Sleepless Nights

Author: Veronica

Ennui and exhaustion. Markets, and soap.

The packing hangs over my head, like some sort of spectre. It whispers at me. Why are you writing? There’s soap to pack. Real work to do.

Shhhhhh.

I have a market tomorrow. I will wake up at 6am and triple check my boxes to make sure they’re packed properly. I’ll ignore the dark and make tea, coffee, whatever it takes to wake up. I’ll get my family out of bed and rush us out of the house as the sun climbs over the hills, highlighting the cold in the air.

All I want to do is lay in bed and sleep, blissful sleep. Evelyn hasn’t been sleeping, keeping me awake until two, three, four am. She won’t sleep, can’t sleep. Her pattern is all fucked up and here I am, paying the price with days of no sleep. And then she wakes up at 7am, tired and crotchety, like a tiny little fluffy headed gremlin, grizzling and grumbling until I get out of bed (PUT PANTS ON MUMMY! YOU PUT PANTS ON RIGHT NOW) and settle her onto the couch with breakfast and warm milk and cartoons.

By that stage, there’s no point heading back to bed. I’m awake and there’s real work to do. Soap to make and pack, a business to run.

It’s okay though, because my new paper arrived and packing soap will be interesting until the novelty wears off.

I get sick. I lose 5kg. I can’t muster up the energy to do anything. My skin breaks out and I get a coldsore, but shhhhhh, because soap needs packing and there is a market tomorrow.

I forced myself to make soap the other day, full of ennui and exhaustion, I printed out my recipe and began.

It didn’t take long to remember why I love this work, love this job. Soap is soothing. You follow the recipe, smashing science and art together, creating amazing things.

It’s the process. The making, the swirling, the setting to gel. Photographing, cutting, photographing again.

The packing is my least favourite job, right after taking inventory and paperwork, but it’s soothing still. Always soothing. Cut, fold, wrap, sticker. Lather, rinse, repeat.

I enjoy markets, mostly. They’re hard work, but the payoff is lovely. Talking to people about soap, helping pick scents, making money – what’s not to love?

(The cold mornings, packing boxes, frost on the windscreen. Tired children, grumpy children. Packing up. Buy my soap so I don’t have to take it home, please fortheloveofgod.)

But my newest favourite person Moire has promised to bring my nephew down to visit at the market, so there will be highlights. Smooshy delicious baby.

I’m not sure I mentioned his birth here – my brother, David, and his partner, Moire, welcomed baby Ruarígh (Rory) into the world last month and I am besotted. He is absolutely divine and I spend all my time conspiring on how to get my hands on him more often.

See, divine.

So I will pack soap, in readiness. I will attempt to force a nap on Evelyn today so she doesn’t treat this evening like naptime and stay awake all night (again).

And tomorrow, I will smile and sell soap, because I am good at it, and I love doing it.

—

Market is 10am-3pm at Howrah Recreation Centre if you’re in Tasmania and interested in coming along to say hi.

May 30, 2015
When the winter winds come

Sometimes, it’s the simple things which make the largest impact on me. I was cold this morning. A long market yesterday and a weakened immune system conspired to see me catch the virus which has been winging its way through the school community. I crashed hard yesterday after I arrived home, my temperature spiking and my shoulders aching under the weight of their viral load.

I was cold this morning, and so I walked to the bathroom and filled up a hot water bottle directly from the tap. Simple movements. Remove the lid. Tip the cold water out. Run the tap. Curl up, warm now.

We didn’t have running water when I was a child. When I wanted a hot water bottle in the evening, you had to fill the kettle – fire heated when the fire was going, electric when it wasn’t – then fill the water bottle with boiling water, taking care not to scald your fingers. Wrap the bottle in a pillowcase to avoid burned toes.

Sometimes I don’t appreciate the privilege I have here, the power points, and the hot water which runs when I turn the tap on. Pipes which no longer freeze, and a fire which warms the entire house easily.

I know my children don’t appreciate it, but that’s okay too. Sometimes not knowing what you have to be grateful for is the biggest privilege out there.

