Friday, December 19

my flute, the closet, and i

lyshaeskro:  Appreciating the gift that I have. Love being able to express myself this way.

I’ve been spending time in the walk-in-robe this week.

When I was a young musician, I selected the room with the most echoes and delighted in the sound of my playing which filled every nook and cranny. The reverberance of our wooden floored home covered my flaws, and even a cracked note sung out with beautiful deception.

My first flute lesson at the VCA was conducted in my teacher’s brick office. Not only was it carpeted, but he had added panels of foam and carpet to the walls to dull the sound. There was nowhere for the sound to bounce and rebound. When I played a note, it stopped dead at the end of my lip plate – even my best notes sounded woeful, brittle, and a far cry from the sonority I enjoyed at home. It was all cardboard and no angels, and that was a shock. I was and am terrified of flute lessons, and the combination of nerves and a damp room made for humbling times. Humbling and sometimes tearful times.

I began to realise that I would best improve my sound by playing in the rooms which showed every crack, waver, and weakness. I learnt that to sound beautiful in a concert space, there must be many ugly hours in a damp room smoothing out every angle of the note.

This is why I have selected the closet for my practice space. I have a tall stool in my cubby, and lean my back against the shelves of clothes with despicable flute posture. Technically there is no reason for me not to play in my wet lounge room, to indulge in the sound now that I am no longer playing seriously. But I am a creature of habit and conviction, and I don’t want the lies of my lounge.

Our dog Wolfgang is extraordinarily musical in the howling way, and perhaps we shouldn’t have named him after such a prolific composer. His over powering accompaniment to even my tone exercises is another motivation to hide amongst my clothes in the dingy wardrobe.

This week I pulled my pure silver flute from its case, and in my dead nook, played some cardboard notes. I’d been asked to play Christmas Carols in Sunday’s service, and this required my lip muscles to remember. I invariably choose Paganini’s 24 Caprices for practice, and long notes. On Thursday night I headed for the two hour rehearsal and blew out some Silent Night.

The muscles in my shoulders and neck began to ache early in the rehearsal. They only ever began to kick up a fuss when I got chronic fatigue syndrome. They ache right up into my head, and produce this dull endless headache on the right side. When I came home, I got my heat pack, and Ben gave me a tough massage, and applied Chinese Medicine heat patches. The next day, the pain is established and unrelenting. There will be more massages, and more heat patches, and then there will be the actual service which will flare up the discomfort even more. And all the while there is a never ending headache.

I look at my flute, and I hear my Paganini, and I want to play for hours. My love has not faded, it cannot fade.

Ten minutes is enough to set my muscles into pain. My love hasn’t faded, but my body has rejected this occupation. I feel deep emotions in my practice room, whenever I pick up my instrument, as I try to find the peace in my skills slipping away from me. As I try to understand the purpose that those years of practice played in my life.

I think about the idea that it isn’t so much a flute, but a life tool which taught me and developed me. It cannot be lost to me, when it shaped me. Perhaps it was the thing that taught me that slow, often depressing plodding is the only and best way forward. From dull repetition and dry days can come the most beautiful things.  

Sunday, December 14

a confusing time of year

The complaints are flying off people’s tongues, that they have social events weekends in a row, that parking is nonexistent and roads are clogged, that swarms of humans are inhabiting the shops, and that there is so-much-to-do. In the same breath a person will curse Christmas busyness, and invite you to a break up party.

It’s a confusing time. I’m not against break up parties necessarily, I just feel the irony.

We are all miserable yet we all perpetuate the madness.  Everything that is done at this time of year is technically voluntary, although this doesn’t feel like the case when tradition is at play. We moan under the strain of our rat race society, but how it will it change when we go along with it year after year?

I have developed categories in my mind, so that I can decipher where to spend my limited health. In the first categories are things like showering, eating, house cleaning, joyful activity and close friendship. In the later categories are things I rarely have the health for, like hospitality, social events, baking, cleaning the car, making the bed.

Christmas hype is in my last category, Category 4. I am actually happy for the ones who enjoy every event and shopping trip, but I don’t know many of them. Mostly I hear from the ones who don’t enjoy it, but do it all the same. I try to do some of it, and struggle with it, and end up feeling like the Grinch.

I am not a true Grinch. I love going back to the story of Jesus birth, feasting with my family, and the traditions, carols, trees, lights. I just don’t like drowning, and watching other people drown on this leaky boat that we made.

If well people are flailing, then unwell people are drowning. If we don’t usually have the strength for social events on top of our normal week, then we are suffering when we attend, or feeling the pain that is not fitting in when we decline. If we stay far from the mall’s florescent lights and chemical intensity usually, then the sheer number of gifts to buy is overwhelming. If we can’t stand for long in the heat without fainting, we certainly can’t sing carols.

Life is a challenge usually + expectations increase = human being in need of a desert island. This is me.

Like most things in life, it’s not as simple as saying ‘no’ to every event, ditching the Christmas shopping and not taking the car. It’s a balance of trying to nurture my weary body but keep in step with the people I live with. In Alexander Technique, there is an insightful concept called ‘End Gaining.’ The idea is that we aim for an end result, and we will do it at any cost. We do damage on our way there. I think that is our society in a nutshell. And in the aptly named Silly Season, we fulfil every tradition and end of year party requirement, and we straggle towards the first day of the New Year, utterly spent and probably no happier than if we’d lived gently, on a smaller scale.

Happy Christmas.

No, I really mean it. :-) And I’m trying to navigate it such that mine is happy too.


Monday, December 8

when flukes aren't flukes


I’m not sure whether I was born a pessimist, or became one in my childhood. But ever since I can remember, I did not think good things would happen to me. I almost invariably felt that I was going to fail my exams or do woefully – and almost invariably I was blown away by the fact that I had again fluked a good result. I felt like everything was just a skin-of-my-teeth victory. I’m not pessimistic for others or situations not related to my life, just my own. I think “But that wouldn’t happen for me. It would be too good, it would be too easy.” This has probably been strengthened by a lengthy illness where my soaring hopes of recovery have been dashed several times, and my perfectionism which leads to a heightened awareness of imperfection and perceived failure.

