Bliss

We love him madly, our little boy who was born in June.

The last eight weeks have been a beautiful blur.

I'm not sure if or when I'll blog again.

What part of you is that?

At night in bed he used to reach over and pat whatever part of me was closest to him, and ask, 

What part of you is that?

It was usually my hip, sometimes my rump.

Now it's always my belly, enormous and taut between us like a drum, he doesn't need to ask.

He touches my belly, the baby wriggles in response, he says to it:

What part of you is that?

I answer for it:

My spine, my bottom, my knee, my hand. 

*

I know some things about the baby:

1. It's nocturnal.
2. It suffers terribly from the hiccoughs. I tell it to stop gulping, take small sips instead. My tummy wiggles like an animated jelly for an hour at a time.  
3. It loves its dad. I talk to it all day but the minute the dad gets home and starts speaking, it's like a jumping bean.
4. It is social and will manoeuvre its entire self to the side of my belly closest to whoever I'm talking to. I sit lopsided and try to concentrate.
5. It prefers female vocalists.

*

At the obstetrician's office, the midwife hooks us up to the CTG. She puts the monitor on my belly, locates baby's heart beat, and asks me to firmly hold the monitor in place. In my other hand she places a small wand with a black buzzer on the end. She instructs me to press the buzzer if the baby moves. I feel like I'm in a quiz show...and the answer is: the baby will move the whole time! She leaves the room. The baby tries to kick the monitor off. I wonder if I should just hold the buzzer down. I press the buzzer. Repeatedly.

*

I'm big. Even my ear lobes. I joke about changing my name to 'Rotunda'.

*

I have the words to this song in my head: "Oh the days are long, til the baby comes."

*

Can't wait to meet our little bunyip, on the outside.

Advanced propagation techniques

We moved house just over two years ago and set about trying to create a garden. For the amount of effort we've put in, it doesn't look that flash...yet. But we're trying. Learning as we go. My health had been improving in tiny bits here and there, my world expanded a little and I could do small helpful things some weekends.

My main gardening role has been propagation. Also: bickering with my co-gardener about plant-placement (he who wields the trowel wins). Propagating is the perfect task for me. My husband brings me a pile of prunings, I rest on the cadillac couch with them on my lap and trim them down with secateurs, then pot them up. I must have propagated hundreds of plants in the last couple of years.

I've loved lavishing nurturing energy on the garden. Sometimes, in the garden, I'd think about one day getting a dog. Then I could nurture the trifecta of garden, dog and my dear sweet love.

That common focal point for nurturing, a bambino, wasn't realistically on the cards - so I'd been told for many years and by many experts. Mind you, even without access to my test results, you didn't need to be Einstein or Sherlock to deduce that.

I'd had time to come to terms with this, and there have been so many losses in the face of chronic illness, that this seemed to be just one more. I wistfully accepted it. The thing I couldn't accept, even after time, was that this loss directly affected my husband. Other losses that affect both of us I can minimise, mitigate, try to make up for - but not this one.

Years ago I'd watched him toting a baby niece on his hip, and knew what a kind and gentle parent he'd be. Years ago I had no idea this illness was going to be the grim reaper of so many of our shared dreams. Once the 'years later' had elapsed and the medical reality emerged, I was sad that my Judas of a body most likely wouldn't let him become a dad.

At our wedding, during the speeches, there was no mention of children. I've noticed at other weddings that children feature in the speeches, often quite prominently. I was grateful for the tact of my loved ones, though to be frank, they probably didn't even think about it, it was probably only me that noticed the absence of our non-existent future whippersnappers.

***

A few months ago we discovered that a little miracle had sprouted. In me. A little baby, who we've met at several scans, jumping around in my belly like a loon.

Discovering I was pregnant was the most profound shock I've ever experienced. It felt like the galaxy had split in two, like fireworks went off in every cell, like a tornado whirled through my brain and reassembled it.  

Pregnancy hasn't been easy on me but we are incredulous, thrilled and grateful that I am capable of going through it at all. My husband says he just can't believe my body is doing something right. I know exactly what he means. Turns out maybe propagation really is my secret talent...but who knew it would apply to a little human being and dear new family member?! 

It is too amazing. We are so, so lucky.