It’s been cold here. The kind of cold which worms its way into your bones and takes up residence near your spine, sending shivers downwards periodically. The cold which settles, waiting for you to forget about the warmed water bottles and the fireplace, waiting to grow into an aching gnawing pain in your joints until you just want to move someplace it’s sunny year round, eating tropical fruits from the tanned stomach of your lover while the sand shifts under you both.

It’s been cold here, and I don’t deal with the cold very well. I huddle in the warm places, curled in on myself, waiting for my brain and hands to catch up with the ambient temperature of the house as it rises.

Our wood has been wet and lighting a fire is like coaxing orgasms out of a dead marriage. There’s so much work and then suddenly, flames! only then they’re dead again and you’re left cold and railing at the universe, contemplating throwing oil on the fire and waiting for everything to explode in your face.

I read an article earlier, about some insignificant fact. It was poorly written, and then the byline: This author has over 650 essays published in magazines. I really should start writing again. The cold kills my creativity. Any sparks I have are directed towards the fireplace in the hope that something small grows into something which can warm us all.

It’s almost June, which means winter is nearly here. I keep poking at my winter wounds to see how far they’ve healed. Does June hurt as much this year? How is your missing, Veronica? Does the wind still whistle cold and icy through the centremost point of your grief? Poke. Poke. Poke. How does it feel?

I’m too busy to wallow, too busy to indulge my missing, which sits like a tiny icicle in my heart. I watch my children and see my grandmother in their faces and know how much she would have enjoyed their tempers, their wrath, the tiny burning embers inside them which keeps them fighting and shouting long after anyone else would have burned out. Oh, how I admire their spirit in the face of chores and rules, even as I struggle to press them into some sort of respectable human shape.

It’s been cold here, and so I am curled up with my hot water bottle full of warm water, and hot tea, and warm snuggly children. We will count the days ahead as Winter rolls over us, leaving ice and fire in its wake. We will huddle while our breath hangs in the cold air, waiting for the warmth to return, because it always does.

Eventually, it will be Spring again and I will celebrate with tiny leaves and plants, and dreams of the things to come.

May 25, 2015
Mother’s Day Grief and Disability

When I was ten years old, my mother had reconstructive knee surgery. I spent the next few weeks helping my father keep my little brother entertained, playing cards with my bed ridden mother, and helping my father with things around the house.

Mother’s Day that year, my mother and my grandmother got together and took me out for lunch, the three of us together.

I can still remember how special I felt, sitting there in the middle of the dining room with my two favourite women.

Then there was dessert. I watched, eyes wide, as another table ordered the blueberry dessert. One scoop of ice cream in the bottom of a parfait glass, covered in a mass of blueberries, and topped with whipped cream.

I wanted it. I wanted it so badly. Blueberries were a rare occurrence in my childhood. Overly expensive for a tiny amount, I rarely got them. I can remember how large the parfait glass looked when they delivered it to the table. A mess of whipped cream and what must of been nearly two handfuls of blueberries in syrup.

I remember that it was almost too much for me, that the three of us shared it in the end. I remember my mother’s face, that she could give me this, that sometimes, blueberries are enough to make up for weeks of her being in bed, going slowly insane with boredom.

Mother’s day is bittersweet for me. People assume because my mother is still alive I carry no grief on a day like today. But my mother and my grandmother together were two halves of a matriarchal whole which brought me up. Today, while my mother is still alive, my grandmother continues to be dead, and I miss her every day. She would have loved my children so, loved her newest grandson, three weeks old and cute as a button. She would have delighted in them.

But she is not here, and so my day is tinged with grief.

So while many mothers across the world are celebrating today, I’d like to take a moment to recognise all the motherless children, and the childless mothers. To everyone who is grieving today, I hope your day is gentle and with moments of peace.

—

I don’t write much when things are going well. I have limited energy, and I’m expending it all on getting my business off the ground and successful. People underestimate how much work it is, how much time and money gets sunk into a fledgling business.

My creativity has dwindled, caught in the change of seasons and masses of soap to package. My hands and heart are tired and I need to write more, write harder, remind myself that I am doing okay, that things will grow, that one day the business will pay for itself and more. One day I won’t count every penny and add up which bill to pay this week.

Starting a business is a long term plan, not a get rich quick scheme.