Perhaps it’s a protection device: hope for less, feel less disappointment. Perhaps it even makes me happier?

Anyway, I was sitting at my sewing machine flirting with the idea of selling things. The thought was frightening – to sell imperfect work to strangers is not comfortable territory for me. While I was agonising over whether this idea was mad or not, Ben was unfailingly sure it would be a success (I thought he was naive and irrational), and my friends were buying my wares. I started an Instagram page so they could see what I was making and what my prices were. My goal was to get 30 followers by the end of the second week. Every day I checked the email account I had began for my tiny business, and there was only one email in there.

It was from myself, a test email, and said ‘Nice Work Elke’.

 I was laughing with Ben one night about the fact that there would never ever be another email in there, so it was lucky I’d written a nice one to myself.

The next day, a kind maker with a big following shared my clutches and I exploded in shock that orders were rolling in – so fast that I quickly paid off all the set up costs, and was truly working from home. When I was asked by two shops if they could stock my things, I nearly passed out. I had never dared to hope for such a thing.

One week before, I had been sitting in my psychiatrist’s office once again, telling him about how sad, and guilty and hopeless, and sad and guilty and hopeless I felt. I had been telling him that I didn’t want to take the drugs again, but I didn’t want to feel like this anymore. I was crying because how would the sads go away?

The occupation of my mind, the creative output, the ability to work at home, the victory I feel at night, the sense of normality that has come to me through my tiny tiny venture has loosened depression’s grip on me. I find myself again blown away that something so inexplicably perfect for this stage of my journey has come to me. Often I hear the world whisper that only those who dream big and think positive will make their way forward. But I have invariably dreamed cautiously, felt inadequate, feared failure and expected difficulty.

Yet here I am, out of bed most days, married to a man I couldn't have dreamed of, living close to my beautiful family, selling handmade items, and not on medications. I don’t think our thoughts are everything. I believe in unexpected blessings and joy given to the fearful and the meek.

Monday, November 3

I couldn't do that


I grabbed a pair of rubber gloves and took my $100 stockings into the bedroom. I’ve never spent so much money on something so unappealing. Their shade is not like any skin tone I’ve ever seen – it’s not my ivory shade, nor is it tanned, but more like muddied river water. After I saw them, I promised myself that if they were uncomfortable or gross, I didn’t have to wear them. It was ok to back out. This was a trial.

I was determined to get them on without help, and so I began to insert my foot through the miniscule hole which was the ankle section. I sat there yanking and tugging and soon got my foot stuck in the ankle tube, worrying it would lose circulation during this potentially long delay. It looked a lot like a bound Chinese foot stranded in there. By the time my foot made it into the sock part, my hands were sweating in the gloves, making it hard to keep them on.  I took a little break after that victory, and decided that my cardio for the day was done. This was an intense task. Eventually they were hoisted above my stomach button, and I stood up.  

I felt springy. Far from uncomfortable, there was this feeling of being contained, light and strong. It dawned on me that I may never want to take them off. In a split second I had gone from vowing to only wear them on warm days at home, maybe, to coveting this improved vitality for all the days. Who cares about being hot if I feel springy? And what’s a muddied foot or limb in view compared to this functional and surrounded sensation?

Just as I rarely grieve the foods I can’t eat, I realised that I cannot grieve these thick pantyhose, because they bring good. So many times I have heard these words: I don’t know how you can not eat gluten and dairy and sugar. I don’t know how you bear to stay home. I don’t know how you can exercise when you feel so unwell. Maybe soon they’ll ask how I can bear to wear hideous tights.        
I couldn't do that, they say.

It’s so incredibly simple. I make decisions to live as fully and as well as I can. The alternative to each sacrifice is always worse. If you are in enough discomfort, you will seek change in ways you never thought you had the strength for. 

We do things because life is important, and our body is our vessel. 

Thursday, October 23

the beige pantyhose decision

Photo by Mark Shaw, 1953

I like old buildings, gardens, light rooms, special book editions, people watching, photographs, intriguing artwork, concerts, fashion. An old Singer sewing machine stood in the lounge I grew up in, elegant and unusable, but not purposeless. I remember dabbing raw blisters with methylated spirits after ballet, but it was a sacrifice I made gladly for dancing en pointe. Ben and I drive to a further suburb to walk Wolfie amongst the villas and gardens, for the visual pleasure of those streets. Aesthetics enrich life, and I lean on the side of favouring them over practicalities on occasion.

It is ironic that I now exist in a state of aesthetic normality and functional disarray, and I despise it. You would think this is the way around I would have things. I have lost count of how many people have commented on my healthy looks and youthful externals. I may look fine, but what would I give to have a functional body instead? Would I give up my outward normality for energy and vitality?

A related question has arisen since my diagnosis of POTS. My stretchy blood vessels facilitate such good pool parties down in my legs and feet that the blood is slow to return to higher regions, leaving me with a dizzy head and malaise, soo much malaise. According to my specialist, I’d be better on all fours, like some kind of less evolved human.  All the exercise, and salt, and medications have improved me, but far from fixed me.

When compression stockings were mentioned a couple of years ago as a way to improve my quality of life, I put them in the not-ever-doing-that basket. I’m not eighty, with protruding veins. I’m not wearing thick nasty stockings throughout summer and forgoing dresses and shorts. I’ve changed my occupation, diet, social life, future dreams – I think I will just keep my freedom to wear whatever I like, thankyou very much.

But currently shipping from America is a pair of hideous beige medical compression pantyhose.

