Full Heart, Half-hearted

I passed a leaf on the path yesterday. Autumn arrived some time ago, but it’s a reluctant beginning. We’ve had an extraordinary summer.  Long, dry and hot. And the first summer in years that I have been able to function like a well person. Trips to the beach most weekends, drinking from the scratchy edge of the thermos cup, eating squishy sandwiches and luke warm sausage rolls. Lying on the blanket looking up at the sky, deeply content that it no longer wheels around me. I have read books this summer, lying on my tummy on the picnic rug, or sheltered by the beach tent.  The most memorable being Chappy and Being Mortal. And this summer, I have joined in, swimming in the surf, riding my bike, climbing the volcano that sits just outside my window. When I was sick I couldn’t make the walk up the steep track without the certainty that there would be payback. I couldn’t enjoy the views, bleat at the resident sheep or let the breeze push my hair back from my face, soothing the heat of my exertion. The few times I managed it, it was with teeth gritted, heart hammering, nausea rising. There is a seat up there, on the lip of the crater. It looks towards our house. It is a favourite spot, not least because I used to look at it from my bedroom window and despair that I might never sit up there again.

12717610_10154197701500815_302856475012684141_n

But now I can.

Yesterday, Zed joined me for a walk up ‘our mountain’. He was keen to burn off some excess energy, I’m trying to improve my fitness. Six years of an extremely sedentary, sometimes horizontal life, is hard to physically bounce back from. But now I have a personal trainer, a plan, and yesterday it was my homework to go for a ten minute walk; an as ‘hard as you can go’ kind of walk. The kind of walk that our steep sided volcano track was built for. So Zed and I set off down the road.

I am blown away by how beautiful this country is. We live right in the centre of this sprawling city, but there are green spaces and volcanoes dotted all across the urban landscape. And trees, so many beautiful trees. Trees fill me with calm.  Look at this beauty.

12439348_10154197702215815_1359232120238686710_n

At the start of the track my intrepid 8 year old darts off to the side of the volcano: “meet you at the top Mum!” he shouts, already shoulder high in grass.  He’s climbing directly up, I’m taking the track. At the top he calls out that he’s going to run down into the crater and meet me up on the other side. He’s always been a ‘road less travelled’ kinda kid. I smile at him and relish the solitude. It’s gorgeous up the top here. Park benches dot their way around the crater rim, looking outwards.

Our national treasures of trees, the Pohutukawa, reach their arms across toward one another, high on the hill, circling the site that once was home to a Maori Pa. You can see evidence of their settlement in the kumara pits that still exist. In true Pa fashion, this crater would most likely have been barren of the grass it now wears. The ground would have been cleared around the whare. Now, the crater is resplendent with a thick carpet of grass.  Around the outside of the volcano, untrimmed by grazing sheep, it is long, rippled by the prevailing winds. But in the shelter of this hollow it resembles an inverted paddock. Like a fish-eye lens has warped the contours of the land. It drops away and lifts again in a perfect bowl. It would have been a safe and easily fortified home for those Maori villagers.  I wish I could go back in time and see how it was, see the cooking fire smoke and listen to the singing.

12049366_10154197701305815_987857895515150545_n 1382071_10154197701785815_1768132814369463914_n

Too soon, I’ve reached the far side of the crater rim track. My boy is ascending the steep edge.

12936549_10154197733385815_1785889513942309925_n

We hear voices, echoing through the natural amphitheatre, we are not alone anymore. A group of teenagers laugh and stumble through a gate that connects the volcano to the streets below. They take selfies and videos to upload onto their social media. One chases a sheep and another calls out “tackle him!”. The sheep has more wits about him than the boy, and is up the mountain faster than a goat. I smile and reach for Zed’s hand. “…it’s nice up here, hey Mum,” he says. His cheeks are rosy. We pass a stand of bamboo and slap the mosquitoes away.  It is nice up here. Even with other people around, it’s beautiful and serene. We come across a few more groups of people. I take some photos and think about how I would like to share them with you.

