Cover Photo: Beatrice Tiberi
Beatrice Tiberi

Dying Is More Difficult Than It Seems

“Nothing would make me enter the carnival of ambulance lights.”

I have stage 4 cancer. Every time I open up the keyboard of my computer intending to write, there comes to me a phrase. It’s been repeated a thousand times: “When you read these lines, it is likely the author will no longer be alive.”

There are countless articles, books, documentaries and films about people who die of cancer. I’ve never watched any of them because I cannot bear the stress, but I’ve heard they are pretty effective and make the viewers cry. I’m not going to write that type of article here.

It all began when I woke up one morning with a swelling the size of an almond on the left-hand side of my neck. Deluded by optimism, I thought it must be the result of a throat or tooth infection. I was disabused of this by a specialist whom I went to see a few days later: “You have a mass in your throat. Better have it looked at quickly.” He was very grave, very calm. I realized afterwards that it had never occurred to him that someone might not know what “mass” meant in terms of human physiology. This was the only medical appointment to which Patrícia, my wife and “caregiver,” didn’t accompany me. She was helping Rita prune the vines up at Vinha Comprida. When I phoned her to pass on the doctor’s terse message, she instantly understood everything and, she tells me, stood there staring into the distance towards the pine woods above the valley, tears running down her face. Forty-eight hours later, I had the CT neck scan. I undressed calmly, put on that ridiculous hospital gown that makes everyone look like they suffer from a nonstop bowel problem, and lay down on the machine. Deep down I was still expecting good news: soon enough they’d be informing me that it was some minor complaint or other. We sat for an hour and a half under the dark green crepuscular lights of the waiting room.

At the precise instant that the radiologist came to speak to us, the life we had lived together for more than two decades ended. The radiologist had the frowning expression of someone offering condolences to a grieving family: cancer of the oropharynx with a tumor in the rear neck lymphatic chain and metastases in the lung. Not operable. Courses of very high dosage chemo and radiotherapy that would lead, within two to four months, to losing the ability to eat or breathe.

We decided that I wouldn’t be submitting myself to the weapons of oncological medicine: the traditional (surgery), the chemical (drugs) or the nuclear (radiotherapy). These weapons destroy an organism’s own defenses and accelerate its disintegration. I had already seen enough cancer patients delivered into the hands of oncology to tremble with horror at the thought of the same thing happening to me.

As we made our way home, there were no tears, no gestures of despair, no complaints. We said very little. The roads we had traveled so frequently seemed now to have an improbable reality to them, like paintings of classical landscapes. It was hot and the light was blinding.

It lasted for several days in a row, this emotional silence. At home, we exchanged the bare minimum of words. An appointment with a consultant at the Portuguese Institute of Oncology confirmed everything in the radiologist’s report. Later on, some institutions with names that tinkled like ingots of gold came and told us the same thing: there was nothing to be done that would make any difference.

These opinions did not matter to us. With a strange coolness, we wanted only to know what we would do to end my life when the time came. Patrícia promised she wouldn’t hinder me from dying, and would even help if necessary. As Plotia tells the poet in Hermann Broch’s The Death of Virgil, “The knowledge of death is closed to one who goes alone, it is open only to two who travel united.”

These events already appear to me somewhat lost in the mists of time. Almost a thousand days have passed between that sultry afternoon of the 23rd of May, 2012, when I had the CT scan, and the cool, cloudy spring afternoon on which I am writing this. Two years and almost eleven months.

I don’t know whether we can discern in this development, which hasn’t ceased to surprise us and all who know us, the slow condensing of a miracle. I know there are many people praying for me and I joyfully thank all of them. But I also know that I have taken many practical measures to avoid the fate dictated by oncologists.

The first, a couple of weeks after the CT scan, was to seek the help of a homeopathic doctor. (Other doctors don’t like it one bit when the word “doctor” is applied to a homeopath, but they’ll just have to bear with me.) Under his supervision, I began by radically changing my dietary regime. Instead of eating the toxic rubbish that most people do, I started feeding myself with products that help my immune system, along with some that actively fight cancer. In addition, the doctor prescribed a series of food supplements and homeopathic medicines.

