Wednesday, January 11

a lesson from my husband

I went to pick Ben up from the hospital and this time he emerged not as staff, but as patient. It had been his turn to lie unconscious on the table. I think this is a better state of affairs than lying fully conscious on the table with engulfing hospital phobia, but that is not the point, that is just my brain feeling a tad traumatised about my adventures in child bearing. His nurse spared no expense on bandaging his leg, and his limp matches the bandages in its pronounced manner, keeping one leg entirely straight at all times. He clonks along, slow and rigid, surprisingly adept at avoiding bending his maimed leg. He doesn't err; he finds creative ways to always keep it straight. Pain is the deterrent, and a powerful one.

Oddly though he now walks, I would never expect him to bend it so that he would look more normal. It would be cruelty to suggest he pains himself to improve his performance or suit my pace.

Yet how many times have I bent my metaphorical sore knee, to keep pace with the unmaimed? I see it as instinctual and right for Ben to limp to avoid pain, yet I feel pangs of guilt for avoiding pain, as though I am selfish for staying ok, for not living on panadeine forte like I used to in my student days. Guilty, for carefully adapting my gait so that I won't damage myself, so that I can enjoy being alive. When I am pain free due to careful limping, I sometimes wonder if I should have done it cushy, that I had a quiet day and have no headache? Or ought I have stepped out, bent the injured knee, suffered more and contributed more? But how I detest pain which I could have avoided.

Is it a basic human right to reduce pain where possible?

For Ben's limp, I answer of course. It would be masochistic not to limp.

For my body, I pause.

I wobble on my tightrope. It's impossible to limp so well that I can avoid discomfort. I try, because I need to be well for Aurelia. I need to be very functional. It would be foolish to lie in daily comas because I worked too hard or socialised or stayed up late. Conversely, it would be idiotic to stay at home, live in squalor, and never see a human to avoid stimulation.

I cannot avoid pain entirely and will always be evaluating the wisdom of each outlay of strength. I am utterly weary of the analysis, the endless fumbling for wise decisions. The consequence free decisions of the well are a peace they are not aware of, whilst the decisionathon of my own life is a breeding ground for anxiety and analytic mania.

But if I can let my body heal a little, and feel joy not despair at being alive, and not groan ceaselessly to my nearest and dearest, requiring all of their care, because of the pace I have adopted, that seems right to me.
Right to minimise pain, to limp, to not keep pace, to respect my wound.

How compassionate we are towards a tight bandage, a white flag of legitimacy.

But I have no bandage.

Tuesday, December 20

i was seen // hangover diaries

When I was little and sick, my mum would fetch me a snuggly quilt, make perfectly crisped toast, sit by my bed and pat my back so soothingly that one day I would try to emulate that exact motion for my own young. Having your mother sitting there is the gold standard of being unwell, and it's harder to find once you grow up. You're so seen and loved in your pain when you're small. Symptomatically alone, but that's where the alone stops dead. There's no emerging from your illness and being asked "where were you? Oh you were in your room with a fever for three days, I didn't know." Nope, she's seen every limping trip to the toilet, and passed you water the whole time.

But now I'm grown, and no one is patting my back.

My cushion is damp. I have watered a lot of cushions and pillows these eight years, preserved them in salt. I don't soak them with gushing waterfalls anymore, because shock and grief have mutated into sober familiarity, a mellower, gentler beast. I sometimes think it's unnecessary that it still trickles there is a pool behind my eyes called 'chronic pain' which ought to be empty by now. I cry the exact same tears, the cause is unaltered, and the emotions have long been acknowledged and disected. My pool seems to have a refill mechanism when I'm lying quietly, and my body is raging ungratefully that I participated in life outside the home. How dare I. I was once asked, "but can't you use less energy when you're out? Tone it down?" No. I can't. It tumbles out, my small supply, and I watch by in trepidation, powerless to gain more power, or prevent loss of power. Powerless to prevent my own suffering.

The droplets are salty, but the salt isn't bitter.

The droplets are more, this is disgustingly uncomfortable, as usual, as expected. It's just as I knew it would be. It's identical.

