Shipwrecked

There is a specific kind of guilt that can plague survivors who got through something life threatening and come out the other side. Maybe it was an accident, trauma, war, hostage situation, cancer, domestic violence, child abuse, hurt. The guilt swoops in once they realise that they survived but others did not. So the question ‘why me?’  ghosts through their minds, shining spotlights onto every part of them that is not worthy of the gift of survival.

I do not deserve this. Everyone does. So why did it happen for me and not for them? How can I make sense of it? What hierarchy of soul assets could ever possibly qualify me to deserve reprieve when others get none?  None of what I have within myself is superior to any other human. Is it all pure chance? Luck? Universal benefaction? Godly miracle? Alignment of planetary bodies? Karma?

 

picture of an oil painting by John William Waterhouse (1916) of a redheaded girl looking out to sea at a chip being wrecked on the rocks.
Oil Painting by John William Waterhouse 1916 “Miranda -The Tempest”

Why me?

Why not me..? Answers back. That small audacious whisper. I hush it back into it’s corner. How dare it speak up? The mirror in which I examine my value magnifies my insecurities.

It was easier to wonder why not me when I was sick. Worthier. It was easier to push, using all the survival drive my physiology could muster. Why not me? I tried and sought and searched and strived. I wanted to survive. And now that I am thriving?  I wonder if it is a monumental case of mistaken identity, was it meant for me?  I fear that I cannot do it justice. I exhaust myself with my desperate need to never take anything for granted; gripping on to the epiphanies of illness.  I prostrate myself into works of compensation, trying to redress the balance that tipped things into despair and took so much from the people I love. I burn the energy that has been gifted to me on the backlog of yearnings. The things I missed. The things I couldn’t be. The person I think I could be but maybe, will not.

I just want you to know, you who continue to suffer, I want you to know that I have not simply sailed off into the sunset. I struggle to write for you because I feel like my remission has given me something you don’t have, and that feels unfair, like a betrayal. I wonder if you find my words aggravating, or boastful, a reminder of all that you cannot do. Those among you that are close to me have assured me that my story brings you hope, but I worry that it also brings you pain. Because, see? There I go again. Doing the things you can’t do, living the life that eludes you. And I do want to live that life, because it is mine.  I even want to go sunset sailing, sometimes, though I have no sea faring vessel. I want to run away; I want to stay.

One of my favourite poems is by Christina Rosetti. There is a line that expresses the way this feels

“When I half turn to go… yet turning, stay.” 

I have never been a goodbye girl. I won’t do it. So I remain here, caught on the cusp of sick and well. My hand reaching out across the divide between our experiences, the distance between our hands growing every day.  I think I have that hated thing called ‘ableism’. Because I do believe, with all my heart, that there is a massive difference between being well and being disabled through illness. And I think it is better to be well.  I think most of you with Dysautonomias think that way too, but dwelling on that is too painful. When ‘well’ is out of reach, people make do, we find joy, we build meaning where we are. It is a triumph of psychology. By far, the hardest thing I have ever done, was staying afloat through all those years. I was not always successful. When I sank under, you lifted me.

And here I am, washed ashore; not drowned. Dry, standing at the edge of continental opportunity. I have caught my breath. But I stare back out to sea wondering if you are treading water in shark infested waters. Willing you to keep your heads above water, to find the flank of our ship wreck; to hang on. My soul flies across the deep but the winds and tides can’t hear me. I am impotent to ease your suffering. And I am sorry.

So sorry.

Er, right.

I had a lengthy debate once, with the hubster and one of his friends.  We were talking about ‘rights’.

I said there was no such thing, that human beings don’t have any rights at all.  That rights are a construct we have built to make us feel that things are fairer. But they are not fair. Ask the child suffering from malnourishment, whose parents have both died of AIDS, if they understand their rights and they will look at you with blank confusion. Yet here in the West, we make sure everyone in the hospital gets a brochure so they know what their rights are. We protest against the inequities of life in an attempt to right the balance.  We talk about right to life, and right to shelter.  We are deeply offended when our rights are breached. Because they are our rightful expectation, right?  Hubster’s mate was outraged by my perspective. He found it ridiculous, which didn’t offend me, because I’m not that righteous about my view on rights. I’d love to know your opinion on the matter. Here’s mine, for what it’s worth.

