The Unexpected Intrusions of Beauty

It has been a while, here, for you and me. I am sorry-not-sorry for having neglected this space. Sorry because it was such a comfort, such a powerful and beautiful space of sharing for me, a place where I felt strong being vulnerable and a place where I got to share what had always been an isolating and private journey with people who cared. Not-sorry because being absent from this space is a reflection of the growth in both myself and the scope of my life since I had my surgery; I am more free, more independent, more involved and much more a part of the real world; and as such, I can withdraw from this written one and choose to be present in the living one.

We are more than halfway through the year and I feel like I blinked and it happened without my permission. It has been such a busy busy time, full of growth, and pain, loss and love, endings and new beginnings – as all our beautiful, unpredictable, real lives are. Today it is August 11th and it is the two year anniversary of my transplant. It feels like just yesterday. It feels like an aeon ago. I had, if I am honest, completely forgotten the significance of the date. Or more accurately, it had crept up on me without me realizing it. Our calendar is so full of plans and trips and events and outings that I move forward without reflecting on anything more than the excitement of the life I am actively engaged in creating. Only today mattered. My mama called to say congratulations and I had to double take. Two years? Two whole years. Two years and an entire lifetime.

So twenty-four months on from that hospital bed and where am I? I am very happily married. I have a beautiful home. I am working in a job that allows me to contribute to profound positive change in our world. I am training most days in the week. I am fit. I am strong. I am healthy. I am hoping soon to start a family with my incredible husband. I am incredibly grateful.

I am myself, only more so. Myself, but in a much bigger way. I feel braver and bolder and better; and if sometimes I feel less than I would like to be, weaker or messier, or sadder, or more vulnerable, I am still so much more than I could have hoped. I am still here. Most importantly, I am happy. Happy in a deeply contented way; a feeling derived from a place of peace and fulfillment and hard-won perspective.

These days I fall asleep easily. I wake early and energized. I get so much done in every day and I am always planning more. I forget sometimes that I was ever anything other than this, but, at the same time, I am acutely aware that this is what I am. Transplant was not a cure, I often have to remind both myself and others of this fact. It has not fixed everything; sometimes I have to adjust my expectations of myself and my abilities, sometimes I have to make allowances or adaptations to protect myself; sometimes I have to give something up to keep prioritising my health; but transplant has changed everything for me. My new kidney was a tremendous gift and that gift has given me a life that is all my own.

It is beautiful, my life. Complicated. Difficult. Remarkable. Privileged. Imperfect. Infinitely precious. Extraordinary. Mine.

The title of this post comes from this complete quote:
“Unexpected intrusions of beauty. This is what life is.”
– Saul Bellow

All the Blessed Moments

Today is my kidney-versary. It has been exactly one year since I had the surgery that would change my life. At the time we had no assurances, no certainties, no guarantees that it would work… nothing but the knowledge that if we didn’t do anything it would only get worse, and the hope that if we did do something it could only get better.

It took a decade for me to deteriorate to the point where my health became critical; several years for the medical team to seriously consider transplant as an option; longer still to convince the surgical team it was possible; and then seven and a half hours to remove both my faulty kidneys and give me a new one. In the twelve months that followed I had six weeks in Auckland, two episodes of rejection, several major complications, two months in Waikato hospital, faced fear, frustration and apologies from my renal team as they battled to figure out the problem, and was presented with the painfully articulated possibility they had made a mistake in putting me through the transplant process.

In these last 365 days I have also climbed the mount for both the first time and many times since, attended important functions without an early exit, played properly with my nieces and nephews, exercised regularly, written professionally, volunteered meaningfully, travelled spontaneously, got a new job working in one of my favourite places in the world, managed to vacuum my entire house in one go, acquired two cats, planned a wedding, planned a future, spent time with people I love, learnt new things, recovered, healed, grown. But principally, and most crucially, I have lived. I have lived every moment of those days, of this year, and I have been, and continue to be, extraordinarily happy. Every morning I wake and smile. Every night I sleep safely. The smallest moments feel big, the bigger moments feel utterly profound.

In March I will get to marry the love of my life. In the year that follows we will travel overseas. At some point in the not-too-distant future we now have the ability to, in some way or another, start a family. I get to work, to spend my time and energy on things I believe in, to contribute to causes bigger than myself, to make a difference. I get to make plans and discard them; I get to act without plans; I get to contemplate an entire world and be a living, working, breathing part of it.

Tonight we celebrated. My beautiful mumma, my beloved Tom, my soon-to-be father-in-law and my incredible mother-in-law-in-waiting, who is also celebrating the anniversary of her own surgery; the one that gave me this chance at a better life. I am immeasurably grateful to her for that sacrifice. I am grateful too to everybody who has supported me, encouraged me, comforted me, messaged me, called me, visited me, helped, hugged, and loved me in any way through this journey. Every single day I feel lucky. I am lucky every single day.

Happy kidney transplant anniversary! Thank you all for being a part of this.

A Million Little Gods

It has been several months now since my last post. Sometimes I look back and it feels like an entire lifetime ago. Sometimes it seems like that time has passed in the blink of an eye. In February I was lying in a hospital bed and my doctors were apologising to me for having made the decision to go ahead with transplant, saying they regretted it and it was the wrong decision, given where I had ended up. Only… that wasn’t the end was it? That hospital bed, those disappointed doctors, those dull, confusing, incomprehensible weeks… that wasn’t where I ended and they certainly weren’t the conclusion of my story.

