At the end of the end.

I had a chat with my son yesterday, about responsibility and growing up. About how as he gets older his chore list will inevitably grow. I explained that it’s time to begin carrying his own weight more rather than expecting to have everything done for him. His chores aren’t very onerous.  He’s been sick and can’t do as much as a ten year old should.  But I am a big believer in doing as much as we can, no matter how we feel. It’s better for the mind, in the end. Even when it is, so hard. His beautiful eyes welled up and it took me by surprise.
“Why are you sad, little guy?”
“I miss being little,” he said. He crawled up into my lap and let the big tears roll down his cheeks. Mourning the end of babyhood. I confess, I could fully empathise. I often wish I could go back in time and be in my mother’s arms, cradled and cushioned from the big wide world.

Last week one of the mothers from school died in a motorbike accident. Her name was Nikki. At her funeral, the people close to her stood and spoke; so bravely in the face of their grief, about who she was, about how it felt to be without her. She had three children, the youngest was born on the same day as my son.  Her son and middle daughter both went through the junior school years with my two.

My most vivid memory of her is the time she hosted our Year Group party at her house. She opened the front door in a floor length emerald green silk dress. She was stunning.  The sight of her long, willowy form, the wow factor of her gregarious personality and beauty.  It was both intimidating and impressive. It’s hard to comprehend that she is not here anymore.

The tragedy brought into sharp focus the gift that each day truly is.  I think this truth is always close to my consciousness, yet still, it slips away sometimes. I forget the inevitable and get bogged down with all the daily tasks and endless aggravations of life. I lose sight of how lucky I am to be alive, to be able to have conversations with my babies as they take on the incremental approximations of their adult selves. To hold them when they cry and raise the bar for them when they need to push a bit more. I’m here, parenting and loving. That’s no small thing at all. But oh, my mind has so many questions!

I’ve been wondering, why. Why we strive for things. I don’t know why I tried so hard to put my kids through expensive schools, now they are happy in our local schools. I don’t know why I care so much about the state of the carpet that I won’t invite people over. I don’t know why I strive to do it all.. all. of. the. time. It makes me grumpy and listless and down.  I wonder why I feel like a failure if I’m not groomed, cheerful and deeply fulfilled as I go about my many thankless tasks, like so many other women seem to be. I wonder if I should be. I wonder what it is all for. I wonder if it will all be worth it in the end.

Do you wonder about that?
Here we are, alive and able to love.  We breathe, our hearts pump the baseline rhythm, our feet syncopating a melody we never pause to hear. We are so consumed with the minutae of our micro-worlds.  The planet turns, ice caps melt, species become extinct, wars burn through vast swathes of humanity, mothers die, stars are born, lava erupts from our molten core. Rainbows arch across the sky above the school gates.  And on goes another load of washing.

I’m going to leave here a beautiful song, as a tribute to all the people who have left us, we hope, for a ‘better place’. My friend played it for me last Friday. She’d been to Paul McCartney’s recent concert and she knew I would love this song as much as she does.  When Nikki died, her family and friends pulled together a truly beautiful funeral service. At the end of the end there was some kind of tragic peace, some sort of beauty and grace as they faced their final farewell. I wish all my wondering could help me comprehend why things like this happen.  There is too much sadness in the world.  I hope he is right and at the end of the end, there is no need to be sad.

I don’t understand anything.

The Real Prize Giving

The tears have been near the surface for me again today. It’s always a bad time of year for me but just recently parenting life has taken on a new bitter-sweetness.

I’ve been watching other people’s children on facebook, kicking goals, making ground, celebrating life. Prizegivings, certificates, milestones.  Their parents radiate pride as they share footage and photos and so they should. I click away, liking, loving and wowing all the posts. I am all for recognition and reward; praise is the foundation of solid self esteem. And what they’ve been doing is so impressive! The highlight reels I see of other people’s children are in the particular vernacular of the winner:  best, excellence, outstanding, achievement. Their joys and successes follow the same arc as one other, soaring to the top of their worlds, what ever those worlds may be.

With each of those social media posts, I think of the other parents. Parents like me, whose children march to the beat of a different drum. Their own rhythm, slightly out of step with the norm but no less laudable. I think of all the myriad of other parents whose kids are not at the tip of the standard bell curve. I wonder why we don’t tend to post as much about our children, about their successes and achievements. Do we worry about the opinions of the traditional ‘winners’? Do we feel embarassed? I hope not. It got me thinking about what I really value in what my kid’s have done this year.  None of it has been recognised by either of their schools; we wagged both Prizegivings this year. No one stood in assembly to acknowledge them.  It’s a shame, because they both deserve it.

If I were the leaders in their schools, I would have noticed these things about my kids.  I would have recognised their brilliance, perhaps. But I’m just their mum, so I will shout it to the blogosphere instead.  Let’s start with Bee.