We are all, in any given moment, subject to the kinds of events that render the socio-political construct of ‘rights’ useless. What rights did the victims of the Beirut bombings get to exercise last week?  The Chinese flood victims? People struck down with illnesses? Mothers who can’t conceive? Children born drug addicted? Victims of sexual abuse? Are the rights we cling to so idealistically, only for the lucky people?  Is our attachment to our ‘rights’ what causes us pain when our circumstances ignore them?

I listened to an interview with Dan Carter on Newstalk ZB the other day. The sportscaster was asking him about his stunning final game with the All Blacks in this year’s World Cup. He made this comment:
“Well, Dan, you deserve to go out on a high after the stellar career you’ve had…”
Dan interrupted him: “-Um, no. It doesn’t work like that.  People say I deserve this or that, but the truth is, sport doesn’t care if it’s your last game.  Your opposition don’t decide to be kind so you can go out on a high. Injuries happen, losses happen.  It’s just part of the territory.  I keep smiling about that game because it could have been so different.” I am paraphrasing, but that was the gist.

It struck a chord with me, because I’ve noticed it myself a lot lately.  When people hear about what has been happening with my health, and with my new work as a plus size model, the most common reaction is “Oh Rach, that’s great!  You deserve it after all you’ve been through!”  The human race loves fairness, doesn’t it?  We love it when hardship is repaid with success. We love it when difficulty is answered with a time of ease. It suits our inner justice-o-meters.

But I don’t deserve wellness any more than the next person.  It’s a gift. For every one of me, there are thousands of people suffering with Dysautonomia who are struggling every. single. moment. of. every. single. day.  They’re not less deserving. It’s not like the universe has weighed us on a massive scale and decided that I get to experience feeling well because I deserve it more than them. Just like being a western middle class citizen of the world isn’t an inalienable sign that I am entitled to have ‘rights’.  Some things, some life things, are just pure chance, pure kismet, absolute, joyous, happy luck. A gift.  At this time in history, in this body I got, I get to live a life full of benefits. I’m not more worthy.

I’m fortunate.

So my question is, if you have also been gifted with health, either just recently, or maybe you’ve been lucky enough to have it your whole life… have you been making the most of it?  Are you throwing yourself into things and enjoying the gift of chance that enables you to live with freedom?  Don’t waste it. Spend it well.  Do it for all the people out there who can’t.
Take the chances you have been given.
Be bold. Step up.  Step forward.  Speak out.  Stand tall.

XXX

This is a picture of the most stunning, hand-lettered poster my friend Tracey Hassell sent me from Perth.  She asked me for my favourite quote, and then this appeared in the mail. I love this quote so much, because for me it is a reminder of my purpose. I will never forget the lessons I have learned over seven years of illness. I will never forget that people are still suffering while I am not. And that is a greater gift than feeling well. I feel deeply privileged to have walked that road alongside some very beautiful souls.  There’s something in experiencing all that which feels more right than most things.  I get it. I have no rights. I am alive, I feel well.  I am stupendously fortunate.

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A Little Like Hope

There are patterns that shape you.  Experiences that make you who you are.

Being sick for the last six years has fundamentally shifted my expectations of life. After all this time, I’ve been in a pattern of expecting things to get worse. I expect things to be hard. I expect side-swipes and surprises and I expect to find ways to cope with all that. But I never expect things to get better. Being optimistic about my health is something I have avoided for so long. All the science, all the ways of being that my body has trained me to accept.  All of these things have shaped my thinking. Being positive about the future of my illness always felt like a redundant pastime. A fruitless and futile exercise in wishful thinking.

So instead I have been resolute. I have tackled my illness like a maze. I have tried to be systematic in my research; I have sought the counsel of wiser science brains than my own. I have searched and pushed and applied myself to finding solutions. And that has been a wonderful focus for my mental energies. It’s less of a dare to the universe than positive thinking or pollyanna prayers. It has seemed logical and appropriate.  Define the problem, seek a solution.

And despite my beliefs that only a logical solution could fix my problem, just recently, the problem has been evaporating. Like the puddles leftover from our long, wet winter. The sun is beating down and shrinking the periphery. Rendering hard clay from the mud and quagmire. Setting my feet on solid ground. I’m feeling well. I’m exercising. Last Thursday I did pilates and followed it up with a walk in the country with my girls, Bee and Lulu.  I walked along the road and back again!  If you have been following this blog, you will know how extraordinary that really is. Where before even one of those activities would have put me back in bed for a few days, I have backed it up with more activity.