The two of us stop for a little sit down and I notice for the first time, a plaque attached to the bench. It’s a memorial seat, placed there by the wife of  ‘Michael’. A beautiful spot for remembering. I think about them, the people I don’t know. The words fill my heart. This is the song of my soul’s learning through all those years of illness.

12923116_10154197701230815_1060843844359943391_n

We sit and think for a while before heading home. Of course, Zed makes off to slide down the slope of the hill, while I take the dirt track. Back on our footpath, I see the trees turning and notice the colours of autumn, slowly but surely transforming the streets.

12321248_10154197701895815_5395003859005663163_n

I long for the cooler weather, but I have loved my first real summer in years. I realise I am half-heartedly welcoming my favourite season. And just as I think it, I see it, a half-hearted leaf, laid out on the footpath in front of me. Maybe, this year, nature feels the same as I do.

Full heart; half hearted.

11265_10154197702080815_3079047604918808516_n

 

“Who, ARE you?” Emily Perkins Doll’s House

A Theatre Review… Kinda

I have been lucky enough to watch exactly half of the performances of A Doll’s House by Auckland Theatre Company.  It is an adaptation by Emily Perkins of the Ibsen original.  Set in contemporary New Zealand, it is the story of Nora, the cheerful half of an off-grid, sugar free, anti-capitalist couple.  Led by the principled Theo (Nora’s husband), they strive for the picture perfect eco-friendly life with their adorable twins, Billy and Bee.

The play is all about Nora, the ‘doll’ of the play’s title.   Boxed in by her life and the ideals they aspire to, Nora searches for ways to please everyone in her world.  She tries desperately, within her means, to effect damage control as the pressures build. All the while scrambling to maintain the facade she has built to make it all appear okay.

Nora is a complex character and it is easy to feel as the play progresses that there is a lot more to her personal story than is being revealed.  It’s clear that she is fighting her battles on her own personal front too; the presence of a more animalistic force is felt as the scenes change, starkly contrasting, yet each building on the tension, until finally, she cracks.  “Who, even, are you?” her husband asks her as their world begins to unravel.  Nora begins to see in that moment.  She is less, and more, than she ever thought possible.

Emily Perkins, herself a contemporary New Zealand woman and mother, has drawn all the shades of Nora so beautifully.  I confess that I have sat in the audience watching Laurel Devenie’s performance of Nora and felt the tears welling up in response to her struggle. She is a woman of my generation. Someone who strives to find the fine balance between sense of self, work, spousal responsibility and motherhood.  Ultimately, it is beyond her reach.  There is no happy ending for this ‘inspiration board’ couple.  As the play reaches it’s final crescendo, she leaves it all behind. Their ‘sustainable’ lifestyle is ultimately, not.

I’ve seen this play so many times because my seven year old son is one of the young actors who plays Billy, Nora’s son. The fact that Nora is loving my son as her own absolutely adds to the poignancy of the play for me. I feel it personally, that mother struggle. My heart is hers as she grapples with the contrast between the frustrations of motherhood and the beauty of her children’s newness. I feel connected to the performance because her arms are cradling a child I love so much. My heart aches anew every time I watch her leave him.

It is such a privilege to see a play evolve across a season.  Laurel Devenie’s performance is an absolute standout, particularly the last scene. The whole cast approach Emily Perkin’s adaptation with sensitivity and feeling. I have enjoyed watching the play each and every time, a feat that would be hard to match with many theatre productions.

And the kids.  Alongside the talented Madeleine Walker (that girl is going to be famous!), my Zed has been able to basically play himself.  A typical little boy; annoying his sister, making noise, wreaking havoc and being a sweet, skinny, vulnerable child. I am impressed with his commitment to the significant hours this play requires.  His enthusiasm for an audience and the joy on his face as the applause washes over him fills my heart with happiness.  It’s a beautiful thing to see your kid doing the thing that lights them up.

