essence of sad

Have you been so sick for so many years, that you lack the will to go on?

They say health is the most important thing, cheerfully they pronounce it, to inspire their gratefulness, 

to wash away their great unhappiness.

But you don't have health. 

You don't have well. 

They say friends too, they are better than career you know. 

Career, it went, but friends you have. 

You have friends you rarely see,

friends you hold on to, but always fob off. 

You love them from your couch, but it isnt enough.

You don't cook for them, ever, and you're always writing to say 

'less than an hour, but I love you ok'. 

I'd love you better if I could. 

My mind loves you. I swear. 

They say happiness inside, that's up there too. 

Peace for the ride.

And you have that one. But with essense of sad.

You want it unconditionally. 

In the sore, crawling, lonely, drought.

But it morphed into sad, behind your back, so now you feel bad. 

That you're sad. 

Sick bad, and then guilt bad. 

And lonely bad, and too-long bad,

And hermit, outcast, worthless, cold,

too-much, and can't-go-on bad. 

Till the sun pops out. 

It kisses you and hugs you and shouts:

It's a beautiful day to be alive.

Alive. 

You have alive! 

And alive is meant to be here,

and meant to be here is purpose,

and purpose is go on. 

unexpected

source

It’s a chilly June morning. The cold lights a red swollen fire in my throat and keeps it burning all season long. “I’ve got a virus at the moment,” my sister warns when I ask her if she’d like to join me on a walk. “Oh no, me too,” I reply. I mean, I have a glandular fever flare like last week and the week before, because it’s permanently active. When I expend extra energy, resources my body usually uses to control the virus, things become a fiery hell. A day in bed. It sounds fairly innocuous. But then again, all things seem innocuous in small doses, and I have a full time job now. We made a decision earlier in the year that we would either move to a warmer climate or buy a winter-long supply of the only thing that helps. The thing is not at all cheap, and not at all vegan, but it helps contain the flare radically. We ship it on bulk from the US. It is made from a calf’s thymus gland, a protein that my immune system needs more of to fight infection.

But I digress from the cold morning. I hustle to eat breakfast, tidy up the lounge, have a shower, because I have to lie down at 8.30 am with the poppet. Aurelia sleeps radically better next to a human, and we made a decision to stop the cot fights and fails, and co sleep for now. I only resent needing to nap with her when I compare to the women whose babies sleep alone, in cots. Comparison is especially the thief of joy in parenting. I know some mums get ten entire minutes to sip a hot drink all by themselves because they share it on social media. I fantasize about cleaning the bathroom without my often groaning spectator. On the weekend I was whittling through the flesh in my lobes, trying to re-pierce my neglected holes because my morning slot is a mad rush to get up and get back to bed.

Neither Aurelia nor I believe that we need to go to sleep at 8.30 am. We lie down thinking this is quite unnecessary, and that of course we can both stay up all day. But in a few minutes she surrenders, and as I surrender to mothering her in this manner, a sleepiness I could have sworn I would not feel, creeps into my eyelids. Maybe this isn’t such an encumbrance after all. Maybe this is actually the perfect thing.

The irony does not escape me. I feel a lot worse on days where I busy myself in these sleep slots. My baby, whose sensitivity and high demands require more hands on mothering than I’d expected, her needs also force me to lie down twice a day. An unwanted, frequently bemoaned, and yet vitally restorative practice. I do not believe in random events, and I thank my Creator for the silver lining.

I sense that silver linings are woven into the universe, and with time {sometimes many years}, and a softness of heart, we glimpse them. Closer to home even than rainbows and stars in the dark.

I grieve winter’s effect on me, but when spring arrives and we drive through the country and buy our first jonquils for the season, I swear I am happier than most. I get a relief+joy cocktail appropriate to the degree I have suffered.

Having a sensitive daughter is similar. She asks for physical contact all day and all night, and when I recoil from the intensity, I remind myself to lean in rather than pull away from her needs. People everywhere try to procure smiles from her, as she holds her face with porcelain solemnity. They would like to hold her but she dissents loudly and clams up, apart from with one person she knows well. Later in the warmth of our lounge we are privy to the hugest smiles, most adoring eyes, scrumptious cuddles and giggles. That leaning in to meet her needs for security? It is rewarded with the most exclusive view of her true person. The smile she gives me when she wakes from her nap to see me lying next to her? It’s like the golden sun coming out, not even behind a cloud.  