I walked! With my girls Bee and Lulu. There,

This weekend I’m in town with my hubster.  The last time we did this was a year ago. And it was so very different. I have no cane. Instead of sitting at the table, wondering if I can stay upright in the seat for the duration of dinner, I sat comfortably and talked with him there for three hours!  We enjoyed a six course degustation menu and a conversation that spanned worlds and made us laugh like we used to. We celebrated. Ten years of marriage. Parenthood. And something we’ve been a bit worried about celebrating. We celebrated my wellness. We’ve been so afraid that to acknowledge how well I am doing would tempt fate. So we haven’t. But last night we talked about it. We exhaled. We let ourselves enjoy this beautiful, fragile thing.

Want to know what feeling well is like?

It feels a little like hope.

I walked! With my girls Bee and Lulu. There,(1)

Anna Kennedy: Nowhere Land

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

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He's a real nowhere mansitting in his

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But how does that song end again?

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

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

Meet My Peeps

Hello!

In the last six years I have met some incredible people.  Connecting online with others who have chronic illness has been one of the greatest supports and encouragements of my journey.

For the whole of 2015 I will be deeply immersed in the Be.Leadership Programme.  And that means, a bit less time for blogging.  I have homework!  And readings! And deep thoughts to “thunk” (!)  I will still be here, doing what I do.  I just might not be doing it quite as frequently.  According to the calculator, I’ve been averaging four posts a week since I started blogging in May last year. That is a tough rate to match now that I am a bit busier.  But also, I feel like it’s a great opportunity to broaden the scope of the Chronic-ills of Rach.

I have called on ‘My People’ to see if anyone would like to share their story in this space.  I’m calling it the ‘Meet my Peeps Guest Series’.  And I am so chuffed that you will get to read the stories of some of the people so dear to my heart.  Each time I post from them, I will introduce them, tell you how we met and then you’ll hear their stories.  There is a diverse range of guests, some, like me, have a form of Dysautonomia, but we’ll be hearing from people with other chronic conditions too.  People with Invisible Illness, invisible disabilities and also people with conditions that are not invisible. They’ll be sharing with you their perspectives about getting through, getting on, and getting over the challenges they face. Welcome to the series, I can’t wait to see your responses to their heartfelt words.

Meet My Peeps

Big love to you from me, remember, I’m still here!  In between times, I’m just getting a little help from my friends. 🙂

Life Lessons from Lulu

It’s been a week since Lulu came into our family.  She is a horse.  She is the horse I said we would never own, the horse that was way out of our budget, the horse that was a dream only and very unlikely to ever come true.  Until the phone call came saying that she existed, she was available.  Our daughter’s riding coach, Alex urged us to just do it.

But I’m not well enough to help!   I thought.
“She’s a beautiful pony with an excellent background”, said Alex. “She’d be great for Bee”.  I figure when an experienced horsewoman tells you that, it is good to listen.

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We agonised for half a day.  Thinking about our budget, our girl, how hard she has been working towards her goals as a rider.  How hard she has been working in general.  When finally, the budget was worked out and a decision was made, I called Alex.  “YES!” I squealed, barely understanding the magnitude of that one small word.   She called back with what I felt sure would be confirmation that Lulu was ours.  But the news was far more devastating.

“She was sold half an hour before we called them back”, Alex groaned.  The bottom dropped out of the cloud of happiness I was perched on. I decided it mustn’t be the right thing.  Decided the timing must be wrong.  Decided it was a sign we should have said, no.  Who are we, anyway, to even think we could be part of the horsey world?  Our daughter, maybe, but us?  We’re clueless!  My insecurities herded all my hopes back up into a tight little knot and locked them away again.

Two weeks later, Alex texted.
“Lulu might still be ours, I’ll keep you posted”.  And then, all of a sudden, she was.  Her new owner sold her to us.  Alex had called and made a case; the new owners must have had a soft spot, because they agreed to let us have her. She was ours. The money changed hands.  The pony was on her way. The plans for the big surprise were underway.  Somewhere deep inside of me, my own little girl heart swelled up with joy.  Lulu was already wound tightly with my heartstrings.  My buried hopes began to creep out of their hiding place.

