Blown Through the Air

Falling asleep in the air, surfacing in San Diego, creepily hot in mid winter. The garden is confused: fruit trees blooming, lettuces wilting, chickens discombobulated, facing with befuddlement the question: To lay or not to lay today? today is it winter or is today not winter not today?

Leaving Australia as temperatures climbed over a hundred degrees. On the East coast of the U.S. in grubby smouldering cities where only sometimes snow flitters fitfully across the landscape there are four inches today.

Wild fires are breaking out in Australia and in California. How wild I wonder? Raging yes, but unrelated to the domestic?

It’s a bit like sex in the grass, breakfast in bed, says J, it sounds like a splendid idea. Nevertheless he brings me a tray with coddled eggs (Holly’s eggs: Creamy saffron yolks) demure in pastoral china, and a slice of toast festooned with two thick slices of Fat Dave’s bacon. Succulent, salty. Lula Mae stopped laying this week, the day that Holly started. They coordinate the rationing of human pleasure.

I have been a trifle chookless while travelling. Though In Hawaii at Hanauma Bay where I went snorkeling there were wild chickens on the beach. Not very wild, wild once perhaps for a while after escaping domesticity, now semi-naturalized on the beach, not exactly cuddling up but certainly making do quite well with peckings and pickings from human picnics. In Austinmer, on our way down to the beach for an early morning swim, Sarah took me by some chickens to whom she ritually throws her apple core, broken into pieces. In Melbourne each morning I would let Helen’s chickens, making an almighty ruckus as soon as light filtered into the world, out of their coop. After I left and temperatures soared she put ice cubes in their water and posted photos of them sheltering under the shade of the lime trees. And an image of the dog standing, just standing motionless, in the heat in the fish pond. Dazzle the water nymph, wrote Rosa.

So much to do. Pruning in particular—fruit trees, roses, grape vines—and searching for missing library books, buried under dust and piles of other books and mountains of accumulated fines. There is one I cannot find, Notes of a Native Son. I had begun to think of this book as mine I’ve had it so long, renewing it each year. Perhaps someone nicked it, or I left it somewhere like at the hospital or perhaps it has gotten mixed up with gardening books, I’ll check again today. Or perhaps not. When a book goes missing this is usually what I do: buy a replacement cheap and take it into the library, mock-mournful shame-faced, and the nice librarian Jimmy always says, you know we don’t do this you have to pay the fine on-line, and then he takes the book I offer and looks it over, quizzical, as though it’s a novelty for him and a vaguely wondrous event, to hold a book in his hands. And then he says, OK, this time, but it’s the last time. But this time I feel in my bones that eventually James Baldwin will turn up at home and I shall keep him, or it, that library book that has spent so many hours in my hands, made grubby with breakfast stains. After travelling with a kindle, its lightness—while in motion—has now become unbearable, hence this compulsion to pay the fine, as though then the book will materialize. Partly through superstition (paying the fine will magic the book into the world again; but also via an irrational though tenacious inkling that my heroic fine will keep the doors of the library open) I bow to institutional punishment; but I also bow down in homage to the world of books, of solid three dimensional sticky objects that sometimes carry you away on a fluid flowing stream, a river into which you can dangle a foot and despite what the philosopher says you can return and do it again and again it is the same river, you can find yourself again, albeit differently. Like Inside Llewyn Davis which we saw last night. That gasp of recognition as he encounters the man in the suit in the alley again, or is it for the first time, or the second time, and gets his balls kicked in. You think for a moment it may turn out differently, better.

In homage too to Baldwin. How he manages words and how they correlate or not with feelings and how feelings infiltrate and stoke the fire of politics. The fire. “Stranger in the Village” is, at any time and in any place even though of course time and place are specific and matter, an extraordinary essay, in its evocation rather than description, of what today is endlessly in so many contexts called “otherness.” A fire that burns through thickets of sentiment. Exile: what does it feel like, where does it feel, how to think it?

In Australia there is much provocation to think of exile and asylum. Thousands of asylum seekers confined in Detention camps, on and off-shore. One government after another, Labour included, passing the buck. A sticky sensation of guilt and shame adhering to my Australian passport.

But this sensation was not everything. The Australian sojourn was simply marvelous: a passport to pleasure. It came at the right time: Bondi Beach in summer, Fitzroy street, friendships renewed, gardens native and otherwise to walk in, long conversations, spicy Asian food, the bats the black bats swooping through an indigo sky, all this worked better than any drugs.