I’ve written about my closeness with Ben, and the chance I’ve had to learn to sew, the unexpected light in the pain and isolation. I love that I must always be fit and healthy because of my diet and exercise regime. The friends I’ve made through computer screens are intuitive, sensitive, compassionate and suffering women who I will love for all my days. Being awake while operated on has been my worst fear for a long time, but even that way of birthing came with a strange glow of empowerment after surviving the ordeal. I didn’t realise till Aurelia was born that having a tiny baby, while complicating things immensely prenatally, also meant that she would be my tiny baby for a lot longer than usual, and it delights me.

But there was one sizable cloud that didn’t appear to have a silver lining. I have long wondered what the point of my education in music and ballet was, once my body brought it to a close. The hours and years of dedication seemed to be a snapped branch. Did it have a place in my life beyond a wistful memory?

Only years later do I see that without the richness the arts bring me daily, I would be even more prone to despair. Sustaining my mind in a long illness; this is an immense value. I don’t want to end my life so much when I have danced around the lounge to Tchaicovsky to Aurelia’s delight, when I have listened to a composer’s representation of all the emotions on the human spectrum and felt understood, seen myself in the characters I read of, been transported in these books to harder eras, and breathed in perspective. If education’s purpose is to enable us to live a rich, abundant life, then that richness is beneficial all the more when we move into a barren place. That richness is sustaining life. Susan Shaeffer Macauley shared in her book this quote: “Education is a matter of the spirit.”

I know this now.

I want to get up even though I hurt, and smell the ocean again, and create a garment, and read another poem, and hug my scrumptious baby, and eat more cake. I think that there is an iridescent lining attached to each crushing cloud.

“There are always flowers for those who want to see them.”

Henri Matisse

my flute, the closet, and i

found

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.  

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. 

found

the hangover diaries

Unkown

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.

a day in the life of me

I often get asked how I spend my days at home, sans work or infants. This is an example of a pretty good day. Pretty good days come when I follow this simple routine for weeks on end, without too many outings/energy-using occasions.

I spend my days going slow, as slow as my eighty year old grandma. If I go slowly and gently, I can exist with minimal pain and actually improve a little. In the long run, I get can give and enjoy more by going this pace, because it fosters stability. I farewell the run, crash, run, crash cycle.

8.30 – I start to surface after Ben has kissed me goodbye for work. I just grunt ‘goodbye’ {this could also be interpreted by him as ‘I love you’} because I like to stay in my sleepy zone. If I wake up early, I have a guaranteed sick day.

9:00 – I slowly crawl out of bed, and start oil pulling. I swish a tablespoon of coconut oil around in my mouth to pull from it toxins which compromise my weak teeth and immune system. After 20 minutes of swishing, I go and brush my teeth. I detest the taste of toothpaste while eating breakfast, but oh well.

9:30 – I make my breakfast, and it is exactly the same every single day. Routine is a lifeline for me.

corn puffs

rice puffs

shredded coconut

chia seeds

linseed meal

nuts

rice milk

then I drink a large glass of luke warm water to keep my body temperature stable, and swallow about twenty tablets.

10:00 – Now I’m heading for a shower, and there is no rushing and not enough concern for water conservation. My dad would die if he knew I used heat lamps in the summer too. After I’m dressed and mascared, I celebrate my victory with a little sit down and no champagne.

10.30 – It’s time to deal with my postural orthostatic tachycardia syndrome {POTS}. A few days without exercise and my head goes black every time I try to walk. I drive to the gym – and depending on health, this is hazardous as my eyes struggle to focus and prefer to stay relaxed and blurry. I have a program of 20 minutes of cardio on the bike, treadmill, or cross trainer, and 10 minutes of stretching. I leave my fellows sweating it out with my speedy workout, and I feel the best I will feel all day while I’m exercising. I feel alive, but it’s worn off by the time I’m back in the car.

11:30 – I’ve arrived home and it’s time to sit down, sometimes with tea and some sugar/dairy/gluten free treat. Then lunch, where I try to stack on the carbs and protein because my body uses energy the same way I use shower water.

