The second instalment of Peter Wells’ diary of life with cancer, republished from his private Facebook with permission.
December 12, 1:56am
The humility of my condition. It’s only when I approach the cancer clinic I see all the other wanderers and strays either coming away or walking in the same direction. Discreetly one surveys them: are you like me? Do you have a slight impediment to your step? Is your face a little grey? Or do you actually just work here and are passing by? If so, I discount you as a malingerer, unworthy of inspection.
Then, inside the waiting room: the anxious couples of all ages. The old ones so familiar with one another no words are needed. Worst of all the young couple with a new baby, a baby so tiny it hardly seems human, it seems like the last drop of human evolution yet clinging on and the parents desperate, protective, proud, uncertain.
Inside the room where I’ll be having chemo. It’s empty today and as it’s a private facility c/- Southern Cross the chairs are white vinyl and has a strange ambience somewhere between country club and nurses’ station.
We go through all the possible emergencies and crises and what to look for. I see D’s face suddenly look drawn. He has to be vigilant, he has to listen. I try and concentrate and although I know it’s going to happen to me some unreality principle kicks in and all I think about is what wig will I get when my hair falls out on the second chemo. Should I go Andy Warhol? When I mention this to D he doesn’t see the joke and remains silent.
The date is fixed for my first chemo now. Wednesday January 10, 2018 at 1.30pm at the Mercy Hospital, Auckland.
December 13, 2:01am
This is the final post I will ever write on the subject of the Gofta scandal.
After I yelled out “fuck off, sexist shit!”at John Inman (Are You Being Served?) at the 1987 Gofta film and TV awards, and was outed as “the Gofta slob” by Truth a week later, my name went under a cloud. Intellectually I stood up for what I had done. I had spoken truth to power. I was used to doing this, protesting about the demolition of Auckland’s heritage, for gay rights etc. But I knew in my heart I had brought shame on the family name.
To most people my anger seemed incomprehensible – what was a “sexist shit”, anyway? What had that nice funny camp fellow done to offend that nasty uptight politico? What business was it of his anyway? This incomprehension framed the whole event. I was never given a chance to explain or frame my argument. The idea was my act was so scandalous I had forfeited any right to speak.
I wounded my parents and that was my most intimate hurt. They had brought me up to be well-mannered, courteous, and above all, kind. But there were hidden tensions. I was always trying to do well to off-set what I knew caused them pain – my homosexuality. They were conservative Pakeha, limited in their acquaintance with anyone not heterosexual. I was always trying to over-achieve, to say “look I’m alright. I’m ok, it’s all alright”. Then at my most vulnerable moment, as an ambitious 37-year-old-film maker seemingly on the very point of success, I “made a fool of myself in front of the nation” and the family name I bore was dragged into the mud.
I remember going out for my weekly meal with them in Mt Eden the following week. Not a word was said, there was no hint of reproach or bewilderment. There was just a depth of silence which was in fact their version of kindness.
I see that now. I was infinitely relieved not to be questioned, or accused, or asked “what on earth I thought I was doing”. Instead we ate our meal modestly, quietly, as if in fact there was literally nothing to say.
It was many years later I began to connect my father’s increased drinking to his sense of humiliation at the way I had exposed myself in public – as a loud-mouthed opinionated homosexual who thought his views were so important everyone had to hear about them. (Not that I thought that precisely. I saw it entirely differently: I was standing up for minority rights and the ability for LGBTQI people to speak in their own voice, through drama, at a time when this was not accepted as valid.)
I can no longer quite connect the dots but I have such a vivid sense of Dad’s presence on the night of the awards. He was always “second best” in my mother’s eyes. He had failed to deliver the social status that she believed was hers by right. This was never said, but it was something known in that quiet unreality known as family life.
That night when I didn’t win the prizes that I had perhaps thought I might have a chance of gaining, I felt Dad’s ghost standing so close to me he was almost palpable.
“I will never be good enough,” he said. He turned to me and recognised me and I knew I would never be good enough either.