I guess the question you might have now is why has it taken me so long to get back here? There’s no good answer really except that it is good. I have been busy, very busy, living. I have been walking up the mount and making plans and writing (not for the blog), seeing friends and travelling and doing jobs that have sat on my to-do list since forever. I have started projects and finished them, built things, cooked things, planted things, created things. I haven’t had to miss out. I haven’t had to leave early. I haven’t been in hospital. I haven’t been substituting for a pin cushion at the path lab. I have been well.

That seems such a bland way to put it when I wake up every day feeling the magnitude and marvel of it. To be able to say yes without hesitation, anxiety, fear, without provisos or qualms… to be able to say yes at all. Yes I will come. Yes I will go. Yes I can, I can do that. Yes. Again, such a bland word, such a little word, but oh, such a powerful one. In the last weeks I have felt so empowered and emboldened by that ‘yes’. I have done so many things that as little as three months ago we would have said would never be possible. The doctors have called it a miracle. And it is a miracle. Life is a miracle. Every single, boring, banal, exciting, happy, sad part of it. I will never not feel the extraordinariness of being able to do things; the utter magic of ‘yes’.

So… what next? What do I do with this miraculous life of mine? What do I say yes to next? I have spent almost a decade waiting for this moment, going quietly and gently and carefully through my days trying to get to the next one.

When you spend as much time facing the precariousness of your life as I have you inevitably have to think about its end. Mortality makes you contemplate… what will my immortal actions be? What is my legacy? When Death sits right next to you, you are forced to make conversation with it and answer some questions you’d maybe rather avoid. If I left this world today, how would I be leaving it? Not in the sense of “how will I die?”, I’m not picturing fiery car crashes or solemn, noble deathbeds; I mean, what sort of impact have I made in this world with my life? What would my eulogy say about me? Where would I have left my mark? Which, though it might seem morbid, is actually a brilliant and illuminating way to see how wonderful and beautiful and full of potential every single moment that we live can be. We don’t have to be perfect, God knows I’m not. But we can be good. We can be kind. We can be courageous. We can be compassionate. None of those things demand we don’t make mistakes, that we don’t fail, or that we sacrifice everything for them. These are values we can, and should, create our lives from and ones we can consider in almost every moment and every decision that we make.

I don’t pretend I manage that all the time. Sometimes I am thoughtless or careless; sometimes I think mean things; sometimes I throw stuff in the rubbish bin that should be recycled; sometimes I buy pad thai with prawns even though I know prawn farming is incredibly environmentally damaging. I don’t always do the right thing. Honestly, sometimes I’m not even sure what the right thing to do is.

Every single day though, in as many moments as I can, I try to be good. I try to be patient. I try to be kind. I try to be gracious. I try to forgive. I try to always remember that my story is just a tiny part of a much bigger and infinitely complicated narrative made up of billions of stories. I try to remember that the points at which my story intersects another are the moments in which I can make a positive impact, no matter how small.

I try to be better. Every day. I attempt to live as honestly as I can, both in being who I am and in making the effort to be the way I want to be. I spend a lot of time thinking about where my life should go, how I will be best to spend it, what I can do in our world in order to make it better. It can confuse me, it can overwhelm me, it can seem so big and so hard and so pointless sometimes. But I persevere because even in my own tiny story I know how much of a difference those little things can make. The cheery good mornings from my neighbours, the time my nurses spent with me just talking even as I knew they had many more hours work than they could achieve in their shift, the gentleness of my specialist as he discusses something difficult, the flowers from my friend’s garden picked with me in mind. I have been the recipient of immeasurable and uncountable kindnesses from others and I know from my experiences how valuable and meaningful they can be. If you feel insignificant it’s only because you haven’t realised yet the potential you have to be a part of something bigger. I don’t want this to sound preachy but truthfully, even a small gesture can make a big impact; it can be life changing for you or the person you make it towards. Now that I (finally) have some energy, most of all I want to use it to pay those kindnesses both back and forward.

I feel like I worked to survive every single year of the last ten years. They were difficult, complicated, limited years. But now that I can think beyond surviving, I plan to work to deserve them. I have a good life, a very good life. My ambition now is to make it a worthy one.

The title is derived from a line in a song by Arcade Fire called Wake Up. The original goes “… we’re just a million little gods turning every good thing to rust” which talks about our tendency to ruin, corrupt or destroy everything around us. Sometimes that is accurate but I believe the converse is just as true; we also have the infinite capacity and power to make the bad into good and the good even better.

The Sun Will Rise and We Will Try Again

You say it to yourself sometimes, this is not my life.

You get another pin prick, you answer another question, you take another tablet, you stare out the same window from the same bed on a day that feels just the same. It has been five weeks and you are still here. Still sick. This is not my life, you say to yourself, this can not be my life.

But… it is. This is the life you wake up to, the life you fall asleep to, the life you fought so hard to keep and build and experience. And you want to keep it, to continue fighting for it, to make it better and brighter and more yours, but still… This is not my life, you say.

What you really mean is, this isn’t the life I want, it isn’t the life I thought I would have, this isn’t the life I had hoped for. And I guess that’s pretty universal, I bet we have all felt that way at some point or another; when we’ve failed someone or something or someone or something has failed us. When we have made a mistake. When we are faced with an impossible choice. When we miss an opportunity. We have all experienced that moment when we look at ourselves and realise that where we are is not where we meant to be. This is not my life, we say.

The thing is… The life I want is already mine. It’s there waiting for me in a house with two kittens and a big garden and next door neighbours that bake you date loaves just because they love you. It’s there waiting for me in a big bed with proper sheets and big arms that are always open and a big view over the wetland that catches fire every night. In my friends and my family and my way-too-many potplants and the myriad of plans and lists and dreams that are lying abandoned. That’s my life. And I want it back. More than that too… I want that life we had hoped for.

