Mother of God

My mother in law Mary has just passed away, you might have read about that here recently.  She slipped away late in the quiet of night.  I like to think of her last exhale as a sigh; no more struggle. I like to imagine her now, free to move. Happy, laughing and feeling at ease.

The last time we saw her she was having a good day. My husband cracked a joke and her face broke into a sudden grin; she laughed and we saw a glimpse again of the Mary, Mum and Nanna that we know. I like to think about that moment and I am grateful she got to share a laugh with her son. She loved him so much.

In the beginning, I used to think of her irreverently, as
‘Mary: Mother of God’
…because, like many doting mums, the sun rose and shone in the eyes of her boy. As if he himself were God! I thought wryly.  It seemed that he could do no wrong, and when we visited, her whole world would shift to revolve around him completely. I remember we were talking about him one day, soon after he and I had got back together again after a breakup; I stated what I thought was the obvious, “-yes, but even he is not perfect you know, Mary”. She looked at me and her mouth dropped open, just for a second, and I realised that in her eyes, he just was.

mary-mother-of-god-iconOf course, I wasn’t a mother myself then, and now that I am, I understand her better. In her eyes, her son was perfect. She loved him completely and unconditionally.  That kind of love is the special reserve of mothers. He is a lucky guy to have been so loved, so adored. I’m sure it is part of why his self esteem is so robust. She has always been his unwavering cheer squad, his bringer of supper and endless cups of tea.

Sometimes, believing that your kids are perfect makes it hard to love their partners. Mary and I didn’t think the same way, and there were times that I thought we would never breach the awkward misunderstandings between us. It seemed impossible for her to know that we were actually allies in the same quest; to love the man she raised and the man I chose. Maybe I just wasn’t the sort of girl she understood, but I always felt the love I gave him was not the love she thought he needed.  I agonised over it for years, wondering how I could do better or convince her that my intentions were pure.

I suppose it is common in mother-in-law/ daughter-in-law relationships. Many of my friends would say I am not alone. I persevered with the relationship because I knew that family was more important than those feelings. That there would be a time when she might need me.   As she got sicker and the Parkinson’s Dementia took hold, she often spoke to me about Rachel, her son’s wife. Because in those conversations, to her, I was someone else entirely. During those times, I enjoyed a friendship with Mary that I hadn’t experienced before. It was quite good for both of us.  I’m grateful for all those times when we were able to see each other through fresh eyes, and find something in each other to love.

The visit before last, in a rare moment of lucidity, she told me she just wanted her boys to be happy. My mother heart understood that so completely. Her eyes seemed to implore me to take up the torch, to make sure of it. I held her hands and told her I would do everything I could, but I knew even as I said it, that neither she, nor I could do enough to ensure her sons’ happiness. And that is the pain of love. To want to make everything perfect, to smooth the way, to lower the barrier, to ease the burden. We wish to do this for the ones we love even though we know that  we cannot control the hardships of life. They are not ours to command.

I held him in my arms after we heard that she had passed. He’s a big guy, my hubster. I held that big man and listened to the boy within, as the realisation began to wash over him. I held him and I thought about how far happiness was in that moment, and I offered him instead, comfort. Empathy. I listened and I helped him pack his suitcase. I made him a coffee for the midnight drive home.  I wished I could take away the shock, the loss, the thoughts of what might have been.  I know from my own loss, that those things are the price we pay for having had the love of a great mother. I could no longer take them from him than take the sun from the sky.

I think of Mary and imagine her soaring high above us, her eagle eyes watching out for her boys like she always has.

I know I am failing her still, failing to make him happy in the ways she wanted for him. I cannot be the sort of wife she wished me to be. I will not subject myself to the sort of life many women of her generation chose. I just cannot believe in my heart of hearts that the pathway to marital happiness lies that way. At least, it certainly doesn’t for the hubster and I.  When I am subservient to him, it simply breeds resentment. It’s not our recipe for success.

Still, these days I feel softly towards her for her expectations. In my head, I ask her to forgive me for not meeting them, because I simply can’t.  I ask her to look again at him, to notice. He loves an imperfect woman, lives an imperfect life.  And, he is already happy, in all the ways that count the most.

Rest now; mother Mary.  Rest safe in the knowledge that in any way I can, I carry your love forward into the future. I cannot mother him as you did, those times for him are treasured and past. But your boy, he’s safe in my arms,
I promise.

