I stayed the night with Mum last night. The sofa in her room folds out. “We’re camping!” I said. “That’s right,” she said. We were both glad I was there. I am good at rubbing her back when she is throwing up.

Her illness bores her, but she doesn’t dwell on it. She loves having her family and friends around her. She wants to chat and play mah jongg.

“Beautiful mum,” I said, “brave mum,” and she laughed.

Her dear friend Hazel is coming from Sydney today.

This morning I went to Jane’s for a shower and to cuddle my lapwolf. I called Jeremy, who told me about Bebe. “Her eyes are still bright,” he said.

Now I am at Henry Street, where Sarah’s black kitten is mewing hello to me and walking across the keyboard purring, exactly the way Bebe likes to do.

I am glad I saved the works of David Foster Wallace for this moment in my life.

Today was a bit easier, a bit harder. Mum slept most of the day. I sat by her bedside reading, or slept in the quiet room across the hall. Friends visited and the family came and went. Sarah and Kelly sat on the couch for hours finishing a cross-stitch of the Cat in the Hat that Mum had started for Al.

She’s still well in herself – a weird thing to say about someone with metastatic cancer, but she doesn’t feel “old” and doesn’t like calling the nurses because it’s not as if she’s “really sick.” When she’s awake she’s very present and enjoys our company. Nurse Dale believes the pain relief is allowing her body to rest itself for the first time in eight months.

I had a long talk to Big, who pointed out that we really need to make sure Dad’s laptop is backed up in case he drops it in a bucket. This is not likely but if it did happen, it would be bad. Sarah has a terabyte USB hard drive lying around, so Al’s going to take it over tomorrow. Systems administration as an expression of love.

So my darling old catty chose a fine time for her kidneys to fail. That’s not entirely sarcastic: I was dreading making final decisions for her, and now Jeremy will do it for me. He brought her home and is giving her fluids and she’s feeling better and will have a peaceful death surrounded by love. Still, yesterday was not easy, and when I said goodnight to mum and she hugged me I was shaking.

“Shh, shh,” she said, stroking my hair.

“Oh no, don’t comfort me or I will start to cry, and if I do I’ll never stop.”

“Yes you will,” she said serenely, and rubbed my back.

In one way yesterday was magnificent. She has had the pump installed – it’s called a syringe driver – and now she is on a continuous dose of morphine. For the first time since she got sick, last May, Mum has zero pain.

Before Big left he said: “What’s humbling is, she isn’t just content. She’s happy.”

This morning we played mah jongg. Dad was very present. He won twice and Mum won twice. This afternoon my brother Iain dug a new post hole for Mum’s mailbox. My brother Alain arrived in the evening. He and Sarah and Mum and I opened the bottle of shiraz and had uproarious fun. We snuck past the nurse’s station in gales of laughter.

Tomorrow Iain and I will set the mailbox in cement. “We will cement the hell out of that hole,” as he put it. Then he has to go home to Sydney.

In between, as I ran various errands, I wept in the arms of Lauren, who runs the deli, and Karen, my Barraba yoga instructor.

People are beyond kind.

Tomorrow Mum gets a morphine pump.

Heat wave. Glaring sunshine. Birdsong. My fucking heart is broken.

I woke at dawn, beset by bird life: galahs, cockatoos, King parrots, rainbow lorikeets, magpies and currawongs all yelling their fool heads off just outside my window.

I’m staying with Jane. She and Darcy and the twins live in one of the lovely old Federation brick houses on the hill above the river. Her spare room is vast, with a high ceiling and a glowing wooden floor and nothing in it but a shelf and a bed, and it opens onto an east-facing verandah. It is so exactly the quiet refuge that I need that when I saw it I was struck dumb. No idea how I can ever thank Jane and her family.

Quiet, that is, except at dawn, with the birds.

I sat on the verandah and glared at the birds and called Jeremy as the sun rose. When Darcy and Jane came out for coffee their dog Chicken came too. She’s a Scottish staghound but she looks a little like the Anatolian shepherds I saw in Turkey and a little like a wolf. She’s bigger than I am. I cleared off the sofa I was sitting on and Chicken kissed me and put her arms around me and her hairy cheek against my face.

“She was bred as a pig dog,” Jane explained. “She could track the pigs and hold the pigs at bay, but she just didn’t want to kill them. They even gave her some piglets -”

“To tear apart?”

“Yeah that was the idea, but she played with them instead. When I heard that, I knew she was the dog for me.”

How do people get through this without animals? Sarah picked me up and I went to Henry Street to snuggle with the creatures there: four dogs (Jake, Peppa, Jess and Toby) and three cats (Oskie, Missy, Tiz). I always thought it would be me with the menagerie.