Tilting

Our sweet neighbour turned 89 last week. He and his wife are lovely. Every time we’ve seen him recently he's reminded us, "I'm going to be 89!" He's so thrilled about it. I love the way oldies are proud of their age, like small children. It’s inspiring, and makes me wonder why we all get so het up about getting older in our middle years. He's planning to make it to 99. Good on him. I hope he does. In my mind there’s a sense of solidarity between he and I - we are frequently in our gardens in dressing gowns and slippers, and it’s comforting to see someone else wandering around with dodgy balance receptors - I'm always doing windmill arms.

15

I wake up every morning all excited and curious to see what the day will bring. If I could leap out of bed and do a cartwheel I would. Every new day is brimming with possibility.

Simultaneously, my daily life is consumed with managing a chronic illness that’s a brutal task-master. There aren’t words in the vocabulary of any language to accurately describe how appallingly sick I feel. The pain is immense. My face throbs. I lay my head gingerly upon the pillow.

Although I remind myself numbers are arbitrary, I have my cranky pants on this week. There’s no need for me to let a date on a calendar vex me, but it’s a non-arbitrary number that’s the problem. The number 15. The number of years I’ve been ill.

23 hours a day in bed, the norm for the last few years, is not fun.

You’d think I’d be used to it. I’m not used to it. Each minute weighs a ton. The clock on my bedside table has a red hand that ticks away the seconds. Sometimes I’m so frustrated I want to bite the clock in half. The only reason I haven’t is the match-stick wedging the battery in, put there by my late father. Whenever I change the battery, I think of him.

Years ago I was talking to a friend, older than me, and she mentioned that she was coming up to her 20th year of illness. Young, stupid and gauche, I gasped, “How have you not killed yourself by now?” She didn’t take offence. She seemed as surprised as I was that she was still here. Over the years we have both been equally obsessed with the concept of full recovery, although these days my obsession has reduced to a fervent hope for improvement.

Back then, as a much younger woman, the thought of 20 years of illness was so intolerable to me I genuinely couldn’t comprehend how she’d endured it. I’d made a promise to myself that if I got to the age of 30 and was still sick, I was allowed to top myself. I am not endorsing this mode of thinking, and long before I got to my 30th birthday I’d changed my mind. I am gosh darn thrilled to be breathing. One day I’d love to learn to tap dance, sometimes I even do a little shuffle in my slippers.

Of course what I really wanted was not to die, but to be given the chance to live, really live. Not this buried-alive existence that is severe illness.

This week I can’t help but reflect on the last 15 years, and ponder how little has changed for people with this condition over that time. Collating the research for an article really brought that home.

Not much has changed at all. I still have to brace myself for problems when seeing a new member of the medical profession. I still have to keep my mouth shut around some extended family and friends who exude the faint suspicion this is some kind of elaborate hypochondria. It is still exceptionally difficult to access disability services. There is still a woeful lack of good research and a corresponding lack of effective treatment options. There is still a lack of science to tell me whether it’s safe to consider having children if I were ever miraculously strong enough, what the risk is that I’d pass it on. It is still logistically hard to access basic health-care. So many uphill battles. Still. And I know I’m not alone.

There is so much need for awareness raising, for great research, sometimes I feel discouraged that my efforts, and the efforts of thousands of others, have not yet brought about meaningful change. 15 years and what? I feel like I’m whispering in a football stadium.

In recent years I’ve been blogging about my life, the lovely bits and the strange bits. It takes it out of me, I give up other things to be able to manage it. I appreciate everyone who reads, although naturally the numbers are not colossal, there is limited appeal in reading about someone who lives in bed. But am I just preaching to the choir? Does any of it seep out into the broader community? Is anyone more informed because I tell my story? I don’t know the answer to any of those questions.

What I do know is that despite my strong personal instinct for privacy, and the little cringe inside every time I put a post up, telling my story is something I can do. It’s not much, but it’s all I have, telling the truth about what it’s like. And the number 15, that’s the reason I have my cranky pants on.

These are not my cranky pants…these are my favourite pyjama pants. Happy days to you.

Victory garden

If I recovered next week I would garden from morning ‘til night. As things are now, I settle for thinking about gardening from morning ‘til night. It’s a lovely thing.