So all that overachieving to placate my parents, to soothe them, to persuade them I was, yes, homosexual but my life was fine – I saw that I had failed too and I could see that was how it was and that was part of my devastation. I thought: I will never be good enough, either.
I don’t think that now, but its shadow lay over my life for quite a few years. I lost my self-esteem. I doubted myself. It took me a long while to free myself from its taint, to recognise my own individuality was separate from what had turned out to be a disastrous incident in which I was implicated. Besides time shunted me forward. I was always thinking, always full of ideas – making films, then writing books, and hatching a plan with Stephanie Johnson to create a writers’ festival for Auckland.
Yet the taint still stayed with me, like a bad taste in the mouth. I knew to malicious people I would always be someone who made a fool of himself in public (regardless of the very real issues of representation and misrepresentation.)
But in the end at some point (like now when I am sick and have limited time to put my house in order) it becomes a person to leave a wounding past behind.
That the scandal – the hurt – is still so alive to me now, 30 years later, is what amazes me. Dad died in late 1987 and my mother left me in April this year. I could wound them no longer. Yet Goftagate still flared up into my consciousness with all the fire of the righteously wronged, the maligned, the unjustly treated. Coming to terms with it has been part of my coming to terms with mortality. I want to make all plain and truthful.
I was very angry when I failed to win any of the prizes I was nominated for at the awards. An incredible fury built up in me and exploded when the “acceptable homosexual identity” (ie someone who could never say what they were but could act out the campest caricature – a heterosexual projection) was welcomed onto the stage. I had directed and co-written a trans drama that was not made in 2016 or 2017 in New York or LA but in 1986 in Aotearoa New Zealand. It was a drama which also starred a trans actor playing a trans character, one which led to a trans actor (Georgina Beyer) for the first time ever being nominated in terms of their chosen identity. It was a big leap forward, a nod to a future not even in existence yet. But in terms of a New Zealand drama award it was not good enough. It was not equal to TVNZ product. And now I had to countenance that withering stereotype, that personification of everything inauthentic you could humanly imagine at the time of the Aids crisis (a man who cannot even say who he is) emerging on the stage to applause.
That is when I opened my mouth and my fury poured out. At the time it seemed part of a chaotic molten event – I suppose you could call it a ‘live’ event in the truest sense. It never occurred to me there was no sound delay nor that the peculiarities of recorded sound would pick up my voice and project it with such force. When John Inman asked me to repeat what I said – I can’t recall his exact words but it was along the lines of “I can’t hear what you’re saying, sweetie” – I took up my call with renewed force.
In that second all my fury at being a second-class citizen, in not having equal rights, at having to fight for any legitimacy – all the pain right back to the wounds of the playground, a life lived in inequality – exploded through my mouth, out my throat.
At the time it seemed part of the blazing drunken energy of the night: part of the organisational failure was that there was almost no food but endless cheap Australian champagne. I had no idea I had caused a scandal. It was only days later that it became apparent I was trapped in the scandal.
A friend rang me up and said to go down to my local dairy. I walked down to the Grey Lynn shops, and saw the billboard outside on the street. EXPOSED – MAN WHO SWORE AT TV GOFTAS. I bought the scandal rag and opened it with shaking hands to page three which features a photograph of me in white tie and tails. I was named. That was the real start of the scandal – the hunting of the Gofta Slob.
And then the vendetta, the slowing down of a career just at a point it should have been taking off. The “friends” who vanished to the point I realised I had five friends in the world and felt incredibly rich to have those five. The horrible phone calls. The filthy notes. My self-doubt was probably worst of all. Had I done wrong? Was I the cause of a disastrous public event that had “shocked the nation”, as the Truth headline said?
I could never find stability in this and in the end, for my sanity, I had to turn my back on this particular part of my past and move on.
Until this recent past when its evil genie arose again, whirling immediately high above my head, casting the authenticity of my life into shadow. As I’ve become sicker I’ve had this desire “to set the record straight.”
For too long it had seemed to be my own personal shame. I could never adjust my sense of myself as someone polite, empathetic and who valued kindliness as one of the most important virtues to a loudmouthed slob who had “ruined” a public event by shouting out obscenities. Which one was I? Or was I the person who “would never be good enough really”, a failure of some kind, who would never measure up, which was the implication of the ceremony – invited to the feast but metaphorically turned away at the door?