I owe to homeopathy the quality of those nearly one thousand days of life that I’ve gained by not following the oncology doctors. Two or three weeks after starting the therapy, I was already beginning to doubt that I’d ever had cancer. Just imagine: a cancer patient at an advanced stage, who just a short time before was devastated by exhaustion and pessimism, went to the beach! I confess I was afraid to go in the water at first, I who lived by the sea and have dived beneath its waves countless times. Only on the second day did I manage to take the plunge, and the happiness that swept over my body was so great that I realized the ice age we’d been living in since the diagnosis had given way to spring. Uncertain and fragile, it’s true, full of cloudy days, but a time to live and not to die.

The weeks raced by and we went on trips to Toledo, Burgos and Viseu. I attended conferences, I supervised students, I went for walks with my wife and our six dogs, I skipped over rain puddles with my granddaughter. For a long time my test results were good and my appearance very different from most of the poor wretches who attend the death camps of oncology. In addition, I wrote and published three novels and a collection of newspaper columns, and finished off a further novel and a book of short stories.

Nevertheless, there wasn’t a single day when I didn’t think about death. Not one. At first I didn’t fear, but nor did I understand, this Lady in Black. I gratuitously offered up to her the innumerable opportunities which she, devilishly, seeks within us to make our lives hell, or to steal us away. It’s true that the will to live has always had more power over me than the will to give up in the face of death, or seek it out—I wouldn’t still be here if that weren’t the case. But the struggle between life and death that takes place between them within my mind is very old and very complex. I’ve been seeing psychoanalysts for a long time. The one I’ve been working with for the last few years, and who is one of the key pieces of the puzzle of my non-death, took the news of my diagnosis as a body blow. I remember a brief conversation shot through with anguished silence, and then my telling him in an almost triumphant tone, “Well, you can’t win them all.”

Who was it putting words in my mouth like that? Who was it trying out in me that strange, furious cheerfulness that erupted when I found out that I had cancer and that it was incurable? What psychic force wanted me to die, wanted people to take pity on me, to remember me, to admire me? Which old and angry part of me was taking advantage of this narcissism of mine to drag me towards death?

Life is much less conceited than death. It is a peaceful, swelling tide; a broad, majestic river. In life, it is always morning and the weather splendid. In contrast to death, love—which is the other name for life—won’t let me die that easily: it forces me to think about the people, animals, and plants that I love and am going to leave behind. When life has the upper hand over death, I love those who love me, and the tide of life swells within me. Each tear that runs down my cheek as I fall asleep, each spasm of anxiety as I wake up in the morning and remember I have cancer, each wave of sadness that at times obliges me to sit down at the side of the road when I take the dogs for a walk and interrupts my prayer or soothing conversation with God, each of these manifestations arises from the love of other people momentarily failing to sustain me, and above all the failing of my own love. When, on the other hand, I have a day in which I manage to write and like what I have written, in which I bend down over the flowerbeds to pull out some weeds, in which I admire Patrícia’s energy as she sits at the computer or carries firewood back to the house—when these things happen, my time is no longer Ordinary Time but rather one long Easter Sunday.

The homeopathic doctor never promised me a miracle, and my health began to deteriorate in January 2014, a year and a half after the cancer diagnosis. Small things at first: some pain in the head, neck, and throat, more tiredness, bowel problems. Gradually, one by one, all the physical pleasures disappeared or became impossible: sex, a glass of red wine before dinner, a journey of more than two or three hours, the sensation of solid food with its varied flavours and textures passing down my throat, a run with the kids or the dogs.

Some weeks were worse, others better, but the tumor in my neck kept on growing. Then it burst like a little volcano of pus and gradually took on an appearance so abhorrent that I could no longer bear changing the plaster myself every morning. The terrifying sight would ruin my whole day and so the melancholy and repugnant task of attending to it was foisted on Patrícia, who knows how to do everything and is disgusted by nothing. Later on, community nurses started coming to the house and taking turns with her.

And so, suddenly, I was dying: in the middle of June 2014, a major hemorrhage woke me up one night. I was soaked in blood gushing from a vein that the tumor in my neck had unearthed and enfeebled. I fainted, and Patrícia, unable to bring me round, thought it was the end.

I spent whole days in bed. Then, gradually, I improved. Slowly and with difficulty, I regained a relative degree of health. In December, a second hemorrhage, although less violent than the first, forced me to undergo a blood transfusion. I had it in a hospital that, like almost all Portuguese hospitals at the time, was plunged into such chaos that I spent a day simultaneously amused and offended, watching the disorder that surrounded me.

