♥ Love ♥

I have breathed out and released some of the bleakness that has completely overtaken my body in dark shadowy patches of intense sorrow and grief. So I am going to try to breathe in the light.

For there is so much beautiful, dazzling, uncovered treasure in my life. Despite all that ails me I have a network that stretches like a twinkling, glistening, barely visible spider web surrounding the world like a beautiful orb of criss crossing love. Perched upon it are not captured or wounded beings, but beloved connections who together knit the web and use it like a hammock to rest upon when their day gets too weary. We each rely on those connections, feeling the vibrations of love from across the globe even when we are unable to speak.

So to those who have woven the beautiful web which works as a safe place to rest my head and dream of swinging madly about in joyous tumbles, I thank you. To those who I have uncovered in the rubble and ruin of life, in the dark heavy sorrow, whose love has forged connections between me and other broken winged birds, some now angels, I adore you and whisper softly always to your faintly beating heart, “I love you, I love you, I love you”.

To my beloved healthy friends who share dazzling moments past with me, jewels in my memory that shine bright when they're tended to and polished up to focus into perfect clarity, I love you for standing by me, holding our shared jewelled memories like keepsakes, protecting them for me, keeping them in your hearts, ever present so you do not allow me to forget who I was and who I can be.

For my family, some of whom are not blood, but I have chosen to adopt in my closest network of glistening connections to share my resting space, you see both sides of me. You see my grace and strength and joy and you see the depths of my struggle and how I fight so very hard to hang on to my sanity, to war with the bugs that are forever inching closer to a coup in my brain. You keep me fighting, you fuel the fury that allows me to control the bugs and prevent them overtaking my very being. And most importantly, you love me despite the days in which I cannot summon grace, the days in which I lose the battle and the bugs take over, the days in which I am so deep in despair and desolation I drag you down. Your love is what love should be. The love of imperfect perfection, the love without conditions, the forgiving love, the understanding love, the momentarily angry but quickly forgiven love, the true and gritty messy love of truly seeing each other and accepting each other's faults love.  The real love, not the manufactured candy love we've been sold, the messy, ugly, gritty, beautifully tainted, imperfect, perfect love.

And lastly, to those of you who witness my suffering, who do not turn away, who stand by me quietly unwavering, it is you who inspires me. You who patiently waits for the moment when I can properly communicate, you who sees me despite my inability to fully fulfil myself, you who supports and loves me without conditions, you are all the best of me. All the loves of my lives.

Thank you for the love that fuels my fight.

NB please click on the image to be taken to the website of media artist who created this meme quoting Molly Friedenfeld.

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.