Or was I none of these things, more elusive, perpetually trying to find his way forward to some kind of personal truth while acknowledging some of the damage of the past?
Fiona Samuel wrote to me after reading my earlier Gofta post. “I was on the Gofta board, representing Actors Equity, and when John Inman was mooted as a presenter I said our members would not welcome it, for the same reason you didn’t. The Writers Guild rep said so too. We were firmly put in our places by the TVNZ producer responsible for the show, who told us we were ‘up ourselves’ (practically worst sin in NZ) and that his ‘old mother in name of suburb redacted’ LOVED John Inman and that’s the kind of audience he cared about, not arty farty wankers who can’t take a joke. So he was warned but chose not to listen.”
The trap had been laid. I was a finalist for directing and co-writing what could legitimately be called a piece of breakthrough drama but I failed to understand my presence there was mere tokenism.
The event itself descended into Marx Brothers levels of anarchy. It was the year of the infamous space-age set, with flashing lights that led to epileptic attacks among viewers. If this midsummer’s madness and chaos was not enough, Fiona wrote, “on the morning of the awards, the board was informed that the chief executive (ie only paid employee) had absconded with thousands of dollars of embezzled funds and no one knew how the dreadful bunfight was now to be paid for…”
She also wrote, “I’m so sorry, but not surprised, to hear you were pilloried for your outburst of honesty.” She ended by saying, “I was so glad you shouted out – I felt vindicated in my ‘up-yourself-ness’ and secretly took you for a friend.”
This touched me deeply.
Fiona’s vivid account helped me to understand the slow-motion horror show on another level too.
The event was an unmitigated disaster on nearly every front. The choice of John Inman was politically insensitive to the point of being provocative during the heated agitation for Homosexual Law Reform and the agony of ever worsening AIDS statistics. It was an insult to every LGBTQI person trying to live an authentic life at that most challenging of times.
I was too nervously attached to social and political change: it meant a lot to me. It wasn’t simply “a drama” I was representing so much as a point of view, a right to establish our legitimate presence as part of NZ life, as seen through the prism of drama.
So this is the spot where I at long last bury the Gofta Slob. He has silently accompanied me for far too long. Stolen into my dreams and thieved away my rest. Given me a false identity that made me doubt my own reality. I did make a misstep. It would have been better if I had remained silent. But I did not and I lived, painfully at times, with the consequences. Yet time is long and it is the irony of the situation is that I ended up being the one person carrying the burden of a memory which others had long since divested as a silly event, a meaningless mess of a night.
I do not have the time any more in my life to carry Gofta’s weight – its dross – I do not have the energy, so at the end of this sentence I divest it into space –
December 15, 3:14am
There is a kind of beauty in sleeplessness but it’s a seductive, poisonous beauty. But my mind is also very alert. It won’t stop. This is despite the fact I prepare my nest – the large single bed in which I now sleep – lovingly. I have my books nearby, an unrealistic number of them – as if somehow in the middle of the night I might want to ‘change trains’. All those queued up sentences, like so many trains waiting to enter a station, are my friends. I might need them at a lonely, perilous hour.
There is my large bottle of water and a crystal glass. (I often wake up with a caked mouth so dry it causes me to panic. Pills, I guess.) There is my iPhone of course which is utterly essential: it tells me the time, I can drowse away listening to Concert, I can check FB and messages, and go far away to the other side of the world by checking into the NYT app. It makes me feel ‘I am never alone’ (rightly or wrongly).
But it’s more than that. I consciously chose good cotton sheets and pillow cases once I knew I would spend a lot of time in bed. D bought me some cracking cotton pyjamas, the first pyjamas I have owned since I was a child. (I’m reminded of Steph Johnson saying to me when she was a child and often in hospital having operations on her legs and feet that she was always allowed to wear her own pyjamas in hospital and how much this meant to her – a sort of body within a body.)
