15 July 2014


There is a new chocolate place at home—the Wellington Chocolate Company—where they roast their own beans and make them into single varietal bars like wine, listing the vintage and the origin of cocoa beans. This would sound naff, except the Madagascar beans (crop of 2013) taste so deliciously of raspberries that people at first don’t believe that there aren’t raspberries in the mix.  But no raspberries—just Madagascar beans and sugar, a treat worthy of the woman who has changed her diet in the hopes of keeping cancer away forever.

There is something very apt that the one dessert that is recommended for those of us who are trying to make our bodies cancer free zones is bittersweet chocolate. Here, at the end of the most aggressive part of my cancer treatment, I am coming to see that bittersweet is everywhere, not just in my chocolate.

I’ve noticed that one of the ways I can place an event in time is to go back in my memory and taste for a single feeling, unalloyed with others. Single varietal emotions are circa 2013 or earlier.  I picture myself somewhere, laughing or chattering or serving a client, and if it doesn’t have the ribbon of sadness in it, it happened before cancer. And it’s not that I wasn’t sad before—I was, and I was also sometimes joyful or grumpy or irritated or delighted. It’s just that now emotions seem to arrive pre-fused with others and I cannot un-fuse them. Every surge of delight has, in the back of it, a small keening sadness. This joy will pass. And each dip into misery has, to lighten it, a sparkle of gratitude for just being on the planet and feeling anything at all. This sadness will pass.
Today I am in paradise. I, who have been wearing merino beanies day and night to protect my baldy head from the freezing winter back home, have just now brought my sunburnt ears into the cool air conditioning to escape the heat and the sun outside. Yesterday we tried scuba diving for the first time; this morning Michael and I had a massage. This is a very very good life. I watch myself feeling a surge of joy and then the sharp kick of sadness. Happiness lives always with her sister Sorrow who reminds me of the fleeting nature of these breathless days. This holiday will pass. Those turtles will pass. These kids will grow up and move away.  And it isn’t that I’m searching around for the sadness or that the pathways of misery are so well-worn that my wheels find the sad rut in the road. It’s just that it occurs to me as fundamentally true.
In this moment, in every moment, we have a fractal of all that life has to offer. It is a tangle of sound and feeling and sensation; it’s a wonder we can ever focus enough to love or laugh or work. Cancer has tuned my ears to hear more of the cacophony than I used to hear, and sometimes I long for the single pure note of bliss or ease. I notice that I do not long for the single note of sadness or despair, and perhaps that is one of the brilliant gifts of this time. Cancer could be cruel and send me into misery, but instead it has been kind and has woven rather than unstitching. If it doesn’t let me feel joy without sadness, at least I am so much less likely to feel sadness without joy.

Each morning I look in the mirror and am grateful for the ever-fewer eyelashes and the disappearing eyebrows. My nails are starting to loosen from the nail bed. Chemo has not quite finished its great removal process. Here I am grateful for the sweetbitter feeling as sadness washes over me. I am the only bald woman here, and heads turn and children point as I walk through the dining room (and not because I am a great beauty or wearing a particularly smashing dress). But this too is fleeing.  My eyebrows will come back. My hair will grow. My hotflashes will decrease. I will return to my rightful place of an ordinary middle aged woman in a crowd of young families and honeymooners, no head turning necessary. But I am not looking to speed towards that time, because that would mean giving up the delight of this moment. I’ll take the beauty and the ugly woven together and wrapped in my head scarf.

The Madagascar Dark from the Wellington Chocolate Company is 70% bitter cocoa beans and 30% sugar. It is just the right blend to bring the raspberry chocolate tang to the front of my tongue, and an almost burnt bitterness to the back. I wouldn’t want those proportions of bitter and sweet in my life at all, but the result of it—the mix that brings out the full roundness of the flavor—is the point. Maybe the loss of the single emotions is actually a singular gain.

