Q and A

Last month, I had to deliver a ten minute talk …about me.  My story.  It was part of the block weekend for the Leadership Programme I am doing.  The programme is about leadership in social change and it is challenging my thinking in lots of ways. I really prefer writing to talking (I know some of you will find that hard to believe!) and speech making isn’t really my cuppa tea.    But I started doodling, as you do. I doodled lots of question marks.  And then I made a real cuppa.

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When I returned to my doodles, I stared at those question marks for a long time.  And it occurred to me that the best way to tell my story, was to do it using the defining questions of my life. There have been so many things I have wondered, but I pared them down to the bare minimum.
So! Here is what I came up with.

My Life, in Fourteen Questions:

I am a kiwi girl, born just after my parents completed bible college in Australia. My parents felt moved to work on the mission field in a third world country. So I was raised in Papua New Guinea, then I went to boarding school in Australia and soon after that, they went to China. These were the locations of my upbringing. In total, I attended 13 schools, four tertiary institutions and eventually moved back to New Zealand when I was 23 years old.

There were lots of things about my childhood that made me think.  And one of the first big questions I remember thinking, was:

"What makes us think our religion is more right than theirs?"

I liked to think about things as a kid.  And I started to notice other odd things about our world.  I noticed that when I was at the international school in PNG, there were more than forty nationalities of kids and everyone played together. Where we were from wasn’t even a factor in the forging of friendships.  But when I went home to New Zealand on furlough, people teased me for coming from a place where the women wore grass skirts and showed their boobs.
I was an outsider in my own country.
I began to think,

"Why do people have to be the same to be accepted?"

In my teens I became deeply philosophical, the way some teens do! The questions came thick and fast:

“What is the origin of thought?” “Are we inherently good… or evil?” “Is all this real, or just a figment of my imagination?” “Is life governed by fate, or are we self determined?” “Why are we here?” (and you kids from the seventies and eighties will relate to this one) 
“Are they gonna drop the bomb, or not?”
But these deep questions were all overwhelmed by a far more pressing issue:

“How do you pash?”

(Note to teenage self:  Mum’s historial romance novels were not the place to search for this information.  “She explored his mouth with her tongue” was a stylistic interpretation, not an instruction).

By this time, I’d been given the nickname Falling Tree because I was fainting a lot.
No… not because of boys (but there was plenty of swooning, too… I’m looking at you Morten Harket)!  I made it through my final year of high school and got into a competitive Journalism degree at a Sydney University.  I was ecstatic!

My well meaning Dad thought journalism would corrupt me, so I wasn’t allowed to do that course.  But a year later, when I reframed my University ambitions to encompass a career path ‘better suited for a woman’ I was allowed to go.  I embarked on a degree in Education and Teacher Librarianship.  Instead of writing words, I planned to surround myself with them.
But I wondered,

"Why does being a girl have anything to do with it?"

It took me seven years to get that degree (it was a bit boring).  Across that decade, I moved countries, got married, and divorced, and valiantly embarked on Project: Find a compatible Handsome Prince. There were quite a lot of frogs to kiss, so I used my knowledge of pashing with great determination.  Surely one of those frogs would be him…?!  And all of a sudden three wonderful things happened in a short space of time.  I found my man, we bought our first house and had Bee and Little Zed. All my dreams were coming true.

Then one day I got the flu, and I never recovered. Can you imagine that?  I was constantly dizzy and fainting a lot. But the faints were actually my heart stopping. I was fitted with a pacemaker to keep me ticking.

I asked a lot of questions during those early days of sickness, but the biggest one was

"How Long will this Last?"

No one knew.   Other parts of me starting going wrong: digestion, bladder and bowel function, temperature regulation, cognitive function, I couldn’t sweat properly, my pupils were not reacting properly to light, I had constant nausea and dizziness every time I moved to stand.  My blood pressure and heart rate were all over the place. I began to experience burning, tingling and numbness in my hands and feet, I struggled through daily chores. I had to quit teaching and we had to take in home stay students to cover my loss of income. The fatigue swamped me. My gait and mobility started to change. Every day was an exercise in pushing through. Pacing. Planning ahead.

