Written on your Heart

​Everybody has a place they go to when they close their eyes. A place that has meaning, that reasonates when the real world becomes too much. Where is it you go when you take a breath? When you take a moment? When you are so overwhelmed the only thing you can do is shutter yourself by shutting your eyes? We all have somewhere we escape to in the darkness that closing them brings, and with it peace or happiness or respite from the things that worry or haunt you. Maybe it’s somewhere you’ve been, maybe it’s somewhere you’ve made up, maybe it’s somewhere between those two. Wherever it is, in your mind it belongs to you and it is yours alone. Behind the pinky black of my eyelids, I am in a sunny bay. Bush covered hills protect my back. Along the ragged edges of the beach are a tribe of ancient pohutakawa spreading their arms open in welcome and dipping their leaved fingers into the golden sand below. The curving headlands hold us close within their embrace, a cosy little cove with only a hint of the endless coastline beyond. No need for great explorations they say. Stay here. Stop trying so hard to get further, to move faster, to climb upwards and onwards and ever distant from the things that make you happy. Be still. You can be contented here, they say. They offer up crabs, mussels, kina… munificent to the bounty hunters who scramble barefoot up their rough black rocks. Children stand with fluorescent hand reels dangling into the water. There’s no shop here, no dairy. A man in an ice cream van plays greensleaves as he winds down the hill every day, the familiar chiming drawing little ones out, coins hot and sticky in eager hands. On the kitchen bench are tins of cake and biscuits and rich Christmas treats and nobody notices or cares if a slice or two disappears, even at breakfast time. Bowls spill over with glossy cherries and almost-over-ripe strawberries leaking sweet red juice into the blue patterned china. Fingers stay stained pink for weeks. From early in the morning till the late summer sunset you can hear the gulls calling and little chattering voices drifting up on the breeze. Babies are rocked to sleep in the shade and rocketed to the water to be rinsed, small cities in sand leap up along the shore, the speed of industry rivaling the greatest of developments, older bodies haul themselves up from the sand in pieces to throw themselves in the lapping water. In the hazy sunshine nothing happens and everything happens. Everything is simple and momentous. The way skin prickles with the salt as it dries. The way fish tastes, fresh and subtle and secretive, when it’s come off your own line. The scratchiness of sand between sheets at night. The air smells like coconut sunscreen and citronella candles and barbecued sausages. Treasure builds up in piles at the feet of dozing parents: soft edged glass in jewel colours, shells with twisted passages, necklaces of popping seaweed, blue-toned feathers. Life falls into a kind of rhythm, suggested, but not dictated, by the gentle too and fro of the waves we are drawn to. Days are long but easy. Nothing is demanded except payment when someone loses another hand of deal and another beer whenever the next person stands up. Days pass in movable feasts, in cloudless skies, in books read in one go. They drift by in lemon flavored cordial sips, striped beach towels, exuberant sandy kisses from happy little girls. This is the place I come to when I close my eyes. And right now, when I open them, I am here too.

I love being here at the beach but at the same time I find it very hard to be away from home. It’s hard explaining every nuance of my condition. It’s hard to find an easy, understandable, uncomplicated and unemotional way to respond when people ask what I’ve been up to. It’s hard spending an entire extra day in hospital because they’re slow and unfamiliar with my protocol and untrained in the skills needed to implement it. It’s hard having to go in an extra day early. It’s hard that half my holiday is wasted in hospital. It’s hard that my nieces and nephew have to be told to be quiet with me, to be gentle, because I get too tired, too worn out by their excited, affectionate, sweet but demanding attention. It’s hard that we miss out on adventures or that if we go, I lose another day recovering from it. These things are hard, maybe even made harder, in a place that is so easy.

It has been hard, hasn’t it? For all of us.