In the end, I would rather stand and more than exist, than lie around with bare legs on a summer day. In my wardrobe there is no skirt or dress that reaches below my knees. Assuming the tights improve my functionality, I will have to change the way I dress radically, and I find the thought distressing. But that’s just my aesthetic nature holding on tight. If I really do feel more alive when I wear compression, I don’t think I’ll be lamenting my maxi skirt, because on occasion, function wins hands down.

Also: Audrey Hepburn. Radiant in long. 

Tuesday, October 21

project e l k e

I haven't stopped sewing on my medium to high quality days. We still can't eat dinner at our dining room table because I have covered it in thread and paint. I have taken to calling the space my studio, which makes Ben laugh because I already have our study for that purpose. But I am a lightbug and a scatterer, so I have spread out by the windows.

I have been making clothes {as yet unphotographed}, but mostly I've been using fabric paint and zips to make pouches, leather based clutches, and cushions to take to market. I'm aiming for an artisan market, but Etsy and Instagram are lurking in the back of my mind for later, in the phenomenal case that I actually sell something. It's an alluring, vulnerable and motivating project, and very suitable for my home-is-best and learnt-to-sew state of affairs.

You can be utterly upended, and lie winded for a long while, but then you find that of course there wasn't just one thing for you.

e l k e .

p e a c h

m i n t 

h u n d r e d s & t h o u s a n d s
t r i a n g l e 

a n y t h i n g  b a g s 

Wednesday, October 15

first do no harm

First do no harm.

This is a latin principle historically taught to physicians. In the past I have been attracted to the gentleness of this phrase, and empowered to refuse treatment which I deem more destructive than beneficial. But it was recently that I decided to adopt it as my favourite maxim.

It was a bad day, a day where the fatigue and pain were severely interrupting my usually-manageable activities. The old record began to whine in my mind, with belligerence. ‘I can’t believe I can’t get anything done, what a waste of existence.’ ‘Just make yourself. You’re lazy which is why you think you’re unwell, and you could get up if you tried harder.’ Long was the day, loud was the disappointment, strong was the discontent. To soothe the pain and the unjust reprimands, I sought comfort in the form of hair pulling. Much later, Ben walked in to a pile of hair, and a rocking, sobbing, sadness.

In the end, I wasn’t as distressed by my sickness as by the way I had handled it. I deeply regretted that I had turned on myself {and my extremely undeserving head} and multiplied my woes.

By providence, my friend sent me a long email filled with love and too much wisdom to write here.
She wrote:

Please extend to yourself the same kindness you extend to me. You will find that you are the most gracious, considerate, strong, interesting and wonderful person you could ever want to meet.

I shudder to use those adjectives for myself, but the first line was startling.

What if, when I was hurting, or disappointed, or anxious, what if I played an empathetic track? 
Opportunity for practice soon presented itself, bien sur, and I was facing a day where I would be alone and mostly couch bound. It was a little strange to extend compassion, and I felt like a positive psychology experiment.

I found myself walking up a long hill, feeling dizzy after many vials of blood had been extracted from me. I noted that it was a great feat to have gotten my blood tests done on such a challenging day, and that I could enjoy tea when I got home. I lay on the couch, and thought: I’m not lazy nor a hypochondriac. No one feeling this way could move, let alone work. I’ll know without a doubt when I’m feeling well, and I’ll do good things that day. I thought about John Milton’s poem, the line, ‘He also serves who only stands and waits.’ I acknowledged that I was doing well with no pain relief.

Late afternoon the sun eventually beat the clouds, so I went to bask in it and celebrate making it through the bulk of the day, with all hair intact, and lack of agitation. Ben walked in the door, and I was doing some plies and fondues in the sunshine. Same headache, same malaise, same lack of achievement as the other day – but this time, there was no trail of destruction. I hadn’t done what I wanted to, but first, I had done no harm. That night, I was UTTERLY content in having just lived through the day.

Why do we kick ourselves when we’re down? First, do no harm. 

Monday, October 6

the hangover diaries


I have a patchy and sporadic grasp of contentment. And it’s conditional. I will be content if my situation reaches my pre-determined ‘ok fine, that’ll have to do’ mark. But if something is just too far, too far off my scale, I throw my hands in the air and abandon the whole notion of ‘content’ as though it is entirely unreasonable to expect it in this situation. And then this omnipresent voice whispers to me, “But what if it’s true that suffering only leaves when it’s taught you what you need to learn? Then you will never be well.”

There is real peace about having had to curtail dreams, and reinvent life as I knew it. But after many years, I am tired of nurturing my health in the quietness of my home, and moving with weariness between the worthwhile-yet-boring pursuits that fill my days. I may not watch TV and binge on cake {actually, the cake bit is true} but when I climb into bed at night there is no sense of achievement. So, the house is clean and I made something for the market, what a life. The monotony is drab, my contentment dull to non-existent.

Enter the headache. I hope never to have one again in all my days. It started as they all do, with a wild weekend – seeing two separate lots of friends and vegetarian curry. But it didn't end with panadeine, water, and a dark room. No, it didn't end.

It was still there the next morning, and the next morning, and the next morning, and the next morning, and the next morning, and the next morning, and the next morning, and...the next five.

At first I was stoic and brave, though that phase was short lived. 

By day four I was frustrated and disheartened by the ‘endless’ ache. Like, what do you mean it won’t go away with chinese heat patches and hot showers and massages from Ben? Ben located the script for my old migraine relief drugs, to my lively squeals, but it had long expired.

On day seven I was perplexed and angry, and went to the doctor. The trip worsened the pain.

By day ten I was depressed and desperate, and went to the ‘manipulative therapy’ physio with the expectation that he would end the saga. Or else. After my session he said that I would have to wait five more days until my second treatment, to let things settle. Five?! I wailed to Ben. I won’t be alive in five days, so we have to sort this out sooner. Web MD didn’t say headaches lasted this long. What if this is the start of a brain tumour which is why no one can help? I went home in full scale despair. I thought that it would never leave because nothing was taking effect. Day ten felt more like month ten, and I truly wanted to die in my sleep, remove my head, or throw china plates.