I’ve been flicking through a couple of Edna Walling books and wondering if I’ve found one of my garden soul-mates. She loved erigeron (seaside daisy) - until now I had never come across a garden writer, or anyone at all for that matter, who loves erigeron like I do. Edna also loved birch trees, dry stone walls, and bossing people around. Say no more.

I germinated some erigeron and my husband planted them out. The seedlings are doing splendidly and flowering with gusto. I show them to visitors, but perplexingly, there have been no cartwheels in honour of their brilliance.

When I was a whipper-snapper I thought gardening was boring, although I loved my grandmothers’ gardens.

Granny (maternal side) and Papa’s garden is a cottage garden in the true sense - a mixture of productive and ornamental plants. It tells the story of their life together and emanates simplicity, charm, and grace. There’s a small vineyard in one corner, a nod to Papa’s profession as a viticulturist. They are instinctive and knowledgeable plants-people, if I grow up with a skerrick of their combined knowledge I’ll be thrilled. Their garden is my favourite place in the world. When I travel in my mind to my happy place, that’s where I go. I'm not sure I'll see it again in this lifetime - I'm in Queensland and they're in South Australia, but it will always be my sliver of heaven.

Nana (paternal side) and Grandpa’s garden in Victoria was more formal. Beautiful mass-planted roses by the house, agapanthus along the drive. A whacking great bunya pine. I never saw either of them gardening, Nana worked full-time and Grandpa wasn’t well so I think they had a man who came to help, but Nana adored the garden. I remember helping her water the roses, she was always reminding me to give them a nice long drink. I also remember splashing in the bird bath as a baby, no matter the people who say you can’t remember things that far back.

In my early 20s I travelled from Queensland to Adelaide to convalesce at Granny and Papa’s, and spent many hours on the cane lounge gazing out the window at the hollyhocks, quince tree, lavender, and all the other wonders. On my return home, my mother gave me some herbs to grow in pots on the verandah. I toppled into garden love. As love so often does, it took me by surprise.

I was much stronger than I am now and could garden a little bit, though no heavy work. I used to read the same Digger’s catalogue for three hours at a time. My passion continued fully-fledged until I had the Great Relapse of 2004 which coincided with an apartment-living lifestyle and the prison of bed. Along with any activity not related to basic survival, my garden involvement shrivelled up.

In 2005 I started this blog, a little garden of words, instead.

Now I’m a born-again gardenista, working on finding ways to participate in a garden of dirt and leaves and weeds. My body is still recalcitrant - very much so, but I love gardening with my eyes.

I’m the garden sentinel, or maybe the garden is mine. There is something so perfectly hopeful about a growing plant. Each bud that emerges is a victory, an unspeakable beauty, a bold solace, a declaration of the natural rhythm of growth and expansion. The plants are generous enough to share all that with me. I thank them.

Flame tree

The temperature in Victoria last Saturday reached 47.3°Celsius, the most scorching on record.

I spoke to my grandmother that day, she said it felt like the hottest place on earth. The countryside has been in extreme drought for many years. She held the phone up to the window and asked, “Can you hear that terrible wind?”

That evening there were sudden raging bushfires, the landscape smote.

My grandmother’s house, owned and lived in by our family for three generations, is gone.

The flames leapt and swallowed 140 years of our family’s domestic detritus, treasures lovingly kept and collated, every item an anchor that held down memories, my entire paternal family history.

Irreplaceable family photos, old super-8 video, my grandmother’s wedding dress, my great-grandmother’s piano, vintage Wedgewood dinner sets, war medals, decks of cards, portraits, sheet music, painstakingly compiled family trees, school reports, silverware, jewellery, satin ball gowns, bicycle frames, the old stables. It’s all grey, black, stinking ash.

Nana keeps wistfully mentioning the marble fireplaces.

Bizarrely, the bunya pine is still standing – she says she would have been quite happy for that to burn down, it  always dropped too many prickles.

Yet we are truly some of the lucky ones: many people have lost everything. Family, friends, neighbours, pets, houses, livestock, livelihoods - entire country towns have been razed. The scale of the destruction is apocalyptic.

Nonetheless, we lost my father several years ago, and to lose the remaining artefacts of his life in a bushfire seems nastily capricious of fate. It’s as if the last skerricks of him have been erased.

My brother had been to the house the day before the blaze, and taken two dictionaries from dad’s belongings, one for each of us, and some of his cycling medals.