When my daughter met her pony for the first time, she was rendered speechless.  Not a sound came out.  She walked over to her, took hold of the lead rope and gazed up into that beautiful pony’s big brown eyes.  She didn’t even ask her name, just stood in quiet awe, looking at that big grey girl.  Her own horse. When she had gathered herself.  She croaked out ‘thank you’s, to Alex and to us.  It would be half an hour before she could tear herself away and wrap her arms around us.  Snuggled into her Dad’s chest, all she could breathe was “I have my own PONY”.  We let our tears gather across her warm blonde head.  Her dreams, our dreams; so closely entwined.

Photographed by Beverley Couper

Lulu is cared for by Alex at her stables.  Bee heads out there three times a week to exercise, wash, groom and feed her.  I was so worried that my illness would make supporting Bee with her pony, impossible. But it isn’t. It’s just like anything else.  I have to pace, I have to prepare. And then, when we are there together, I have to push through. But the payback from that beautiful pony!  It’s worth every effort.  She is the relief of joy when it all seems too bleak.  She is a velvety muzzle and a kind eye. A warm reassuring flank.  A wise girl, teaching my girl, and I, lessons we will never forget.   She brings much more than she takes. We did the right thing. Here is what she taught me today, our first day out with her on our own.

Hold On
Lulu is a big pony. I am a big girl, and my girl Bee is all wiry muscle.  But the strength of one horse outflanks both of us easily.  In her paddock, Lulu was accompanied by four really big sporthorses. Tall, elegant horses with lots of muscle.  After Bee slipped the lead rope through the ring on Lulu’s collar, they came galloping up towards us in a show of frightening intimidation. They all converged on the gate, and Lulu, at once.  The horses began to circle and agitate, Lulu was feeling spooked as they pushed her into the corner.  My mother-vision saw trouble (you know, that fast forward reel of all the things that could go wrong? Those horrifying action shots all mothers watch in their mind’s eye?) ….  Bee let the lead rope out, but held it firm, taking quietly to Lulu.  The horses thought better of staying, turned and took off again.  Lulu remained. If Bee hadn’t held on, she’d have been running the length of that paddock playing chasey.  Hold on.  That’s what I learned from Lulu in that moment.  It might seem like the circumstances are stacked against you. It might seem like nothing is going to turn out right. Like the scary dangers, way bigger than your knowledge of things, might all come to fruition.  But hold on.  Hold on to your hopes for wellness, hold on to your hope for treatment, for answers, for more medical research.  Then, when the scary stuff abates, you’ll be hitched to your dream and ready to ride.

Photographed by Beverley Couper

Look where you want to go.
We were bringing Lulu up from a lush grassy paddock where she had been holidaying with her horse buddy Spiderwings.  She didn’t want to leave all that delicious grass behind, certainly not without any of the others.  I guess if I was a horse, I would have preferred to stay there with my buddy, too!  Leading a reluctant horse along a country path is impossible if her will is stronger than yours.  Bee and I, together, struggled to take her along the path. She turned five times, pushing us away so she could head back. Eventually, Bee took hold of her lead rope with steely determination. “This. Way.” she said firmly to Lulu.  Then she lifted her gaze to where  she wanted to take her, and began to lead. Lulu followed, just like that.  Whenever Bee’s gaze wandered, Lulu would try to go back. But when she kept her eyes on her destination, Lulu let her lead.  So it got me thinking.  I know my purpose, but I can’t fulfil my purpose if I don’t have my eye on my destination. Thanks Lulu, for showing me something about how to move forward.  I’ve been floundering a bit lately, wondering if I truly do have something useful to say here on my blog. I think I do.  But I’ve been looking down, sinking in my doubts.  The only way forward is that I must lead myself, eyes up, one step in front of another, heading to where I want to be.