I don’t think there is a more fitting song than this one for this post, it was written by Paul McCartney, about his own mother Mary who died when he was 14. This one is a cover by Vazquez Sound, I just loved that it was sung by a child, because nothing renders you closer to your inner child than the passing of your mum.  So this is for my man, and for me too.

Constance Hall and the F Bombs

Being REAL in a world full of curated gorgeousness is so needed.  We are all so desperate for a breath of fresh air!

'A Queen is a woman who just wants to love other women and not do that bitchy thing that so many of us do,' says Constance Hall.
‘A Queen is a woman who just wants to love other women and not do that bitchy thing that so many of us do,’ says Constance Hall.  (photo source abc.net.au)

 

Constance Hall is refreshingly real. She’s the actual ‘Bad Mom’ (have you seen that movie?  I hated it, but I got what they were trying to say… it’s time to let go of the ridiculousness between women that exists in mama-land).  She’s a skate-in-sideways chick. An Australian sensation, mother of 4 and insanely popular mummy blogger. And she has just released a book. It’s about her, about mothering four kids. It’s a no-holds-barred look at relationships and life after babies.

bookcoverconstancehall

Today I went to her book release Q & A session hosted by The Women’s Collective and the Pullman Hotel in Auckland. I knew she would be irreverant, I knew there would be some shock-factor stuff, because that is her trade. I knew there would be challenging statements, because she is the Constance Hall of the recent social media cyclone over the ditch (a fellow mummy blogger let rip about Con’s manner of mothering and Con retaliated. It sparked a ‘mum war’ on the internet). I stayed well clear of it because I hate the nastier side of social media. It makes me so sad.  But I was curious about this raw kind of mother. The tell-all kind of mum. It bucks the trend alright, I wanted to see if she was just a sensationalist, or if there was something deeper driving her work.

Me and my fellow Queens this morning, Trudy and Pascale.
Me and my fellow Queens this morning, Trudy and Pascale.  Yep, I am a Big Bird, and no, I am no longer going to stoop to try to be more diminutive than I am!  #tallgirlsproblems

I was fascinated. Con (we’re at nickname status already cos that is how she rolls) blew onto the stage like a kind of mini tornado. Her hair was frizzy in a way I recognise from my own morning mirror, but on top of it she was wearing a crown of flowers and jewels. She’s tiny in stature and massive in presence. You could say she kind of exploded onto the podium like a freak weather bomb; blowing in out of nowhere and taking off the roof.  Within two minutes she had reassured us that she was wearing undies, unlike the other four days she’d been in New Zealand, because she’d be catching a plane later and she needed somewhere to hide her wee. Her humour is as raw as she is and the whole way through her talk, f-bombs exploded like colourful fireworks, punctating her florid discussion. She’s kind of like what would happen if you could cross Frida Kahlo with Reese Witherspoon and Whoopi Goldberg. Kapow!

I loved her. I think everyone in the room did. I loved that she said out loud some of my hidden, inner thoughts. I even loved all the f-bombs, because they made us laugh. I dated a comedian in my younger years, he always said that people laugh at what they relate to, especially when it is rude. And because every human being can relate to toileting, sex and death, regardless of their individual circumstances, most comedy covers these subjects. It’s just funny for us to see our not-talked-about experiences mirrored by others. It makes us feel more normal. Apart from wees and poos, Con’s Q & A covered: marital sexy time, break-ups, behaviour management (of kids and husbands), dealing with a history of abuse, death of children and grandparents, suicide, wine, why it’s best not to fight in front of kids, the age-old working mum vs. stay at home mum debate, the importance of support, multiple birth mothering, dyslexia, The Sisterhood, dealing with judgmental people and the importance of connection.

I can’t wait to read her book; Like a Queen. She’s just adorable. She makes the very hard job of mothering feel so much more achievable. She makes us feel like we’re doing a great job. Like everyone has days when it goes to custard. I think we forget that, in our intensity around getting it right.  We forget to cut ourselves some slack occasionally. We forget that having a loving mother is much more important than any other type of benefit we can achieve for our kids.  That having a loving mother is more than many kids have.