No one can see into the misfunctioning cells, muscles, sense of balance during the time or afterwards. It's in the dark recesses of me. I can tell them, but it's so dreary and morose I can barely be bothered, so I will just feel it myself. If I'm not seen by anyone in this time, if no one can imagine my pain or view it, let alone cure it, how alone I am. How nobody I am in this moment. I must lie and wait, wait till it eases, invisible, feeling helpless and dispensable...but for my all knowing, all seeing, sky painting, language making, human weaving, gift giving God. So I am seen, I am not forgotten. I am as legitimate and valid as a mother's sick child.

This thought is warm and luminous.

On my porch this hungover December, hungover from festivity-x-suffering, sat a large woven basket with my name written on it. I unwrapped a large sheet of fabric encasing the contents to find no ordinary pre-packaged hamper. It was filled with home-made cake I could eat, home baked cookies, and crackers, and hummus, and bars. Sparkling water, tea, soap, berries, every conceivable festive, delicious and healthy thing in sweet pottles. It contained every special treat on the menu to those with sensitivies, many un-buyable. It was a bottomless pit of seriously thoughtful time consuming gifts, brimming with every thing I hadn't shopped for and hadn't baked and wasn't going to.

The note was from the mamas in the group I don't go to. One of the harder things all year was seeing and knowing that women with babies were meeting in groups and I couldn't manage to because - well, I had to nap twice a day and it fell during group times, and if I used energy seeing people I couldn't make it through to dinner time. The usual complicated trickle down of Chronic Fatigue Syndrome.

The note said that they dearly loved me. They barely know me, they haven't seen me enough. I have been missing from their times together, they met dozens of times times, and I tagged along twice. They're talking about the verb - to love.

To extravagently love someone who has done nothing for you.

It would be easier to make a huge handmade hamper for a person they had grown fond of all year, but no.

That hamper said: You are so seen. You are no outcast.

It was the most overwhelmingly golden standard, in adulthood - love, because they also know the "you did nothing for this, but I love you" kind of warm luminous love.

Thursday, November 24

to all the complicated ones

To all the people who like things to be perfect, who notice crumbs and stray hairs (and attached hairs with juicy roots) and endlessly remove them, then wearily re-remove them when they re-appear and try not to despair, but do.

All the people who notice feelings, their own which are bursting, or morbid, then moderate for a second, too short, then back to extremes. 

And all the decisions which were chewed to peices because there is always some losing in the winning and why must there be...this imperfect business is hard to accept...

And all the words which scurry around in heads from all the conversations, their own imperfect words, and the other person's words, the clashes and the synchrony, and the general mayhem of chasing them off to bed when they will not go, when they are still perky at 1 am in the morning and show no signs of settling down at three. 

And all the vibes between the words which are far peskier than the words themselves.

All the people who have strange rituals and want to kick and scream like two year olds because it all boiled up and spilled over and left them worrying they weren't quite right in the head, when they don't need an asylum at all. 

All the ones who have a reliable intuition, and know when they know.

All the plans for a perfect date which end in graves of dissapointment.

The ones who can't pick up the phone when it rings, and can't believe that it was engaged when they had finally psyched themselves up to call, the ones who get nervous on their way to friendly gatherings, nearly faint as they walk through door ways, and endure pounding hearts when the door bell rings. 

All the monotone skies which shouldn't affect the will to live, but do, and all the while sensing that many people aren't feeling all these things quite so acutely and aren't finding existing quite so hard. 

Then all the flooding self recrimination for being sensitive to skies and hormones and persons and medications and changes and things.

All the people like this are aware and raw and gentle and fascinating and worn out - its horribly uncomfortable, but goodness gracious me, you are my favourite of all and your presence is a balm and my feelings for you are not moderate at all and my intuition says we were meant to be on earth at the same time to comfort each other.

Saturday, November 12

post captivity complications

I don't want to say that I'm an efflorescent butterfly because then people seem to say things like 'I'm so glad you're better forever', and 'Now do every thing because you're a butterfly'. And then they get shocks like,
'But you said you were a butterfly, yet you seem to be in a cocoon, I'm so confused, did you mean moth?'