11210390_10153387034155815_1170317176912822282_n

Thank you Liz Baldwin-Featherstone, for putting Zed forward for the audition back in April.  Thank you Auckland Theatre Company, for putting on a play that has been such a joy to watch, over and over and over again.  Thank you for nurturing my son’s acting interests and caring for his needs so beautifully across the season, you are all outstanding people (especially you, Virginia Frankovich!) …he has loved the experience of playing Billy very much.  What a cool gig, to play around in a pit of pandas!

And thank you Zed, for reminding me every time, why mothering you is worth all the personal doubts and identity crises, worth all the struggles that every woman faces who chooses to be a mother. I promise you that I will never leave you.  Not because women leaving their children is a social taboo, but because I want to stay.

Being your Mum is one of the most useful things I have ever done. You’re stuck with me, babe.

Anna Kennedy: Nowhere Land

Today’s guest post comes from Anna Kennedy. Anna is a psychologist who became sick with severe ME (sometimes referred to as Chronic Fatigue Syndrome) and POTS.  Here, she thoughtfully discusses the mindset that has helped her navigate ‘Nowhere Land’.  I can really relate to the part where she talks about being able to do things that used to be impossible and how she thought she would never take that for granted again. Thank you Anna for sharing your experiences here.  I know that many will relate to your journey.

________________________________________________________________

He's a real nowhere mansitting in his

This is kind of how I feel these days. I have nothing much to show for the years since ME (Myalgic Encephalomyelitis) and its sidekick POTS (Postural Orthostatic Tachycardia Syndrome) became my constant bedfellows.  During the first horror year, when I was bedbound and lost 25% of my body weight, I at least looked the part.  ME was written all over my face, not to mention the rest of me which couldn’t stand up long enough to make a quick cuppa.  But nowadays I look pretty normal.

I’ve improved to the point that I’m more moderately affected with the odd severe dip thrown in just to keep me on my toes. My symptoms are less severe, but still unpredictable and frustratingly limiting. I’m too sick to hold down a job, but can manage paced domestic tasks and the occasional social event, all accompanied by the predictably unpredictable multitude of symptoms and payback that ME dishes out just for living.  If I lived in a silent dimly lit bubble and did absolutely nothing except lie down for 6 months, I expect I may even begin to feel quite chipper; but unfortunately there’s that little thing called Life that gets in the way of that.

These days I feel a gnawing kind of improvement guilt. I guess it’s probably akin to a kind of survivor guilt, a knowing about just how traumatic this illness can be.  Though the memory of severe ME is still fresh, I am not completely confined to my bed.  But I carry with me an awareness (that I didn’t have before) of the many who count my very worst days among their very best; who’ve lived for decades in a 24-hour terror of suffering so ghastly that it’s unfathomable for those who do not live it. I feel guilty that I was completely ignorant about ME before I was diagnosed. Guilty that I didn’t use my pre-illness years working as a health professional to recognise and educate people about ME and help those who I did not even know existed because they socialised online and lived within the four walls of their bedroom.  I feel guilty for improving when my friends with ME have not or have worsened and I still can’t do anything to relieve their suffering.

I feel guilty for not being grateful enough for the improvements I’ve made.  I remember when I was severely ill thinking that if I could just manage to cook a meal for my family again, I’d be fine with that. I yearned to load the dishwasher or take out the garbage. That was enough quality of life for me I thought. But then when I got there, the gratefulness that I tried to hold onto so tightly, slipped through my fingers.  Disappointingly quickly those domestic tasks, that seemed oh-so-shiny when I was too ill to do them, became dull.  Because, when I was at my most ill, I held on to a fantasy that improvement in functioning would naturally come with feeling well. But that didn’t happen. Instead, I moved up a notch from hellish to chronically cruddy.  So, when it comes down to it, I’m still sick every day; I can just do a bit more while being sick.  And I can hide it better.