The afternoon is less structured. If I’m still functioning, I’ll do a couple of jobs. Maybe I’ll clean the bathroom, or fold washing, write an email, make an appointment, bath the dog. If I do too much, I get wiped out on the couch with a headache and dizziness.

I need to be restful, so I’ll also read books, make things, water my garden, and do all in my power not to fall asleep. Falling asleep sometimes happens accidentally, but it also brings on insomnia, so I have to very strict with myself.

5:15 – Ben arrives home from work! Wolfie the cavoodle goes psycho with yelping and jumping, because he knows he’s about to get a walk.  We drive to the waterfront or botanical gardens for some nature and catch up time. Then Ben cooks dinner or heats up left overs {he makes incredible food!} and I make a salad, or rest if I need to.  

The evening is eating dinner, reading together, and hopping into bed around 9.30. Ben usually picks me up off the couch and carries me to bed. Then I rest up for a few minutes, hop out and brush my teeth.

The day is done! My favourite days of all are these quiet home ones, where I can be so gentle as to keep the pain and fatigue at bay. Tiring days which escalate into accompanying symptoms are the ones where I catch up with someone, have to go to an appointment, have to go to the shops....those days usually aren’t ‘pretty good days’.

Thoughtful people wonder if going out for coffee with friends might help with boredom, not realising that this ‘boredom’ is the key to feeling ok. I have grown to be content in my own company and the silence of my home, and my body thrives on peace. Others envy my idyllic housewife life. And if I felt well, and could care for my home and see friends, it would be a most luxurious and lazy life. But to me this is a full day. Just as one person’s limit is a 40 hour work week, mine is a shower, gym and a job. 

words for wednesday {page 15, happy healthy resolutions}

I have been topsy turveying around feeling perplexed in relapse land. I lose the plot emotionally when I relapse, so it's double trouble.

I decided: time to give my body a chance to snap out of hazy land into energy land and hopefully driving land again soon. Ben is such a great taxi, but it really does make our lives more complicated. I am on Day 7 of quitting fructose – I know, bye-bye fruit, dried fruit, honey... caffine had to go too {and I said bye to processed sugar a long time ago}. No more midday date hits and crashes, and hopefully a move towards a sharper brain and more energy. If you know me, you will know how much I love my English Breakfast tea - my sacrifice just proves how much I want to get well.

But despite saying bye to my frienemies, I feel excited. Buckwheat pancakes, peanut butter chocolate truffles, hummus, leafy greens, nuts, jasmine green tea, and healthy granola. It’s actually a delicious feast, thanks to recipes from Sarah Wilson’s blog and beyond. 

I’m also doing breathing exercises/mindfulness to help calm my ever stressed self down. I trialled my new ‘belly’ {which I prefer to call tummy} breathing at the hairdresser this week under that sneaky black cape, and I returned without having felt anxious, told a lie, or having developed a headache. I didn’t even lie down afterwards! I can’t express my delight at finding a technique which helps conserve energy.

Ben and I also realised that in the kafuffle of moving and ‘settling,’ {which is really code for ‘not feeling settled at all’ and 'missing Melbourne'} we haven’t been doing things we enjoy very much. We used to have happy little family traditions; daily walks to the Parklands to watch the dogs play, going to buy incredible gluten free fruit loaf from the bakery on Saturdays, watching romcoms. Lately it’s all been survival, and not much enjoying – and I have a strong feeling that if we did more enjoying and just being content here we might settle better. We have re-committed!

It could be a placebo effect, which is fine by me, because I don’t care what makes me feel better, or it could be a combination of eating great food, breathing, enjoying walks outside and being positive...but I’m feeling a tiny bit better. I appreciate this little step forward.

{the other night I went to youtube for a laughing/cute animal fix, but I cannot beat this hair accident one which naturally went viral.}

words for wednesday {Page 14, being a Somebody}

“Like city dwellers who no longer notice the polluted air, we breathe in the atmosphere of ungrace unawares. As early as pre-school, and kindergarten we are tested and evaluated before being slotted into advanced, normal or slow track. Test papers come back with errors, not correct answers, highlighted. Ford Motor Company grades employees on a scale of 1 (clerks and secretaries) to 27 (chairman of the board). You must be at least Grade 9 to qualify for a parking space: Grade 13 brings with it such perks as a window, plants and an intercom system: Grade 16 offices come equipped with private bathrooms. Justice departments and mortgage companies cannot operate by grace. A sports franchise rewards those who complete passes, throw strikes, or make baskets, and has no place for those who fail. Fortune Magazine annually lists the five hundred richest: no one knows the names of the five hundred poorest.”