He is helping sift through the embers and rubble this week. The ground in some places is still so hot the rubber soles of his Dunlop Volleys were melting. Nothing has been salvaged, the flames made a ghost of everything.

Victorian Bushfire Appeal:

400,000 hectares were burnt.

Donate to the Australian Red Cross,

check out Handmade Help or OzBushfireAppeal on Etsy.

Autumn

The calendar says Autumn. The humid thirty-something days still say Summer. When I step onto the floor, the boards are damp underfoot. The air throbs with heat and moisture, and cicadas blare their approval.

External markers of time are perplexing. They seem out of kilter with my own experience. My body is paused, frozen in a season of its own, yet the earth continues its rhythms. The seasons turn, the moon rises, the sea wishes and washes, nothing is forever. I hold this in my mind and hope this relapse breaks soon.

There have been other relapses, too many to count. But this one is protracted. Several years in I’m starting to wonder: is this the new normal?

I was carving out a small, slow life for myself. I thought I was through the worst, that I’d never return to the long years of severity I had at the start. I thought the cycles of life had picked me up and deposited me in a place further along, that I could never go back there. Now I understand that the trip backwards can be fast, and the way out is slippery.

I want to hit the stop button on the outside world so I don't miss anything while I lay here, try to be patient, fail to be patient. I am always ready. Here in my season of waiting, I am ready.

Visitors

I'm a social animal, I like visitors. The right visitors are a welcome break from the 'in bed, in bed, in bed' routine. Sometimes they bring a little present, and one friend walks straight in the door and unpacks the dishwasher without asking. Love that.

But they can be a mixed blessing. Visitors breeze in, unconsciously oozing vitality. In comparison I feel like an unkempt puffy-faced rat. I can smell the vigour of the real world on them. I want to steal some, hide it away and feast on it later. If only it were a transferable treasure.

Much of my time is solitary, and my general head-space is one of acceptance. Acceptance without defeat. But sometimes I have contact with someone healthy and active whom I haven't seen for a while and KABOOM. It's the biggest, fire-crackiest reminder of everything I miss out on and it incinerates the self-preservational house of cards I have built to accommodate my mind. I have to reconstruct it after the visitor leaves. It doesn’t even take a visitor, sometimes just an email with photos of weekend fun, mention of a job, study plans, a picnic, a gig.

I genuinely love to hear about people’s lives. I really do. It's not jealousy. Jealousy implies a resentfulness of others, which I don't have. I don't want anyone else to stop what they're doing, and I actively encourage them to tell me all in great detail.

But I'm not always immune to the sharp reminder of personal loss that can come from hearing of another's activities, witnessing their vibrant glow. Like a paper cut, it can sting surprisingly. When you get sick, you don’t lose your normal life all at once. You lose it every day. There’s a constant bereavement for normality.

Pancakes and poppies

Two of my beautiful friends planned something wonderful. A holiday.

They would take a week off work, I would stay at one of their homes. They reproduced the essentials from my home environment as near as possible. Then they left me to rest.

But come meal-time, it was on. Meals were the joyful axis upon which our day spun. We ate pizza with roasted vegetables and fetta cheese. Smoked-salmon and mushroom risotto. Pad Thai with organic chicken breast. Gluten-free quiche with prosciutto and baby spinach. A warm salad of roast pumpkin, pancetta, rocket, buffalo mozarella, pine and pistachio nuts. We almost had sushi, another favourite, but ran out of time.

The last evening, when they were both exhausted from thrice-daily culinary efforts and waiting on me hand-and-foot, a simple pasta. The table was always set beautifully.

One morning when I staggered out, there was a huge red teapot brewing quietly beside a tall vase of poppies. Our plates were laden with buckwheat and banana pancakes topped with lemon-myrtle yoghurt, roasted nuts, strawberries and maple syrup. It was so special I almost cried; instead I crowed with delight.

In my room there was a gorgeous bed made with white linen, and a vase of pansies on the bedside table. My friend's cat adopted the foot of the bed - apparently she never sleeps in that room, but did the whole time I was there.

The weather was cold and the old wooden house creaked on its stilts. There were tiny gaps between some floorboards, I could see the earth below. My friend kept a fire burning in the lounge room, next to my room. I heard her get up in the middle of the night to stoke it, so I would stay warm.

