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.