I got better and better. But was blindsided by others getting iller and iller. I guess this happens when you are away and return and see how everyone is older and not quite as young as we all once were. I felt a niggling sense of shame that I—who make such an habitual hue and cry about not-being-well—should be so well when others all around me were teetering like skittles, battling with demons of pain and separation, incomprehensible medical diagnoses and imminent death. I remind myself: there is no hierarchy of suffering. If I write in order to combat the feelings of isolation and uncertainty that chronic illness can foster, I write for other reasons too, some merely neurotic, some to do with the pleasure afforded by any addiction, and for some reasons (though reason seems far too grand a concept) to do with a sense that putting into words this thing called illness (yes I call it thus even though there are therapeutic regimes that advise rethinking it as “wellness opportunity”) produces a materiality, albeit chimeric and diaphanous, something that can spark recognition, something that can be passed from hand to hand, blown through the air or kicked from one place to another.

Well, that’s the hope.

I had an immunoglobulin infusion the day after returning, blood tests still looking good, feeling fine, but of course it’s a just a matter of time before the symptoms return. Kipps asked me if I’d finished the book. I think he does not know what a holiday is. Lucky for me he works so hard. As expected the ball is in my court, but the choice is more clear cut than often: Continue without drugs for as long as six months if this good runs lasts that long, or start back on a low dose of revlimid with or without the ritoxumab. Certainly I would opt not to do the combination. Too many infusions and all the stuff that goes with that. But Sheila, wonderful Nurse Sheila, said that it would be possible to do the revlimid off-protocol so I wouldn’t be tied down by endless testing and could arrange labs with her and be able to travel. It’ll cost something but not a lot. The simple truth is this: I don’t want to think about it now. Am going to put it off for a month but then will probably opt for what Kipps sees as a pro-active move and the possibility of staving off the next big treatment for longer.

In future posts I will sketch some vignettes of this Australian escape. For if obsession is potentially curative so too is travel. Obsession narrows the gaze and travel expands it. Though they are not as antinomous as it might at first appear. Travel, good if you can get it, is a way of interrupting and shaking the quotidian. Recharging and reshaping.

I take heart from Pamela Brown, ironically wry and curiously lyrical. In her latest book of poems, Home by Dark, which she gave me over cups of tea in a café at Edgecliff station, she writes

 Like Michael said,

Now we’ll spend

The rest of our lives

Watching our friends die

But, and elsewhere, she also writes

 This is my quotidian

But it’s not everything

Some Musings on Metaphor

A good month, June. Feeling considerably better, with miles more energy. It has been amazing to look at the print out of my labs the last few weeks. Bloodwork shows much improvement, many items that were flagged too high or too low have settled into the normal category. Looking at the results each week (they come up on the computer a few hours after the labs these days) is like watching a soccer ball, soaring in slow motion, peeking and then descending. Hold your breath: where will it land, inside or outside the line?

My white blood cell count fell into the normal range fairly soon after starting treatment. But actually there are many kinds of white blood cells, and there are at least two kinds that are crucial indicators for CLL, or since each case is idiosyncratic let’s say for me at the moment. My neutrophils are slightly low – most likely induced by the revlimid. If they go much lower it means likely neutropenia (when you are dangerously at risk of infection, when you have to eat only cooked vegetables and fruit, wear a mask etc …. everyone probably knows someone who has had cancer and endured a period of neutropenia, induced by the chemo) but so far very borderline. Then there are lymphocytes. In the last month the absolute lymphocyte count has normalized. Marlene Millen, my primary care physician, said no wonder you are feeling better, when your lymphocyte count is up its like you have a constant virus, you are fighting it, day in and day out. My first reaction was Whoa, what would you know what it feels like. Stick to science, doctor, don’t presume to tell me how it feels. A flashback to hot flashes and the gynecologist (young, compassionate, efficient, female) who said, just think of it as a normal part of life, everyone gets hot, I get hot sometimes, and I just take a deep breath and drink some water and it passes. Well bully for you lady, may you wake one day in your best silk blouse suddenly sweating swinishly as you address a room full of bright-eyed and bushy tailed gynecology students. A moment ago they were hanging on your every word, now their eyes are fixed on the sweaty stained blouse clinging to your breasts. But Millen is not that gynecologist. She is tough and vigilant and frank. She is also a go-between, mediating between the various specialists I encounter, ping ponging from one to another. She was the one who really kicked me into treatment the first time. Listen, she said, Kipps will always say “it’s maybe time to start thinking about treatment, here are the options, of course it’s your choice.” “But I’m not Californian,” says Millen, “and not afraid to cut to the chase. You have put it off for long enough, and now you are saying well I think I’ll wait a while. You really need to start treatment NOW.” She must be about half my age, but she calls me “Sweetie.” “Well done Sweetie,” she will say when she thinks I have conquered the denial impulse and recognized some danger signal and given her a call. I find it very endearing to be called Sweetie. Bitter sweet like the Jane Campion movie.