Working from home is a beautiful thing, mostly. On one hand, if my EDS is playing up, I can take a nap, work on social media, do label design, research, paperwork. On the other hand, it means I am always working. From the moment I turn on my computer at 7am, to when I switch it off at 11pm, I am constantly tweaking recipes, researching, writing lists, emailing suppliers, marketing.

I don’t stop working, ever.

EDS is an interesting beast, in that I can hold it at bay for a time with good painkillers, diet, vitamins, and adrenaline. But the gates only hold it so long and eventually, if I don’t practise a strict self care regime, I crash and end up spending a fortnight mired in brain fog, with pain the painkillers don’t touch.

So I harvest my energy. I spend a lot of time weighing the pros and cons of each action. Will this market be worth the four days I’ll be unable to function afterwards? Can I attend this birthday party? What about doing that other thing I want to do?

It’s a juggling act, and it never stops. Sometimes too, events show up at the end of a long month and I just have to say no, I cannot do it. I am too sick, too tired, too broken.

I’ve been making a lot of simple soaps lately, because my hands won’t hold the jugs to do multicoloured swirls. I’m taking pleasure in their simplicity and trying not to frustrate myself over my inabilities.

Simplicity is a beautiful thing. Simple soaps, simple plans, simple ideas.

It’s the small things which get you through the day.

—

I am looking at my curing shelves and I have lots of soap to package, samples to put together, soap to make. I’m behind on restocks, on marketing, on everything.

But that is life, and it will be okay.

May 10, 2015
Winter is coming.

May 4, 2015
“Do not let your disability define you”

It’s what I hear, over and over. “Don’t let your disability define who you are! You’re not your disability!”

See, the thing is, it does define who I am. By its very nature, disability defines who you are as a person. I am not separate from my disability. The part of me which relocates joints, and vomits at 2am, and takes the highly addictive pain medication I need to function – I can’t just cut that bit of myself out and throw it away.

I am disabled.

Ehlers Danlos Syndrome is a sneaky disorder in that it often presents as an invisible disability. I am not (yet) in a wheelchair. I am not visibly sick. I don’t have a mark on my forehead you can see, nor do I wear tshirts which say “I AM DISABLED AND IN PAIN PLEASE DON’T BE A DICK” although maybe I should.

Yesterday I did something to my wrist. The pain shot from the tips of my fingers to my elbow. Crippling debilitating pain. I couldn’t move my arm, or type, or use a mouse – let alone make soap or body products, that handy thing which actually allows me to pay my bills lately. I was incapacitated.

And let me tell you, it hurt, and I wandered around the house looking piteous and waiting for my pain meds to kick in.

Eventually something went CLICK in my shoulder and like magic, the pain eased, leaving behind only an ache in the bone. I had wondered if I’d pinched a nerve when my shoulder slid around, and there it was, the proof was in the relocation.

Which all goes to say: Mostly I look fine, but if I do not let my disability define what I can and can’t do, then I get sick. Sicker. I push too hard, to fast, and wind up in bed for a week. I get seriously unwell, and I can’t regulate my own body temperature or blood pressure. I can’t keep food down, or stand up without being dizzy. And when these things happen, my ability to use my muscles to keep my joints in position becomes severely hampered and I end up a little puddle of bones and goo and pain, none of which goes together in the correct order.

So it’s important to me, to let my disability define me.

I’ve been pushing too hard lately, and everything fell down around my ears early last week when my blood pressure refused to rise and I spent two days on my back with my legs in the air eating salty chips. Not unlike my attempts to get pregnant, it was frustrating and awkward at times, and eventually it passed.

It passed because I listened to my body, mainlined salt and electrolytes like they were going out of fashion, and let myself heal.

Well, sort of. I still had to do two markets in amongst this and all I can say is thank god for adrenaline.

The social model of disability suggests it is not my body which is the problem, but society’s refusal to accept disability and make allowances for it. This is why I work for myself, not in a full time job. It’s why I structure my life the way I do, and it’s why I still have to field statements like “don’t let it define you!” and “you are not your disability.”

Well meaning statements, true, but idiotic all the same.

My disability is not something I can just turn on and off. As much as I would like to leave my house more often, I don’t. A wheelchair is in my future, somewhere. These things are part of who I am and how I identify with the world.

I can’t just remove them from my psyche.

Trust me.

April 15, 2015