When we got to the hospital Mum demanded mahjongg. Big had forgotten the rules but not so much that he didn’t win the third game, after Sarah won the first and Mum won the second.

I found out when I called Mum as we transited in New Zealand. “How are you?” “Not so good.”

I kept it together for her but when I hung up I folded in half, making noises I had never heard myself make before.

My poor daughters, aged 11 and 8, helping my husband to hold me up.

—–

Things are proceeding rapidly. It is probably not as much as two months now. Mum’s in the palliative care room at the hospital across the road from her house. Sarah believes I will get to her in time, but admits she’s glad I rebooked on an earlier flight.

——

Mum just turned 78 and I will be 43 next month. We have had a fine, long run. We have travelled together in Australia and Ireland and England and America. She is the only other person who attended both my graduations, my wedding and the births of my children. The years since I had Claire and realized exactly how much my mother loves me have been our best years, years of profound mutual affection and happiness and peace.

None of which reconciles me to her loss.

—–

It is like birth in several ways: we wish to avoid overly medicalizing things, but we’re not opposed to the judicious use of drugs; it is a passage to another state; to overgeneralize only a little, the women get practical, if weepy, while men try to compartmentalize and problem solve; we can’t really imagine or understand what’s going on, and we probably never will.

But there’s no baby at the end.

—–

I said to Jack: “I’m mostly okay, except for the bouts of ugly crying.”

—–

This entry is All About Me, and I apologize. I am in the gate lounge at San Francisco, ready to leave, having spent almost exactly three and a half days in California. When I reach Mum’s bedside tomorrow I will tell you some more about what an excellent person she is. She’s just lovely.

I was telling her about how much the cat has benefited from her new heating pad. “I know!” I said. “I’ll get YOU a heating pad!”

“That does sound nice,” said Mum. It’s a hundred degrees in the shade in Barraba.

Also I apologized for all the times I was a crappy daughter.

“You were never a crappy daughter,” she said. “Oh, except when you were dating Pig Boy.” Pig Boy is our pet name for a certain ex-boyfriend.

“His feet were too big,” said Mum.

“Your SONS have big feet,” said Sarah.

“That’s totally different. They’re my sons.”

Two to four months.

Going through security in Auckland International for the, what, twentysomethingth time this year? I thought, plaintively: I want to go home. But I could not work out what I meant by the word home.

Sydney is very much itself: glary and humid with a gusty breeze; the loud billboards and cheap furniture importers all along O’Riordon Street, and beyond them glimpses of tree-lined streets with nineteenth-century terraces; the lorikeets screaming; the coffee delectable.

Mum has responded well to her treatment and is eating better. Sarah has been a brilliant caregiver. But they are both sick to death of being so far from home. On Friday we will all pack up and go back to Barraba.

First let me say that Mum is in Sydney responding well to treatment and feeling much better, and that I will see her on Wednesday.

Still, though. One of the other great narrative arcs of 2013 is Jackson The Horse And Me: A Love Story. When I rode him on Sunday he was okay on the flat but so clearly uncomfortable over fences that we put him over a crossrail and let it go at that. Today when I turned up to ride, he was in his stall. Toni said he has a contusion injury on his suspensory ligament.

“They let us know when it’s time,” she said. “If he was in full work and this happened, you’d say, oh well. But he pretty much only works with you, so if he’s banging himself up under so little work…”

“I know,” I said, and I do: this whole past year I have been acutely aware that he’s a none-too-sound nineteen-year-old Thoroughbred. They’re going to see how he looks after a week of stall rest and hand walking, but he’s not going to be around forever.

Worse, much worse, is this news out of Ariad Pharmaceuticals. Beth, who is the reason I am at McIntosh Stables and whose horse Austin is the best horse who ever lived, was on the first human trial of Iclusig. The drug is keeping her alive. God forbid that the FDA withdraw it.

“The last four years have been a gift,” she said this morning. Damn straight. Every minute, every second of it.

I rode Olive, a dead ringer for the horse of my dreams. She is amazing.

“You have natural feel,” said my instructor, Avi, and I laughed my head off.

“Does it still count as natural if I’ve been working on it for years and years and years?”

I find a note she wrote me:

“For Rachel
Gwen Harwood
Poet
Bone Scan”

She doesn’t even remember writing it.

I look it up and find:

In the twinkling of an eye,
in a moment, all is changed:
on a small radiant screen
(honeydew melon green)
are my scintillating bones.
Still in my flesh I see
the God who goes with me
glowing with radioactive
isotopes. This is what he
at last allows a mortal
eye to behold: the grand
supporting frame complete
(but for the wisdom teeth)
the friend who lives beneath
appearances, alive
with light. Each glittering bone
assures me: you are known.

