Sleepless Nights

Blog

  • Disability, depression and the invalidation of my lived experience.

    It’s been 18 months since I was diagnosed with postnatal depression, and twelve months since my brain was stable enough to come off my antidepressants and begin coping again. But the process of depression, like a lot of things, is not linear, and I find myself slipping back into old thought patterns quite easily these days.

    Worry over starting a business is part of it, of course – we’ve invested time and money into this venture and as the launch day sneaks closer (September 12!), my stress levels rise.

    But it’s more than that I think – a series of little things really. The anti-disability sentiment hanging around the joint lately doesn’t help. When a good portion of society is screaming that you’re worthless, it’s easy to dwell on all the things you can’t do, rather than the things you can.

    And if I hear one person say “There’s no such thing as can’t” in a smug self-congratulating way, I may just hunt you down and personally stab you with a chopstick repeatedly until you can’t move.

    It’s a lot of things and it’s nothing. Nothing and everything.

    I’ve got an appointment with my doctor next week, ostensibly to fill out the paperwork Centrelink has demanded in giant red letters, asking me to prove my (degenerative, incurable) disability hasn’t magically improved, but I will be discussing the possibility of remedicating at the same time.

    At any point when I stop writing, or leaving the house, it’s usually when I know I need help. So I’m asking for it.

    The process of reassessment for disability support is also a factor here of course. Having to prove, over and over again that you’re telling the truth, that you have a problem, that it’s real, that it causes your life to be impacted in ways they can’t understand – it’s stressful.

    I knew this was coming. I’m under 35 (clearly disability is harder to catch if you’re young) and I’m exactly the person the government is targeting with their current hate campaign, but I thought we’d have a little more time before I had to jump through metaphorical hoops. After all, the budget legislation hasn’t even passed yet.

    But no matter. I can’t change it, I can’t fix it and I can’t magically fix the genetics which made me who I am and therefore start ‘contributing to society’, so I may as well just suck it up.

    It’s still a bitter pill to swallow, to be beholden to a bureaucrat who decides whether you starve or not.

    Someone, quite snarkily, told me I was not my genetic condition and I laughed and laughed and laughed. Because I am. Because this disabling condition is as much a part of me as motherhood, or the love of books and writing, or the fact I have black hair and hazel eyes. It’s part of me, sunk deep, and it impacts every single choice I make every single day. I can’t just take it off and have a break every now and then – it’s ME. It IS who I am, and I find myself resentful that someone would assume I could just delete part of my own story to… I don’t know? Stop talking about it maybe? Stop making them uncomfortable with the fact that disability can strike anyone?

    I don’t know, but I still stew over it occasionally. “You are not your genetic condition” like somehow, my experiences as a disabled woman don’t matter. Like somehow, my disability is “other” to my identity.

    Clearly this is a complex issue for me and I’m still working through it in my own head, but telling me I am not my genetic condition is akin to telling me to just get over it. To just ignore it and be … someone? someone else?

    I don’t know.

    It’s so much more complicated that a simple throwaway line suggesting my disability is not integral to who I am.

    There have been a number of deaths in the Ehlers Danlos community lately. No one I knew, but friends of friends and it’s impossible to not be touched even slightly by the knowledge that EDS kills.

    I am lucky in that my subtype is unlikely to cause aneurysm and death, or organ rupture. Crippling pain and dislocations, sure, but my doctors and I are pretty sure I won’t die of EDS related complications.

    Not everyone is so lucky.

    In the meantime, I will continue to potter around the house, doing the bits I can do and napping when I’m done. I’ll deal with yet another series of complaints when I can’t attend family gatherings because I’m too exhausted. I’ll hug my children, read a book, make some soap.

    And hopefully, the antidepressants will help me get my head in order again soon.

     

  • Lost parcels, frustrations and soap. Lots of soap.

    Today I have spent time on hold with three different companies chasing products I ordered.

    So far the only success was TOLL IPEC discovering my castor oil was on board for early delivery, which I think was a bit magic because it didn’t get found until I complained. It still took over a week to fly from Sydney to Hobart, but DETAILS.

    My shea butter is however, still missing. The seller’s postal service (it was posted from Senegal) says it reached Melbourne on the 10th June. Aus Post has no record of it and Customs, whom I feared had it, don’t.