I ended up in front of a neurologist who explained that I have a progressive form of autonomic nervous system dysfunction called Pan-dys-autonomia.  That covers all the automatic things your body does.  I know some of you here might relate to that. What made my problem odd was that I had it without a primary diagnosis. Dysautonomia is common in late stage MS and Parkinsons, aspects of autonomic dysfunction affect people with spinal cord injury too.  But the cause of mine was elusive. Six years of watching the progression, endless tests, treating the symptoms and fearing the decline and fall of my future led me to this desperate question:

“Can’t something be done?”

That question was met with averted eyes and shaking heads. Do what you can with your family now, I was told. Before you can’t anymore. I didn’t like that scenario. We embarked on a proactive memory-making schedule. A family holiday, the prioritising of togetherness. And I researched. My research led me to other patients overseas.  I listened to their stories, finally finding people who understood. I began to think deeply about the issues that face people like me.  People with ‘invisible’ illnesses, disability and accessibility issues that aren’t immediately evident. People with rare diseases or poorly understood diagnoses. I wanted to know what could be done for them, too. The injustices of all those lives lived beneath the radar began to burn my brain.
It led to this question:

“What can I do?”

I was offered some work writing for an overseas blog. And I remembered that I like to write.  So I started to write for more people, and even for myself. Blogging led me to ask many more questions, but for the first time I was beginning to see that it was leading me to answers too.  About me, about my purpose, and the beautiful, simple idea, that I could do what I do best.
I could write about it!

One day, I found a Youtube video by a specialist overseas who was treating patients like me, and getting results.  My general physician didn’t want to know. So I pushed and I fought and I learned to use my voice with sometimes, quite intimidating doctors! I kept writing for The Invisible and they began to respond. I wrote for me and began to take action. Until finally, I found a specialist who had read the same papers as me, who had seen the same video. He started me on a new treatment regime in January and it is so far looking really promising.
Fingers crossed!

And here I am, feeling better than I have in six years, embarking on the Be.Leadership Programme, and wondering

“Where will this lead?"

I know first hand that while we are all, to some degree,
defined by what our bodies can do and not do;
more powerfully, we are defined by
what we think,
by how we feel,
and by what we can do about that.

I think we have a responsibility to
help people understand
that our common humanity
is bigger than religion,
it is deeper than culture or race,
it is more practical than philosophy,
it’s broader than gender
and more timeless than life spans,
it’s our world’s biggest learning challenge
and it even transcends our physical abilities.

Those questions of mine have taken forty years to percolate. And I am just beginning to understand that they all point to the same thing.
That we, at the heart of things, have more in common than we don’t.

I am so grateful to have found an authentic way to connect my heart for social change, to society.

“How did I get so lucky, to have my heart awakened
to others and their suffering?”

Pema Chodron

Q and A
Q and A
Questions and Answers

The Inverse of Adverse

…mothering from a place of pain…

Sometimes, for my writing gigs about parenting, I feel like there are two categories of mother in this world. It’s probably because I write for both groups. I’d like to write for Dads too, but I don’t relate as naturally to the Dad things. When I see a mothering issue, my writerly mind starts to turn it over from the points of view of two types of mum. The healthy mums and the sick mums.

Of course, it’s much more complex than that, because all mothers face diverse challenges every single day.  Many mums we see in the ‘healthy’ camp, are in fact carrying interior burdens they would cringe to let out into the daylight of public opinion, I get that.  There’s a huge crossover between those camps. Life is an imperfect art and really crap things happen all the time. You might be in the midst of creating the most intricately perfect artwork on the canvas of life when it chucks a whole can of turd brown paint over your work. It happens regardless of who you think you are, the category you fit and whether or not the universe recognises that you should have exemption. Your beautiful work of art might not get up on the gallery wall, at least, not until it’s finished. We all carry scars, suffer fresh wounds.  We all have reparation work to do.  The Bad Stuff happens everywhere, even when it doesn’t look like it.

The other day, I picked up one of my kids.  I recognised the car in front of me as one of my friend’s.  I didn’t get out of my car to say hi (although I wanted to.  I am learning to look after my limitations better so I can cope for longer in my upright world).  She knows me, she knows my stuff.  So I sent her a message on my phone, from one driver’s seat to another  “Hello Beautiful!” I tapped.  Because she really is bona-fide beautiful.  This Mum is the sort of Mum that other Mums look at and their insides sink.  She looks perfect.  A tiny little frame, perfectly groomed hair and face, clothes you wish you had hanging in your own wardrobe… if only they made them ten sizes bigger!  She’s got a few degrees, a chic home. Bright, beautifully mannered children.  Oh, and that car rear I am staring at?  Very nice thank you very much.  The lady’s got class …and the means to show it.
And in truth, I really like her in spite of all that, you know?  😉 She’s personable, approachable, interesting and funny.  She’s a genuinely lovely person.  She slid elegantly out of her driver’s seat and came to chat with me at my window. I was struck by her beauty.  Sigh. Suck in your tummy, Rach.  Put on your smile.  I wonder how she really is?