10 July 2014


Maybe the key thing you learn when you’ve been travelling for 30 hours, mostly over some or another ocean, is how vast water is. And maybe the key thing you learn when you’ve spent the last six months in treatment for cancer is how fragile and ephemeral life is. These two ideas are somehow beautiful next to each other.

We have reached the light at the end of the tunnel. These hours on planes and in airports are the final passage to Next, to the pause, the in-breath between the last six months and the next chapter. Michael and Aidan and I are coming from the east, from our wintery island in the middle of the South Pacific, and Naomi is coming from the west, from the mind-blowing trip she’s just had at the Global Youth Leadership Conference in Vienna, Prague, and Berlin. We facetimed from airport to airport—we were in Singapore and she was in Qatar. We will meet at the Male airport and get on a sea plane to an island one mile long and a couple of hundred yards wide, a patch of sand to rest and reconnect and regrow. Life feels magical.

My sense of the passing of time has shifted now that I’m out of the grey chemo and back into a technicolor life. No longer am I counting down the days, unfolding each morning’s poem with the double delight of opening a beautiful poem and also closing another day. My mind is rejecting the idea of wishing this time would pass more quickly. Even this travel time is to be savoured. The first flight to Melbourne, Aidan quivering with excitement, the kind Qantas steward sad that I wouldn’t eat the dinner they offered (a choice between pork and beef, but I still haven’t been able to bring myself to eat mammals). Our six hour layover where we set off into the dark and cold Melbourne, dragging our suitcases behind us, to eat mediocre sushi at what was clearly a popular university gathering place, the howls of laughter from the self-declared “starving musicians” at the table behind us making each of us smile. The flight to Singapore, making my body economy class origami, folding around and over Aidan as we flew through the night to Singapore. And now here, high over the Indian Ocean, no land in sight, giggling as Michael surgically removed the objectionable KitKat bar from the otherwise palatable ice cream cone (for him—I stuck to the spectacular dark chocolate we brought from home). This time is to be savoured, to be loved, to be remembered. I will never fly for the first time to Male, never fly with a 12-year-old Aidan again.

What would it be like to live the rest of my life with this kind of attention to the present? And what demands does it make on me to craft the kind of life that is does not have days or weeks I want to race through to get to the good stuff?  What if we all believed that all of it is the good stuff?

Neither do I want to grasp, though. It’s easy to not wish to prolong the 5 hour layover in the Singapore airport, but it will be harder to not wish to prolong the magic of swimming with sea turtles, of the thrill of hearing for the first time as Naomi articulates the bigger world she is a part of after her trip. When I get too graspy for any moment of life, suddenly the fear of recurrence and death roar in. I get black moments of that out of nowhere, as Aidan rubs my ever-furrier head, as the sun dips into the sea, as Perry frolics into the hills, his ears blowing back in the wind. I want to freeze time, hold it, not have Aidan grow or Perry die or the sky turn black and cold. But all of these things will happen—and it’s good and right that they happen—and my grasping won’t extend their time for one moment; it’ll just make the moments I have less rich.

So this is my new practice, and it makes sense to go to a tiny island in the middle of the Indian Ocean to begin it. Here is one of the first countries in the world that will be drowned in rising seas; here the balance of sand and tides is always tenuous. Like each of us, with our loves and our fears and our hopes for the future. It is an ancient idea, so simple it hardly bears repeating, and so difficult that people have given their lives over to the practice of it: we live right now. We can mourn what we have lost, who we have not become, the pain or misery or injustice life has brought us. We can fear (or hope) for tomorrow, clutching at those things we don’t want to lose or hurling ourselves towards the mythical better future. But all of that distracts me from the only thing I ever ever have, this moment, which is right here at the back of a Singapore Airlines A330, my hair now a five-o’clock shadow on my head, my boy asleep in the row behind me, my husband’s leg pressed up against mine. The world is all lights, and all tunnels, and all thresholds from what was to what will be next.