This weekend has been very hard for me. Yesterday I got to go home for the day. It was beautiful. Everything was wonderful. We were together. I was home. But it was also difficult. I spent the day tiptoeing on the edge of tears; everything I looked at, everything that I touched, everything I love, everything that is mine. The places I belong to and my family… all here but I am there. And it isn’t right. It isn’t how it should be. And I see all the ways in which my life needs me, all the things it’s missing without me there to tend to it and take care of it and I grieve.

And in my head that old song plays on repeat;
I wanna go home,
Let me go home,
Oh I feel so broked up,
I wanna go home.

I was home but I couldn’t stay. We drove back over the Kaimais through mist and rain, a thick and suffocating blanket disguising the world around us. It hasn’t stopped raining in days. The air is heavy with humidity and everything feels damp all the time.

This morning the doctors came again, as they do every day in different permutations. They came and they told me what was happening and what they had discovered. And the news wasn’t good.

It’s still too fresh and I’m still too ignorant to go into any detail. Maybe I will never understand it enough, the doctors don’t seem to either. Essentially my body is confusing things. Getting rid of what it should be holding onto and holding onto the things it should be getting rid of. And in between all of that my kidney is struggling. In the not-exactly-tactful words of my doctor; everything is getting worse (that is a direct quote). We have moved from our original intentions of fixing the issue to the lesser ambition of just trying to stop it degenerating further. We aren’t thinking about a solution so much as we are trying to figure out a management plan. And, as a collective, we aren’t entirely sure where to go from here.

My family call and I don’t know how to tell them or what to tell them. My attempts are occasionally punctuated with a slight crack in my voice and I’ll say, it’s ok. I’m ok. I’m just a bit tired. I say that all the time. The doctors ask me how I am or my mum checks in or my dad questions how I’m doing. I’m ok, I say, I’m just a bit tired.

And I am, I am tired. But what I really mean is, I am sad.

Mostly I am fine. Happy even. Mum or Tom and I play board games and go for walks and explore the before-undiscovered jewels of what is a vastly underrated city. I am trying to teach myself how to draw again to accommodate the shaking hands I have as a side-effect of one of my medications. I like to rearrange the flowers on the windowsill in my room and to write little bits and pieces of the children’s novel I am trying to bring to life. I call my family and organise our wedding. I look forward to mail deliveries and visitors and weekends.

I will be ok. As Tom says to me, I always am and we always are. No matter what happens, he tells me, as long as we have each other we will be happy. And as I have discovered on the journey, there are always so many reasons to be happy. And we aren’t giving up. Nobody is giving up. We will all keep trying. We maybe just have to figure out a different plan, work out a different dream, adjust our hopes and expectations.

This is my life. It is the only one I get. So I choose to live it in whatever way I can. I choose to live it in the best way that I can.

Ring out the False, Ring in the True

Every new year we get the chance to reflect on the one just passing and to look forward to the one to come. There’s a natural pause that encourages us to, and a tradition established that compounds it. It isn’t a bad thing, necessarily. New Year’s Eve is a portal, like a doorway, that psychologically acts the same way; we pass through it and it resets our minds, clearing them of our previous preoccupations and allowing us to form new ones. Sometimes we need to leave things behind and a new year is a good opportunity to do so. But, in another sense, there’s increased pressure to make plans and set goals that you don’t necessarily ascribe to.

Sometimes, in spite of myself, I get caught up in comparing my life to these arbitrary measures of success that as a society we have determined are a reflection of our functionality as a human being. Sometimes, in spite of myself, this makes me sad. Broken down into a list of achievements or externally motivated goals, my life might not seem much. I haven’t changed the world, I haven’t established a sparkling career, I haven’t got a fancy car- hell I can’t even drive. Against a yardstick of conventional success, I would fall short time and time again. But then I try to remind myself that I didn’t set those parameters and I don’t wish them to measure my life either. That at the end of the day, and certainly at the end of the year, the questions I ask myself are not about what I achieved or acquired. I didn’t choose to focus on what I am doing; instead what I am interested in are questions about being. Was that honest? Was that fair? Was that kind? Did I act generously? Do I understand? What can I do to help? And, always always always… what can I learn?

I don’t always get it right. Sometimes I still mess up or say the wrong thing or miss an opportunity to do something that could make a difference. But I try, I’m always trying. And every day I get another chance to do things differently and to do things better.

I think that’s why, when it comes to the New Year ticking over, I like to approach it with not resolutions but with intentions; to make my plans about being, not doing. And when I come to the end of the year and reflect it isn’t about measuring my “success”, it’s about the level of fulfilment I have reached and the differences I have made in my world.

Last year was a really big year for me. In expected and unexpected ways. I got a fiance and a kidney, made new friends, a few exciting decisions, several playlists and some beautiful meals, walked my neighbourhood many times over, planted trees, picked flowers, lost my little cat and too much weight, spent a lot of time in pyjamas but tried to spend less money, watched too many home shows, watched just enough sunrises, and, somewhere amongst all that, I started imagining a life outside of hospital schedules and doctor’s appointments and figuring out what I wanted it to look like.

And what I figured out is that I really love my life. I love my home, my friends, my family. I don’t need my life to be better, what I really wanted was for me to be better. Both health wise and as a person. I want to make good decisions and good choices, to be a more present listener and a more helpful friend, to use some of my new energy to contribute to something bigger than I am, to continue to value the things smaller than I am. I don’t want more stuff; I want more sleep, more vegetables, more time with the people I love, more Te Reo. I want less passivity and complacency, less screen time, less meat and less prejudice. I want my hours to be an investment and not a waste; but to appreciate that spending hours doing nothing is sometimes the absolute best way I could spend them. They aren’t empty hours if they make me feel full.