Life is in, out, up, down, waxing, waning. Serious waning for all us crescent moons. But we wax too, and I am increasingly convinced that we must not only converse about our woes if we want to accurately share our lives. There is a time to bawl and a time to squeal.

Some days, I'm a butterfly. After being a guttingly grovvely caterpillar for two years, it's surreal. I'm a butterfly, in the way that a clip-winged butterfly can be, if I'm calm and gentle, ever so calm, ever so unstimulated.

I don't quite know how to feel about not waiting by the window in a crumpled mess for Ben. For getting his message "The case has gone over I'm sorry, I'll be a little bit late," and thinking, well that's ok, I'm still able to stand, I'll chop the beans. I don't chop food, so it's a bit weird. I did the dishes, cared for my child, strolled for an hour, and chopped beans? Then I sat up (versus slumped on the couch) to eat dinner, in our sun drenched dining room.

It's a bit too glorious to feel that okay.

The trouble with butterfly days is this: I know it won't last and minute shards of sadness zoom around because I want to feel like this forever, because the relief is too excruciatingly nice, and the contrast seems all the more glaringly piercing.

I'm a living oxymoron when I'm euphorically pain-free, because my heart physically aches.

Is it actually good for a bird from captivity to fly in the expansive sky and then be returned to its cage? I lean towards, yes, its better than captivity it's whole life. But oh, going back in the cage.

I didn't know if other human beings also feel what I'm inadequately describing, for it doesn't come up in conversation.

But I found the answer to my question in a book I recently read:

Perfection is beyond the reach of humankind, beyond the reach of magic. In every shining moment of happiness is that drop of poison: the knowledge that pain will come again.

Dumbledore, J.K.Rowling

I had an epiphany reading that: I am seeking perfection once again, this time in emotions. Perfection is truly unattainable and mixed emotions are not my solo struggle but a universal reality. I always feel that the earth embodies these realities, and weeds springing up by daphne and jonquils and jasmine is proof.

The weeks that followed this passage were ones where I mulled and ruminated, granting myself permission to feel relief with a sprinkle of grief for the past and future. I felt a lot more peaceful once self recriminations for heart shards were removed. I thought, perhaps every joy is tainted because of the fallen world? It struck me as a fairly miserable thought, that every happy moment had to be part sad. I needed more reliefs and elations to test the theory on.

Out of the hopeless blue, one arrived. Our impling slept for nine hours in a row. No letters to warn me of her plans, no gradated steps. In this matter of sleep, I had finally annihilated my expectations, because it was the only way to be content. I had decided that the poison of expectation was not doing me any good, and I'd slowly picked it all out.

We had goofy shocked faces that morning. 'How could this happen to us?'

She might do it again in another six months I thought with ineffable happiness, high expectation me having done a solid 180.

Two nights later she did it again.

Deep sleep deprivation and ensuing pain will come again, but my joy was weedless, and curiously I don't have a sore spot under my left rib thinking about it. {When I say weedless joy, I refer to the following day. The actual night I lay on my bed worrying she had suffocated and died, and I strained to hear a cry, please, I just needed to hear a cry.}

Maybe heart shards during relief are a peculiar experience reserved for the heavy grief of eight years of mostly unrelenting illness?

Perhaps many joys will be less tainted by sadness, with a quarter drop of poison versus a dollop, with just a lightly held mental recognition of the transient nature of elation.

I cannot curse transient elation, for the same principal promises transient pain.

Nothing lasts forever.

Except eternity, and I have a feeling I will never tire of an earth free from poison.

Wednesday, October 19

chronic milk making

While I was pregnant, women who had raised babies themselves, and knew how under powered I was at the best of times, they must have felt a serious twinge of fear on my behalf. I remember clearly conversations which went like this,

“And don’t feel bad if you can’t breastfeed, because your health is more important. It’s ok to give formula. And colostrum {milk with extra super powers in the first couple of days} is amazing all by itself, even if you do a couple of days that will be great. ”

And I would say, with my lips, “Yeah, I will let that go if I’m really not well. I won’t beat myself up.”