All of you who have texted or DMed or emailed or called; all of you who saw me and gave me a big hug; all of you who came to dinner and brought your kids and dogs; who dragged me out to ride; who said how sorry you are and what a shitty thing it is (it is); who sent flowers; who listened or held me while I raged and cried: all of you. I do not know how I would have gotten through the week without you. What did I ever do to deserve you all? Thank you.

My mum is brave as a lion, which we knew. My sister is magnificent. I wish they didn’t have to be.

My mum has cancer.

The brilliant Sumana made this exact point to me two weeks ago:

Butler creates woman protagonists (such as Lilith in the Xenogenesis trilogy) who are seen as traitors for consorting with their enemies or oppressors. Her stories have the capacity to make the so-called traitor’s motivations understandable, often showing a willingness to negotiate as the product of a stubborn sense of hope for the future that can take the form of a commitment to nurturing a new mixed race.

From the book I cannot put down, Ann Cvetkovich’s Depression: A Public Feeling. Cvetkovich has also introduced me to Jacqui Alexander’s phrase “radical self-possession,” an idea that instantly caught fire and ran down every blood vessel and nerve in my body like music or healing grace. I asked myself what radical self-possession would look like, and Future Rach (who drops by occasionally to give me hints) said:

“Like me.”

Passages I could have written myself:

Although it was very inconvenient, the most disturbing aspect of the whole episode was the fact that I had been able to ignore the initial pain. By ignoring it, I had made it worse. I was able to recognize this as a warning sign – a notice about my inability to pay attention to the sensations of being in my own body – but I didn’t really have any idea what it would mean to live differently.

Dental care is something of a metaphor for the state of other affairs in my life. Taking care of the tooth disasters involves an act of faith that when something is wrong it can be fixed and that it’s possible to move on… Health maintenance has become for me a sign of self-love, although it also gives rise to some nagging questions about class. Regular dental care seems to be part of the secret life of middle-class domesticity that passes as normal – one of those things that no one talks about but everyone is supposed to do…

When you’re depressed, and all you want to do is sit still or curl up in a ball in bed and never get up, putting the body in motion is a major struggle and a major accomplishment.

I sometimes feel the need to touch the land of my childhood in order to remember myself to myself. I’m not recalling a lost paradise; I’m acknowledging the troubled history that led to my departure as a part of figuring out what it means to go back. My own history of dislocation connects to the histories of immigration and displacement… My “ancestral home” is the site of many histories, both happy and sad, both my own and those belonging to others.

(Note that I am not depressed right now and have not been for years. This book is giving me an opportunity to reflect.)

Back in SF. Jetlagged as hell. Someone said not to make any big decisions but I cut off all my hair.

I cried a bit today, because of everything but specifically, I realized, over missing Alain. We spent two weeks together 24/7, including eight hour car trips and reasonably heavy physical labor, and we didn’t so much as get annoyed with each other. I love him so much. To me, he is perfect. Really not kidding about the twin thing.

I am in rural NSW. Tonight I went to a community meeting with Mum and Dad. I took my needles and yarn and got my Madame Defarge on, knitting and glaring at various scoundrels who have wronged my Dad. “Glad to see you getting into the spirit of small town life,” said Sarah’s awesome friend Jane: “I promised I’d take notes or I’d be putting some rows down too.”

The community meeting was to oppose the plan. The plan is to cut down all the London plane trees and close down three more store fronts along the main street. Poor little Barraba. Tamworth Regional Council might as well just nuke the site from orbit.

It is strange, strange, strange to be here without Jeremy and the children; strange how effortlessly I fall back into my childhood rapport with my brother Alain, twenty months older, my twin. When we do the washing up we are still one person with four hands. With him and Mum and Dad here I am at home but also not; I wake in the icy dark before dawn with my heart racing, not knowing whose house I am in, or in what town, or in what country. I’ve traveled too much this year. Among other things.

Here is the lede I have been burying for five months. My father has been diagnosed with a rare condition called semantic dementia. It is a malfunction in the language processing centres of his brain, which is difficult for him to understand because of the malfunction in the language processing centres of his brain. It is the Eater of Meaning. I used to joke that my father was a genius but I couldn’t prove it. Now I have proof: he has had this condition for months, if not years, and he is still himself, still putting the pieces together, still trying to solve puzzles, still trying to understand. Reaching out, as Ursula le Guin once put it, to be whole.