Day eleven was more of day ten. I think I only mopped the floor, which obviously didn’t inspire.

Day twelve, I woke up to the sun shining and this bizarre feeling that I wanted to be alive, that there was hope. It coincided with beautiful friends praying for me and encouraging me, and it was that day that the pain started to reside.

The next day was a Saturday, and I have a special dislike for Saturdays where Ben has to work.

Not this one.
I woke up with clear vision and a mostly pain free head and thought: what shall I do? Make something for the market? Read? Exercise? Bath the dog? I can do anything. Intoxicated by the options, the irony crossed my mind. The dull existence of normality was now sparkling before me. 

Never mind a world changing career, I’m a thinking moving human who just saw the beauty in what I usually do.

I don’t expect to remember this for long, but, on pain of headache, I will try. 

Now, back to my not-so-dull reality.

Sunday, September 21

out of the fire, into the frying pan

Spring came. I cannot believe it arrived. I know in my head: spring after winter, but I still cry when it comes and I physically make my way out of my dank glandular ridden dungeon. I cry because of the contrast; it makes me squint. I long for metaphorical spring to stay once seasonal spring has ended. Even my jaw which has been painfully locked for six months came loose to my shock, and I could have celebrated my improvements by eating something raw and crunchy, but I went for daffodils on my table and excitement.

In this too-good-to-be-true state, something familiar and unwelcome loomed over my joy. Anxiety. People wonder if that means I begin to feel worried about things, normal or irrational, but that would be too simple. I feel no fear, no worry. It’s hard to reason with a mind that knows no reason for all of this. Years ago when it began, I had no idea it was a mental state. I very seriously told my mum I was concerned about my lungs because I couldn’t breathe properly at school.

I go around to catch up with my family, the people I am happiest around, and my body trembles uncontrollably as I ‘relax’ on their couch. It’s my seventh year of driving a car, but my autonomic ability to breathe is lost as I struggle to inhale and exhale, keep my vision from blacking out, ignore my racing heart, and actually steer. I revert to wanting to tear ALL my hair out because it’s soothing at that moment, and I am teary when something miniscule goes wrong. I’m all taut and snappable in my heart when before I felt stable and unflappable. When I’m asleep, I am captured in the high attic I am hiding in. I’ve been here, done this, don’t like this. On my fridge is my star chart entitled, HAIR IS BETTER, a rational concept for an irrational desire. My self control is rewarded with fabric paint, which is obviously extremely motivating. On my knitting needles is a new project to occupy my hands. In my calendar, an appointment with my counsellor and psychiatrist.

When it came back after its long absence, I started thinking of myself as a mess. Messy, tangled, confused, brittle and guilty for needing help again. It struck me that I don’t feel guilt about CFS or POTS, and anxiety is no more my choice than they are. While I advocate for mental health struggles to be as stigma free as physical health struggles, I am ashamed that my mind is out of my control. Subconsciously, I hold the view that I should be able to switch off mental discomfort quickly, but accept that I may need help with physical discomfort. I have to drop the belief that it is a personal failing if I struggle in mind, but not in my body. As I write this, I am not content with the terms ‘body and ‘mind’ because the two interact so completely. My being and journey have lead to this meaningful uncomfortable response, and that is not crazy but rather indicative of how intricate I am.

As a courageous woman who hears voices says in her TED talk, the important question of psychiatry shouldn’t be,
“What’s wrong with you?”
But rather, the more compassionate,
“What’s happened to you?”

Thursday, August 28

the soma swimsuit

I am celebrating four weeks without a glandular fever flare up with some sewing. To be able to sit up straight concentrating for a couple of hours each day is infusing me with joy - that, and the spring air which is whispering to me that better days are here. My heart feels like it will explode with relief that the lighter months have come, the illness ones receeding. I make sure that I inhale my daphne at least twice a day, and stock up on sunshine.

A few months ago, my sister spied this magical mermaidy fabric in the sale bin at The Fabric Store. I decided then that I would make my own swimsuit, as soon as I had the skills. Usually retailing for $28 p/m, I got 0.7 m for $5.

The photos do not capture the shiny scaly shimmer of this print. It is my favourite fabric to date, and the best bit is that I didn't massacre it and therefore will be able to wear it all summer.

The Soma Swimsuit pattern was marked 'skilled', but I decided to go for it despite my decidedly beginner status. I thought I could manage it after making a couple of intermediate patterns recently. It came with clear instructions and diagrams, and I found that Papercut Patterns had put out plenty of photo tutorials for it. I made the Variation 2 bustier top, with high waisted pants.

The XXS small fits me perfectly when on - but getting it on and off is frightening. The first time I tried to get it off I thought: halp, I am going to have to cut this thing off me! It would not budge past my shoulders without creaking. At a later fitting I left a couple of pins in the back, and because it was so tight and twisted going over my shoulders, the pins drove right into my flesh. In my panic, I had this image of me in Emergency wearing an unfinished bikini, for pin removal. That image inspired me to take a deep breath and inch my way out of it. Next time I will size up the back for ease of dressing.
However, it is the loveliest print and fit I have ever worn, so I will gladly spend three minutes dressing myself.

I also made my third version of the Moss Skirt by Grainline Studio. This time, it was in a luxe black wool that I got from the Alannah Hill outlet. Neither of my earlier attempts were as good as I hoped for, but this one came out as close to perfect as I hope to get. The fly worked , the fit was a dream, and the hounds tooth lining was just right. This experience reminds me that if I don't manage it the first time, it doesn't mean I am incapable of it. It means that I have to do it several more times before I do manage it.