But my heart was not in sync with my lips. Not remotely. I didn’t want to sound like the na├»ve new mum I was, spurting forth her untried opinions, so I kept my opinion to myself. But my opinion was that I would rather give her the best immune start to life and suffer myself for a year. Breastfeeding cannot prevent a baby from getting a chronic illness, but it’s the first gift of health I could bestow on her, and there has never been a gift I’ve wanted to give more because I’ve never loved a girl more.
I knew that even my well mum had been run down and needed daily sleeps whilst sustaining another life with her milk, so while determined, I was not expecting an easy ride.

A couple of weeks before she was born I started to express colostrum drop by drop, on the advice of my private midwife, because I might be away from her for the first hours, and because it’s a powerfully healthy thing for a newborn. I arrived at the hospital on the day of her birth with ten filled syringes to be put in the fridge, to the surprise of the staff who don’t usually see or encourage women to do this prenatally. I thought my hours of work and patience extracting each milliliter might last a while – so I was partly horrified and partly chuffed when I heard the doctor had given her all ten syringes at once, as soon as she arrived in Special Care. I had been her first medicine, even though I was still lying on the operating table, and that was worth it.

I was extremely blessed to have good supply, but I soon had to call upon my iron determination to feed because after a few weeks of decent times, things got bad and stayed bad for about four months.

In medical speak, I had recurrent white spot (sounds cute, feels like hell), recurrent infections (this should not have surprised me, infections are my specialty), vasospasm on one side, mastitis, and regular blocked ducts.

Four months feels more like four years when you’re breastfeeding, because young babies feed around the clock. So frequently that the scabs would just dry out a bit from the last feed, enough to make the next milk extraction excruciating, but not even close to healing. Then I would feed, the scab would be re-opened, and the cycle repeated. It was like being cut open with a knife regularly without anesthetic, day and night.  I had to majorly psyche myself up before her feeds, really prepare myself. I tried everything to ease the pain; every preparatory step before bringing her to drink - but from the moment of latch, I would frantically pound the floor with my foot and moan. I would try to breathe, but it was more effective to beat and groan, to try and stifle the murderous sensation with other sensations.

Ben wanted to be with me in the pain, he wanted to comfort me. But I was in a fiery hell of sensation, and would have been borderline violent if he tried to put a comforting arm around me. Maybe not even borderline.

I would say through gritted teeth after preparing myself to feed her,

"Ok. I'm about to do it. I'm getting ready. Can you just sit in that chair over there. And pray. And don't talk to me!"

And he would sit there silently, and watch me cry and groan. I needed him there rather than pottering around painlessly in the kitchen. I needed to know that he was sharing in my pain as I fed our girl, even though he couldn't take an ounce of it away. 

Sometimes I would express milk instead because I needed to let more healing occur and I emotionally could not handle another strong suck. But as she grew older I couldn't express enough for her whole feed and had to supplement it with my freezer supply, and it wasn't an effective emptying method so I would soon get blocked ducts and be forced back to letting her latch. 

One day a nurse taking my swab told me that she doubted I would be able to heal while continuing to breastfeed. This woman who was not a feeding expert and ought not to have shared her personal opinion, she preyed upon my greatest fear. 

I went home and talked to my Mum. My own mum had been damaged, and kept feeding, and healed. Then I talked to my friend, who had healed while still breastfeeding. Next my Lactation Consultant, who said that every person she knew who really really persevered had gotten through. And Ben, he was going to sit quietly in that armchair, and not make a sound.

I could not see for the life of me how healing could occur while each feed undid the scabbing. It seemed impossible to me. So I left that hope and belief to people who had been there themselves, and set to work on the only path possible for discomfort. 

Right now, present moment.

I focussed on getting through one feed, however bad. 

Then celebrating. Walking around the house feeling the light delicious emotion of relief. 

One hour later, relief giving way to dread. 'Can't go through that again,' circling in my head. 

Baby crying, obligation reigning, going to that awful place again. 