Photographed by Beverley Couper

Work Hard
There is much that goes into a short horse ride. There’s retrieving the horse from the paddock. Easy peasy, (huh)! There’s actually getting her from there to the stables.  Then there is tacking up.  My nine year old heaved the saddle across to the arena fence with a grin on her face.  Saddle blanket, saddle, girth strap, stirrups, bridle, reins. Check, check again. Finally, satisfied that it was all on correctly, Bee climbed up onto the mounting block and swung her leg over Lulu.  They exercised in the dusty arena, in full sun, for an hour. I watched them with wonder from the cool comfort of the car. They are new to each other, but there is something good happening between them. There is trust.  Security.  They’re taking it slow, feeling each other out.  Getting it right. Bee holds herself with greater poise, she leans in more often to murmur lovely things to her girl, Lulu. Then, when it is all over and most kids would collapse into a chair and gulp down some water, asking for food; Bee takes Lulu to the wash bay.  Can you imagine what a big job it is for a kid to wash a pony?  She does it. I ask if she wants a hand, “No mum.  I’ll do it”.  After washing, there is spongeing, taking off the excess water, making up the feed, feeding, packing up, putting the summer blanket back on, and leading back to the paddock. She eventually climbs back into the car.  She’s tired.  But her face is glowing.  I ask her how she feels, “Satisfied,” she says, “I’ve seen my girl, I’ve had a ride, she’s all tucked up.  It’s feels good”.  And I see it.  Hard work feels good.  I think about how the type of work I do has changed.  I work at words now. I smile at the thought of how satisfying that is.  Lulu, you remind me.
If I want to feel better, I need to work hard, in whatever ways I can.

Connect
Over the years, I’ve met lots of horses.  Since Bee first dragged me into the world of pony obsession, we’ve watched her infatuation with many, and I have harboured a few pony-love-flames of my own. I’ve spent time snuggling with all manner of horse personalities.  Nick, Star, Jonte, Candy, Dougall, Scooter, Mellow, EightBall, Billie, Pretty, Brio, Ace, Beau and now, Lulu. Each one of them has given me gifts when I connect with them. Solace, empathy, compassion, peace, inspiration, kindness, warmth, love.  Horses are so generous with the clueless parents of their riders.  I have been greeted with such grace and always I come away with wonder. Today, as I quietly freaked out at wilful Lulu on the country path, it occurred to me that I hadn’t even said hello to her before we wrenched her from her buddies to follow us. I hadn’t taken the time to connect.  Bee had, though. And it was Bee she followed.  Half my size and twice as compelling. I took this lesson from that moment: Take the time to connect with the people (and animals!) in your world.  You will be surprised by the gifts their presence will bring, and the things you may learn from them in the connecting.

Photographed by Beverley Couper

What a day.  What beautiful lessons to be learned.
Thanks Lulu, thanks Bee for letting me learn from your pony.

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Have you been feeling overwhelmed and afraid about the circumstances you face?
Hold on.
Have you been feeling like you will never make it to where you want to be?
Look in the direction you are going.  And lead.
Have you been floundering about how to achieve your dreams?
Work hard.
Have you been missing the beauty life holds, right there, just out of reach?
Connect.

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All the photographs in this piece, except for the first, were taken by our friend Be Couper.  You can find her work, on a range of subjects, here.

Hope Floats

_...just give hope a chance to float up.

There’s always something happening.  Something threatening to pull us under.

Sometimes it is big enough or politically scary enough to warrant getting onto our news service. Where we can watch it through our shiny big screens and then turn away, horrified.  Soundbytes of a few seconds aimed at providing the juiciest details, so that even children can grasp it all. But we can carry on breathing air, scented with the pine Christmas tree; we get up and move into another room.  Guiltily move our thumbs across to the ‘off’ button.  Get on with our pre-Christmas to do lists.

It’s overwhelming to think of the things that are always going on, somewhere in our world. When I contemplate the number of human beings that are being tortured, raped, imprisoned, separated forever from their loved ones, killed. I don’t want to stay with those thoughts.  I don’t want to consider the reality of all that bad news.  My mother heart feels it personally.  Knows, that for the people inside those news stories, it won’t finish in time for the next headline. Their stories will go on to affect them and their families for generations. It’s a big and painful reality. Small wonder we choose not to watch.  How fortunate we are that we get to choose not to, to postpone considering these harsh realities… until later, when we don’t have the small ones beside us, asking questions from those beautiful, wide-eyed faces.  Not yet.  I don’t want to explain all that to them yet.

In my own little world, I cling to the presence of a strange hope that is always there, tugging me upward.  It is such a buoyant human trait. It is an odd thing, when we are all mortal, that we have developed this protection mechanism from the brutal truth.  We are all subject to tragedy, suffering, loss.  At some point in our lives, our exemption cards will run out and we will be visited by human heartache.  It’s a guarantee. It might not reach the news. It might not be considered newsworthy. But that moment might carry the worth of our entire human experience, or those of our loved ones. In that moment when suffering comes to visit, the worthiness of our own story will be carried by us, or by our loved ones.  In the fragility of our fragment of mortality.