Tuesday, August 19

don't do it

We had an inexpressibly wonderful time away. It was a mixture of having each other’s company all day long, and no responsibilities. It was blue and white mountains and clear lakes, and doing whatever we liked.  It was the fact that after the first week it wasn’t nearly over. It was a body which functioned more normally, and accepted alcohol, and slept soundly, and groaned less.

When we spoke to people, they didn’t ask what we did for a job. They asked where we were from, and there was a simple, easy answer to that. We talked about New Zealand, and Australia, and snow fall, and beautiful places. I was free from telling strangers about personal things, and free from my house of tired memories. I cried when I came home.

Very soon after our return, I found myself sitting in a doctors reception for the first time in 2014. Butterflies, and frequent bathroom trips reminded me of the past six years endless of doctor trips. The GPs were running late, and the room was filled with the elderly, all except Ben and I.

There was one particularly vivacious old lady sitting near us.

 “Everything in your body just stops working when you get old. It’s dreadful! But I shouldn’t scare you,” she said winking at us. Everyone turned to us with wrinkled smiles of warning.

“You’re young and life is still exciting for you, and don’t worry, you have many many years before you will get here. And we had fun when we were young too. A lot of fun.”

“Oh yes, we did! “ Chorused the ladies and men around her. When their bodies worked, they had fun.

 “You do have to get used to these very long waits before appointments, you spend a lot of time here when you get old like us,” she said with another patronising wink at us.

Her superior ‘you couldn’t possibly understand’ tone and her ‘your life is a breeze’ winks grated against my decrepit body. I had a slight urge to break to the whole waiting room how mistaken she was in supposing that my young face was attached to a functional body unaccustomed to waiting rooms, discomfort, unemployment and the pension.

Speaking of the places she had spent her life she observed that “You want to move around when you’re young, but I just want to stay put now. It’s such an effort to move.”

Oh no, not everyone wants to move around when they’re young.

And then she said, “What brings you all the way out here?” for we were seeing a doctor thirty minutes from home. It must not have dawned on her that I was obviously here because I am unwell, and obviously here because there was a doctor I particularly wanted to see.

My new doctor eventually called my name, so I stood up and the old people waved a warm goodbye to my young husband and I as we went to discuss my old problem.

The old phrase, 'Don't judge a book by it's cover' echoed through my mind. 
Just don't. Ever. 

Friday, July 25

dress making - wiksten tova

On the weekend I will pack for our trip to New Zealand and I'm taking a number of clothes I've worked on, not out of duty, but because they are genuinely my favourites. I never thought that would happen.

The warm, casual, simplicity of this red Wiksten Tova is wonderful. I find this country look so alluring.

I found green/navy/brown plaid flannel for half price, and made my version in a couple of days. It is the first thing that fits me perfectly with no adjustments, so it was a joy to work on.

Pattern: Wiksten Tova, with dress or top option
Difficulty: Intermediate {although quite fast and straightforward}
Fabric: Flannel Plaid, 100% cotton

After I made my McCall's Rompers, I wanted to alter the very wide bodice, so I made a dress version. Fit is the hardest thing about this whole sewing business. I took 3 centimetres out of the front of the bodice and 4 out of the back and the fit is just right now.

This is a beautiful soft cotton floral which my bro and sister in law found in an op shop for me. My mum found me a dark green zip for the back in the op shop - these shops are a frugal sewers paradise.

Wednesday, July 16

tell your story

                                        Margaret Bourke-White - Hats in the Garment District, New York, 1930 

I was in Queenscliff on a piercingly cold wet day to celebrate my sister’s birthday. Mum and I spied a decrepit old man across the street. He was hobbling and hopping down the footpath, crippled with pain. He couldn’t traverse much ground before needing to break, and he was alone as the rain drove into him. He’s probably on the pension, I thought, without the money for a scooter, and perhaps his pain is incurable, and perhaps he lives alone. I struggle to cope, and I am supported from all sides. How on earth does he endure? How bleak is his existence? And then I felt the sudden urge to cry rise up inside me, which is extreme for a stranger across the street. You’re really not meant to cry when you just look at someone. I didn’t give in to the sensation, but his pain sat heavily on my heart for a long time.

In the op shop I heard a lady in her 60s telling the cashier that she was looking for a very thick warm jumper for her mother in law who was in a nursing home. Apparently she just couldn’t keep warm this winter no matter what she wore. What should have been an endearing exchange to overhear produced the same effect on me: I wanted to cry. Because this woman was always cold, and obviously frail, in a place not her home. Actually, I didn’t want to cry. I just wanted to carry on looking for fabric, but this emotion bubbled up from I-don’t-know-where.

My response is absurd. Over the top. And it’s not pregnancy hormones. Can you imagine what I will be like if I become pregnant? Ben can’t.

It seems to be the kind of heightened response common after trauma.

Last year, Wolfgang was pinned and attacked by a dog, and with wobbly knees we carried home our bleeding dog. His wound healed, but he is now violently distrustful of all dogs and men. He is so utterly changed from that incident – and I think I’m like Wolfie, affected by it all.

I am feeling normal empathy to an extreme degree because of the pain I know. I will definitely take this over depression and anxiety, it’s not a huge issue. It just reminds me that we are phenomenally shaped by the events in our lives. Sometimes I look at someone and think, “I do not understand you! Why do you do that?” And later, I learn about their life, their strongest memories, and it makes sense. I find a whole new level of acceptance and love after I hear their tale. Our stories allow us to make some sense of our own complex ways, and the complex ways of our loved ones. So we must tell them! And then we can get on with the very important business of ending judgement and supporting each other.  

Friday, July 4

Rompers! McCalls 6923

Pattern: McCalls 6923
Level: Easy/Intermediate
Fabric: $5 p/m cotton and lining

My floral rompers would like to be worn to Torquay beach, and on summer picnics. I have an impatient disposition not yet thwarted by chronic illness, so I am wondering about wearing them with tights and a cardi for this season, or making a darker winter version. See how they match my mauve knees?