The thing is… it’s not the life you have that makes you who you are, it’s the way you live it. You can’t control everything that happens to you. I had hopes and expectations for my transplant recovery, how it would pan out and what it would feel like, and they didn’t all come true. Many of them didn’t eventuate and the reality of recovery and “real life” often felt very far away from my desires. And my desires are often far away from the ones I feel like I should have, or am meant to have. The ones other people my age, my sex, my background might have. There’s that expectation again you see. Expectations are like fine pottery; the harder you hold them, the more likely they are to crack between your fingers. And who gets hurt then? Only you. I think that’s the main thing I want to leave at the doorway of this new year; expectations that don’t even belong to me. Having or doing more doesn’t mean I am more does it? We are after all human beings. But I do want to be better and becoming better isn’t just something that happens. It’s a choice or a series of choices we make: to pay attention, to extend ourselves, to stay or to go, to listen more carefully, to notice more, to love.

I don’t believe in labouring for the sake of labouring; for the purpose of reaching a certain milestone or measure of success as defined by expectations outside of your own. I don’t believe in following convention or necessarily disregarding those who do. We all have our own journey; we all matter equally; we all deserve grace and time no matter how we are different to each other.

What I do believe in is intentions and in working hard to pursue them: working for empathy and understanding of others, working for the depth and development of self, working to make each day better, each moment better, each place and person we touch better for our presence. Choose the things that matter to you, the values you believe in, and live a life trying to ascribe to those values. And then, no matter what you achieve or don’t achieve, whether you have a house, a degree, healthy children, a great job or a good car, or whether you don’t have any of those things, you will be a success .

I believe in fresh starts and new beginnings, trying again, trying harder. Welcoming a new year with open arms, an open heart and an open mind.

I believe in happy endings too. Hello 2018, best year yet.

The title of this post comes from the Alfred Tennyson quote.

When the Lights Go Out

Last Tuesday I turned thirty. It was a wonderful day celebrating with the person I entered this world with three decades ago. There was sunshine and surprises, cake with ridiculous amounts of cream, sweet and thoughtful messages and cards and calls, flowers and fresh strawberries, and every single avocado I opened was without blemish. I felt extraordinarily lucky and so very glad to have made it this far; both in years and in life. Here is my beautiful world and the beautiful people in it and the beautiful future I can create and I am so glad to be myself, to have grown into this person, to have this, to be thirty years old and living.

But to have so much, to want so much, to dream and plan and live and feel….opens you up. And when you have something, you also have something to lose.

I am back in the Renal Ward here in Waikato. I am lying still after another biopsy. Things are not going as well as we had hoped and my last few readings have been a bit worrying so here we are again. And here we go again.

I am grateful to have a team that monitors me so closely, that care for me both personally and professionally, who want this to work so badly for me. I am grateful to have a fiance who always makes things easier, who never complains about the drive over or about missing work, who stays with me even when I am not chatty or entertaining in the sterile and strange hospital environment. I am grateful. But I am still frustrated.

I started writing this post a couple of weeks ago and then I couldn’t manage to get it finished. I didn’t know quite how to say what it was I meant and I wasn’t even sure exactly what it was I meant to say. Things have been different to what I had expected. Things have been a lot more complicated and difficult and volatile than we had hoped. I knew this first year would be unsettled but I also thought it would be easier than it is.

I am better. In lots of ways. There are things I can do that I couldn’t before, I’m no longer exhausted by simple activities and if I am tired I recover a great deal faster. I am going for walks every day, I may even get up the Mount some time soon. I haven’t needed a single potassium or magnesium infusion since my surgery. I can vacuum my whole house in one go. These are all excellent, positive, encouraging results. It’s just that I, and my medical team, had hoped for better.

We have concerns. My concerns are mostly that they are concerned. That is why I am here again. That is why we have done another painful biopsy. That is why I am on tenterhooks every time I get a blood test. I have a feeling in the pit of my stomach and the back of my head, like a weight I am not used to carrying.

Is it bereavement I feel? Certainly it feels a little like grief. I’m not even sure what I am mourning though. Is it my old life? The fact I at least felt somewhat in control of it? The reality that my current and immediate future does not match the one I had imagined? There’s no use pretending that it has eventuated. I know now that I had overestimated every aspect of my ability to recover and the level of strength and wellness I would feel post-transplant. I had thought, perhaps naively, perhaps blindly optimistically, that I would have a working kidney and then I would be well, I would be normal. But, in one sharp cut, both the expectation of the new and the familiarity of the old have been banished and this is uncharted and unpredictable territory.

I grieve for my body. It feels like a foreign city to me sometimes. Gorges and earthquakes and giant splits in my skin. Bumpy new roads and strange sensations. I don’t quite speak the language of this new incarnation and the incomprehension this causes, the difficulty we face in understanding and translating each other, makes everything more difficult and more complicated. We are strangers to each other and sometimes it feels like I am the only one making an effort to reach through. The uncertainty that accompanies such a major, and traumatic, change is unsettling, disconcerting, and for a control freak like me, a source of profound anxiety.

I am doing everything I can, everything I am told to do. It is hard, this part, to know what should be happening and yet to have no ability to make it happen beyond what I am already doing (which is currently not enough).

I am mourning something I never quite had and maybe that’s what makes it more difficult.