She has grown to the staggering height of 6’1 this year. That’s a long way up for a 12 year old. And a lot of exhausting growing for her body to do. A few times, the school nurse has called me and expressed her concern about Bee’s rate of growth. We spoke to an endocrinologist, she’s fine. She’s just a tall girl. Willowy and beautiful and still with that gangly pre-teen kind of way of loping about, completely unaware of the head-turning going on around her.

Early in the year, Bee lost her Nanna, followed swiftly by the loss of her beloved pony.  These twin sadnesses were felt keenly and can still knock the wind out of her sails. Emotion runs high for her as the hormones storm through. She is changing and learning the harsh realities of life and death as her eyes open up to the adult world.

For the first time since starting school, she built a new kind of friendship group. Her assorted friends gathered together based on mutual respect and kindness; turning away from the ‘cool’ girls who would turn on them and try to make them feel bad.  How proud I am that she has learned how to identify kindred souls and nurture friendships with them. This is a massive life skill and she aced it. In addition, she has begun thinking about the bigger issues in our global community, often beginning conversations around our dinner table about topics like poverty, gender equality, international politics and ethics.

And yet, through all of this massive amount of change, Bee has retained the sweet childlike loveliness that really typifies her nature. She is still the animal loving, cheery, kindhearted, tea-making, tomato loving darling she has always been. She still squeals with excitement about things and says inappropriate things at inopportune times (ha!  wonder where she gets that from!)  And I feel positive about braving the hormonal storms with her in the year ahead. She’s amazing and I am so proud of her.  At my prize giving, I would award her with a ‘Quiet Wisdom’ Award.  She’s faced the hard stuff this year and made it through with insight and sensitivity.  I rate this chick. I hope that when she’s older she will choose to be my friend, I’d really like a friend like her.

Zed has had a tough year too. It’s the fifth year running that he has been ostracised by a big portion of the boys in his year. He’s been tormented about his looks, told he should go kill himself, been heckled for being sensitive and different. In the bigger context, he’s been dealing with a diagnosis of Chronic Fatigue Syndrome and has been so tired that most mornings I have had to physically dress him. This bone sapping fatigue meant he had a massive struggle at school on the days he made it there. Even when he was able to spend energy, he has had to pay for it dearly. Sometimes, he would crawl into the bushes at lunchtime to sleep and get away from the teasing. When he was discovered, the mean kids just turned even that into a new thing to give him grief about.

He’s been physically bullied too. Zed achieved his karate black belt this year, and although I am proud of that, I am prouder that he didn’t use it to hit back at his tormentors. He could have and neither his Dad or I would have blamed him. But he took the pain they inflicted and restrained himself, crying only after he got home; all of the emotion and difficulty of each day released in a tidal wave of grief and confusion.

He’s a brilliant kid.  Funny, soft-hearted, quirky in the most entertaining way. He can be aggravating too, but if you explain it, he is quick to stop. He’s not the kind of boy that is considered cool by those with social cred at his school, and so he and his heart have been battered and bruised. He has borne all of these things with dignity and determination. At my Prizegiving, I would award him with “Most Stoic in the Face of Significant Difficulties”. Because, in spite of it all, Zed was a dedicated team member at basketball, an enthusiastic student of karate, a ceaseless seeker of friendship. He dug deep during his first ever exams and tried his best. I am proud of my boy.  At ten, he still can just manage to curl his long limbed frame up into my lap and lay his head on my shoulder. He is compassionate and caring, hilarious and interesting. He deserves so many accolades this year; he’s a dude.

Both of our kids are starting at new schools in the new year. I don’t know if their new schools will see them for who they are but I hope with all my vulnerable mother heart that they do. Thing is, I am having a prize giving, but the prize is my children. I’m giving them into the care of their new schools, desperately hoping they will be valued as they should.

Perhaps your kids are like mine. Precious, unique and outside of the norm.  I hope that you and they take a moment to appreciate what makes them amazing during this season of awards. And for all those parents out there without certificates to share on social media, please know that I see you and your beautiful children, shining on regardless.

“Success is not achieved by winning all the time.
Real success comes when we rise after we fall.”

Muhammed Ali

 

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.

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 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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We Met On the Internet

Once upon a time, meeting this way was considered scandalous, even dangerous!  But, just as the early days of internet dating required certain intrepid desperation; my own desperation sent me online in search of people like me. It is so easy to feel isolated when you have an odd illness.  And when the illness carries on for years that loneliness looks for others.  Here is how I found the rare birds in New Zealand who are like me…

When I was first diagnosed, Dysautonomia is not the name I was given for what was wrong with me. Back then, I was mostly having problems with dizziness and fainting, things were to progress but I didn’t know that then.  Investigations showed that my heart was stopping, so they put in a pacemaker.  I was told there were very few people with my particular problem in New Zealand.  When I asked if I could get in contact with the ‘very few’ I was told that privacy laws prevented me from having their contact details. Which is perfectly logical, but not helpful.  It sounded like a job for the internet.