Today is January 1st, 2017. Yesterday we had a brilliant day; saying goodbye in the best kind of way to a year that has been fraught and funny and frustrating and triumphant and terrible all at once. For me it has been a year of painful waiting and too-and-froing and complications and hesitations and, finally, two days before Christmas, the news that my surgery has been confirmed and in the new year I will get a new kidney and a new kind of life. It’s the second best present I ever got (the first being my two youngest siblings, mum was thrilled I kept asking for them). I haven’t told many people yet because it has taken me a little while to get my head around the fact that it is real, it will happen, but here, now, in this little blog that has become so precious to me, I’d like to share. 2016; the year of trouble, the year of shock, the year of pain and fear and seemingly endless despair for many around the world, brought me: a home of my own, a funny little kitten, even deeper and greater friendships, quality time with my beloved family, the joy of seeing loved ones commit their lives to each other, a garden to tend, new learning and better understanding, and this; not just the hope of a new future but the promise.

This year will be a big one. I’ve no doubt it will be challenging. There is a little fear here in my heart, I’ll admit. And it is still difficult to fully imagine or comprehend what these changes will mean and how completely they will alter my life. But, as I sit beneath the shade of this big, old tree, on a scarlet carpet on the sand, I feel good. I feel strong enough and brave enough and so desperately eager that it’s hard to quiet the dreams and plans and longing that are building up in my chest. My head is reeling with thoughts of all the lives I want to make and lead and have. I feel full and expectant and happy.

Every year I pick a word that describes the way I want to live in the 365 days that belong to it. Previous years’ have been to be intentional, mindful, kind, grateful. Last year I wanted to be more open and I think, especially in this blog space, I have been. It isn’t easy for me to let people see me struggle or hurt or be anything less than my expectations of myself but I have learnt a great deal by being more vulnerable and more honest. I am grateful for every one of you who reads my writing and is gentle with me. You have all made it possible for me to let my guard down and to share my story. I hope that my words might speak to you or express something you might also have felt. Or that it has helped you better understand someone you care about. I hope that in some way my openness has or might help you to feel you too can share your story. I promise you, if my experience has been anything to go by, you will be both surprised and incredibly moved by the support and love you receive when you let people know you a little more deeply. I have been surprised by you, by your love, by your support. I am an optimist by nature, a bright-side-looker, a glass-half-fuller, but even I am consistently astonished at the amount of kindness there is in this beautiful, flawed world that we live in.

In 2017 I am deciding to live bravely. And for me that means to continue being open, to continue being intentional, to continue being mindful and mostly, even when it’s difficult or costly or complicated or demanding, even when it scares me, to continue being kind. Because of everything, that’s what I want to be remembered for. Even if (and it won’t I’m sure) something in this major change doesn’t work out the way we want it to, 2017 will be a year to remember. And when people remember my role in it in their own lives I want it to be for that.

The title for this blog post comes from this beautiful quote:

“Write it on your heart that every day is the best day in the year.” — Ralph Waldo Emerson

A Time of Rejoicing and Reflection

​I look well. So much better. Better than people expect after what happened. And that’s what happens. I’m resilient. I’m tough. But also, I try really, really hard. Tom gets worried because he knows that the sparkle, the surface, the smiling is all just force of will. It’s all just my desire to appear better, to be normal, to function properly. I look well. So much better. But I look better than I am. Because what I am is not quite coping. Not quite dealing. Not quite there. How much can your mind control your body? I think recent events have made it quite clear. And yet I keep trying far too hard. 

I don’t know how to not try. I don’t know if I am made that way. I understand that I am limited, and I really mean to be low key. But by even the end of a peaceful day I am sometimes sobbing quietly in my bed; frustrated at how useless I feel, how little I can contribute, how hard others have to work to pick up my slack.  

I am aware, when I am in conversations, of all the ways I am failing. Usually this is easy for me, I very much like meeting and chatting with people. I have never found these exchanges to be fraught or clumsy. But when I am talking now I find words missing in my head, I find no quick response or sense of humor. I am slow and heavy and lost for words. Usually I can be expected to bear most of the effort of keeping a conversation flowing no matter the subject. Now I am quicksand sucking it under. It’s disconcerting and a little scary to reach for something and not have it there. I have lost my ease and my language and I am left both bereft and awkward. 

I’ve always thought words were mine. That they belonged to me in a fundamental way; one I have worked at and cultivated and cherished, but one that I also inherited at birth. I think in long sentences, I see the world in paragraphs, I feel things in poetry. But in the last month I find myself struggling. That easy access to the words I need, that felt as natural as breathing, is gone. They don’t answer me when I call them. My brain has gone soft and messy and I don’t  know how. I don’t know why. I don’t know what to do to fix myself. Is this temporary? I try to tell myself I am just tired. I just need to be patient. But I feel like hard work and that makes me both embarrassed and anxious.