I wondered what I'd done to deserve incredible friends like this. Such love and nurturing, without fuss. I was cocooned in all that is good. It was one of the best weeks of my life.

Gardening with my eyes

Back in May a friend and I went on an Expotition. Outside of the house! She had to wrangle my fold-up wheelchair into the boot of her blue VW. The wheelchair is not large, but is cumbersome. When she lifted it the wheels spun madly in the air. "Put the grapes on!" I yelped, worried she'd lose a finger in the spokes. She put the brakes on. I seem to recall we had this problem last time.

We nipped into the city where a gardening expo was being held - put on by my favourite gardening telly show. I was highly excited. I wore earrings shaped liked flowers. It felt marvellous and reckless to be out of my pyjamas.

The expo itself was not tremendous, but I was exhilarated at the temporary reprieve from bed and had a bonzer time. I expected lots of garden displays, like I'd seen on the expo footage from the other states. There were several piddly little displays in the middle, but they were surrounded by too many stalls selling things. I hadn't expected it to be so commercial. Also we'd chosen to go on a Friday thinking it would be quieter, even though it meant missing out on our friend giving a talk about Wollemi pines on the Saturday. In the end we regretted missing her talk, but we did say hello to some spiky Wollemis.
We saw a moveable chicken house like a wire igloo. My friend took a photo of it, and two men sitting beside it on a bale of hay pointed at themselves, saying, "You can take a photo of these two ole roosters if you want!" "Only if you get in there!" she laughed, motioning at the chicken house.

Our favourite display was a cottage garden by a local nursery. We gazed at it with reverence. There were white cosmos, I love white cosmos, and a silver and purple cabbage nestled amongst low pink flowers. A grey-haired lady asked us the name of the plant right in front of us. It was a rosella, a dark-red tropical fruit from which we'd once made jam. The lady wanted to buy one and proffered a notebook for us to write the name down. My friend drew a picture of it for her too.

I noticed this same lady had a fine leather strap wrapped around her wrist, connected by another short strap which then wrapped around her walking stick. This struck me as a very nifty invention because I'm always dropping mine. I told my friend about the strap later and she said I could make one for myself with a pretty ribbon. She has a lovely old-world innocence about her. I don't think I've heard anyone say "pretty ribbon" for years.

We left early. I stared hungrily at the autumn world as my friend wheeled me through the bumpy streets. There were dry brown leaves in the gutter. Road-workers in fluorescent orange vests. An androgynous-looking person wearing a cowboy hat smoked a clove cigarette. A nervous lady holding a clip-board stopped people and tried to subject them to a survey. Trees growing in the foot-path lifted kerbs and cracked asphalt. Everything was dry and dusty because of the drought. A couple strolled together, eating ice-creams. The audible traffic lights beeped. The sky was soft grey. I loved it all. I felt my cells swelling with the nourishment of seeing new things.

Let's start at the very beginning

Welcome, and thanks for visiting.

In 1995 I was an active little whipper-snapper studying at uni, on the precipice of that cliché about the world and oysters.

Then I got sick.

Time passed.

I tried everything. Everything, everything.

To my sincere surprise, I stayed sick. And the oyster, such as I'd known it, eased shut.

So we come to today. It's 2005, I'm in my late 20s. I live in Australia. I'm happily partnered. I like tea, books, design, corrugated iron, trampolines, gardening, politics, creative endeavours big and small, food, music, typography, good conversation, poetry, flora, fauna, and my laptop.

I've always disliked having my photo taken and I'm not too fond of boats, snakes, or variegated foliage.

I have a perplexing chronic illness I'd never heard of at the time of diagnosis. Illness doesn't define my identity or my existence, but it does have a peculiarly drastic impact, in that I have to titrate my every activity according to its whims.

I had a relapse a year or so ago and have been bedridden since. 

I'm not sweet and tragic like Beth from 'Little Women', I'm into living exuberantly. Elderly people often proclaim that they still feel 21, and it's exactly like that, I am my strong vigorous self on the inside.

This blog is little tendrils of a life unfurling in an unexpected way. I hope you'll read it gently.

Why, sometimes I've believed as many as six impossible things before breakfast.
-Lewis Carroll