And there are other losses. Other pains to mourn. I try to remind myself that loss came from gain; that I was lucky to have something to lose. I tell myself over and over again. As if it makes it easier. As if it will hurt less.

The thing is, the breaking of a bond you have invested in will always leave you changed; leave you as both more and less than you were before. Sometimes it is unexpected. Sometimes you believe you are prepared. Sometimes you expect it but you still aren’t prepared. Even when it’s something or someone you know you needed to give up or wanted to get rid of, it doesn’t mean the loss isn’t difficult. There will always be grief involved. There is always some mourning in change.

The old adage that time heals is true but it’s not the whole story. Certainly the day to day of things might ease but there will always be moments where it hurts all over again as much as it ever did. Healing by its definition means there must be a wound and though it may repair it will never be the same. Sometimes you might heal stronger; you hope you will heal stronger; but you will always bear the marks.

Maybe the skin feels tight when it pulls away from the scar, maybe you favour your other arm after a break, maybe you still get short of breath when you feel overwhelmed though it’s been years since your last anxiety attack, maybe you give less of your heart away, or love a little more cautiously… We wear the vestiges of our past pains forever.

As I get older though, I can recognise the power of loss too. Mostly it is loss that teaches us about the worth of things. There’s another old saying; you don’t know what you’ve got till it’s gone. Sometimes, if you’re lucky and clever and you learn, you can discover the value of what you have before it’s gone. And we can discover within ourselves the things we can gain too; resilience, empathy, gratitude.

Part of the long (often difficult and painful) journey of emotional healing I have been on since my teen years and early twenties, when I experienced at times crippling mental illness, has been accepting that sadness is a valid emotion. That feeling sad is not a failure and that in itself it is a reasonable and necessary emotion like any other (except bitterness which is the single least constructive feeling you can experience). Learning to sit with my sadness and let myself feel it was terribly hard to get my head around. Recognising that sadness is a crucial and unavoidable part of being open, of loving and receiving love, of making any kind of connection with the world around you and the people (or animals) in it. Understanding that sadness is the sister of joy and that they come as an inseparable pair. Appreciating the strength that comes from accepting both and growing from them and not letting fear of getting hurt or experiencing loss prevent you from creating bonds.

The Japanese have a beautiful process called Kintsugi, a method for repairing broken ceramics with a special lacquer mixed with gold. The break becomes a vein of precious metal through the object. The philosophy behind this is to recognise its history and to visibly incorporate the repair into the new piece instead of disguising it. It becomes, through this journey, something more beautiful than the original; having been broken it becomes greater.

I like to think that maybe I’m like that. A little bit broken in some ways, but better for it. I know that the journey I’ve had to this point, the connections I have made, the ties that bind me here in this place, to these people, are a part of the reason I can keep faith and keep trying, even when things are hard.

Coming Home to Yourself

I sat down to start this post yesterday. The sun was shining. There wasn’t a breath of wind and the sky was cloudless and blue and bright. It felt like spring. The magnolia that tilts over the fence was covered in waxy white flowers with their deep purple centres, and on the walk to the hospital we crossed footpaths covered in a carpet of pink peach blossom. We have a resident blackbird who is industriously building a nest in some close but mystery location. I had drunk pretty tea filled with flowers in a little Newmarket cafe and walked further than I had managed in years. It was a good day.

But I didn’t end up writing anything yesterday. And today isn’t such a good day. My wound keeps splitting open and bleeding. My blood results have deteriorated. I’ve lost too much weight too quickly. I can’t seem to stay hydrated enough despite drinking over 3 litres of water a day. My head aches with every movement. I threw up in the carpark, twice, just managing to get the car door open. It is grey and cold and windy. And I am being admitted to the ward again.

This is what recovery looks like. Good days. Bad days. Completely unpredictable even when you are doing everything right.

There is no way to prepare for this really. I mean, there are things you can do beforehand that make it easier. Being as healthy as possible. Reading all the literature they give you carefully. Having the people you need around you. Making some plans for the future. These things help you get through, yes. But until the surgery happened I couldn’t have imagined what this would feel like. They give you great sheaves of paper and documents detailing the post transplant care routines, you get multiple visits a day from dieticians, pharmacists, coordinators, doctors to explain in more detail what you’ve read. The nurses and doctors impart critical instructions in succinct bullets on their brief rounds. The sheer volume of information is extensive and overwhelming. But even if you manage to absorb most of it, knowing and understanding theoretically what is required of you, doesn’t prepare you for how it feels like to live it.

There are so many rules and things to remember. So many behaviours that have to be practised and repeated until they became innate. So many restrictions you don’t even realise you’ll find difficult until they exist. So. Many. Pills. So. Often. And the dosages change almost every day so you’re constantly checking and rechecking against your drug chart, which has started to resemble a ballpoint tangle more than an ordered set of notes. Even washing your hands becomes a ritual, a compulsion that leaves them dry and chapped.

I knew everything would change, but I don’t think I realised everything would change.

The day of the surgery I was very relaxed. Up until that moment I had been, I admit, scared… anxious. Worried that I might in some way jeopardise the surgery before it got to happen. But on the Friday before I was taken in and put under I felt almost supernaturally calm. My family were not but even the surgeon noticed when he came to see me beforehand. I told him, today is my day off. Today you work hard. And tomorrow I start work again.

Dont get me wrong, this is the dream. But this dream, like any worth having, is bloody hard work. There are so many things that are already better and so many things to look forward to when I have recovered more, but it isn’t easy. It’s inarguably better but none of this is easy.