These days I inhabit Nowhere Land.  I straddle the worlds of the chronically sick and The Well.  I move in two circles, in neither of which I feel I have a firm place.  To the doctors, I’m “managing a chronic illness”; I’ve gone to see the specialists who I hear may help, I’ve diligently tried their treatments and followed their protocols (most of which made me worse).  So I’m not really interesting to them now, because I’m not a success story but I’m not knocking on heaven’s door.  They’ve run out of ideas and just sort of leave me to it. I’m in Nowhere Land.

Socially, I’m a bit of a Nowhere (wo)man.  My friends with ME, the ones I made online when I was too sick for a social life and was lonely and desperate for understanding, those beautiful and courageous souls that I’ve never seen in the flesh, they’re mostly still here.  But I let them down because I’m not online as much and I miss supporting them when they need it most. I feel like my news of doing is deeply insensitive to their continued suffering, and I’ve betrayed them in having left the hellish world they still inhabit. I wonder if they feel angry when I vent and whine in our online support group about my trials which must all seem like problems they’d give their left arm to have. Little do they know, they are the precious thread of red wool that I use to wind my way back to comfort when I get lost in Nowhere Land.

Nowadays, I can also move into the world of the well.  Carrying around my knowledge of the unseen world of the chronically ill, I spend time with my in-the-flesh people. But I’m like some kind of odd expat who randomly pops in for unexpected visits.  Of those I’ve told about my illness, some have stayed and others have backed slowly away. Some I’ve backed away from too because their disinterest has hurt too much.  Those who have stayed have been patient enough to listen to my botched attempts at explaining ME in 100 words or less, and tried their best to understand its weirdness.  They’ve borne witness to my life with ME with curiosity and empathy. They’ve been repeatedly let down by my unreliability but kept coming back for more.  And they have stood patiently still while I’ve moved between my worlds. For these precious people, I’m grateful beyond words. I don’t know that I’d have done the same in their shoes.  These special people have made room for the ME in my life and put up with me changing from a mostly spirited, reliable and supportive friend, into a friend who is present with ad hoc inconsistency at best.

To the uninitiated, I’m better, as in recovered.  Because that’s generally the well person’s understanding of illness: you get sick then you get better…or you die. There’s no in between. There’s none of this living-with-it-on-and-on-every-single-day sickness.  “Gee you’re looking well” they say, and “I’m so glad you’re back on track”.  In reality I’m still an 80-year-old wolf in 43-year-old sheep’s clothing. Look more closely and you may wonder why I’m never really seen until the clock reaches pm.  At afternoon school pickup, you will notice I’m often the mum with wet hair and no makeup who shuffles to the nearest bench while the other mums stand around chatting in groups. I half listen but I’ve got little to say; partly because my one achievement of the day has been showering and getting dressed; also because to join them would mean standing up and losing what little remaining power my body has; but mostly because my brain-o-mush means I only absorb bits and pieces: I make a tit of myself by forgetting things they’ve just told me or making vague comments that trail off mid-sentence because I’ve suddenly forgotten what I was saying.

I’m the odd mum in my village; the middle-aged lady driving the nanna cart, wearing sunglasses in winter, head bobbing wearily as I trundle towards the classroom door, pale and nauseated by the darting movements and fingernails-down-blackboard noises that delighted children make when the school bell sounds. And, when he sees me, my 5-year-old chucks his backpack down in the middle of the schoolyard because he’s excruciatingly ‘‘barrassed‘ that I’m on my scooter and furious at this very public display that I’m sick again.  He knows full well it means, once home, Mum will shove Sao biscuits and jar of Vegemite on the table and stumble back to bed where he’ll visit me with a thousand bits of paper he’s coloured in and school notices to sign and stories of the big hurt on his hand from the awesome tricks he did on the monkey bars. And all the time my brain is blank and nothing’s going in, nada, zilch. And, because my body can’t seem to produce energy for ANYTHING, I have to remind myself to move my face into a smile, and let out uh-huhs and oh dears and kiss his hurt and make futile attempts at focusing my eyes on his drawing of Batman fighting the alien dude.