Friends are curious and always asking: what is it like? Much of the time we look quite normal, when you go the CLL support group you might think you were in a room of perfectly healthy people, the swollen lymph nodes and spleens are not visible, nor the haywire white blood cells, cavorting platelets, nor the havoc being played in bone marrow. Nor the sense of utter exhaustion and fluishness. People often say to me “how are you? You look great!” On bad days this can be a trifle irritating, because typically they ask a question and answer it themselves, pronouncing you well and fine. This was a refrain after my dance with death just before our Boxing Day party, though on this occasion not in the least irritating. Boxing Day is the day after Christmas and this last year it was also the day after I came out of hospital. The cause was an infection that went haywire over night, landing me in the ER. Four nights in hospital and then I was fine, immensely relieved, and we went ahead with our Boxing day tamale party. Teddy Cruz gets the most delicious Guatamalan tamales from a source he refuses to reveal. They are wrapped in banana leaves and steamed. Unwrapping is at once a delaying mechanism, a stringing out of anticipation, and a process of revelation. As you unwrap the smells start swirling, not just one smell but many. The masa (or corn dough) inside the banana leaf wrapping is in turn wrapped around the filling—pork or chicken—and a sauce that is beginning to ooze out so you have to lick your fingers to get a taste of what is to come. You pause, fingers in your mouth, imagining. And then you break into the tamale. Inside there is pork and a piece of fruit, and even though there is a melting moment flavors are distinct—sharp, sweet, meaty. You scoop a bite of tamale into in your mouth, and enter heaven.

I have never met this woman who works in her kitchen at home and conjures these magical tamales into being. Teddy is the go-between. But I do know something about her. A week before Christmas her husband, who had been living and working in San Diego for years, was walking along the street not far from our house when a Homeland Security van pulled up and stopped him, requesting his papers. He had none. He was pulled into the van and deported from the country.

Although I sometimes find the “you look great” refrain irritating, receiving it as vacuous routine politeness, actually I know that when people say this they are more often than not performing an act of sympathetic magic: they are wishing that all is well, they want you to be well, they want to believe that everything is fine. And you participate in the performance. You are relieved to be alive and want to look as normal as possible. On Boxing Day I was particularly glad to be alive and celebrating. But the scary thing is the knowledge that it could be something like this that will take me out. Most CLL deaths (because CLL is a disease of the immune system) are from simple infections that flare up quickly and can’t be controlled. This is what Millen has always been trying to impress upon me: be alert to the signals, act immediately, don’t be so cavalier. She was pregnant and on leave when this happened, but when she came back she said, “Well done Sweetie, you got yourself to ER in time.”

Millen offered the metaphor of living with a virus. There is an aptness to it, it’s graspable, something one can offer to others. Kipps offered another. After my first treatment I said to him It’s like a miracle. I had no idea how awful I had been feeling. For years. This is the real normal and it’s a great sensation! Kipps said many patients say exactly the same thing. And he offered a metaphor: it’s like hiking up a hill with a back pack on your back. You start with a few pebbles in your back sack and after a while you add a few more, and then after another few miles the gremlin at your back tosses in just one more stone, but this one is a little larger, heavier. And so it goes, and as you climb you accommodate to the weight and the difficulty, and you come to imagine this as normal.

Rather than being affronted by Kipps’ simile, or his presumption in describing my sensations, I experienced a surprising sense of gratitude. His image was not exactly intricate or poetic, and certainly far from scientific. Perhaps though this is precisely the key to understanding how it works. How a simple metaphor describing an illness can spark delight. Why, I wonder. Clearly, on one level it’s because of recognition. It offers a mirror image, a confirmation of identity. Thus, it might be argued, it doesn’t do much to shift anything, simply confirms the way things are, the way you feel. And although I hate the kind of feel-good triumphalism that validates every feeling as evidence of self-worth nevertheless I think there is something crucial that happens when the language of medicine or science is blurred by the poetic impulse of metaphor. Many illnesses, particularly chronic ones, as well as many psychological states, are isolating, for the patient it’s hard to situate what they “feel” as anything other than ultra-personal. There are times when you think maybe it’s all in my head, or maybe I am inducing this illness because of the way I feel. So to have an image flashed up, from elsewhere, from someone else, that is evocative and feels accurate – this is like getting a hit of immunoglobulin. You want to shout out Yes! That’s it! Something surges through your system, is energizing, and it isn’t a drug. This kind of metaphor differs from the destructive metaphors that Susan Sontag so brilliantly described in Metaphor as Illness. Metaphor literally means a bridge between two things, two words, two images. The more unlikely the linkage the more powerful the metaphor, and the more it can be spun out the greater its capacity to inspire intrigue and wonder. But in addition to confirming the way you feel, metaphor has the potential to perform an intricate dance of difference. There is always that space of difference, of something incommensurate that stretches between the two unlikely images. A patient is and is not a hiker. In that tension, in the surprise, in the fact that the image flashes up from elsewhere – it is in this process that metaphor has the capacity to open your eyes, to introduce not just sameness and recognition, but newness. The drugs serve to lighten the load, but words too.