The funny thing is that going into the surgery the only thing we worried about was the kidney working. Nobody had told us to expect any other problems. We were of course anxious that it might not take or it might not function effectively but my kidney started working well straightaway; it was the rest of my body that struggled to catch up.

I spent the first nine days in agony. I won’t sugarcoat that. It was very, very painful and confusing because it wasn’t the pain or the problems I had expected. I wasn’t prepared. Nobody had warned us. And although the doctors assured us it wasn’t unusual, it was scary and we hadn’t had any warning. And their instructions are ambiguous at times; generic directions to get mobile as quickly and as often as possible didn’t actually mean I needed to force myself into painful hunched laps of the seventh floor wards several times a day. One day I’m told to match my fluid input to my output, the next to limit my water intake, the next to drink as much as I can; over three litres if possible. Sometimes you get contradictory advice from different parties. It is hard.

The days are long and start early. There’s a battery of pills to take at very specific times and in very specific orders. There’s long waits in uncomfortable chairs for clinics every single morning. And a return to the dark, cold motel unit that is our home for this transition period. It’s hard not to feel a little trapped and isolated sometimes. Both by the space and by my own body’s limitations. It’s difficult to feel energised and enthusiastic and ready and then to crash and burn, lying curled up in bed and trying not to keep the very small amount of food I managed to eat. My appetite has still not returned. The week of not eating after my surgery has shrunk my stomach to the point where everything I eat feels like it wants to come back up. The medications I am on to prevent rejection don’t help the nausea or indigestion. It’s exhausting feeling ill like that most of the time and it isn’t helped by trouble sleeping. I am homesick. At times a little desperately. And though I am well practised at patience, right now I am decidedly impatient.

I am a very driven person. Determined, competitive…. possessed of almost scary willpower and discipline. Which has sometimes been detrimental but in this instance helps a great deal. The doctors are impressed by my consistency, my commitment to the diet and routines we ideally should be following, my understanding of the requirements needing to be fulfilled to keep this gift of a kidney as safe and healthy as possible. Before the surgery we were warned that it would be difficult to manage these things, that lots of people struggle. Tom told the team, it won’t be a struggle for Suzi. And he’s right. Strength of will is something I possess both naturally and that I have devotedly developed and it is proving extraordinarily useful right now. Except that I also have impossibly high standards for myself. I expect to be… well. Now. Immediately. Or very soon. And I am struggling a little with the fact that despite my iron self discipline, this is something I can not manage. My body has had a massive trauma and it’s not ready yet. It’s still trying to figure things out. And it’s dragging me back from where it is I want to be.

Anyone who knows me well knows I battle with situations outside of my ability to control. Every part of my life has been tailored to be as within my power as possible. I don’t think I’m a rigid person but I definitely prefer to know and understand what is happening so I can be as prepared as possible. It soothes me. It strengthens me.

But currently I’ll admit my body feels a stranger to me. One I don’t recognise or understand and one I am not prepared for, despite everything in the lead up that I endeavoured to research and learn. But there wasn’t enough information or there wasn’t the right information and everything is new and different. Very different. I feel out of control and ignorant as to what is making my body behave in these different ways. In some ways it is better. More resilient, faster to bounce back, it has increased energy, it is easier in many instances. In others it is confusing and strange and not quite where I thought it would be. Healing is a long process. Healing from this kind of trauma an even longer one. Getting used to new routines, demanding ones in a different way to the demands of my old one. Getting used to new medications, each with their own implications. Getting used to lifestyle and diet changes that are sometimes tricky and complicated and difficult to navigate. And on top of that my body is dealing with an altogether unfamiliar process; proper kidney function. It, and I, am not yet used to it.

And life doesn’t really let you have a moment to pause and reflect and adjust and cope. Life continues happening around you. Big things. Hard things. Things you again have little to no control over. You want both the capability to do more and the space to do less with life. But you keep on. Because that’s all you can do. Keep on keeping on, as the saying goes.

My journey has so far been ups and downs but I know I am extraordinarily lucky. Not only to have had the opportunity to have this surgery but to have had it go so well. The surgery itself couldn’t have gone more smoothly for both my donor and myself. Other issues aside, the recovery of my kidney has also been, by all standards, far surpassing average. It began working straightaway; it has already reached the top range of normal for creatinine levels (which measure kidney function; low is better) as a person with two working kidneys; every artery they attached (and I got to listen to every one pumping blood through) is clear and functioning beautifully. I work hard to help it in every way I can but I am also lucky. A friend I have made here at the hospital, Refiti, had his transplant at the same time as mine. We waited in pre-surgery together and then spent the night in ICU afterwards lying a metre apart and talking all the way through. His kidney came from a cadaver and it didn’t work for ten days. He had a transplant but still needed dialysis. Even now, three weeks later, his creatinine levels are 230. That’s almost as bad as mine were pre-transplant (though as you know the main issue was not my failing kidneys but my electrolyte dumping). I feel almost guilty that I struggle so much sometimes with this all, when I am also acutely aware of the extremely fortunate position I am in.

Mostly I am doing well. And I am excited and happy and so eager for the future it’s almost impossible to contain. There are already so many positive changes in myself and in my life. I am lucky. So, so lucky. Lucky to have the support I have, lucky to have the family and friends, lucky to be here in New Zealand, lucky to have this kidney.

I could not have got this far without these things and I am grateful every day. They (and you) are important to me. They (and you) are necessary to me. They (and you) are the greatest blessings of my life.

I am lucky. Life is hard, but life is good.