Let me explain a little first, about my odd condition. Dysautonomia is an umbrella term used to describe several different medical conditions  which all feature autonomic nervous system dysfunction.  The autonomic nervous system controls the ‘automatic’ functions of the body that we don’t think about.  Pupil constriction, tears, saliva, heart rate, blood pressure, digestion, bladder and bowel function, temperature regulation and the body’s ability to compensate for changes in posture.  Patients often feel dizzy and nauseous. They may not sweat properly, be able to pee and poop normally. Headaches can be a feature.  Fast and slow heart rates, labile blood pressure. They can experience brain fog and horrible pain related to various dysfunctional aspects of their autonomic function.  All the while looking perfectly normal.

Our bodies themselves are usually structurally fine; it is the dysfunctional nerve conduction that creates our problems. Our bloodwork and other tests can be fine. Yet we are not. Dysautonomia is often referred to as an ‘Invisible’ illness because it is hard to see the debilitating effects by looking at a person’s appearance.  Spend some time in the company of someone with Dysautonomia and you will see that it isn’t really invisible at all.  Our quality of life has been compared in the literature to patients with congestive heart failure. Functional disability is often a feature of patient’s experience. In short, Dysautonomia is really hard to diagnose and really hard to live with.  We all wish that more people understood that. We run marathons every day, just doing simple daily tasks.   And before we even got to this stage, we ran the marathon of searching for answers to our medical oddities.

Patients with Dysautonomia typically wait years for diagnosis, often suffering wrong diagnoses and medications along the way.

In my early search to understand more about my condition, treatment options and prognosis, I looked for medical information and support groups online.  Even my doctors couldn’t help me with more information. I was desperate to know more, to connect with others like me. People choose whether they want to be online, so my chances of meeting others like me who would want to meet in person was much better. To start with, the groups were all American. Then, occasionally a new Australian member would appear.  I posted messages, I scoured the boards, but New Zealanders were nowhere to be found.  Years passed and I gave up looking online for people like me.  It was too disheartening.

Then, a neurologist explained that I had Pandysautonomia.  It is a rarer, widespread, progressive form of Dysautonomia, the cause is still unknown.  There is no cure without a cause so the symptoms are treated as they occur.  The medication and treatment regime can be almost as debilitating as the condition itself. Armed with a new name for what was wrong with me, I hit the internet again.  The neurologist said he knew of one other patient like me, in Wellington. I was determined to find her.

How much the internet had sprouted in the time I had been absent! There was a new, large not-for-profit organisation in the States, raising  awareness, funding research and hosting conferences for people with Autonomic Dysfunction.  They pointed me in the direction of a popular Australian Dysautonomia blogger.  She pointed me in the direction of and Australian/New Zealand support group.  And there, at last, I found my ‘birds of a feather’.

There were already Aucklanders there!  And the girl I had heard about from Wellington! I was beyond surprised!  I cried. As nice as it is to wave across the digital divide to one another, it’s all kinds of wonderful to meet up.  I’ll never forget our first time. The relief of being around people who really got it! I talked so fast I could barely get a breath in. We laughed. We shared stories of doctors, discussed the differences in our treatment plans. We call ourselves ‘The Horizontalists’, because our meetings are usually in a park, lying on blankets and pillows. We commiserated with each other and our eye contact spoke volumes of unsaid words, unshed tears.  We continue to meet, our group has swollen in recent months as new patients are diagnosed and find us online.

Our kiwi group is 16 strong. Kathleen, Janette, Renee, Zen, Kirsty, Carolyn, Andrea, Sarah, Hailee, Rosie, Felicia, Hayley, Sarah, Rebecca, Rachel and little Emi (see a pattern there? 80% of people diagnosed with Dysautonomia are female). If there are more of you out there, shout out!  We’d love to find you.

Every person in that group is a crucial part of their family and friendship groups; each of them languishing with a diagnosis that lacks adequate research or effective treatment. Awareness is slowly increasing in the medical community, so diagnosis is more common now.  The thing is, the many forms of Dysautonomia is not as rare as you would think (more than 11 million people worldwide), but they are rarely diagnosed in New Zealand.  Some of the forms of Dysautonomia are Postural Orthostatic Tachycardia Syndrome, Multiple System Atrophy, Pure Autonomic Failure, Autoimmune Autonomic Ganglionopathy, Pandysautonomia & Familial Dysautonomia.

Finding others like me has brought me a community and comfort that is unparalleled.  But there is still so much to do. October is International Dysautonomia Awareness Month. It’s a tough gig pushing awareness when our numbers are so few.  We are generally too sick to do all the usual methods for getting the word out there.  But we are driven. We know that out there are more people like us, and people with autonomic problems which have yet to be diagnosed.  People struggling through each day, invisible in their communities, simply because no one knows about what they are going through. We really want to change that. Our community of patients might be small, but so is New Zealand.  We know our wider community will open their minds and hearts to people with invisible illness, as soon as they know we exist.

Dysautonomia = Dys (dysfunction) Autonomia (of the autonomic nervous system).
Dysautonomiacs = Regular people afflicted with this debilitating, sometimes invisible, chronic dysfunction of the autonomic nervous system.

Good sorts to meet on the internet.  🙂

 

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