There were tears today from we women in that packed out auditorium. Tears of recognition and relief.  I’ve come a long way since the early days of parenthood and my babies are much older than most of the little ones at the venue today, but the message was as relevant to me as for the new mums there.
Take a deep breath. Do you love your kids? Do they know it? Love wins, every time. And you know what? Extending a bit of that love in your own direction is a brilliant idea too from time to time. Might just stop you from losing your mother-f#$%ing mind!

This afternoon, I’m going to assess the impact of Cyclone Con. I reckon she demolished a few of the ideas in my head that were damaging my peace of mind. I am grateful. Who needs perfectionism anyway? All it has ever done for me is give me reasons to feel like a failure.  Good to see that particular idea hitting the dirt. And what  purpose comparison? See ya, wouldn’t wanna be ya. And that ol’ flower, success? It’s moved into a new neighbourhood. Into the love camp. Over there I am already a raging success and that matters more than anything else.  I’m going to make like Queen Con, and take heart that my heart is the most important part of mothering.

Open your windows, let the winds of change blow out some of your cobwebby corners, too. It’s liberating!

If you’re keen, you can buy Like a Queen, here: www.likeaqueen.com.au

Best I Can

How do you navigate a healthy marriage when one of you is long-term sick?

I am so fortunate to have a man whose commitment to our marriage equals my own. But that isn’t just a lucky thing, there are never any guarantees that relationships will produce equal commitment. When we found each other, we were careful.  We talked explicitly about this issue.  For us, our previous marriages to others provided the common ground we needed for common understandings. We credit our equal commitment to having first hand understandings of the opposite.  We both had more commitment than our previous spouses.  Both of our marriages ended because the other half didn’t feel the same way about commitment.

So when we met, our shared language was all about what commitment really meant. To us. Did we share the same ideas as each other?  We knew we couldn’t proceed any other way.  And we found we did. But it was touch and go as to whether we would even get married.  It had seemed to us that marriage is nothing to do with the paperwork.  Broken hearts and other people’s choices had shown us just how easily you can dissolve that legal agreement.  For us, marriage was not to do with the paper at all.  Our marriage began when we moved in together.  It was sealed when our baby girl was born, and ratified when our son arrived.   So when sickness moved in, we were already pulling together; equally yoked to the beautiful burden of being a family.

My hubster is an honest fella.  He told me once that if he had known what was ahead of us, he wouldn’t have embarked on the relationship. In truth, if I had known I wouldn’t have wanted him to, either. Who would ever choose it? Who would ever want it for their partner?  For themselves?  Neither of us.  But now, he often reassures me that he’s staying. He chooses to stay committed to me, to our family. He says, in his quiet way, “I’m not going anywhere”.  And I know that he means it.  And I have agonised about whether or not I should leave him. Set him free and let him have a different life. He tells me he would be miserable without me and I know that it is mutual.  We’re a set now. I can’t pull my weight physically, financially and sometimes not even emotionally. But when it comes to commitment, we are equal. And that is the forward momentum our marriage needs.

A few years ago when we were beginning to struggle with my lessening ability to do things around the place, we had an argument. It was a big blow up.  A big release. And I realised that we needed to make another commitment to each other, so that we would know at all times we could rely on each other. We promised that we would always do our best. That is a different thing for both of us, but equal effort.  If there was something I could do, I would do it. If there was anything that was within my scope of ability, I would do it. And I have. He has too. It’s actually a brilliant rule for life.  I think, before we made that promise, he was afraid that I would sink into a chronic illness malaise and do less and less and less.  Not from lack of ability, but from lack of will.

what do you see inside my heart_i’m good

And so that is how we navigate marriage with one of us sick. We both commit equally to the marriage and we both commit equally to doing everything we can, our best, to make it work.

How do you manage your relationship in the context of your illness?
I’d love to hear your thoughts.
Have a listen to this stunning song by Priscilla Ahn.  Oh, that voice!

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.

www.rachelfaithcox.com(11)

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 Dysautonomia Divide

Relationships are an emotional engineering feat. There’s communication, so easy to get wrong, a thoughtless word can drive a canyon between two people. There’s the non verbal stuff, body language, expressions, eye contact (or lack of it).  There’s building intimacy and trust, or letting that slide.  Another great divide.

There are so many unintentional ways we can trip our relationships up.  My primary relationship is with a man, so we have gender difference warping our perspectives and carving new terrain for intrepid exploration.  He’s direct.  I’m sensitive.  What a winning combination. Not.