How she is, really, arrived about two minutes into the conversation, when she revealed that she is facing not one, but two, major health crises.  I stared at her flawless complexion and thought about the torment that must be happening behind that beautiful face. Her vulnerable eyes are shielded by reflective sunglasses. I feel so lost for how to comfort her.  Even though I know it.  I know that torment. The ache of the sick mother.  The loneliness of facing your own mortality in the mirror.  The frustrations when the sick stuff leeches into the mothering stuff.  It’s horrible.  Unfair.  It’s life.

My heart is tuned toward the mums who are mothering while sick.  It’s like I can hear them, sobbing in their wardrobes, hiding from their children. I see the images that haunt their night time dreaming, their fears unleashed in a scape not limited by reality.  I feel their thumping hearts as they consider the most awful possibilities. A final severing of the metaphorical umbilical. The thought of life without them in it.  Carrying on.  Of some other person, filling their dent in the bed, their place in the world. The sick mothers, thinking about their babies, as much part of them as their own pulse and breath.  How can you even begin to prepare your babies for a world you may not be in?  And how can you do that without suffocating them in your arms and trapping them in your presence?  How can you step away from the feelings, to balance your mothering, when you live in fear?

There is so much to be afraid of.  But nothing we can do will change our truth.  Big life stuff is an irrefutable fact. It’s just part of the shape and texture of the life we happen to be living.  It’s real. It’s here. There is freedom in speaking it out. In owning it. And there is relief in surrendering expectation to a new paradigm. And because being sick gives it’s own gift of perspective and gravity;  there is something quite extraordinary that we get to tap into.  We get to mentally jump off the expectations of perfection.  We get to let the pressure drop. We get to focus on the things that matter most of all.  If we are prepared to leap into a new way of viewing our crappy situation.

My mother heart projects forward into the future. I look at my babies, so precious.  I think of the time I have with them.  The length of which, no person knows. As unpalatable as it is, the amount of time any of us have is limited.  I think of the quality of that time and I know my purpose.  I want to help my children to become excellent adults.  Beautiful world citizens who are kind, open-minded, thoughtful and flexible.  I want them to make the best out of the crap life hands them. I want them to make our world better for them being in it.  And there is no more artful way to do that then to teach them how to respond to adversity with grace.  How to take even small opportunities and run with them. I’m a sick Mum.  And it is precisely because I am sick that I have a meaningful context and opportunity to help my children be exceptional people.

I resolve to answer my fears with determination.  My situation is a chance that not every mumma gets. I know the value of my time and the importance of my role. I will teach. I will nurture. I will do these things imperfectly and sometimes flat on my back. I will do them with love and an eye on the people my children are becoming. In every adversity there is a teachable moment.  We can do something beautiful in every ugly, uncomfortable moment. We can guide our babies into fulfilling lives.  Show them how to shore-up, talk about it, get through.  How to keep their eye on the value of every given moment.

Don’t waste it, sick Mummas.  My sisters-in-arms.  Embrace it.

One moment, one day, at a time.

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Mother Hearts

 

baby feet, mother heart
Source: Foundation for Biomedical Research

“When were you ready for babies?” one of our babysitters once asked me.
She was in her late teens, a natural with our kids.  I wondered if she was beginning to notice that yearning within herself, that quiet mother-clucking, the sound that might grow to a hormonal crescendo by her forties. Was she wondering what it would be like to soothe her own babies to sleep instead of other people’s? I used to. I notice with interest these days, that it’s no longer fashionable to say you would love to have babies.  Not until you are at least in your thirties.  Why do we act like wanting babies is a timetabled urge?  Switched on by suitable circumstances?  I will always be grateful my circumstances brought my babies to me at a time when I was old enough to provide for them properly… but then I think, if they had come earlier in life, I’d have not been this unwell.  I don’t know why things happen the way they do.  Life is a peculiar thing. And it is good to remember, that for some, platitudes around motherhood like all in good time, or it will happen if it is meant to are painful, useless things to say.