The title for this blog post comes from one of my favourite poets:

“Be easy. Take your time. You are coming home to yourself.” – The Becoming, Nayyirah Waheed

And if you do want to help my recovery financially the link for my Givealittle page is here:

https://givealittle.co.nz/cause/savingsuzi

So This is Where the Fear is

It is a beautiful day. The sun is out, the sky is blue, it is warm. It feels just a little like spring and I am trying to remind myself to enjoy it. The last few days have been a bit manic. I have barely taken a breath. I have hardly sat down. I have had trouble sleeping. I thought I was fairly organised but there were so many things that couldn’t be done any earlier than last minute. For an obsessive, control-freak perfectionist like me, planning and packing has been a marathon effort and this final week has been a trial. But now we are here; everything that can be done has been; anything left undone will have to go to the devil.

My room has yellow check curtains in that relentlessly cheerful shade peculiar to public institutions, and an unexpectedly beautiful view to Rangitoto island. I can see boats pulling in and out, the cranes working away busily at the port. My nieces and nephews always call them giraffes. The giraffes are eating their fill today. And here we are. This time tomorrow I will be out cold on an operating table. Up until this point the whole transplant thing has been an intellectual exercise. It feels quite surreal to be in this place, waiting for the morning to come. I almost can’t believe it will happen. I have waited such a long time. But now we are here and it is happening. I’m scared.

Sometimes I feel ungrateful or unworthy when I say that. As if I only deserve this if I can be brave and stay positive, if I don’t waver from the persistent and overwhelming belief that it will all be ok. And I do believe that. I really, truly do. And yet, I am still scared. The thing is, through all of this, I’ve learnt some things. Really important things. And I thought maybe this last post before my surgery might be the place to share them.

Firstly; I have learnt that bravery isn’t mindless faith. This. Is. Scary. Anyone who understands the procedure understands there are very real and confronting risks, both before, during and after the surgery. Recovery will be tough. Side effects are tough. What comes after is permanent and the treatment is for the rest of my life. Only a fool wouldn’t feel fear in this moment. But feeling fear isn’t the same as letting it control you. I let myself feel it, let myself acknowledge it and express it. And then I don’t let myself become mired in it. That’s the lesson. Secondly, I’ve learnt that resilience doesn’t neccessarily mean bouncing back to where you were before. Sometimes it means surviving, or adapting to a new normal. To move forward not backwards. Resilience is a test of your ability to accept and work with change when it happens; to make a difference when you can and accept when you can’t with grace. Resilience isn’t pretending that the hard stuff isn’t hard. This is hard. Even if everything goes as perfectly as possible, it will still be hard. It’s painful and messy and difficult to control and they are all concepts I find hard. I don’t like messy. I don’t like not being in control. But, and here’s my third and most important lesson, engaging in the full range of experience – living and dying, love and loss, sickness and health – is what we get to do. Being human doesn’t happen despite suffering; it happens within it. Even as the last decade has passed without a great measure of outward growth or measurable success, my inward growth has been prodigal. All of the ways in which this illness has tested and proven me, stretched and battered me. Here I am; scared and messy, resilient and strong. Here is the fear; and I am no less worthy for feeling it. Fear is not weakness. Fear is not failure. Fear exists to remind us only that some things are worth overcoming. And here is my overcoming.

I want to say thank you. For coming with me. For facing it all beside me. When we approach suffering together, when we choose not to hide from it, our lives don’t diminish, they expand. Today my life feels wide open. The outpouring of love, support, positivity and faith from friends, family and my wider community has been overwhelming and incredibly humbling. You wonderful people. How lucky I am to have you. It is… I have no vocabulary to describe how it makes me feel. Buoyed I guess. Uplifted. Made bigger by the love given to me. Made stronger by the people holding me up.

I am grateful beyond words. I am moved beyond measure. I thank you from the bottom of my heart.

Tomorrow is the day my friends. But it’s also only a day. My story extends in both directions to and from this point and though it is momentous, the truth is that it’s just one dot on the map of my life. A life I hope holds many, many more. Every day from this day I hope I can make meaningful. Every day from this day I hope I can make worthy of you all, worthy of this sacrifice, this love, all this belief and faith, support and strength loaned and given to me. It’s a gift, this life; this phenomenal, beautiful life. A gift made better for giving. Mine is better for yours.

The Unquiet Mind

Today I stopped breathing. My eyes lost focus, my hands went numb, my skin felt clammy and hot. The whole world spun in dizzying, terrifying motion around me. It felt like I was drowning and suffocating and being buried alive all at the same time. It was excruciating and disturbing and utterly inexplicable. 

I was having a panic attack. I knew, at least, from past experience that that’s what was happening to me. But it had been a while and it left me shaken, sweating and with a dry, sickly taste in my mouth like I’d been chewing on sawdust.
These days I spend a lot of time and energy on developing and practising behaviours and thought processes to limit my anxiety and stress. I’m not exaggerating when I say that it’s as demanding as a full-time job and as necessary as sleep. In fact, sleep is an important part of my well-being arsenal. I’m saying this because I think it’s important to acknowledge that there’s not always a cure for things; sometimes there’s only a treatment. There might be medications or meditations or conversations that make things easier to understand and bear and we should make the effort to share our hard-won experience of what works for us in case it helps someone else. But it’s a treatment, it’s mostly not a permanent fix. For me that treatment is an every day commitment, one I practise with devotion because it protects and sustains me. I want this to be talked about. I want this to be normalised. I want this to be accepted. I want, desperately, for this to be understood. I am better, absolutely, but I am not “cured”.