Sometimes I’m tired of strapping on the explorer kit and mapping the divide.  I get frustrated and fed up with the effort it takes to make it all work. It’s not easy maintaining a healthy relationship.  Is it worth it?  Absolutely.  But when I am scaling the sheer slick rock face of another misunderstanding, I think how nice it would be if we could cut to the chase and mind meld.

A little discussion was had this morning about Zed’s school concert.
“I don’t think I can go this time, honey” I said.  I knew it the moment I woke.  It is a fact of Dysautonomia that I miss out on many of the things that really matter to me as a Mum.  That means my kids miss out too.
(sigh) “Is this how it is for single parent families?” he thought out loud.
Then: (another sigh) “We ARE a single parent family.”

Ouch.

He left the room and went on to the next thing before he could see my eyes fill with tears.  My face turned toward the window.  I stared out at the grey day outside. My thoughts weren’t very pretty in that moment. I thought about what I must be to him. He doesn’t know how it feels to be inside this body.  He sees, this lump in the bed. This drain on his energy and patience. The not-so-silent partner, making my demands but not able to support him every time he needs it. I thought then about how unattractive I must be, this lumpy useless person I have become. Often so lost in my own health struggle, there is little left to give.

And then, I got really angry. I assessed who I am as a parent.  What I offer my kids in spite of my compromised abilities. I thought about all the things I do manage to get to, the smile-though-the-small-talk just for the chance to see my kids do something at school. The meals I cook, gripping on to the bench and willing myself through to the finished stage. I thought about sitting up at the bench to pre-wrap sandwiches and lunchbox snacks, long after my best-before had been and gone.  About morning cuddles on my bed with my babies, good long deep-and-meaningfuls. I thought about all the little bits of evidence that I am doing my best, despite Dysautonomia.  I am still parenting.  I whipped all that up into a whirlwind of objection.

And I told him how much it hurt to hear him suggest he parents on his own.
He was exasperated.  “That’s not how I meant it!  Why can’t you take it the way it was intended?”
And again, we are surveying the divide.  We decide we can, with some teamwork, breach the gap.

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These discussions aren’t uncommon for us. Relationships are hard work.  Once our bridge was built, we took a moment to discuss the difficulty of relationships in the context of chronic illness.  I asked if I could write about our morning argument and he agreed. I asked him what the worst part of our marriage is for him. If you too are living with chronic illness, you know all too well what the perspective of the sick person is. Here are his reflections from the bloke point of view, the other side of the dysautonomia divide.

“One of the hardest things to cope with is the inconsistency around the margins. I can never predict if you’ll be able to help or be of no help, I have to be able to roll with that. Even when I’m exhausted from a big day.

I carry a lot of guilt towards the kids, I seem to spend so much time doing necessary stuff around the house instead of hanging out with them or doing fun stuff.

I have to watch myself.  It is easy to compare what would’ve been with the way it is. That can be really depressing.  It’s best if I don’t compare.  I feel sad about what the kids are missing out on by not having an active mum. I try not to think about what I am missing out on.

I am balancing the challenge of work, sick wife, kids. If I need to do more at home, that’s less time working and earning.  There’s a knock on effect. That doesn’t leave me much mental space. I grind through every day trying to be optimistic. But it’s not easy.  Sometimes I have to go and smash zombies with my cricket bat*”

“So, why do you think our marriage still works?” I asked.

“We love each other, we’re friends, we’re supportive and we don’t let our differences fester. We make ourselves deal with it. Generally we dovetail really well.  We are tolerant of each other.  We respect and trust each other.  We believe that the other has our best interests at heart.  So there is room to argue and get over it.

Also, we’re committed to our future; we’re both working really hard towards it.  I work hard to earn the money and keep the family going, you work hard to find a solution to the health situation. We’re both pulling in the same direction.


It’s like Jack Reacher said in the last Lee Child novel. ‘You have to expect the best and plan for the worst’. I’ve seen you through so many dips. We have always come out the other side at some point. Also, I’m optimistic about recent treatment possibilities.  There are lots of arrows pointing in the same direction. Is that wishful thinking?  That’s what optimism is.

It’s like when Team New Zealand were racing in the America’s Cup. Every time you lose a race it dents your confidence.  But you still have team spirit. You still believe it’s possible. We are a team.”

* don’t worry, it’s a computer game.
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Does your relationship suffer because one of you is ill?
What do you do to keep it together?
How do you bridge the divide?