    Now we wait for the seller to instigate an investigation at her end. In the meantime, if you find 10kg of shea butter on the side of the road somewhere, it’s mine and I need it.

    In the middle of all the chaos, I made 5kg of lemon soap with honey for a large pre-order.

    There’s nothing scarier than working with large amounts of soap batter when it can decide to misbehave at any moment. Today everything played nicely and it’s now waiting to saponify and harden so I can cut. I had to tweak the recipe a little to make it softer initially, because DA DA DUUUN, I have a new soap cutter and it is amazing.

    Isn’t it beautiful?

    Frogpondsrock bought it for me as a business opening gift. I am in love.

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    In other soap news, I’ve been making a lot, planning a lot, and working a lot.

    Green Apple Soap with shea butter.

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    And here is a photo of the eucalyptus and spearmint foot soap I mentioned in my last post. I hadn’t cleaned it up after cutting yet in this photo. It’s all put away and curing now, neat and tidy.

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    It smells amazing and I can’t wait to try it out.

    As a quick heads up, if you’re interested in large amounts of soap for Christmas presents, pre-ordering is your best bet to make sure I have the stock available. Two people have already. Email me to work out the details. If you order over 20 bars, you get wholesale prices.

  • Failures, catastrophes and starting a small business

    The problem with starting up a small business, is that most of the time it’s only us to do the work. This leaves me counting down the weeks until the shop opens with no small amount of panic.

    Also it’s the end of June and my mental health is never good around the anniversary of my Nan’s death, funeral, and the subsequent family implosion which occured at the same time.

    So I’m busy and suffering from a little overwhelm.

    But it’s all good. We’ll pull it together and launch successfully and it will be amazing.

    Of course in the meantime this means I’m not online much – spending time making and stamping soap, designing packaging, making sure the curing soap gets turned regularly and the hundred other jobs we’ve got going on.

    —

    I made an exfoliating foot soap this morning. The plan was a round soap, pale green with darker green and blue swirls. I’d scented it with spearmint and eucalyptus and it was looking fantastic.

    I was just about to pour it into the moulds when I realised I’d forgotten the ground pumice stone. I’m not quite sure how an exfoliating soap without any exfoliant in it would work, but I doubt it would be successful.

    Carefully I sprinkled pumice stone on top, hoping I could maybe stir it in without destroying all the swirls. I still had a little bit of colour to swirl with after all.

    Nope. I tried, Internet. I tried really hard, but by the end, my soap was a blue green colour and nary a swirl in sight.

    I poured it anyway, only to discover large lumps of pumice in the last two cups of batter.

    Back into the bucket it went for a quick stick blend and any hope of swirls dashed.

    Dashed, I say.

    Luckily the blue green colours I picked blended really well and it looks like a lovely aqua green/blue colour.

    Not what I’d originally planned, but pretty all the same. I thought briefly about adding some titanium dioxide to a portion of the batter and trying to add a lighter swirl for contrast, but by that stage the batter was heating up and thickening and I needed to get it back into the moulds.

    I poured it and it’s currently all tucked up in towels to speed up the saponification.

    I rather like round soap and I don’t have enough of it made, so it’s going to be a few weeks of playing with column moulds, in between making bucketloads of soap for a large pre-order.

    It’s exhausting and exciting and amazing and just so much fun. Even with disappearing swirls and the thought of hundreds of bars of soap to cut, stamp, package and list online.

    —

    There’s all kind of advice out there about starting a small business.

    A lot of it is similar to advice given to bloggers. Create your brand. Behave professionally at all times. Never complain. Never mention mistakes or people won’t trust you.

    I’m not sure. I think there’s good points to the advice, but also, I’m a real person, working out of my house, with problems occuring. I made soap while the children were occupied doing something else (my soap area is gated to stop pets/toddlers causing themselves harm), only to discover Evelyn had been so silent because she was busy using a batch of sample soap bars as toy blocks, and she’d also pulled out every single nappy in the house and covered the living room with “snow”.

    And I don’t think there’s any shame in mentioning the slight panic when I just checked the freshly poured soap, found it almost too hot to touch and had to frantically find space in the fridge to stop it overheating. I may have dropped a bottle of orange juice on my foot at the same time.

    There’s a difference between being professional and unapproachable.