I have a bunch of mantras which are supposed to help me through this interesting time. Focus on his abilities, not his deficits, I say to myself, and that helps me to be grateful for his undimmed sweetness and affection, for his unaffected memory, to ask him about his childhood in Papua New Guinea, his memories of his mother. Attack this with the hammer of unconditional love and the sword of Not Trying To Fix Everything, I say to myself, as I am interrogating his gerontologist in case there’s a drug treatment we just happened to overlook, as I weed the living hell out of the flower bed in front of his and Mum’s house.

What can I possibly tell you about my father, who showed me the Galilean moons? Love is such a little word for a feeling so big. When I climbed to the top of the highest shell in the Opera House in January, I found a fire panel that had been made in his factory. It was a garden factory and in the garden was a deep pond, with frogs and herons; after watching it for years he realized that it was a spring. He is my source.

The Fault in Our Stars is written by someone my age about teenagers dying of cancer. The teenagers are adorably articulate and wry, which is what happens when they are written by clever fortysomethings – see also Juno and The Gilmore Girls. But I cried and cried for Wendy, who was just that funny anyway at fourteen, and for Jen, who at forty-three knew exactly what she was leaving behind. Glioblastoma, leukaemia.

The Still Point of the Turning World is written by Emily Rapp, who lost her son Ronan in February. He was three. Tay-Sachs. I’ve become violently allergic to the notion of meritocracy because of its implication that there are people who are without merit. Jen never made much money. Wendy never finished high school. Ronan never learned to speak. What does that make them? Emily Rapp says:

If you love but the love is never known by the other person as the love you bear for them, is that love wasted? I eventually realized that this way of thinking was more about ego than anything else, and that no love is ever wasted; in fact, the most precious love is often the kind that isn’t returned, and that is given freely.

I’ve realized it is my most deeply held political conviction that all are created equal. A person’s performance as an economic agent under late capitalism is about as relevant as their performance in chess or dressage or sport aerobics to what they are actually worth. Every person is a planet with a diamond core, a Tardis, bigger on the inside. We can’t possibly love anyone enough, but we can try.

Rumpus: What did Ronan smell like?

Rapp: Rice and shampoo. Sleep.

Rumpus: I know what it felt like for me to hold Ronan. What did it feel like for you?

Rapp: It felt like holding the world.

Kirsty is a force of nature. I’ve been meaning to go up to Edinburgh since Alex and Ioanna moved there from Ireland years ago, but the details eluded me. When I mentioned it in passing to Kirsty the whole thing was organized in what seemed like sixty seconds. I flew in early for the London conference I come to every April, and Kirsty and I caught the train to Edinburgh.

The journey was gorgeous and fascinating. “Green and pleasant land,” I tweeted as we left London, then “dark Satanic Mills!” as we crossed the midlands and I saw four huge power stations (Eggborough and friends maybe?) belching steam into an otherwise cloudless sky. As we sped to Scotland we saw Durham Cathedral, the Angel of the North (which I have loved since first seeing pictures of it and which came as a completely unexpected treat), beautiful steampunk Newcastle, Lindisfarne like something from a Miyazaki film or happy dream, the sun sparkling on the mouth of the Tweed at Berwick, and the looming bulk of the Torness Nuclear Plant.

Motion sickness got to me after a while. (The hangover from the night before probably didn’t help. That was Grant’s fault.) I thought I was going to hurl all over Waverley Station. I took my first steps in Scotland trying not to puke and telling myself “Don’t mention their accents don’t mention their accents,” so of course when I called Alex I blurted out “you sound very Irish.” I guess at least I didn’t vomit?

When I had recovered myself somewhat Kirsty and I had fun storming Edinburgh castle, and when we finally did make it to Alex’s house the awkwardness of nine years’ separation did not survive its first encounter with a pretty decent Sangiovese I’d brought out from California. Alex made osso buco. It was delicious. Ioanna is delightful and their daughter Lena is so best. We figured out how to fix capitalism but I didn’t write it down, so that’s a pity.

I’ve been thinking, for complicated reasons, of things I have that are irreplaceable: the rosettes I won on Alfie and Noah; the Onkaparinga blanket Sarah gave me to take with me to Ireland, and which is wrapped around my knees as I type; the ring my father-in-law gave me; the bronze horse on my hall table, which was a present from my mum. Big Ted, Alain’s bear when he was a child, who is beaming fondly down at me from his shelf.

For that matter, the bears my mother gave to Claire and Julia: Topaz and Bess. Topaz spent three days lost behind a shelf at Claire’s pre-school, and another two days in the back seat of a taxi in New York. Our miracle boy.