So I have these beautiful crisp cotton sheets within which to lie. Pillows of course, plus the essential small cushion to wedge against my troublesome hip. Drugs to wipe away pain, if it gets bad.
And on top of the bed I’ve placed a wool rug. I’d forgotten how comforting a wool rug can be. During the day, even a warm day, I can lie down under a wool rug and have a snooze. It takes me back to a Plunket boyhood I guess, to my capable mother, to being looked after.
This is all by way of prep for sleep each night. I always go to bed eagerly. But somehow it happens – during the long lock down – that time runs away from me and ceases to be so friendly. It tightens round me and I become aware of both a solitariness and also a kind of quizzing, almost corrosive sensibility.
So how are you really? might be the question. Or, are you really coping or just putting up a public façade? You can cry with self-pity at these times, no one will see or hear you. Thank god. The night continues on in its seemingly endless, pitiless projection of itself. It’s particularly hard between 3am and 4.30am.
But I feel a most improbable optimism. I can’t explain it. Is it for having endured, and survived another long silent night?
December 17, 3:59am
I’m starting a new medication: a course of hormones called Zolodex. Its aim is to neutralise the testosterone which is feeding my cancer, causing it to metastasise (was there ever an uglier verb?). These are just some of the side-effects one can expect: The creation of breasts. Hot flushes. Loss of sexual appetite. Loss of erection. Fatness in the face. Cloudy thought. Depression.
Some old friends got in touch. Terry has the same cancer as me. He and his partner Peter briefed me on what to expect with chemo. But when we got to the Zolodex injection Terry warned me that it might hurt. Imagination is four-fifths of the equation with me. I began to fear getting the needle.
As it was, my kindly doctor put on some local anaesthetic and before I knew it I felt a metallic presence in my gizzard pushing through. For one moment I felt fear – a child’s fear of a needle – but then I relaxed and it was over.
Part of me is a coward in apprehension – another part of me is shamelessly insistent on being an eyewitness.
Am I calling back on the strength of my ancestors? Is this the payback for my close attendance on my almost 101-year-old mother before she died?
It wasn’t that she was brave, it was just there was a human eloquence with which she bore witness to the things that were happening to her. There was an element of good grace.
She was an old Pakeha woman who was used to not complaining, to taking things as they came, of not grandstanding. Maybe she even had some inner strength to withstand, to survive.
I’m not sure as I know towards the end she was also quite childish about pain, exaggerating it – but then it’s quite possible she felt things strongly as her strength gave out. Her skin was thin, her end near. She returned to being the little girl she was at the beginning – someone I had never seen.
It seems strange to me I was given the gift – or debt – of being such a close eyewitness to her getting ready for death. (I’m talking March, April this year.) Yet was it this which prepared me to have what is a relatively steady gaze at what happened to me so quickly after she died? If anything prepared me it was seeing her go through her own preparations for departure – a mother I loved deeply but whose care had exhausted me and worn me to the bone.
Do I feel her beside me now? Not profoundly – not in a kind of “you are in the same room with me now” kind of way. But I feel her presence as if in another slightly distant but still coeval room. Does this help me? Yes.
This is a photo of my mother in her 101st year. I was sitting with her and she closed her eyes. I put my iPhone on silent and photographed her. To me she looks both exhausted by the business of staying alive but there is some inalienable dignity about her which to me amounts to beauty.
December 18, 1:25am
Zoladex frightens me. “Most men lose their sex drive and have erection difficulties during hormonal therapy.”
This is big stuff for me – for any man.
My desire is being taken away from me, medically removed in order that I have a better chance of staying alive.
“You may gain weight, particularly around your waist…You may experience mood swings…Some men become low in mood or depressed after taking Zoladex for several months…You may notice changes in your memory or ability to concentrate.”
I’m usually inured to all the cluster of negativities that are part and parcel of contemporary medicine. But this…this is something entirely new, something that challenges some essential part of myself, the core of being me.
Sex, sexuality, desire has played such a transformative role in my whole life that to face this now, at such a late stage, is somehow baffling, both frightening – How will I react? Will sexual feelings ever come back? – and confronting. Who will I be without desire? What will I be? Will I even be me?