Philip Yancey, Grace

It’s not really surprising that I question my existence now that I am fully dependant, and meritless. I feel like a Nobody because every Somebody in our world has to earn their way to Somebodiness and I can’t anymore. I can't, and it doesn't feel good. I’ve always defined myself by my achievements, and now that I can’t achieve, I wonder where on earth I fit in?

But then there’s this bizarre and wonderful grace thing, where things aren’t earned or strictly fair. I have a meagre grasp of it. I just know that grace doesn’t care about what I can do, and that we need more grace in our world because there’s enough ungrace. Grace seems to me a lot like unconditional love.

I was looking through HONY and a wizened face appeared, a man playing a wooden flute. The music drew me in, but then I read what the man had said and it seemed to sum up every confused thought I have had regarding me and how I fit into the world now that I am ill.

“Don’t look to other people for validation. Your birth was your validation.”

Human of New York

I was born a little red squishy 7 lbs of girl. I was loved for just being a human being, even when Mum first discovered that I was in her womb, barely formed, barely functional. I didn’t acquire my validity to exist once I’d done something impressive, or sacrificial, or beautiful. I am not valid because of what I do - but because I was born and I make up one of the millions of souls who exist because they were created.

“Your eyes saw my unformed substance;

in your book were written, ever one of them,

the days that were formed for me,

when as yet there was none of them.”

Ps 139

I only discovered Humans of New York a couple of weeks ago, but it was love at first sight and every sight since.

I am overwhelmed by the beauty and uniqueness of every soul captured. When I trawl through the photos and hilarious or sobering quotes I feel less alone because there are thousands of humans going through highs and lows simultaneously. I feel community.

  

words for wednesday {page 12, nice people}

My friend finds the best words and gives them to me as presents. She found the ones you read today.

“Fame is a vapour

Popularity an accident

Riches take wings

Only one thing endures, and that is Character.”

Horace Greeley

And then, I think what my friend wrote after this is even better. “It doesn’t matter if you spend 8 hours a day at a job you hate or all day in your home. It matters who you were in that 8 hours."

I just have me left - I don't have the qualifications or income or social life I had envisaged. Sometimes I feel scared even to talk to my hairdresser in case she asks what I've been doing that day. I fear someone will come to the door while I am asleep at midday. I feel that I need to justify my very existence by proof of things achieved. It's the darkest cage, the thought that I am a waste if I don't do the usual things, have the conventional life. But when I think that it's how I live my moments, I feel like I am alive; that my days matter, that my existence is valid.

  

"Kind words can be short and easy to speak, but their echoes are truly endless."

Mother Theresa

Disillusionment with medics had settled thick inside me, and last week I had to attend another appointment with a nurse to be put on a ‘care plan’. I wasn’t looking forward to it – I could predict the unhelpful comments and anticipate the deep sense of misunderstanding I so often stumble away with. 

‘You only weigh such and such, are you sure you don’t have anorexia rather than CFS?’

 ‘You don’t eat sugar, dairy or wheat; I’m concerned it’s not a balanced enough diet.’

‘Your tests are all spot on perfect, so things are obviously going well.’

But this nurse, she had me bouncing out of the clinic, ecstatic. I actually had an adrenalin rush from happiness, and managed to go to a few shops afterwards before it wore off. Not only did she empathise about my illness, she spoke with sadness about all the misunderstanding that invisible and longterm illness sufferers get. Centrelink, dreams lost, and patience were just some of the things we talked about. She knew I was petite, she knew my diet was healthy, she knew I was sick. We laughed and talked for almost an hour and every word she said was balm to me. It was like having a warm bubble bath after many ice ones.

I went away and thought that if every single person was as kind as she was, we would have a very happy world. I naively wonder why more people can’t be like that? She is doing one of the greatest jobs on earth.