The pattern called for a bodice lining, and a centre back zip. I was apprehensive about these steps, but as usual they were much easier than I expected.
The main problem was that the pattern's smallest size was an 8, and it wasn't an 8-going-on-6 kind of 8. The rompers sort of doubled my waist at first try. I ended up putting darts in the back, which are quite inconspicuous with all the gathering. It's still on the loose side, but that doesn't put me off wearing it, because the design is cute, and it's supposed to be a cool cotton playsuit. I have plans to alter the pattern next time.

Right now, I am excited to be making things, stretching myself, having a few days off my virus, and gazing at beautiful hope-provoking fabric. Learning something new has to be one of the greatest pleasures in the world!

be sad


“Be in love with your life. Every detail of it.” – Jack Kerouac

I resent the notion that we should always be happy. I have quotes like the one above pop into my Pinterest feed, and I scoff at them. Forcing happiness and optimism at all times is the surest way I know to be internally sad.

When I sit on the couch, wasted and teary from frustration, I think morbid things. I wish I’d lost a leg or an eye over my strength. I wonder how I am supposed to wake up tomorrow and go on.  

I will always remember the talks we got at my music and dance school.

“If you lose a limb or a finger, what will you do as plan B?”

Trawling the vocation guides, I listlessly decided on psychology or french teaching. As if I would lose a finger. Besides, music was already my plan B after ballet, and I had no intention of letting it slip from my grasp. I really had no interest whatsoever in plan C.

And now I would beg on my knees for plan C because I wound up with plan Z - except I won’t call it a plan, because I never conceived of it. To call ‘Z’ unpleasant is an understatement, because strength is the essential ingredient to almost everything. Even to sleep. The caged torment of being mentally sound but physically unable sometimes overwhelms me.

The reverse is even more challenging.

I wonder how to come to terms with Z?

The only way I know to deal with Z, is to acknowledge it and grieve. I let my cheeks get slippery wet without accusing myself of being sorry for myself. I cry because it’s the only way I can expel pain. Once I’ve wrung it out, I am released from exasperation. It is my favourite anti-depressant to date; side effect of puffy eyes is hardly worth mentioning.

Afterwards, I can pan out and see Z as a part of my life. It can only suffocate all that I think and do, if I allow it to. I zoom out and I see that right beside Z is my hilarious dog, my handsome husband, my urge to create left untouched, the discontent of man in every single situation, and the privilege it is to walk on earth for however many days I’m given. There’s something free about being empty and helpless, so openly so that I have to admit it. More moments seem beautiful because I’m less fixated on plan A, all consuming plan A.

The only way I can enjoy being alive, is to feel loss and sadness. I am most real and at peace when I depart from ‘got it together and loves life’ stoicism.
 My love of this Ecclesiastes quote grows with time,

“For everything there is a season and a time for ever matter under heaven.
...a time to weep, and a time to laugh;
a time to mourn, and a time to dance.”

Chapter 4:3

Friday, June 13

three new garments

I am nearly half way through my sew-my-own-clothes year, and I don’t want to arrive in summer still a pre-beginner. That’s why I have been tackling some slightly more challenging clothes.

The first was a Moss Skirt, which has a fly. My first attempt did not go well, no. In the end I had a full scale sewing tantrum. Every single step went wrong, honestly. I really wanted to roll my sewing machine down a steep hill into a lake at the bottom. As a compromise, I decided to leave my skirt unfinished. It still lies exactly where I terminated my work on it. 

Two days later I decided that because I was now so well prepared, I would begin on my favourite fabric. Mercifully, I made a far better version which has a fully functioning zip fly. It is not perfect but I am content.

The second item was the free Colette Sobretto Top, without a pleat and with a self drafted Peter Pan Collar. I meticulously followed a tutorial for the collar. Soon I suffered the shock of finding that it was too short for my neckline. After a couple of days, my disbelief and deflated spirits were subsiding, and I attempted a second collar. This time, I had a success. I think I am a second-time-lucky girl, except in marriage.

I can’t debut this top yet because of my acute sense of the temperature, but I predict that I will wear it a lot. It’s my ideal cute-but-smart with jeans/shorts/skirt kind of top.

And last, I took to the overlocker/serger that I have the joy of borrowing. I decided that a knit sweatshirt was exactly what was needed to face winter, and door knockers, and the gym. It’s essentially pajamas for public and I found plenty of Asos inspiration. I had previously thought that I wouldn’t buy an overlocker, but I was innocent to their wonders. Using one brought to my attention how much I hate trimming and zig zagging every seam. Whizz it through, and there is a beautiful garment with lovely innards. I could wear my jumper inside out!

I used the Ensis Tee by Papercut Patterns again, and bought cotton fleece in cream and black. My other Ensis tops were XXS, so I went up to XS to make a jumper version, and added wider neck ribbing, bottom ribbing, and altered colour blocking. 


Wolfie thought it was a dog bed. Ouch.

Tuesday, June 3

social lights and darks

I’ve admitted before that when I get invited out for coffee, for tea, for a dinner, party or gathering, one part of my heart sinks. 

I am in the bizarre category of being too unwell for the very activities which rejuvenate most people and bring them life balance. Unforgettable is my first ‘holiday’ with this illness. The very premise of a holiday is to leave your regular work behind and rest your body. I swiftly learned that my regular work is dwelling in my own body, and that most parts of going on holiday added to my suffering: travelling by plane or car, strange bed, going to see the sights, eating out, expectation of having fun resulting in guilt at not having any fun at all.

Don’t even mention holidays-to-visit-friends. How does that even work?