Before he leaves my bed, he reaches into his pocket and pulls out another little thing he’s collected today. He’s been doing this since I first became ill, before he was old enough to speak the words of what was happening to his mother.

He places a little white stone on top of a mounting collection of feathers and rocks and shells on my bedside table, precious gifts from him to me. “Thereyar Mummy, to help you get better”. If only, if only, my darling.

Over the years, I’ve started to run out of words to explain ME.  My brain scrambles in my efforts to describe its convoluted-ness in simple terms.  Also, telling the story of ME and my experience with it makes me feel vulnerable. It’s like peeling a bandaid off a wound that hasn’t healed and waiting for peoples’ reactions: some recoil and quickly er-hum their way out of the conversation; others start to get that suspicious look of disbelief I’ve seen too many times and which never fails to hurt to the core; many show great caring which can either make me weep with embarrassed relief or go on to gush in a tidal wave of oversharing.   For those curious enough to ask more, there is, frustratingly, never a straight-forward answer to the questions that follow: What causes it? What’s the treatment? What’s your prognosis? Why haven’t I heard of ME, oh CFS yes I’ve heard of that, that’s that chronic fatigue thing? Do you know about XYZ [insert helpful suggestion of treatment or name of alternative health practitioner here]? You’re looking good, when can you go back to work/ use your spare time to paint/help out at the school fete/come jogging with me?

At times, I’ve wanted people to know about the parts of my life they don’t see. I’ve explained that when they don’t see me for long stretches it’s because I’m more ill and horizontally resting so that I can be well enough to do things again. Hoping not to sound like a whinger, I’ve provided a few details of the limited routine I follow to tread the fine line between semi-functional and not; how a “pretty good” week is still one with 2-3 days spent in bed; and how I live every day with pain and nausea and trouble being upright. They listen and nod and say kind things, but I can see they can’t really fathom how the person in front of them who looks alright has any kind of illness at all.  And I understand all this, really I do, because that would have been me a few years ago.  Listening and nodding, but inside going Huh?

So that’s where I am. Sitting (well, mostly lying) in Nowhere Land:  the world of moderate ME.  In and out of the world of the well and the sick.  Making all my nowhere plans; ideas that so often don’t come to fruition because ME has its own agenda.

But how does that song end again?

Nowhere Man, don’t worryTake your time,(1)

And, I’m reminded how very blessed I am.  I have my people, the souls behind the screen and in the flesh, the ones who buoy me, teach me, and love me.  And, even in my Nowhere Land, my people find me, and they meet me where I am.

Little Guy

Since Kellie‘s sudden passing, my thoughts have turned often to digital legacy.  The footprint we leave behind with our internet published words.  I’m sure Kellie’s family find her words a gift to treasure.  I know I do. And so I decided that I would write posts for my little family.  A small word-legacy of my own.  I don’t see it as morbid, just sensible. We should all consider what might be left of us, for our loved ones if something should happen.
And in the end, something will happen to every one of us.
I still have a few letters from my Mum that escaped being culled over the years.  I love to read them and hear the words she wrote just for me.  Recently I wrote some words for
my girl.  Today, it’s the turn of our little guy.  One day he will be taller than me, with whiskers on those cheeks!  I can’t imagine it.  But I know that even then, he’ll still be my sweet little boy, always my baby!  And he may want to read my words about him.  So, Zed, today’s post is all about you.  Mwah!

Little Guy, when you were born it was a sunny Spring day.  The weather was as hopeful as we were.  A new season was certainly on its way! Your birth was brought forward three weeks because of my health. Just as well really, because the scans were showing us that you were already a very big boy! We arrived at the hospital early and I laboured, thanks to a very kind obstetrician, without pain, for eight hours. Then: there you were, completely perfect, so big and so content.  I was so surprised, it really was that easy, a dream delivery and a delightful baby. You didn’t make a peep.  You just looked up at us while your Daddy and I grinned.  Hello, you seemed to be saying to us.  I’m here, let’s get on with stuff!