I am always staggered by how hope renews itself, in the face of terrible odds. I remember, that movie with Harry Connick Junior and Sandra Bullock …not the storyline, but the title… ‘Hope Floats’, it has always stayed with me, that title.  How true it is.  We can be sinking in the quagmire, far from the light, drowning in despair.  We can be pulled under by the terrible things that have been hitting the headlines.  The realities of life with a progressive illness. The sadnesses and tragedies experienced by friends in our close circles this year, and the wider circles in our community, our country, our world.  We can think about all those difficult things, and when we feel ourselves going under, we can grab hold of our flotation device and float back up to the surface.  Our lungs fill with fresh air, our faces turning to the sunlight. We can believe that it is possible, all over again.

It’s not perfect.  But sometimes I reckon hope might just be the best mechanism our human race has as we hurtle through time on this little blue planet. Hope is bigger than love, because it comes in when we love is lost to us. Hope is bigger than peace, because it makes it possible for wars to end.  Hope is bigger than understanding, because we can’t always understand why people hurt people. Why people get sick.  Why suffering happens. Hope keeps us afloat when our own humanity pulls us down into the depths. Peace, love and understanding are the tenets for a brighter future. But we will never reach them if we don’t allow ourselves to be buoyed up with hope.

Hang on to hope.  Give it a chance. Let it pull you up from the depths.

Imagine

I wonder if you could take five minutes to try something.
It’s just a short imagination exercise.

Can you imagine.._(1)

Can you imagine what it might be like, to get a terrible flu?  And how it would be if that terrible flu never, ever went away? After one week, the patience of your partner wears thin.  After all, there are kids to look after and he is working, he’s not a naturally great nurse, guys are like that… you’re sure your girlfriends will have stories to share about their men, too, when you’re better.  You’ve a job to get back to yourself, you can’t keep on waking up, saying you can’t and shutting your eyes against the day.

Then imagine that being sick carried on for a whole year.

Fifty two of those flu weeks, end on end on end. The family needs you, so even though you still feel like you felt for that first week in bed, you get up and carry on. Every time you move the dizziness sweeps over your world as your body struggles to find some equilibrium.  You are bone weary. You adapt your usual tasks so you can do them.  Sometimes you crawl. You lean against any surface you can.  You avoid bending, or standing quickly, because that might make you faint.  It beggars belief how many household tasks require bending.

You take on less hours at work, but quite frankly, your boss has had enough. You, who have always been a perfectionist, have become an unreliable employee, your sick days are mounting. You talk to them about what is going on, but the doctors haven’t been able to give you any answers.  Your boss, your colleagues, your friends and even your partner start to look at you as if you might be making it all up.  Surely if something was really wrong they’d know what was up with you?  Maybe you are not trying to get better?  Maybe you are psychologically broken, somehow? I mean, it must all be in your head, you look perfectly normal. You doubt yourself. You quit your job.  Your relationship is under pressure. The kids are acting out because you are struggling to do your parenting job too. The years stretch out. One, two, three.

You’ve been in and out of hospital more times than you can count.  It is now clear you are not manufacturing the things that are going wrong with your body.  They put in a pacemaker to make sure your heart keeps beating. But there is an endless litany of other things wrong, too.  You are afraid of dying, because sometimes, it feels like you are. There are moments in the emergency department when everyone is buzzing around you and there is nothing you can do but shrink your self into a tiny observational dot on the wall. It is too scary. Your partner doesn’t even come with you to the emergency department anymore, it’s better for the kids. You taxi in to emergency, always with a bag.  You know you will be admitted.  You don’t know for how long. In your many visits to the hospital a picture is slowly beginning to emerge. You start to research the things that are happening to your body.  Something keeps coming up on Google.  The Autonomic Nervous System.  You ask about it next time you are in.  Chins are scratched, thoughtful silences. Referrals.  Specialists.  A diagnosis.

You’ve been sick now for four years.  208 of those flu weeks, end on end.

Can you imagine what it might feel like to get a diagnosis?  You are relieved, so thankful to have a way to explain what is wrong with you.  Even to yourself.  There is a thing that you have!  Now that they know, they’ll be able to fix it, right?