I’m also saying it because I am, despite having had years to get used to it, only just realising that my kidney transplant is the same. I have spent so much time planning excitedly for the future, and everybody we tell is excited and expectant for me too. But I seem to have skipped over the comprehension that this surgery is also not a cure. Even if (when…) my surgery is successful, the rest of my life will involve a battery of medications as critical and necessary as my daily devotions to preserving and maintaining my mental health. The internet is a dark and twisty hole of stories about the impact and side effects of these miracle drugs. And that’s not sarcasm; they really are miracle drugs. But even miracles (maybe especially miracles) come with sacrifices. I will have some significant adjustments to make. There will undoubtedbly be sacrifices I need to make.

I don’t want this to come across as negative, pessimistic or ungrateful.
I am fortunate beyond anything for so many different reasons. I am so lucky. I am so blessed. I am deeply, unquestionably, excited, happy and hopeful.

Ah, but I’m scared you know. I am, quite honestly, bloody petrified. And I guess I want to say that out loud and to acknowledge that that’s ok too.

The title for this post comes the Napoleon Bonaparte quotation: “The best cure for the body is a quiet mind”. A little harder in practise than in theory mate.

The Miracle of Existence

There’s pathos in the everyday, the familiarity of our routines, in the way the toaster clicks as it cooks, the whistling of the steam in the kettle, the sounds of the morning in the low level hum of the day beginning. It’s already clear to me how much of life is forgotten even as it happens. Most of it. The unregarded present falling away from us, the soft tumble of unremarkable thoughts, the long-neglected miracle of existence. When I am no longer twenty-nine and longing and insubstantial and beautiful, or ever quite as young as this moment right now, I won’t remember the way I stir the porridge and the sound the spoon makes on the thick bottomed pot, the feel of my boyfriend’s wool socks slipping down my bare legs, the gentle warmth of the winter sun melting the frosted grass, the steady heartbeat of the city in the distance, a short burst of birdsong by a closed window. All gone, already. The moment has passed and I am older now, then. We let so much of our time disappear disregarded; as if the momentous is all that counts. Only these in-betweens are what make a life, and what define a person. The million small ways in which we feel gratitude or display compassion or show integrity. There is a sense today that the ordinary is unremarkable. Brené Brown wrote, “in this world, an ordinary life has become synonymous with a meaningless life,” as if these moments of ritual and routine can not add up to something beautiful. As if we must be extraordinary to matter. But it all matters. We all matter. I try to be aware of the sensations I experience, the world I inhabit, the sweetness of my ordinary life, the satisfaction of being. Any moment, any action, has meaning if we give it such. I have wished whole years away in hoping for more. I swore I wouldn’t ever again.

When people ask me how old I am, sometimes I want to tell them a decade younger. Because that’s when I stopped. That’s when my life was put on pause and my upward growth halted. My twenties were a ghost decade. I mean, I lived them. Things happened. Good things. Bad things. Things that were neither or both. Years passed. I undeniably grew older; I can see the evidence of time scraping its nails into the soft skin around my eyes, in the white hairs appearing on my partner’s scalp. A recent scan of my bones, my hip, my spine, show them to have aged beyond even my actual age. They are hollowing out like bird bones for the moment I launch into flight. I forget more. I worry that fact around like a ferreting terrier. Do I forget because I am tired? Because I’m in pain? Because there’s too much going on in my head? Or because I’m getting older and my brain is getting weaker? I used to be quite dualistic: my mind and my body were two quite separate things, the broken flesh just a vessel for a superior brain. It didn’t matter so much if it failed me in form or function; after a twisted and obsessive pursuit of physical improvement that haunted my teens, I thought I had reached a much healthier perspective. I divorced all connection between the body I walked around in and the thoughts that drove it. Like a vehicle, I did my best to fuel and maintain it. I respected its abilities and trashed its shortcomings without any real sense of belonging to it. But I was mistaken. Just as my mind sabotaged my body, the illness I have battled so long infected my mind. There is a profound and complex interrelationship between them, and the years that I’ve spent living in one at the expense of the other have proven to be more than problematic. The brain and peripheral nervous system, the endocrine and immune systems, and indeed, all the organs of our body and all the emotional responses we have, share a common chemical language and are constantly communicating with one another. My frustration and unhappiness with my faulty physicality made me feel like a soul trapped in a skull and rib cage. But I have realised that my thoughts, my will, my feelings, have a measurable effect on my health and body; and in reverse, my health has a meaningful impact on my happiness and resilience levels. As I look forward to the future post-transplant, I’m more aware than ever that I am a whole and that the whole of me is more than the sum of the parts. Even an organ short. I am only myself; but I am trying to be always and more completely myself.

And the funny thing is that I have spent a decade waiting. Thinking. Observing. Researching. Analysing. Dreaming. The cerebral side of life taking precedence, a response to the physical limitations imposed by my weakness but worsened by my need for understanding, for control. Now my plans are full of doing, making, being. I will be well and the things I long most for are the things that move my bones and stretch my muscles; the snip snap of tendons and joints creaking into place. There are mountains to climb, cities to wander, babies to bear, people to hold. The physicality of life and living, love and loving. The ways of expressing my inner world in action that I have been denied so long. 

This is a strange period of time. This almost time. All this imminent change is coming but I’m not close enough to anything definite to prepare for it. I feel like I’m in an adolescent waiting zone. Where there’s a sense of the future I’ll have, yet so much is still in flux that it’s angsty and confusing. Sometimes I feel like I am an almost person waiting to be an actual one. But I am here. I am already living. I am young and I am old and I am body and I am mind. In the poetry of my tea leaves brewing in the pot and the breeze spinning the sheets on the line in swift dizzying motion, in the speaking magnitude of insignificant, everyday things, in the cells that die and the hopes that grow, I live.