Pictures today from the seaplane to the grey destination--magnificent and stormy, like life, really

04 July 2014

Hair today, gone tomorrow

I am on my way home.  Ten days ago I was delighted—and I guess a little unsettled—to be back on an airplane after three months of feeling tethered to Wellington. I moved through my old patterns in a tentative way—could people tell I was wearing a wig? Would I feel different? Was I strong enough to do the really significant press of work that was ahead of me? In the last ten days I have scaled a wall of interesting and difficult work, I have eaten beautiful food with dear friends, and I have begun to live into what it means to be on this side of the cancer experience.

One of the challenges of this time is that, as you know, I don’t have any hair (although more and more each day—a downy colourless fuzz now). I got used to wearing my wigs in the last two weeks before I went away—just to get my head used to the feel of it, the heat and the itch. But getting used to the feel of a wig isn’t the same as getting used to being out in public with it all the time. In two of the workshops I taught, the participants and I knew each other well enough to joke about the wigs—and I was comfortable enough with them to wear a different wig on the second day. Why have fake hair if you can’t have fun with it? It took me a little while to get used to the double takes, the puzzled look that broke into a wide smile, the teasing about how young I look in the Clare wig (and presumably how old I look in the Jennifer wig).

But it is still unsettling, a little, to put on my hair before I head out, to remember to make it even, to hold on to my hair in the wind, to hope that when I scratch it, my hair won’t list sideways like a scene in a Jim Carrey movie. And then there are the times when I don’t wear a wig at all.

Before I left, I had agonized about what I might wear in the fitness center. My walks with Melissa had left me in good shape, but scrawny me in workout clothes and nearly-bald head looked exactly like what I was: someone just barely out of chemotherapy.  Naomi and I decided that a silk scarf was a weird look for a gym and that wearing hot and itchy hair was out of the question. So I stuck on a beanie and headed down to sweat.

Notice the problem with that sentence? Beanies are hot—not exactly the feeling you want if you’re working out and you also have hot flashes (complements of my new daily medicine). And so, under the bright lights and surrounded by mirrored walls, I had to decide whether I was more into the look (keep the beanie on) or the comfort (take the beanie off). I took the beanie off.

Here’s what I notice about looking like a chemo patient in front of others, either strangers or light acquaintances: their eyes flicker to my head and then to the floor. In the gym, no one met my eye, no one smiled, no one said good morning.  The guy waiting for the elevator when I walked up suddenly wasn’t waiting for the elevator anymore (he looked at my head and at the floor and walked away—not sure whether my baldness reminded him of an exercise he forgot to do?).  All of this made me believe that we are, as a collective, really uncertain about how to deal with someone who looks sick. And I wondered, how would I have faced this if I had seen a spindly bald woman working out at the gym? What would my eyes have done? And what if I had been trapped in an elevator with her for 20 floors?

I am not sure I would have done particularly well myself. Now, I would look in her eyes and smile. “How are you feeling?” I might ask. “Love the fuzz.” It might be I’d get it wrong. Maybe she was bald by choice? But how many women do you know who are bald by choice? How many women do you know who have had chemo? (Melissa tells me your answer depends on your demographic.) All I know is that now I would err on the side of caring for the sick, for those who can feel invisible.

But I am a lucky one. I am rarely in places where I feel invisible. On a sparkling Sydney Sunday, I met a bunch of friends and we had brunch in the winter sunshine. We talked about death and sickness and aging and love and brownies and babies. We drank excellent coffee (which I can now taste) and laughed a lot. I swapped wigs half way through and let Anna feel my fuzzy head and squeal with delight. I am awash in gratitude for my friends, for my family, for my life. It is almost worth going through chemo to know how spectacular it is to not be in chemo anymore. I am stronger and healthier than I was when I began writing this entry. I love being alive.

 (Pictures today: Dawn over the Opera House, Naomi at breakfast on a layover in Sydney on her way to Europe, dessert over the city, some of the friends from my brunch)