    I’d very much like to talk about the process of soaping with you guys, but how can I do that without also talking about the struggles of setting up a small business with no capital? About how every spare cent is going on soap ingredients so we get everything up and running. About my disgust that the castor oil I ordered is going to take over 12 days to reach me according to the tracking number, and that until it reaches me I can’t start the order which really needed to be made this week in order to give me time to remake in the event of castastophe.

    It’s a balancing act.

    Luckily I am good at balancing.

    —

    Mental health problems aside, it’s been a rough few weeks here for me. The realisation that people have strong opinions about my reproductive organs threw me for a loop and I stopped writing, talking, thinking, while I came to terms with this.

    Of course, it doesn’t matter what people think. We’re happy, and that’s all that counts, but the judgey in the meantime is hard to deal with. I won’t deny that I’ve spent a fair amount of time reading, escaping into other people’s worlds for respite.

    But eh. There’s nothing I can do about it and not writing is worse for my sanity than people judging, so again. Balancing act.

    —

    In summary, life is incredibly busy, incredibly fun and we’re all doing well.

    How are you?

  • Darkness and light

    Five years ago, we clustered around a bed in a palliative care ward, waiting. Holding hands, talking, but mostly, waiting.

    It didn’t take long in retrospect, although the hours felt interminable, waiting for the next breath to come, the death rattle heavy in the room.

    Until the next breath didn’t come and it was over. Months of appointments, of waiting, of saying goodbye over and over, culminated in one sharp moment when it stopped.

    And then we all breathed again and had to go on without her. She stopped, but we failed to stop with her, and the hole of her leaving grew bigger as we missed her.

    —

    The first sign: wild ducks fleeing, circling frantically overhead like a crowd of mismanaged school children, no one sure where to go next. They hide in the trees and fall silent.

    Not a bird in the sky, until we look closer, and see them, circling. Hunting maybe, or courting.

    Round and round the eagles go, my eyes spotty from looking up at the bright sky, a cup of tea warm and heavy in my hands. The undersides of their wings glint gold in the sunlight, bright enough to make my eyes tear up as I look away.

    We watch until they disappear over the horizon.

    The crows return first, flying over, cawing their life loudly. Then the sparrows. A rosella. Our neighbours pigeons.

    Life goes on, even with the shadow of death hanging over us.

    —

    Forty minutes to make three kilos of soap. Twenty minutes standing outside. Ten minutes reading. Today is broken up into blocks of minutes as we count down.

    For a moment, everything will stop.

    And then I’ll draw breath again and on we’ll go, into our sixth year without her.

  • June has stolen all my words

    After five years, it feels strange to come to this place, here, and talk about grief. About how it changes, and yet doesn’t. About how grief never leaves you, the great whistling hole through your centre never closes right over.

    Grief is grief is grief.

    Missing someone never quite stops. Things happen and I wish, I wonder, I want.

    It’s been almost five years and I don’t have words anymore.

    —

    A series of events conspired to send me into a place mentally I haven’t been for a while. I feel raw, the bandaids torn off with no warning. I think about writing and stop. Turn away. Do something else.

    Do you really want to write about that? Open yourself up for more judgement?

    I don’t know.

    I’m tired. I’m tired of feeling like I need to defend my life, my choices, my right to be here.

    On Stateline last night, a family of acrobats twisted and twirled through the air, circus tricks and stunt work. They glossed over the fact that the house has no running water, limited solar power, there’s no money. Focus instead on the happiness, the family togetherness, the joy that living an honest life brings.

    I watched and I laughed and laughed, feeling a kinship with a family I’ve never met.

    How dare we be happy. How dare we choose a life outside of the suburban normal, nine to five, a salary and prospects of more debt to keep up with people we don’t like.

    How very dare we.

    —

    I can see them, the unhappy people, hiding in the corners here, judging, waiting and watching like a dog waiting to be thrown a bone.

    I’m disabled, I have to right to happiness. I ought to be miserable, a loser in the genetic lottery.

    But really, I wonder, why does the life of one small Tasmanian family offend them so much?

    —

    It’s all tied to grief, to missing, to yearning. Someone came in and stomped around, tore down my walls; my defences. I need a thicker skin.

    Maybe then I wouldn’t feel so sick when I think about writing about my life still.