightness. I thank you for the bright. I cannot visit you where you are, the trip is too arduous and the contrast when I return steals my breath so completely I am tempted to just stop breathing. But that you visit me at all, with packages of sunlight and love shining in rebellion against the light eating forces of the island.... that you do that, makes me want to breathe more deeply than ever before. To bathe in the light and for a moment, just a moment, pretend I live on the mainland with you in the first chapter of a new story.

To my fellow residents who lie on the battle field beside me, in the last chapter, freezing and unarmed for the battle.... I wish you a journey to the mainland.  Maybe one day you will reside there instead.

To visitors from the mainland, who tote packages of sunshine and love, thank you for bringing me pieces of light.

Between you, the support for Aid 4 Amara keeps inspiring me to breathe more deeply. Your love and light makes me want to keep fighting.  Even though I am without weapons and armour.

Light

I have often felt like a child hiding in a midnight wardrobe, scrunched in the corner desperate for the safety of light. It has been a long and increasingly treacherous decade and the universe has seen fit to challenge me incessantly.

But something lovely and sweet has happened in the last year that has made me feel like a belatedly commended soldier. The light has found me more often, bathing me in the gorgeous safe warmth of hope. It is really easy to drown in the blackness when you are sick and alone, but I want to celebrate the light.

What has been hardest for me with this illness, aside from the obvious death defying struggles, is the lack of understanding. Especially from those you love. Lack of empathy from family cuts close. Some have always understood it, but some have criticised and mocked me, thinking they are doling out tough love but unintentionally being cruel. However in the last year it is as though my suffering has become more visible and in their eyes less transient.

My Ma, from the first camp, bought me a new second-hand bed – barely used, ensemble, firm lush, dreamy. I had been trying to sleep on a – although gorgeous Tasmanian Oak – slat bed that until about a year ago kept falling apart, and then my brother fixed it, but the mattress was cheap when I bought it and it was ten years old, which we all know is thirty years old in ME years.

My sister, also from the first camp, bought me a portable reverse-cycle air-conditioner, which has also improved my quality of life immeasurably. This house is like an oven in the sticky Brisbane Summers – or Springs – and like a freezer in Winter – or Autumn since our seasons have now become two. There is nothing worse for us than being so exhausted and unable to sleep because you can not moderate your body temperature.

My lovely Aunty and Uncle, also first campers, have just generously bought me the computer on which I am now typing this, the computer I was using is older than my infection and it is weaker than me. With the combination of my failing cognitive functions, its unreliability and moodiness, just connecting online sometimes was more than my brain could manage.

I have a truckload of siblings, so this may get confusing, but another sister has helped me by giving me financial support to seek treatment that I otherwise could not afford. We've not had much luck from all of it, but to have the chance to seek any treatment is empowering. Then another sister has really kindly donated me her couches, which are beautiful and luxurious and comfortable. I spend almost as much time on the couch as I do in bed, it is like a day bed, covered in pillows and sheets, and before I was on an old and very uncomfortable couch.

Which brings me to my online besties. And had you told me a few years ago I could find best friends online, I would've thought it crazy, but a bond forged through struggle in darkness is stronger than those forged in light. I have found online this whispery spider-web of illness, with each offshoot catching more love and friendship and understanding. And on days when I think I might drown, they are my life guards, without them I would surely sink.

Of my real world friends, which inversely feels sometimes like the alien world, some have simply disappeared into the shadows, but others have stepped forward, stepped up, loved me more. And honestly, I already knew who I could count on, but it makes my heart hurt with the overflow of love that they're still here beside me when it matters most.

And lastly and most importantly, strangers. Strangers are who changed everything for me. Beautiful generous, sweet strangers. I made a friend down the street who is also sick and she is a Mum, and she barely knew me, but she came to see me one day when my body seemed committed to death, and she saw me and decided to fight for me. This makes me cry every time I think about her, she changed everything. She contacted the charity Communify who then committed to get me a cleaner – I had been on the government waiting list for a year – they also got me a second-hand dishwasher through Givit and had it installed at no cost to me. A stranger stood up and fought for me and with just her voice, things changed. My quality of life vastly improved, Communify put a railing on the stairs to give me something to hang onto, they put a grab bar in the bath so I wouldn't fall.

Extraordinarily the second is a stranger, a woman who is also ill, who has a disabled daughter, she and I have been meeting in the waiting room at the doctors for the last decade and she has been able to measure my decline in weekly increments. She brings me medication she finds useful, things I would not be able to afford, she is outrageously generous.

It seems my invisibility cloak is slipping, my corner spot in the wardrobe is growing cold, and the slither of light grows. I cannot wait to throw the door open and step out, and maybe then I can be the voice of a stranger for someone else.