Or is this the last barter of the desperate? “It may be used to control prostate cancer in men whose cancer has spread to other parts of the body (advanced or metastatic prostate cancer).”
It frightens the fuck out of me – perhaps more literally than I know.
I’m living through so many changes now it just seems one of them. But this is a big one, a very big one. Is it the biggest of all, I wonder – the removal of want. Will I keep looking, being amazed, sometimes saddened, other times bedazzled by the sheer never-ending effrontery which is desire? Want. That fundamental needy word in which all is made explicit. I want. You want. A want of kindness. A want to be touched, loved, valued. Validated. Want. Endless want. Till the grave I suspect.
Or in this case till the hormone lessens my masculinity, my love of the mystery of male beauty, till I become some kind of neuter. Will I still be me in that quiescent state? Or am I already maybe “not me” as the sickness changes me into somebody else?
It’s not like my body has lost its materiality. In many ways it’s still there though it’s lost its elasticity from too much stasis and bed rest. But as for that obsessive cleaving need, it has already been lessened by my taking hormones in pill form. Now it’s an injection which lasts one month. Others are to follow.
My whole life has been defined by my sexual preference, once it became readable to myself and other people. For better or for worse. It became who I was, it gelled around me and slowly I became my sexual preference and that was how I identified and saw the world. Because of my age – when I was born – I became “gay”. I was “out”. I was to a degree transparent as to what and who I was. I was a lover of male beauty, of swelling chests and muscular legs, of a certain kind of masculine charm, even vigour. Maleness was my musk, my magic, my muse. This all happened without my thinking or inclination. It just was. It didn’t stop me having close friends who were heterosexual, male, female, trans. I was eclectic, I liked difference just as I liked humour, elegance, irony, Old Sheffield Plate and people who listened carefully before they replied. Beauty wasn’t skin deep, it was everywhere if you knew where to look for it.
Like many gay men who had had a traumatic passage through youth in the 1950s I was late arriving at the party. I had only felt safe opening myself to rapturous sex as an adult. I had been more than lucky to have a faithful lover who loved me. It was more than I deserved. And now this whole astonishing platter was being taken to a side window in a high-rise building, and scurfed off like so much rubbish you had to get rid of, just so you could survive in the most elemental – vegetative – way possible. Just so you could stay alive.
And there’s not only Zolodex. Chemo lies ahead on January 10. I sometimes think of Atul Gawande’s advice that some people live longer without chemo, enjoy more “quality of life”. Medicine becomes a gamble in the end. Which treatment? When? Why? And to what end?
And who will I be at the end of it?
Will I still be me?
December 19, 4:00am
When I was a child in Pt Chevalier every Christmas you would hear the tinkle of a bike bell and see a kid sprinting along on a shiny new bike, his or her face a mask of glee, in a fury of possession, chasing the wind and as happy as a human could ever be.
Imagine my mixed feelings when I turned the corner by our front door and found I had been presented with a shiny new iridescent green “walker” or “stroller” by Environmental Health Management Services Ltd, completely gratis.
My humiliation at having to rely on an old person’s conveyance met with a fillip of excitement, a wild rash of joy, that it would increase my mobility – I could actually go for ‘walks’ on my own, I could carry shopping, I need no longer hobble and lurch.
Of all the things I most regret about my situation is losing the proud ability to stroll, or amble. Or walk quickly or even run. So to suddenly be presented with this new way of being mobile literally brings tears to my eyes. OK, some of it is chagrin, humiliation, the hard spell of pride. But I have learnt nothing is more immaterial in this situation than pride. I can no longer afford it. That purse is empty or perhaps always had a hole in its bottom anyway.
I will be like those kids at Pt Chev who used to practise in private, in the backyard, trying to stay upright on their new bikes before brandishing forth on the streets, their faces proud and solemn as spears, everything contained in the juggling act of staying upright.
So I will practise in private the runes of a man on a walker who is walking on air.
Salut to Environmental Health Management Services Ltd and to a health system which is still functioning and which delivers a week before Christmas such a devastating surprise. I am truly deeply grateful and touched. When you see me on my walker just remember I am walking on air.