Newness and surprise are great medicines.

Much of the time I swim through Kipps’ language, feeling an idiot because I haven’t done my homework and there is still so much I do not understand, and sometimes despair that I ever will. And there’s not much time. And how will I ever make the right decisions about which therapy if I’m so clueless? He has a lot of patients to see on this one day of the week when he isn’t doing research or flying around the world talking about CLL. Often I call up Sheila Hoff, our CLL nurse and case manager, and she patiently spends hours going over it all, translating, helping with decisions by giving examples, and always she says, think about what kind of a person you are, how you want to live your life, which treatment will suit you best. Or I turn to a patient advocate site on the internet, like that of Chaya Venkat. Sadly she has announced this week that she is retiring. Her husband died of CLL. Though not a medical doctor she is a science writer and she started the site (http://updates.clltopics.org) to link her husband’s journey with others’, to mediate between the scientific community (and scientific language) and patients. For twelve years (eight while her husband was alive, four after, by herself) she has done a quite amazing job as a patient advocate, and as a magician of words. Understanding the language, yes, but something more. Finding the words. Saying the words. Her retirement blog is very poignant.

When I was looking for good crime novels (when not?), the kind you can lose yourself in, Patricia Montoya, my friend and neighbor (who has herself recently been through hell, survived a rough stem cell transplant, now back for the summer in her bitter-sweet home, Medellin), suggested I read Tijuana Straits. It’s a surf noir novel set primarily in the Tijuana River Valley, the area that stretches from Imperial Beach in the northeast corner of the Valley (and the US) along the border with Mexico. Twenty minutes from where I live. It begins in the Estuary, with the main protagonist whose charge is protecting certain migratory birds (most notably the western snowy plover and the light-footed clapper rail) discovering in the early morning dawn a woman in distress, who seems to have crossed by an illegal route where the border fence cuts the valley in half. Kem Nunn evokes the area vividly: the crashing surf, the Lighthouse in Las Playas on the Mexican side of the fence, Yogurt Canyon, Smuggler’s Gulch, the routes through the Valley on this side – Monument Road at the edge of Border Field State Park, Hollister Drive, Dairy Mart Road – and the maze of dirt roads and horse trails. I started reading the novel after a particularly hairy infusion, and experienced a peculiar delight in recognizing these places, even seeing these names in print, saying them out loud. There is the comfort of familiarity of course, but also there is always a slight, maybe infintesimal, mismatch between the image offered and your memories. There is a pleasure in puzzling out how the images cohere, form a landscape, in imagining even when you can’t be there. Nunn wrote this novel shortly before Homeland Security hacked into the landscape in 2003 so brutally, demolishing a mesa, filling in a canyon and building a new, second wall flanked by a perfectly asphalted wide road, a road where no one drives except the occasional border patrol vehicle. So sometimes he describes a landscape I hardly knew, and I try to conjure it, ripping out the new steel fence, and the asphalt road, and restoring the canyon in my mind.

You picture and imagine a landscape, a configuration of space shadowed always by various histories, some quite personal others social, unfolding oblivious to your personal existence. It is like this too with simple metaphors, thrown up in the haze of misrecognition, when you do not know how to make sense of this place where you find yourself.

For me the Boxing Day party was a celebration of being alive, of having escaped again, of friendship. The house was packed, the air was festive, people drifted in and out of the garden, unlikely people became entranced by the chickens and entered into chicken conversations. The tamales, however, as well as being delicious were a reminder that cancer is a card you can carry, it’s like having papers, if you are lucky enough to have medical care people are basically on your side, they want everything to be fine, they want you to be well. Of course you live with the fear of sudden, or slow, death. But as people who have cancer and Buddhists and even total strangers with whom you strike up a conversation in the long queque at the pharmacy remark: we are all going to die, death is a part of life, and anyway who knows you might walk under a bus tomorrow. True no doubt. But it is also the case that many people in this country live without any papers at all, let alone a cancer card, and they live in real and daily fear of a chasm opening up when and if the Homeland Security van pulls up one day as they stroll to work, to the shop, to neighborhood park.