Christmas time is one of my favorite times of year. Yes. I’m one of those people. I love carols. I love decorations. I love sparkly lights. I love families coming together from wherever they’ve spread apart to. I love that we remember and take time to call or write cards to or catch up with people we care about. But Christmas is taxing too. It’s fraught and it’s joyful and it’s indubitably exhausting. At this time of year my usual routine for hospital visits gets truncated because I can’t last as long out. There’s so much going on and so much excitement and so many people. 

And this is the time of year we all try to connect. It usually makes me so happy to catch up with friends and family and to hear all their stories and news from the year. People I haven’t seen in a while ask what I’ve been up to. What have I been doing? And I’m not sure what to say anymore. Specifically… not a lot really. Gardening. Making things out of socks. Laughing at my cat catching flies. Trying not to collapse over the vacuum cleaner when I haven’t even finished cleaning one room in the house. Spending a lot of time curled up in bed or on the sofa. More broadly… surviving. Just barely sometimes. I don’t have any big successes to crow about. I don’t have any exciting work stories. I have dodgy kidneys and very little stamina. I love my life. I honestly have never felt more contented. But out of necessity and desire it is very simple, very routine, as safeguarded as possible. And the big things that have happened aren’t happy or easy stories to swap over beers and homemade truffles. It’s tricky. 

My twin and I have spent the last three Christmases in hospital. Not the whole day, last year we woke up in the ward and got to spend most of it at home. But this is what life is for us. We plan holidays around hospitals. And if we say we have twelve days on holiday, we don’t really. Because three or four will be spent in hospital and the day after is always painful and the day before is always bad so out of twelve we’ll get maybe four good days. And that’s good for us which isn’t the same as everybody’s good.

Holidays, even if we love them, are difficult. Stressful. Require lots of planning and patience. The truth is my entire day to day, my whole life really, is structured to safeguard my health and any disruption in that is dangerous and hard. There’s little room for spontaneity or grand elaborate surprises in a life like mine. Currently even the small and quiet life I’ve painfully dug out for myself has been too much for me. I am just ever so slightly overwhelmed.

I have been trying to write something for a while. Or meaning to. It’s never gotten any further than a few scattered sentences. But I haven’t really been doing anything really. I sleep or rest a great deal. I eat as often as I can. I try gather bits of myself back into order. My mum asks, are you OK? And I say, yes good. Happy. I’m just a bit tired. Only “just a bit” doesn’t come close. Because what I feel is more than that. I am tired. But I am so very very tired. Tired right down to my bones. Tired in the marrow that runs through them. Tired in a way that I can’t even describe because I haven’t the energy to summon the imagery.

Sometimes I find my head lolling just because I don’t have the will power to hold it straight. I’m trying. I’m trying so hard. But trying doesn’t beat tired. There’s no way to push through this; there’s neither anything to push with nor anything to push through to. I feel guilty and sad that I can’t spend this time how I would like to; helping my mumma,  visiting loved ones, spending time with family. I have to take myself off for rests in the middle of the day when I’d rather be painting nails with my sister or icing biscuits with my mum. There’s such a lot to do at this time of year and always so many people I want to see; there are presents I meant to give and cards I meant to write and baking I meant to deliver and visits I meant to make and I haven’t. I haven’t given or written or delivered or visited. I haven’t helped or iced or painted. I feel so angry at myself for the failures building up and yet I can’t fix them. I can’t stop them piling high. Every day another missed moment is stacked on top of me. I feel heavier. 

I wish I was better. I wish I wasn’t so darn tired.

My life is good. I feel enormously fortunate. I love being with my family, sitting in the sunshine in this beautiful place I had the good luck to grow up in. Mum’s garden is blowsy and lush with blooms. My baby sister is home for Christmas. I love this time of year and I am happy. I am glad. I am excited. I am just also not quite coping. I’m really tired, that’s all. Only I get scared that it’s not.

The title for this post is taken from a Winston Churchill quote; “Christmas is a season not only of rejoicing but of reflection”.