“…about four years old I think”, I answered, truthfully.  When I was four, I already had a ‘baby’ of my own.  She was my special Sheila Carter (er, yes, that was her name, I named her in honour of a retired missionary we knew) and I clucked over her and loved her with fierce mother attentions. I loved the feel of her body in the curve of my arm and the way, if you bent her legs outwards, she could sit on my hip. She was the focus of all my games.  Where we lived, out in the back garden, we had a playhouse made from a packing case.  It had a fake shingle roof and tiny windows.  Outside the windows, within the reach of my eager little hands, was a grape vine, supplying great green orbs of sour sweetness for our playhouse meals.  There were daisies in the garden for gathering into chubby-handed bunches and mini furniture inside made from apple crates and hand-me-down cushions.

 

The original Sheila Carter
The original Sheila Carter

The boys, mercifully, spent most of their time up at the boy fort on the boundary of the yard.  But the playhouse. It was the sweet domain of the girls, untainted by rapid machine gun fire or cowboy-and-indian war cries.  We ‘cooked’ green grape stew, played house, and I tucked my Sheila Carter into the cot with purple paisley sheets.  She ate sitting up in her little high chair with the duck decal on the back.  I was in little Mummy heaven. One of these sunny evenings, my own Mum called us in for dinner.  But Sheila Carter was just so tired and she was still sleeping.  So I patted her tummy and ran inside.

I knew; the rule in our house was that you never leave your toys outside.  You certainly should never leave your baby outside.  But I realised too late that the rule meant I couldn’t go back to retrieve her. I wasn’t allowed.  My punishment that night was to sleep without my baby in my arms.  I cried my little four year old mother heart out.  I had let Sheila Carter down and I missed the curve of her little plastic body against mine.  Eventually too exhausted from tears, I fell into a nightscape of bad dreams.  
The next morning, as soon as the grey light filtered into my bedroom, I raced out to the playhouse to find Sheila Carter.

But she was gone.

Nobody has ever been able to tell me what happened to her.  Maybe the local dogs carried her off, or some kids decided to cause some havoc.  But she was gone and that was that.  I think my Mum was horrified.  She hadn’t meant my lesson to be quite so harsh as that!  They tried to console me by taking me to Wellington on my birthday, to choose a new baby at a big department store.  My new baby was a ‘Baby-This-n-That’ and could wave at me.  We called her Katie (a much better name for a doll, they said). She had silky blonde hair and big blue eyes.  She was cute.  I loved her and I still have her, but my little Mummy heart has always grieved for Sheila Carter, my first sweet baby.  She was the reason I could answer that babysitter with confidence.  I have been ready for babies since I first knew the joy, and the pain, of mothering. It’s what I was born to do.

I have many friends who, like me, were “born” mothers.  But they are mothers without babies.  For some, their babies passed away.  For others, their babies were gone before they arrived.  For still others, life circumstances have rendered their mother hearts empty, simply for lack of a daddy, or the years and endless cycles of IVF have not brought them what they hoped for.  Their arms; missing the curve of a baby who is all theirs.  A baby they have dreamt of and not been able to hold on to.  My heart breaks for them, for their mother heart’s grief.  For the longing that must surely be difficult to manage in the absence of the busy-ness of babies. In the presence of other people’s joy.  I know it is old fashioned and whimsical, but I so wish I could grant them baby wishes.  Supply them with the warm bundles of love to cherish and nurture.  I’m not saying that every woman needs a baby.  No.  But everyone of my girl friends who is without children, longs for them.  It is an ache that is so hard for them to bear.

So today, this post is in honour of my beautiful friends. The one’s whose arms are empty and hearts are longing to give love to little babies of their own.  You battle every day, to smile in the face of the losses you suffer, one moon after another.  You are strong and worthy and wonderful.  Any baby would be lucky to call you Mama.  I wish I could make the heavens do my bidding.  If I could, your mother love would have a place to go, and no one and nothing would ever carry that away from you.  I honour you for your loving hearts and the ways you give to others, sometimes without return or kinship.  I honour you for keeping on.  I honour you because you stay strong.

And my mother heart wishes I could just make it all better.

 


This beautiful song took me right back to that playhouse and my girlhood dreams.