You were an alert, contented little guy right from the start.  We had your day bed out where all the action was and you would sleep when you wanted to, oblivious to all the noise.  We knew when you were awake because you woke singing little “traLAla!” songs.  What a happy sound!  Your little face, a picture of happiness, sweetly peeping over the edge of your blankets, your legs kicking when you wanted to see more of things.  You adored the jolly jumper and would swing wide, giggling as you swung back, kicking out your strong little legs for a bigger jump.

No one could make you laugh quite as much as your big sister, I have gorgeous pictures of you two, sharing jokes no one else understood. And from so early, you began to use your considerable skill to get your way.  Those eyes would arch up into a teasing grin and few could resist your charming ways.  As if that wasn’t enough entertainment, your quirky sense of humour has had us falling apart with laughter for years, and here you are, only six. Your presence in our family has changed things around here and we like it!

1929791_18427125814_3626_n

You are a unique fella, Zed.  There’s no one quite like you.  You think differently, and I love that.  You remind me of your uncle, so often that you hear me call you by his name sometimes.  Not because you are like him, but because like him, you walk to the beat of your own drum.  You are equal parts charming and mischievous.  And then you disarm us with a sudden display of sweet affection, your arms wrapping around us, your kisses hot on our faces.   You like to dance (in your own special mix of break-dance and ballet) and put on shows, you tell us you want to be an actor.  You are a fidgety fella, but then you surprise us with your attention and composure when you are interested in something.  I will always remember the time I was playing classical music in the car, Bach I think, and I could see your little eyes welling up. “Mum, why is this music sad?” you asked me.  You respond to music with a sense of feeling most little guys don’t have. You are a study in contrast, a sensitive soul and a typical boy, all rolled into one busy package.

When you were about four, you told me a little story that I will always treasure.  You told me that before you were born, you flew around the world until you found a girl you wanted to be your mum.  Then you told God, “I want that one”.  You told me that She said yes.  I like lots of things about that story.  You tell me now that you love to write, even though it is a difficult dyslexic process to get those great ideas out on paper.  But the struggle doesn’t stop you loving to tell stories.  Keep telling them Little Guy.  You’ve got great stories.

I feel sad that you have never known me as a well person.  Even when you were in my tummy, I was constantly dizzy, tired and sick.  I hope my efforts to mitigate the impact of my illness on you have brought you the best version of me you can have.  I hope it’s good enough. You were a gift child and I am grateful to you, because from the very beginning you made it easier for me, sweet boy. You were such a good baby, a good feeder a good sleeper and an all round sweetheart.  Until… we reached the age of little-boy-grossness and the hilarity of farts, smelly feet, bogeys and a fascination with all things icky!  But I’m sure it will pass…?!

Before you came along, we’d been trying for some time to have you.  But Granny was really sick and everyone was so stressed.  I think you eventually came along at the right time, but I so wish she had seen your sweet face.  My goodness she would have loved you so much, Zed.  She would have wanted to smother you with kisses and special Granny cuddles!  We chose your name because of her.  We are not religious, but she was a woman of faith, and your name means “The Lord has remembered”.  It would have meant a lot to her.  And we wanted your name to stand for something bigger; see, you are a continuation of a long line of people. So many stories and souls worth remembering, sweet heart.  So many people whose lives have contributed to yours, so stay in touch with your extended family.  They are just like that funny saying Aunty Cath sent me on a calendar one year:
“families are like fudge…mostly sweet
with a few nuts”.

I don’t know what your life has in store for you.  But I know that it is significant. There is something special about you, something different and important.  Don’t try to hide your uniqueness little guy.  Be who you are and spread the gift of your charms around, people feel special when you fix your attention on them.  You bring joy and validation to so many people when you see them for who they are.  Remember your gifts and use them.  Someone once said that the meaning of life is to discover your gift, then the purpose of life is to give it away. I don’t know who that was, but they were on to something. You have been bestowed with many gifts and the ability to give much.  If you are ever in doubt about what to do? Do that.

 

mugshotZAC