December 22, 1:22am
Christmas is a strange time of year for me. I’m always a little anxious around this part of December. I was trying to think today where and when my own ambiguous feelings about Christmas came from.
I think it grew and feasted on all the days our family tried so hard to be like all the other families and failed so abysmally. We always seemed to have tense days. It was a day in which an argument always arrived on cue, like a migraine or like a smashed crystal dish. We did try. Christmas after Christmas we all tried so hard to make it work. Presents, a special something at dinner. But it never worked. All that trying probably meant it was just about impossible for us to relax and enjoy ourselves.
I think I can trace it all back to one particular Christmas when it really went wrong. I don’t need to go back there but it was when it set a pattern we could never subsequently move beyond. It stayed with us, haunting us, quietly freaking us out like a body we all knew was buried under the floorboards until the family dismantled itself.
First of all Dad died in 1987, then almost as an afterthought and too quickly my handsome and super bright brother Russell walked into the sky – he was dead at 41 – and this left just Mum and me curating this day we all pretty much wished would disappear. Bess and I coped in our own rather dry, amused way, in which Christmas was in between quotation marks. Bess could never get used to the idea of Christmas though. It meant she was always aware she had two gay sons which meant she saw all around her: absences mainly – the grandchildren she would never have, the daughters-in-law to improve and fight with, the in-laws she always planned to look down on. There was such a ghostly absence of people who should have been there that it was hard for me to, well, account for myself as me. I always felt a slim minus in this situation, no matter how happy I was with my life, first with Stewart as a partner and then with Douglas. All I could hear was the sad rustle of ghosts.
It took me many years to shake off these ghosts. It still takes me a conscious effort to relocate myself in the present and accept Christmas can be, well, whatever you want it to be. Like this Christmas I’ll spend it with Douglas and in the evening we’ll join our lovely friend Annie at her splendid house where we’ll have a swim in her pool if it’s warm enough then casually barbeque something scrumptious and be low key and relaxed. The following day friends arrive to stay and this is when Christmas kicks off, with people coming and going, friends looping back through time into the past, tying us to the present and the future.
I wish sometimes I went out and bought a Christmas tree and fairy lights and got one of those things you hang on the front door. It would be novel to experience a Christmas in that sort of formatted way – like I was a refugee learning the customs of the country I’ve only newly come to live in. I have learnt to be relaxed about this rather difficult day now – I’ve learnt not to cart the corpse of my old feelings into the present. But is it a day I look forward to with childish anticipation? Not really.
December 24, 2:54am
I can still remember how embarrassed I was, as a kid, at the way my mother felt perfectly at ease talking to strangers. It seemed conversations burst like birds from her mouth. It didn’t matter if it was on the bus or in a veggie shop or just waiting at a crossing she always had time for a few words, an exchange of views, a comment on the weather.
I on the other hand was shy, tongue tied and full of imaginings so vast I could not shape them with my tongue. It took me many years of writing and making films to try and empty these ideas and images out of my head. Even then they were obstinate and awkward-shaped and it was only with true friends I felt at ease and could talk conversationally.
Yet recently I have observed myself talking easily to anyone with time to listen. I can’t think how this happened or rather when. Did it happen in hospital when time slowed right down and everything I’d fought to achieve suddenly seemed very small? Did my ‘career’ lose its stature beside the ordinary dramas of people trying to stay alive or achieve health?
I had slowed down too. After all I literally could not move. I suddenly had time ‘to pass the time of day’ or the time of day would pass by me. But it was more than that. I understood for perhaps the first time that I was part of a huge world of humans all struggling to make sense of their situation, all of us equal, all of us struggling. I had stopped being a writer etc – I was just now the patient in the bed in room 13a. There is a curious equality there, implacable in its meaning.
I was suddenly interested in other people – I mean in what they had to say. Ordinary chat seemed to me not boring but actually a form of communication – was it like birds calling from tree to tree? Everything slowed down, right down. Just as it now takes me a long time to walk anywhere. For example this afternoon it took me a very long time and conscious effort to walk half a kilometre on crutches. I got tired and discouraged when I realised how far I had to go. I told myself to take it slowly, step by step. And it worked. But it was slow, almost agonising work.