And can you just imagine your distress when you discover that the diagnosis isn’t the end of the struggle… just the beginning?  You’ve been lurching through a long distance marathon with the flu, you are exhausted, always waiting for the reprieve, the finish line, the bit where you get to stop and recover. They tell you that what you have is rare and it will be hard to find someone here who understands it, let alone who has ideas for treatment.  You research more.  You join online forums, patient groups, you read everything you can. You print out and highlight medical journals and read them, searching terms on the internet, desperate to find a way out of the maze.  You put forward medication suggestions, based on your research.  Every single treatment you are on that is working has been suggested by you. Even in hospital, you have to educate the registrars who come to see you.  It makes you feel vulnerable. What if you are missing something important?  You don’t have a medical degree, you are nervous when you know more than they do about it. You email research to your doctors. The nice ones might look at it, the others might ignore it. Much like what they’ll do with you.

Then you find a group, online.  They all have what you have. There is sharing, and laughter and illness related humour (yes, it exists!).  There is compassion and kindness and expertise.  Resources and empathy and support. You are not alone. The relief is enormous. You’ve been fighting for help for six years now. You feel a different kind of worse every day. Once upon a time you used to dance. Sometimes you struggle to walk down the street and back again with your cane. Your life is light years away from the way you were before.  You don’t know if you will ever get back to the fork in the road where everything went wrong, so you can step back onto the trajectory you were destined for. If you are honest, you fear you won’t.

You’ve been sick now for six years. 312 of those flu weeks, end on end.

There are worse things, it’s true.  Some people like to remind people like you, that you’re lucky you don’t have cancer. You’re not sure how comparing illnesses is helpful.  It doesn’t change your suffering. Your cardiologist once talked about how people with your heart problems are ‘functionally disabled’ and literature from the States talks about you having the quality of life of someone with congestive heart failure.  But that’s not helpful either. Your reality is you don’t have YOUR quality of life, the one you relied on, based your decisions on, built your plans on.  I’m sure you’re grateful you’ve got your marbles. Glad that you can still walk short distances.  Thankful that you can hug your family. Maybe you’d just like to enjoy those things without feeling like crap.  Maybe you miss the connection between wanting to do something and being able to, just because you can.

What if all the things about your identity, the things you knew to be true, aspects of your personality, the things you do, the way you get around, your career, your parenting, your partnering.  What if all of those things were compromised, because you got something like the flu and it never, ever went away?

Thank you for sharing my journey, for 5 out of the three million, one hundred and fifty three thousand and six hundred minutes I have been sick. If you can imagine how this is, please be kind to the people you know with chronic illness.  It is a hard, hard road and we need your kindness.

Can you imagine?

 

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.
___________________________________________________________________________________
Does your relationship suffer because one of you is ill?
What do you do to keep it together?
How do you bridge the divide?

Trapped

Screen Shot 2014-09-02 at 9.14.36 am
“I hope you don’t feel trapped”.  I say to my hubster, blowing the steam off my cup of tea.  It’s the quiet time of the evening.  We are alone in the living room, we’ve been talking about our days.  We’ve discussed future proofing the next new car purchase against the possibility of needing mobility wheels for me. We’ve talked some more about IVIG and our optimism about it, we’ve discussed side effects and risks.  We’ve mourned the end of our channelopathy hopes.  It’s not an uncommon intensity of night time conversation for us.

And then, I see him objectively, for a split second.  This lovely big guy, greying around the temples.  So tired.  So sad.

“That’s exactly how I feel,” he says.
I panic when I hear that.  I think I was hoping for him to say “of course not” or “-whatever!”.  But I can always rely on him to be direct.  It’s his talent to cut to the chase.  My heart hits the floor. In my head, our conversation escalates to custody proceedings in T minus two seconds.  He wants to leave but he can’t.  Oh no!  He’s with me out of obligation?  I should offer to leave him.  Give him his freedom.  No!  I love him!
He watches me spinning into divorce infinity inside my head and reaches out his hand.
“Rach.  It doesn’t mean I want to leave you.  It doesn’t mean I don’t love you.  Differentiate. You are not your illness.  I don’t feel trapped by you.  I feel trapped by what is happening to you; to us. And I am not going anywhere”.
I stare at him.
He is extraordinary.

Here’s to all the partners.  To all the people shouldering big burdens just because they love someone who is sick. Here’s to the parents, the caregivers, the kids and the circle of people who surround us.  We are not sick on our own.  We are sick and the consequences of our illnesses are shared with anyone who loves us.  We wish it wasn’t that way.
We wish you weren’t trapped too.

Here’s to the ones who love us.  The ones who aren’t going anywhere.
You are beautiful.

Thank you.