(Narrator: Elle cultive un goût particulier pour les petits plaisirs. Plonger la main au plus profonde dans un sac de grains, briser la croûte des crême brulées avec la pointe de la petite cuillere.
Narrator: She cultivates a particular taste for the small pleasures. Immerse hand deeper into a bag of grain, break the crust of burnt cream with the tip of the teaspoon.)
Frida Kahlo: You've lost weight.
Diego Rivera: And you've lost your toes.
Frida Kahlo: Is that why you're here? To offer your condolences?
Diego Rivera: I'm here to see how you are. How are you?
Frida Kahlo: Tired of answering that question. Otherwise, like shit.
That last line cracks me up every time.
That last line cracks me up every time.
Gertrude Stein (Kathy Bates): The artist's job is not to succumb to despair
but to find an antidote for the emptiness of existence.
I watched The Diving Bell and the Butterfly. The story of French Elle editor Jean-Dominique Bauby, who lived with Locked-in Syndrome, following a massive brain stem stroke. His only mode of communication an eye blink. He dictated his book, Le Schephandre et le Papillon, upon which the movie is based, dying 10 days after its publication. It is beautifully shot and his words lyrical. As a patient and someone who worked in neuro rehab I wish it were compulsory viewing for all medical staff. A reminder that inside the broken body, a person still resides. A person deserving of compassion and respect.
Jean-Dominique Bauby: My diving bell becomes less oppressive,
and my mind takes flight like a butterfly.
On a side note, I wish our Australian hospitals took a page out of the French rehabilitation hospital. Green walls, red velvet curtains, open windows, paintings and pictures pasted everywhere something so taboo here. And set beautifully by the sea. I did a placement at a rehab hospital on the beach here in Melbourne. The environment alone was healing. But the land was a monetary boon and it was sold off and the rehab unit incorporated in another hospital set on a windy field on the edge on an industrial area.
I have spent my time searching through art websites. I found the name of this vibrant print I was given for my 40th. It has escaped me for so long despite knowing it initially. A print I love by an artist I love. Name and print combined. History and story remembered.
(Rose Seidler's House, Shag, 2006)
I found a print by the same artist that I'd love to have one day. I spent hours browsing his catalogue. More stories, more elements I never knew. Losing myself for a while.
(The Lost Book, Shag. Outre Gallery)
I stepped outside and pulled a spent bloom from my cyclamen, Audrey II. The colour, the vibrancy, a reminder of those who care and support. Cyclamens and I have a rough history. I love them but they seem to see me and instantly keel over. But not this one. It thrives on my neglect. Maybe that's the lesson.
I lost myself in the words of Neil Finn. I let the words enter and break down my resistance. I let myself feel and I let myself react. We claim his as Australian, though he is from our sister country New Zealand. But he is part and parcel of my Australian history. From Split Enz to Crowded House to his solo work. I have grown up with his work. A master story teller. A master songwriter. A true artist in a time of pretenders.
Hey, whenever I fall at your feet
Won't you let your tears rain down on me?
whenever I touch your slow turning pain.
The finger of blame has turned upon itself
And I'm more than willing to offer myself.
Do you want my presence or need my help?
Who knows where that might lead
(Fall at your feet, Crowded House, 1991)
I ate up stories, real stories of real lives. Writers? Bloggers? That distinction is laughable for many. Voices owned and the passion of that ownership conveyed on the page. The messy, painful, raw and beautiful lives of others. Because there is beauty in pain. Beauty in the sharing. A gift in the access. And catharsis in release and discovery of a kindred spirit.
I read The Sound of a Wild Snail Eating in a single day. I read and I absorbed and I was transfixed by shared experience and essence. Vibrancy and life seen in the midst of a difficulty I understand only too well. I was reminded by a friend about the book. Someone whose heart shows in everything they do. I wrote the author on a whim. On a need to share how her book found it's way to me via a friend on a day where I needed it most. How moments collide just when you are feeling adrift. To my surprise and delight she took the time to write back. A gesture that reminds that people care. Even strangers on the other side of the world.
And healing can resume, begin, and continue.
That relentless and overwhelming exhaustion that perfuses my being is slowly abating. My body is still stagnating in continual dysfunction marked by pain and weakness. But I am healing me through self care and the care of others.
Family is not born of blood. It is not born of genes or parentage. It is not born of geography and proximity. It is born of action. It is born of time given. It is born of support written. It is born of a phone call. Of caring given without expectation.
It is born by those who remind you that you matter when you are having difficulty in remembering it yourself.
I am grateful for the family that surrounds me, in person and in the ether. I am grateful for the connections that exist. Some fleeting and some enduring. But each providing another thread to sew me back together.
I am grateful for that little feeling deep down inside. That tiny ember that is fanned back into life with every little kindness
I am grateful and I am healing.
Slowly. At a snails pace.
And I am living in colour.
This may be my favourite Neil Finn/Crowded House song, although as I write that I can think of another dozen I would call favourites. I think it's the truth and genuine feeling that inhabit his words that have always drawn me to his work. Crowded House's first self-titled album was the first cassette I ever purchased with my own money. I still have it.
Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.