My memoir writing, Jornada del Muerto,was published by VISUAL Carlow Art & Ideas in response to their current exhibition, Remembering the Future, which included my work.
With thanks to Rosa Abbott and Benjamin Stafford for editorial support and commissioning.
Image: Darren Campion
Full text:
Jornada del Muerto
And if I could begin it all over again, knowing what I know now, the result would be the same.
—Samuel Beckett, Watt
What do I tell you about hospitals and treatment? It’s a process. “We are in a process,” a phrase we repeat to each other. We are on a course of action that will release us and make the rest of our lives possible; we are living, we are not dying.
So, we assimilate – lists of medications on the fridge door, flasks and plastic ice cubes to transport drugs, seizure pens in pockets, books for waiting rooms and chemo sessions, tin mugs to avert landfilling polystyrene cups, a comforting organisation. Lying on the top of our basket of hospital visit accoutrements is the blanket you gave me for Christmas, of purple and orange plaid. It causes a flash of knowledge that one day I could lie under it with you gone. I swat the errant thought away like a fly.
Four fat files, your records need a trolly to be mobilised. We have our own system – you have a notebook where we write down questions for the doctors. I remember what we are told and point out any symptoms you may have forgotten or grown used to. My brain becomes a repository of medical information I can barely grasp onto. The process constantly changes; a drug works for a while, stops, and then there is another new drug, and with each one comes a multitude of side effects and their placatory prescriptions. The oncologists get compassionate approval for medicines from pharmaceutical companies. They can make a good case; you are young and were fit and healthy before this.
We are in a process. We have regimes. We give up meat and dairy. I devise menus and shopping lists, ensuring we don’t feel deprived, and once a month, we go out and eat whatever we want. Faced with the option of any food available, we usually choose the soft, greasy comfort of burgers. We juice raw vegetables and wheatgrass, drink green powders, spirulina, take iodine, and cannabis oil. We do whatever there is to be done. I take care of you, and with your arms around me, you tell me that you feel I am healing you.
Immunotherapy, radiation, chemotherapy.
You’re not to worry. You only have a small bit of cancer,. I hear the consultant assure you through a papery azure curtain. Not to worry, there will always be a new drug, the next drug – other things the consultant told us.
There is an intense privacy, an intimacy to your illness. We keep the details to ourselves, even from friends. We don’t want to see people, we don’t want pitying looks, we are madly in love, and we are living. We turn down the hospital’s offer of consoling circles of plastic chairs, washed down by tepid tea and clasped hands. We will be free of this process one day, can shrug it all off and forget.
We are just delayed in the airport lounge of sickness, our patience and diligence will pay off. Settle down, follow the announcements, do a puzzle, read a paperback, eat a triangle-boxed sandwich. We will have you out of here as soon as possible. I suppose they did; me back out through the departures door, and you took the flight.
I ask you what you would do if you could do anything. “We don’t need to stay here; we could travel, whatever you want, wherever you want. What would you do?” You want to stay; you are done with travelling and want our nested life. We carry on.
There is a dinner party, stage four and now no cancer! The high-pitched surprise at our announcement. To us, of course, this was inevitable; the path was always leading us out. Now I wonder if part of the gathering’s shock was an anticipation of the fall we were about to take – two happy lovers waving as they back towards the precipice.
Yet we feel lucky; to be together, but also within the process. How lucky we are to live near the hospital that we do not need to travel like the elderly couples next to us in the chemo room who have trekked here by train and taxi and will do it again after their long day’s infusion. How lucky you are to have a private room with a large en-suite. How fortunate that the nurses let me come first thing in the morning and stay till late at night. Not taking in what this all means.
Radiation on the brain: “I know I love you, but I can’t feel it.” You are down the end of a long tunnel where radiotherapy has switched off your emotions. We should have been given a map – We will be zapping this section and this section. Here lies love; once we zap that area, it will be gone, a crater. You’ll know it was once there, but you won’t feel it anymore. We can’t guarantee it will return, but we recommend word searches and crosswords to help bring it back. We know what has happened, but this is hard. For some older patients, what they lose will never return. For you, it will; you exercise your mind, keep working, and pack puzzle books in our hospital basket.