And that was how it passed. It wasn't a calm, breathing, full of hope affair. There was no bonding with her, no staring into her blue eyes with a smile. I was channeling psycho, moaning, arm flapping, mega-tense mother to her while she drank. I was gritting my teeth and only half believing that deeply ingrained phrase that the only way out was through.

Through I went, as Ben quietly watched and acknowledged and other people voiced the hope I couldn't feel. I couldn't write about it because I was submerged.

Concurrently, vertigo had entered my life at two weeks post partum. Vertigo took from me one of the senses I had most taken for granted, and assaulted my will to live. I didn’t even know that looking out the window and seeing a stable picture was one of my favourite things till it was gone. I didn’t realise that lying in bed with your eyes closed and feeling completely still, that is of the life’s greatest luxuries. Life was simply undesirable when there was no peace; a constant moving haziness which made me feel ungrounded and woebegone. 

At the time we didn’t know if vertigo was due to breastfeeding, or being up in the night. I assumed it was both, a muddy combination of two things that my body detested.

Occassionally I wondered if I weaned, would my nemesis vertigo leave? And would that be a wise decision, to be a more well person, wife and mother? If someone could have promised me that weaning would take the vertigo away, I may have weaned. But because I didn’t know, I did not want to wean and receive the rude shock that I still had vertigo, and my milk (and baby whispering powers) had dried up.

After four or five months, feeding became pain free. It happened gradually. At first there would be a day with no infection, no white spot, no blocked ducts, and then after the next bout of trouble I’d get a longer pain-free stint. It happened just as I had stoically and tragically realised that I might have to feed in agony for a whole year. I had lost hope that my pains could ever be ephemeral. I knew few women who had experienced problems for so many months, so I assumed I was stuck in this forever. I thought darkly that it was classic me to have a plethora of issues and chronic pain. I also avoided talking widely about my issues because I didn’t enjoy being told that it was ok to give up – I wanted to be encouraged to persevere.

Now the vertigo is like the tide going out at the beach. A lot of the time it is receding, but sometimes a wave lands high on the shore and I wonder whether the tide is actually going out after all.
It is always precipitated by extra use of energy, or sickness, or the baby waking frequently at night.

I still breastfeed regularly during the day, and once or twice at night – similar to the early days, and so I can finally say for sure that breastfeeding was not the single reason for the vertigo. It can’t have been soley night waking either, because I have not slept through the night for twelve months straight, yet the vertigo continues to ebb away.

I imagine it was many ingredients all smooshed into one eruptive mound: being up for long periods at night, producing so much extra milk initially, recovering from major surgery, the immense energy given to adjusting to a completely new life of work, and my body restoring itself after carrying a baby. 

The fight to feed has been rewarded many times over, with this ability which makes mothering easier for me as an unwell person. I continue to be in remission from POTS, a result of pregnancy and breastfeeding; I take hot baths without fainting and stand without blacking out.

I groggily feed her whilst still lying down myself for two minutes in the night, and she falls back asleep. I leave the house with nothing in my bag for her. I calm her tears and she pops off with a happy smile on her face. I read how good this milk is for her, I read that I receive an oxytocin hit every time I feed her. I hear people talk about how it’s odd to feed a baby who can walk or talk, and again I quietly hold my opinion inside. I fought to give her milk and I’m not about to fight to end her enjoyment of it. If she can verbalise how much she loves it, all the better. For now I am perfectly content with the spontaneous claps she gave me last week as she drank. 

Wednesday, September 21


I have a tumultuous relationship with my mind. It's a beautiful and terrible place, one I know a little better for not having had as much external stimulation in recent years. My knowledge of it has alerted me to the fact that it could do with a little cultivating.

I am prone to wandering thoughts, epic social post-mortems, shallow breathing, fear of sitting in physical discomfort, worries about how I can't keep going, and a desire to flit between distracting medias to avoid reality, which makes me less content and more terrified of existing fully in the gift of the current moment.

Several medics have encouraged me to explore the concept of mindfulness, and just after the latest encouragement, a friend alerted me to an online, free, six week course through Monash University. I have begun it, and it's bite sized and very encouraging.

You can still join now, and exercise your mind: