The Poet

The first time I fell in love, it was in the library. I was in Year 7 and he was in Year 12 (oh the scandal!) so hanging out around everyone else always drew unwanted attention. None of the narks and gossips went to the library at lunch time, so that is where we could meet without scrutiny. I liked to think that the librarian understood our impossible situation and had a soft spot for young love. It seemed all very Romeo and Juliet to me, star crossed lovers, forbidden by family to be together.  His skin was golden brown and his eyes flecked with gray and gold. But it wasn’t his skin or his eyes that made me fall so hard. It was the poetry. That day, he asked me to hold out my hand and close my eyes. He placed two things in my palm. A folded piece of paper, and a tiny heart carved from chalk with the point of a compass. The heart, he told me, had taken all of a double maths period. The poem he’d written last night, lying in bed, thinking of me.

I was moved.  My heart was his. He wrote poetry for me!

 

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A few years later, when time and circumstance had brought that ill-fated tryst to a close, I heard that poem on the radio. It was song lyrics, from a song written long before I ever met him. His declaration of love was a pilfered fake. That moment of perfect romance; plastered on the walls of my gallery of treasured memories, frayed and curled on the edges before dropping to the floor.  A new fissure cracked across the surface of my idealistic heart. It would underscore my opinion of men, along with all the other little and big betrayals. All the while, the books I had read, the movies I had watched, built my romantic hopes until there was no man that could reach them. And eventually, there I was at 23, divorced and bitter. My young husband had gotten our friend pregnant, he had left to live with her and raise their family.  It took a few years, but finally, I saw a counsellor.

“Why do you punish every man you meet for the behaviour of another person?” she asked.  It gave me pause. I realised that I couldn’t go on like that. Dropping all my disappointments at the feet of any man, as if he were solely responsible for the failings of all men.  My man-hating ways had to find some balance. I had to look at people as people, not with the prejudice I had toward their gender. Or be forever alone. At that time, being alone seemed like a fate worse than death.

I spent years looking for a person to spend my life with. Years for learning a great deal about the nature of men and of myself. About how being a ‘victim’ of relationship breakdown is a choice. Bitterness is counterproductive. When things go wrong, we are always equally responsible for how it will play out, no matter how preposterous that might seem. And that I am the only person who can be accountable for my own happiness. I grew up. Poetry isn’t always literary genius, sometimes, poetry is a two word text in the middle of the day: ‘Love you’.

Romance takes many forms, if you care to notice it. A cup of tea when you’re not expecting it. A shared glance about something over the heads of the kids. Or something like this…

 

'Enjoy the day my honey. Love you!'
‘Enjoy the day my honey. Love you!’

Today I have wrestled from our schedule a little bit of ‘me’ time. Time to write, to drink coffee and muse. It’s been a busy school holidays and the kids are off doing fun activities, both on the same day in a little bit of heavenly orchestration. I have loads of jobs to do, but I don’t mind a whit… because I can do them uninterrupted and listening to my own music! I can dance like a ninny around the house and tap out my words into the ether. The hubster knew how much I was looking forward to my day of solitude; he gets it. So when I got back to my quiet kitchen from dropping off the kids, I found his words scrawled across the splash back in the kitchen. They are not borrowed words, they are straight from the heart words, genuine words. Words to make my heart warm.

I am the luckiest of girls to have a guy like that in my life. He is a whiteboard-marker-wielding poet, even if I didn’t know it. 😉

Jessica Bee -Telling Tiles

Today’s ‘Meet my Peeps’ Guest Post comes from Melbourne. Jessica Bee is a dear online friend of mine, a social extrovert (rare flowers in the online world, those extroverts!) and a social worker.  After researching tirelessly, she embarked on the Levine Protocol and has seen remarkable gains with her Pandysautonomia, so much so that she has been able to return to part time work and is beginning to rebuild her life.  Jessica is generous with her heart, her time, her support and her wicked sense of humour. Here, she gets reflective and discusses her journey into illness, the impact on her relationships and the gains she has made. Oh, and the state of the tiles in the shower. I know! You can already relate!  Those tiles always tell the truth!

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Your body doesn’t give up the game at thirty. Thirty is buying houses and maybe having kids, and travelling and learning to bake. It is getting past the drinking until you fall over. It is realising your parents are just people like you and getting your cholesterol checked for the first time in your life. It’s breathing a sigh that you escaped your twenties without major organ damage, bankruptsy, untreatable STI’s or pleading insanity. Thirty is the calmness of finding the person you plan to set up house with forever, or realising you just want to set up house with two of every animal (and maybe a few extra cats thrown in for good measure).

For The Doc and I, thirty was meant to be about having babies and getting married and juggling careers and family.  We were meant to be having dinner parties, just to discuss that struggle for the rest of time. It was meant to be about life being easier, more predictable, and nourishing and fulfilling in every way. We were meant to have adventures, until the arthritis would set in.  After that, we were meant to creak along together until one of us forgot the other’s name, slowly fading away until there was nothing left of us in the world.

But then I got sick. I hit 30, and my body hit pause. The onset was sudden, as it is for many of us. One hour I was at the gym in my matching gym wear and shoes with complicated arch support; the next hour I was home, on my couch, and I could no longer stand. Then I was in an ambulance, in those same clothes, not knowing that I would not put them on again for almost 2 more years. They scratched their heads. Something was wrong, but they didn’t know what. They watched me and speculated and collected body fluids and blood. They dehydrated me and scanned me, prodded me and watched my heart through their wires. When that failed, they read the journal articles I brought them. I was in hospital so regularly; I was never sure where I was when I woke up.

I slept with the lights on for 6 months. I woke The Doc, panting and terrified, and he was left to decide if I had crossed over from ‘feet up the wall and wait’ to ‘ambulance’. When they told us what was wrong, it was The Doc who remembered the positive things- that it was likely (in reality, this was only a possibility) I’d feel much better within 5 years, that it would not kill me; that I would be ok. That he would be there by my side for the five years and then we would live our forever again. I remembered only the bad- I was sick. I was thirty and sick. I was thirty and couldn’t work. I was thirty and couldn’t give my partner the kids we had promised each other. I was thirty and I couldn’t even clean my shower.

If a doctor's time is gold, then(1)

He meets more of my needs than a man should ever have to, and this isn’t counting the ones he knows I have that I’m not yet aware of. He also, deep in his bones, believes that the only space in a shower that needs to be clean is a 30cm square where you stand under the water. True story. For a whole year the area outside of that 30cm square taunted me with my inability to give him this one simple pleasure that he wouldn’t even know existed- a secret between me and the world, something I did because somewhere in him I was sure he enjoyed the glisten of the tiles exactly like I did. And somewhere else in me I was furious at him for not just knowing that those 3-tone-mouldy tiles captured the complete failure of my body. Why couldn’t he just clean them, so I could stop being taunted as I gasped and groaned through every barely conscious shower?

Being sick like this, it is easy to feel like a terrible human being for being cranky because your amazing partner doesn’t clean the shower the way you want him to. It was only when I allowed myself the luxury of a normal relationship (including being cranky sometimes) despite being sick that I began to rediscover my worth. I couldn’t vaccuum- but I could give him undivided attention when he told me about his work. I couldn’t make him dinner- but I could scratch his back when he was falling asleep at night. And I sure could get mad at him for not cleaning the shower.

Most of my friends are gone. It’s a simple reality of being sick- you’re different, they are not, and simply put, they have no comprehension of what you’re going through. They might not care much, or they might not understand that in the bleak tarry mess of early days with dysautonomia their mere presence could have lead you out of some of the blackest waters you have ever known. Maybe they are scared of saying too much or not saying enough… or saying the wrong thing.

The luckiest thing that has happened to me (aside from somehow charming The Doc into my life) was finding other people who live like me. Words are stabbed into the keyboard like the slurring that ensues after two bottles of cheap red wine. Yet without the haziness, morning regrets and pap smears. Unless you have ever had a need to, you can’t begin to imagine the comfort gleaned from knowing that somewhere in your 3am, a friend is in her 3am too. Suddenly your world is no longer tumbling away, or even if it is, you’re tumbling together and by 4am you’ll have hit either rock bottom, or sleep. I don’t know how I would have made it through without The Doc- or my Dysautonomia group. Finding your herd and knowing you’re not the only one with stripes*.

The Doc still hasn’t cleaned the shower. I was one of the lucky ones who, for reasons unknown to the medical world, have gained function back after the first few years. I haven’t recovered, but I’m cleaning the shower, and somewhere, deep inside The Doc, he knows the joy of glistening tiles again.

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*The ‘stripes’ reference relates to a common saying in Medical circles.  When Med students are training, their seniors will often say with regards to diagnosing patients: “if it looks like a horse and it sounds like a horse, it’s most likely to be a horse… not a zebra”.  And so the zebra has come to represent patients with diagnoses that weren’t ‘the horse’. Patients with rarely diagnosed diseases sometimes refer to themselves as ‘zebras’ or refer to their ‘stripes’.

The Dysautonomia Divide

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

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

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

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

Ouch.

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

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

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

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

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

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

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

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

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

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

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


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

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

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

I like you.

The other day, someone told me that the best advantage you can give kids is the ability to build good relationships with other people.  They learn this from watching the relationships in their world.
What does a good relationship look like when you are parents?
It’s probably a bit different to what it looked like before the kids arrived. Like, an interplanetary timewarp, different.  Same people, different planet.  Whole new meaning for the word ‘good’.

I like you...

Pre-kids, we measured our relationship success so differently.  Gifts, beautiful meals, the occasional romantic getaway.  There was lots of physical affection, winks, nudges, eye contact and fascinating, far-roaming conversations.  We’d gaze at each other in the candlelight and congratulate ourselves on how connected we were.  Passionately in love, deeply in lust, we had gigantic doozie fights, with door slamming and name calling.  And we were proud of the fact that we never walked away from an argument without resolving it. Ah, lurve.

These days I think love has smoodged over to make room for something pretty important.  Like.  Those two together are what I call a successful relationship when you are parents.  I love you, and dammit, I choose remember why I like you, too.

Remember when you were at school and someone nudged you and said “he likes you!” and being ‘liked’ seemed like the highest form of devotion possible?  We denigrate the word ‘like’ to a much lower than ‘love’ status.  But liking your partner, even when you are sleep deprived, your boobs hurt, you disagree on dummies, and you are certain that they really don’t ‘get’ it, whatever ‘it’ is that day….actually liking them on Planet Parent can be pretty tricky.  The increase in relationship break ups is testament to just how tricky it is.

It matters that you like your partner, because your kids are a product of your relationship.  If you don’t like your partner, the message to your kids is that you don’t actually like half of what makes them who they are.  It matters that you like your partner because it is easier to parent as a team than as two people who aren’t even friends.  It matters, because when you like someone, you are kinder to them.  Kindness in human relationships is exactly what kids need to see.  The future of our world literally does depend on it.  If there is something they are doing or not doing that you don’t like, remember that it is a behaviour, not who they are.  And tell them about it!  Most of us haven’t got a clue what pushes each other’s buttons.  Talk about it before it erodes you.

The kicker about this love+like combo, is that somehow, finding a way to have both in your heart for your fellow parent matters, even if you aren’t together.  I have taught so many children whose hearts are broken because their parents marriage is broken.  It happens; often it needed to.  But not to the kids! They watch with eyes, ears and self esteem wide open as the two people who made them rip each other to shreds.  They suffer your battles on a much more personal level than you do, because they are biologically attached to both sides.  There is no escaping who they are.  But it really sucks if you are hearing your parents point out the worst of both halves of you, ad nauseum.

Find the character strengths and positive personality traits your child inherited from your co-parent.  Focus on those things when you are discussing them in front of your child. The rest of it can wait for another time when the intended audience is the only one hearing you.  I am not a big celebrity fan, but I read this quote from an love-embattled star recently “We’re parenting, and working out if there is still a relationship to salvage”.  I think it is awesome that the parenting comes first.

What does a good relationship look like when you are parents?
You know those scenes in war movies, where everyone is leaving the smoky battle field?  They’re battered and worn out, maybe an eyeball or limb is missing, they are smeared with grime, matted and messy?  They slap each other on the back and say something wry and witty.  Satisfied glances are exchanged and the grins are contagious.  They’ve won.  They did it.  Together, somehow and against all odds.  That is what a good relationship looks like when you are parents.  It’s a look between two battlers.  It’s congratulations after a day hard fought and won.  It’s celebrating the beauty you’ve created by acknowledging the good bits in each other, in front of the kids you made together.  A good relationship between parents creates good self esteem in kids.  And it is a much friendlier way to take the journey of life.  Together, with someone you like.

I want my kids to be ambitious about love and find someone to be with that they actually like!  Someone whose company and conversation brings them comfort and calm.  The very best way I can show them how to find that, is by finding it with my man, every day. If they see the way good friends can resolve conflict without hurting each other and shoulder burdens without dropping the bundle; well I think there is a good chance they will know what a good relationship looks and feels like long before they have to choose one for themselves.