I shave your hair off and leave it outside for the birds to line nests. It grows back grey with a kink. This we accept. I had been looking forward to you as a grey-haired old man. The grey has just come early.
Radiation on the spine: you stay at your mother’s home overnight to take care of her after a cataract operation. You fall. Your mother rings from the hospital, and I rush in. You are losing the ability to walk. You lose the ability to walk. The cancer is in your spine. The medics give you a catheter and a drainage bag. I put the pouch into a cotton tote branded with the name of our friend’s brewery to disguise it.
A week after you start to walk again, we go to Iceland for your fortieth birthday. We are the same age and plan to go away for both our birthdays, not wanting parties and nights out, not wanting other people. You chose Iceland, and for my birthday three months later, I chose Barcelona. Iceland in February is under snow and ice. I worry about you falling, that the trip will be too much for you physically. Of course it is too much; no doctor would advise it, but we are living, and we go to Iceland. On the night of your birthday, our tour to see the aurora borealis is cancelled due to a lack of electromagnetic activity. That evening you are quiet as we sip a cocktail in the hotel lounge, a quietude I take as fatigue. In the morning, you get out of bed and kneel on the floor.
“Are you ok?” I ask in alarm.
“You know I love you, that I want to spend the rest of my life with you. Will you marry me?” You had been nervous, and with your proposal under the Northern Lights scuppered, scrabbling for a plan B.
“YES.”
And you do spend the rest of your life with me. The rest of your life does not see your next birthday. The rest of your life is ten months.
A woman cheerily sweeps by and settles herself in the navy vinyl armchair beside us in the chemo ward. I’m not meant to be on the ward while you’re treated, but I always am; I won’t leave you here alone. Making myself small in a corner by your machine, entreating invisibility and nurses’ understanding, I have it; the tea lady even slips me biscuits. The woman sitting next to us is striking; stylish, with the air of one who can run a shiny-floored house of children, leave a job on time with her desk cleared, and feed her family and in-laws roast Sunday dinners. I patch together her story, not wanting to eavesdrop, but with my radar alert for snippets of hope. She had breast cancer ten years ago, which has returned, metastasised to her brain. A man approaches, announcing he will return later to collect her. She asks him if he thinks she will make it to next Christmas. I try to make the air so dense it will block out the sound of these words, halt them mid-air in a thick custard of my will and dissolve them before they reach your ears. But you hear and the question hangs between us. The question is not if she will reach next Christmas, but will you.
The consultant says radiation is optional when the cancer reoccurs in your brain. We decide you will undergo it. I want you to because I can’t face the other option. You are so weak that you howl as the nurse repeatedly returns a needle to your pale flesh to draw blood. This is torture; she is torturing you, and she is torturing me. But I won’t look away; I need to bear witness to the needle in your arm, you crying out like a child, you bearing the pain. I cannot share it, so I must watch, hear, and feel. The day you are due for treatment, you are so tired and sick that we know your mother and I know you are not up to it. I ring the hospital; the doctor says he has never known a patient this sick to undergo the procedure, that there is more cancer in your brain than they can count. “If this was the person you loved most in the world, what would you do?” I ask. I wouldn’t do it to them.We don’t go to the hospital.
On a ward of older men, a fellow inmate tries to get into your bed, and a bewildered fugitive clad only in a nappy is returned to his cot repeatedly, to the sound of alarms going off and a constant wailing from an adjacent room. You get no sleep. It is on this ward, behind a blue curtain half-drawn, that the doctors say something: treatment not working… no other option but chemo… but unlikely to be effective… They are shifty, the doctors, not wanting to be there, staying only minutes, embarrassed to have this conversation. They are telling us there are no worthwhile options left and suggesting that you not undertake chemo, the only remaining possibility. The dismissal is so slight that we don’t fully understand its meaning. A message so loud it swallows us; we are within, surrounded, but cannot hear it. We will take the chemo, and we will carry on. We are in a process, but a process is only a process as long as you continue. Without a next step you are ended.
Neva Elliott is a contemporary artist based in Dublin and the winner of an ARTWORKS 2023 prize for outstanding work. Her work is exhibited as part of Remembering the Future at VISUAL Carlow from 8 June – 27 August.