Sometimes I sit in my lounge and feel like a miserable social outcast, when I have an invitation in my hand. The pain has so marred what are supposed to be the happiest times.
And right alongside my desire to minimise my pain, is my sense that relationships are one of the most beautiful and important aspects of being human. I realise that sharing times with people is my work not my leisure. But am I not insanely privileged to be alive to be able to do that, pain or no pain?

Enter my beautiful friend’s upcoming wedding. I was all mentally and physically prepared for the pain-work aspect of the wedding. I cleaned up the house and Ben stocked the fridge so that on my return, I could lie until the nastiness subsided. I was all psyched up to live second by second, and in my bag was a stash of white pills for when I needed their powers. My praying friends were praying.

I woke on the day with zero pain, despite almost no sleep and the long journey the day before. The surging adrenalin gave me a crisp lively feeling. Intoxicating. I wondered if it would wear off before the ceremony, or just after. Drenched in warm sunshine outside the church, I was able to feel unadulterated joy and excitement. I stood without dizziness through the ceremony, and sang without faintness. At the photos, I still hadn’t reached for the pills or longed to lie down, and the day was passing in a happy blurr. I wondered why. Why am I functioning? I don’t do functioning.

In the evening, I began to fade but not to such a degree that I had to go out or be carried to the car. As we drove home, me in a delirious state of bliss, I wasn't sure whether I was going to pay severely for the day, or whether it truly had been a gift.

In the end, it was a gift. Unexpected and sweet, to remind me of wellness and freedom. On returning home, I didn’t have to sleep my days away or sip soups and cry. No wonder my friends love to spend time with others, when there is so much gain, and so little cost. I have this warm feeling that I am the same as the rest of mankind when my body works. And when it doesn’t function, I am the same as all the beautiful people who strive for a meaningful life through pain. 

But right now, I'm just happy. 

Tuesday, May 27

someone on my porch

I was feeling blue going on grey with despair today, and prior.

I began an ineffective inspirational pep talk about how much I have to be thankful for. In a mind as emotionally limited as mine, all I could think was, “Yes. But it’s hard to appreciate all these things when you feel this ill.”

Only two words explain the physical problem: endless poison. The common cold which comes knocking to all each Winter, banged on my door in March and has not departed except for rare half-day trips.

So then, keep plodding. Life goes on.

And life is going on, but in such a painful manner that I dread its continuance. I wake with my red throat, pudgy tonsils, eggy glands, and I sleep with them. I carry leaden fatigue with me for as many hours as I am awake, and then repeat and repeat and repeat. I feel like every vein is infected with this nasty achey poison. I find myself longing for ‘just one day off,’ but I know it would never satisfy.
At some point, my mind became sad too.

We scour the internet for a specialist, a clinic, a somebody who knows something about endless poison. Last year, and the year before, my medics exhausted their virus ideas. Leaden and lifeless, I remember how we hoped this year of stability would be the environmental answer to the problem.

Wolfie barks furiously at something outside, and the something happens to be someone on my porch holding a bouquet of flowers.

It's for me! The angel someone didn't know that I was feeling this way, but knew that constant sickness can bring on misery. Over and over, something has come when I feel most crushed. I put the bloom in a vase with water, and dry my wet cheeks, and keep thinking that it is providence. What else could it be? 

Wednesday, May 21

say nice things

Some people say unhelpful things, lots of people say nothing at all, and a few say the perfect thing – something empathetic, real, comforting. Here’s a list of five comments which have warmed my heart, and would probably do the same for others.

1. “Wow. That sucks!! That must really suck for her. ”

At first Ben told his colleagues that his wife had ‘health problems.’  But as his relationships strengthened, he started letting off the ‘chronic fatigue syndrome’ bomb. The other night he told me that his friend reacted in this refreshingly warm manner.
Yes, it does suck! That simple heartfelt comment seems to sum up the frustration at having reached a nasty stand still at such a young age. This response is perfect, because I can join in and sit for a moment in the reality that this illness is not even close to fun. His work friend got that this was bad, real, and sad.

2. “Please feel free to call it off at late notice if you need to.”

My younger brother wrote this to me. It is possibly the most comforting statement I have ever heard. He said late notice. How nice can you get? Just to know that if my body chucks a hissy and I can’t fulfil our plans, he won’t be surprised or annoyed. The pressure if off, and I thrive on no pressure.

 3. “I have a cousin with that.”

Yippeeee! Not glad that your acquaintance is sick...but, if you have a relative or friend with this illness you probably have a faint idea of what I’m talking about. I love to know that this illness isn’t so unheard of or invisible.  

4. “When I had a cold/flu recently, I thought of you and can’t imagine how you live with that all the time.”

This makes me want to sob. You get it, you have tasted my never-ending sickness, and the fact that you realised what I am going through makes me feel so understood and loved. You know that ‘tired’ is the wrong word for it entirely and I want to hug you right now.

5. “I’m sorry you can’t come. That must be so frustrating for you.”

Usually when I cancel, I get the standard, “Alright, that’s ok.” But what I really long for is them to realise that it’s not just them who is put out. I am put out, probably even more than them, because I really wanted to come and I’m not well enough. And because I repeatedly can’t attend things, I am starting to get really over it.

I feel so privileged to have heard these things{and many more}, and to have such beautiful people in my life. When the pain can’t be taken away, love is a balm.

"Be kind, for everyone you meet is fighting a hard battle." 

"Rejoice with those who rejoice. Weep with those who weep." 
Romans 12;15

Monday, May 19

the way he made me feel


I don’t think I’m anti social. Infact, the happiest times have been exuberant conversations over food and drink. I am anti pain though, and since socialising brings pain, I feel a nasty cocktail of emotions before events. A melange of excitement and dread. Dread.

The event was a Hens, and being a bridesmaid, I was going to be there. I trained up to Melbourne at 12pm, and one minute at a time, I experienced joy and pain until 8.30 pm. I prayed, and drank water, and pined for champagne, and took breaks, and enjoyed, and ached and ached.