The two losses of blood tilted the balance in favour of my inner death: I slipped back into the melancholy at whose bedside I had sat and with whom I had long conversed during those terrible weeks following the cancer verdict in summer 2012. How am I going to die, I asked. How, exactly?

I wasn’t referring to my so-called “natural” death. I was talking about death inflicted by myself. Meanwhile, however, Christianity, almost forgotten since my baptism, burst into my life through the words of a priest. The priest is another key piece of the puzzle, although unlike the psychoanalyst, it’s the puzzle of my joyous meeting with death.

Suicide is an affront to the will of God, whose wish is that the death of every Christian be at His disposal, to be delivered unto the Cross at the moment of Christ’s bidding and in the manner in which He decides. But Patrícia and I had solemnly sworn that I would die here, in my house, and that nothing would make me enter the carnival of ambulance lights to go and die in a hospital. That oath still holds.

We made this decision as we drove out of the parking lot of the clinic where I had the CT scan and heard the diagnosis. In my sickened mind, death was jubilantly celebrating its victory and it was impossible for me to combat or control this sentiment and summon forth the light of hope, which was curled up in a corner of me like a kid paralyzed with fear. On our way home, I thought about the difficulty and the risks involved in the way my brother had died. I thought about jumping off a bridge. I thought about the agony of poison and my ignorance of lethal medication. Above all I thought about the fact that all these pathways to death still left the suicidal person sufficient time to repent, which at that time was exactly what I didn’t want.

At times I went through the motions of dramatizing my death, an unoriginal, lifeless soap opera. Would I manage to throw aside, like worthless small change, the remnants of life that continued to glimmer within me? And what if I was wrong? What if they weren’t merely worthless tokens? What if they were worth putting off the silent darkness of the grave where I would rot? At the time of the second hemorrhage, I came close to finding a definitive answer to these questions. After locking up the dogs and bidding a brief farewell to Patrícia, suffocated by terror and kneeling on the floor unable to look at me, I left the house carrying a rifle and a plastic chair where I could sit with the rifle butt resting on the ground. I had scarcely any strength left in me and my legs trembled. My shirt was soaked in blood and, when I rubbed my hands over my face and eyes, I saw the trees, the bushes, the tool shed, the hillside and the vineyard all through a red mist. My determination in walking the few dozen steps, without hesitating and despite my physical weakness, came as a surprise even to myself. Right, I was going to die. I inhaled the intense scent of some peppermint that had seeded itself at the foot of the big pine tree without, until that moment, anyone noticing. I set the chair down beside a pile of tree trunks, sat down and, with the barrels of the gun in my month, my finger stroked the trigger. The metal felt cheap, clammy, listless, docile. Everything seemed vaguely ridiculous to me: my awkward gestures, the objects I’d gathered round me. Once again there came to me the scent of peppermint. I raised my eyes from the trigger guard and saw a clump of pine trees that the sun, shining through a gap in the clouds, had picked out in gold against the dark green of the hillside. Suddenly I felt a wave of inexplicable happiness similar to those sometimes cited in the Holy Scriptures. I came to the simplest conclusion in the world: I was alive and, for as long as that was the case, I wasn’t dead. I became truly content, feeling life simmering in my veins, even the damaged ones. I lay the rifle down on the ground and went back to the house. I didn’t look back, at the white chair and the gun, which remained in their places completely indifferent to my fate. As she opened the door, Patrícia, unable to control the tears that streamed down her face, fell into my arms. We stood there for a long time, clutching each other, almost motionless, like the trunk of a great tree.

There’s not much more to tell. My life is tiptoeing away. I’ve put behind me the idea of suicide, for a very simple reason that I took too long to discover. Here it is in the words of Christ according to Matthew, words that lit up like lightning—and finally did away with—the hesitant manner with which I’ve been dealing with pain and suffering during these almost one thousand days. He who holds on to life for himself shall lose it; and he who loses his life for my sake shall save it.

This essay was first published in Granta Portugal 5: Fail Better, May 2015. translated from the Portuguese by Robin Patterson.

Paulo Varela Gomes was born in 1952. Until 2012, he taught and wrote on the History of Art and History of Architecture. Since 2012, he has published three novels and a compilation of opinion pieces.