So my whole relationship to time has altered. And I find myself chatting in shops, at bus stops, in just the way my mother once used to do. At the late age of 67 I have lost my shyness.
January 4, 3:43am
As if it’s not bad enough having cancer, my right foot has recently swollen in size. This is depressing. I tried to tell myself I had been overdoing the walking (albeit with Freddie, the name I have given the walker) so the swelling was just a result of over-use. But my doctor (in Auckland) said it might be Deep Vein Thrombosis. O joy. So I went to a 24/7 doctor yesterday (in Napier) who gave me a blood test form saying however he thought it was a complication from tinea. I had to come back to the 24/7 doctor to get the results today. This ended up being a two and a quarter hour marathon of waiting in which there appeared to be no doctor, though the odd accident victim emerged triumphantly bandaged up. Eventually I saw a doctor who gave me a form for a scan tomorrow. It was perfectly timed so the scanning place was closed. So I have another day of waiting.
January 9, 4:10am
Back in fucking hospital. I could cry with rage. Weep with self-pity. It’s my foot. The oncologist wants me to be blasted intravenously with antibiotics before I can reach the Gate of Chemotherapy which now seems some Immaculate Portal I can only ever strive to enter.
I’m sitting in Emergency at Auckland Hospital awaiting direction. Off screen I can hear a tubercular-seeming hacking cough. I’m not even good enough to have chemo, it seems. Not healthy enough. I have to have my ghastly foot or feet salved of tinea so I can enter chemotherapy in a virgin state of skin-innocence.
D took the wrong turning to the emergency part of the hospital (chronically bad signposting – I’d hate to be in a real emergency round here.) And while D was backing out I spotted the “Temporary Mortuary”. I thought to myself: why don’t you just drop me off here. It would save a lot of trouble. I’m bound for there sooner or later – why not cut to the chase.
Next door to me is a silent guy who’s just been told they want to enter his body through his penis. The smooth doctor has outlined the possible problems – blood contamination HIV – each of them percussively ending with an “OK?” The guy next door is totally silent.
January 11, 5:18am
I didn’t understand that was how it would be. Bits would fail. I didn’t comprehend that was how it would happen. Or least of all so quickly. It gives me some idea of my shortened life span – that parts would start failing so soon. I had seen myself as robust and capable of withstanding knocks. But this fat foot episode has revealed to me how vulnerable I am. I suddenly realised too that this is how it might play out – small secondary problems which bit by bit dragged me down.
Thus something as simple as a foot with a tinea infection (or lymphedema – the doctors themselves can’t decide) ends up with me being put in hospital.
I spend a demoralising 24 hours at the lowest level of care, wherein it’s hard to get the attention of a nurse. I’m left to stew in my impotence once I know I’m going home but there’s no one to sign it off, no one to even ask. You’re just left there in a hospital bed you don’t want to be in, desperate to get away but unable to even effect the simplest thing: departure.
Later the oncology clinic say I can be booked into the Monday chemo session. Rather than something to fear this now appears almost a triumph against improbability. I know my vulnerability now. I know small secondary infections can bring me down. There’s nothing grand about it. It’s obscure, belittling, deeply human – ordinary. I have to regard everything as ‘important’ – every swelling, mark on my gums, ache.
Yet through all the comments on my postings I’ve become aware of how common this vulnerability is. So many people have been through, and survived, worse experiences in hospital, on chemo.
It’s that Susan Sontag thing – the night side of life. It’s amazing how many of us have dwelt there, or dwell there at present. Is there a shade of night in all my writing? Maybe. But without night, daylight would have no meaning, no value. I have to admit I find being alive a slightly miraculous experiment. Being conscious, I mean. This adventure of writing about it. It’s something I never planned or thought of. It just happened – a response to the enveloping darkness of night.
January 12, 4:01am
I will be taking a break from posting over the next few days.
I need a bit of privacy and silence. But I’ll be back.
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