But it was Sunday which was cruel, just as anticipated. Overnight I was crushed by a semi trailer; so heavy did my bones and muscles become I thought they would fall out of me. So nauseous, so dizzy, so exhausted to the point of being unable to talk, so utterly hungover without a drop of alcohol. When I was awake, I thought: how can I endure this again after the wedding, but more severe? I can’t. I can’t endure this again, not in two weeks.

But two things broke through. You don’t have to endure the hangover from the wedding now. You only have to endure that hangover one second at a time, when it comes. You never have to live more than one second at a time, and if you can survive one second, you can survive two. Just live this second, don’t anticipate the next and compound the pain.

The second thing that I experienced was love, to such a degree that the memory of pain is wiped over by the memory of being cherished.

Ben got up the morning of my event, and baked Red Velvet Cupcakes for me to take along, with the nuts he had activated for me, and the quinoa porridge. Then he dropped me at the train station. At 8 pm I got a message saying that he had arrived in Melbourne, to save me, to carry me home. He drove me home, and carried me to the bedroom – the bedroom had been dark, dank, bedraggled in masses of my clothes, with dirty sheets on the bed. While I was away he had folded all my clothes, stripped the bed, vacuumed, and I saw white, and clean and clear.

I slept like a submerged log, and the next day he was at church when I awoke feeling poisoned. But my breakfast had been prepared for me, and soon he had chicken soup for my lunch. Later he came to the bed to show me pictures of our bombsite study completely arranged, with all my sewing things ready for me. More soup, more hugs, and then he read my book aloud to me, joining the story ¾ the way through and barely understanding the musical terminology. I laughed till I was hysterical about ‘fugue’ being pronounced ‘foo-goo’. Before I knew it he’d put my pajamas on, and my first day of hangover was over. When he said ‘I love you’, I thought what an action word love was. Yes, he loved me. And that is what I will remember.

The pain couldn’t go, but it could be over powered. So the excitement and dread before were replaced with pain and bliss. The light countered the dark, and I will remember the way he made me feel. I love that love wins over. 

Wednesday, May 14

the first dress

Even though I haven’t really been dreaming of making dresses all my life, I feel like deep in my subconscious I have always wanted to. It feels fabulously feminine to make a dress rather than a top or skirt. I had in mind a thick winter dress for the day time {because who actually goes out at night?}, in a classic black, to wear with tights. I was thoroughly inspired by Jolies Bobines.

Fabric: It was $10 per metre at Joy’s Fabric Warehouse, and I was lucky to have my super sister with me to help decide. I found the button for the back at the Alannah Hill factory outlet {Brunswick Street}, and soon I will be sewing with the darling fabric I bought there for outrageously cheap prices.

The pattern was simple, well explained, quick to cut out and quick to sew – except for the French darts which weren’t marked. Having never tackled them before, I just did my best to make them match by sight, guessed how long they should be by stalking other Saiph Tunics on the web, and tacked them before I sewed. My great fear was that they would end up pointy in a central location, but mercifully they are discreet. 

Because I didn’t want it to be daringly short, I added 1.5 inches to the top. Later I realised that the torso was unflatteringly long in proportion to the peplum. I looked like a droopy waistless nun; overwhelmingly frumpy. After unpicking the peplum to shorten the top, the proportions are better, and the dress hits mid thigh which is my happy length.

I am adjusting to wearing a tunic. It is just so voluminous! But, I think once I have the courage to embrace the space, I will love it. 

Voila! La première robe noire, and I have the joy of having reached another goal.

Below are a couple of other things I’ve made lately – the Scout Tee. Most tees are too low, or high, or tight, or twisted, or thin. But this one is the perfect slouchy tee.

I had some navy and white knit left over. There wasn’t enough for a whole top of one colour, so I decided that the gym can handle navy on the back and white on the front. I consider this fabric shortage ‘sporty’. I copied it from a shop bought tank, and it really is a good thrift. 

Monday, May 5

flu squared


I messaged my also unwell friend and told her that after a couple of hours of being in a cold indoor environment {dressed in many layers and coat}, I now had swollen tonsils and glands again. She replied, ‘winter is an ugly time for cfs’. I basked in her empathy.

During winter I never really know if I have a virus, cold, flu or just cfs. The symptoms are permanent, and vary according to how warm and rested I am. It’s almost like a reward system - Go in the cold, and you will receive tongue ulcers in ten minutes. Eat chicken soup and sit by the heater, and your throat pain will ease. Because of this highly interactive/interfering system, I find myself eating three hot meals a day, numerous hot drinks, and wearing an unflattering number of garments.

The unrelenting succession of ulcers, glands swelling, tonsil swelling and mucus is a melancholic reality – which just got more melancholic as I realised it’s not officially Winter yet. The very best way to describe winter with a pre-existing illness is ‘flu squared’. My brother coined the term.

Melancholy countering points:

1.       I may be fighting harder than during the summer, but I am not as ill as I was in 2011, 12 and 13. It feels very good to be able to look to the past, and look at the present and see differences. 

2.       Woodfire smokes makes for wonderful night time walks.

3.       Each year I learn about another alternative health philosophy or two. This year I am discovering the Indian Ayurvedic thoughts about the main types of people, and how to counter their imbalances. When I read the description for ‘vata’ people, I felt like they were writing about me, exactly, and my version of cfs. I am introducing some very warming, grounding food into my life.

4.       Earthing or Grounding is a newish, rather wacky, possibly unscientific, and very hippy thing. I don’t tell my dentist that I oil pull, and I won’t tell my doctor if I begin ‘Earthing’, but when hydrocortisone and other drugs have failed, you find yourself rather open minded and experiment friendly. A friend is going to lend me her Earthing mat, and I will be sure to let you know if the earth’s free electrons benefit me in any way whatsoever.    

The sharing of any winter-combating ideas will be welcomed. I have already figured out tea and hugs.