“The relationship with the disease portrays us as a society. The failure of breast cancer is not the people who die but the world that makes them sick,” summarizes Anne Boyer (Topeka, Kansas, USA, 1973). The author of collections of poems and essays, such as
Manual for Defrauded Destinies
(Kriller 71), she won the Pulitzer Prize for Non-Fiction for
Desmorir, a reflection on illness in a capitalist world
(Sexto Piso). She believes that the world has cancer, not some people: “What does it mean that we spend more money covering up causes than investigating it? What does it mean that there are people who die because they cannot afford treatment? The interview takes place in Madrid. Anne Boyer asks not to be photographed in a hospital.
Does money decide who gets cured?
In the United States, our healthcare system is completely driven by profit. The social inequality that defines the country today also determines the experience with the disease. The world privatizes survival.
She didn't realize it until, at the age of 40, as a single mother with no savings or partner, she faced triple negative breast cancer.
Like many Americans, I went years without health insurance. Even though I was a university professor, it was impossible for me to pay for it. I'm not talking about losing teeth, I have friends who have stitched wounds because going to the emergency room would have devastated their finances.
What happened when your daughter was born?
I was very poor then. That allowed Medicaid, the public health system, to get me a hospital. Medicaid is for people below the poverty line. That has turned it into a stigma. Instead of appreciating that medical help exists, it has become a shame to have to resort to it. Doing so makes you an outcast, a loser.
What does medical help associate with shame?
It is the ideology of the country. From a young age we are taught to compete. Ours is a culture taught in the language of war. It contrasts conqueror with conquered and victorious with victim. In my childhood, sports were not a game, they were competition. Even in my world, instead of understanding art as something capable of expanding and improving life, it was seen as competition: the best at drawing or writing won prizes. Writers or painters who do not succeed do not contribute to society. I received an education that taught me to be a hero. And not everyone can be. American society is wonderfully plural. It should be an extraordinary human experience. The American dream would have been the flowering of that mix. The nightmare is that, by putting economic profitability first, society is polarized because the number of people with nothing to lose grows daily. The feeling is that almost half of the population does not matter or does not deserve to live. In the United States, the country of diversity, being different is a problem.
What are you doing there?
Since September I have lived in Scotland. I love Kansas City University, where I taught. But there, the homeless population has grown to dystopian levels. It's not just homelessness, it's addictions and mental illness. It is as if a good part of the population has become a balance. They don't worry, they bother.
What do you do in Edinburgh?
I teach creative writing at the University of Saint Andrews. It is clear what education has been useful for me. You don't have to be the best.
But he won the Pulitzer. Did the winners and losers system work for you?
I loved my job before receiving the award. Contact with young people who want to dedicate their lives to art is stimulating. But I saw how the prioritization of profitability was reaching my university, which was like an island of knowledge.
She was diagnosed with aggressive breast cancer
.
I noticed a lump in my chest, but I ignored it. Enough had happened to me in my life! Cancer is neither seen nor painful. Triple negative has a miserable position in the history of cancer due to its high mortality. It is the least studied. And it usually affects vulnerable people: young people over 30 years old without the right to free check-ups. Since there is no specific cure, these patients receive chemotherapy that is like jumping off a building when someone is pointing a gun at you. It is a solution, but perhaps too radical. Of course, avoid lawsuits. Lucretius wrote that one could die inch by inch and the cure for cancer proves it.
He married when he was 20 years old.
And it was a disaster. I didn't have a good childhood. We lived in Celina (Texas), a place halfway between New York and Los Angeles. There were only storms, snowfalls and tornadoes. It has a hill. The rich live there; the rest, on the plain. In the eighties it was populated by anti-communists and fundamentalist Christians. My friends and I didn't fit in. I spent a childhood perpetually punished at school and at home. I wasn't trying to fit in. How are you going to want to fit into an unfair and harmful system? Every year on my birthday, my mother said that she had changed her baby at the hospital.
Do you have brothers?
One. He adjusted. He was admitted to the football team, he was dating a cheerleader. I adore him, but the truth is that he fit in. At home they told me that he was going to have a brain tumor because all he did was read.
And his father?
My father…, I have a colorful family history. My paternal grandmother was left without a mother when she was two years old. At a very young age she fell in love with a country music singer. She became pregnant and they decided to move to an abandoned gold mine in Arizona. My grandmother was like me, someone unable to keep quiet about what she thinks. So he soon became angry and abandoned her on the road. She survived by picking cotton, pregnant by my father. When he was born, she returned to Celina and took a job as a maid. My father was able to study Law and became the judge of Celina. He was not a resentful man. But he never moved to live on the hill of the powerful, nor did he buy a luxurious car. He kept his childhood friends. He couldn't stand the world that had rejected him and his mother. My father, of course, was the one who opened the door to books for me. He had many. I read them all. He died five years ago. Like my mother.
Did you talk to your mother about your estrangement?
We didn't get it. She was in too much pain. I couldn't even tell him that I had been given a scholarship to Cambridge University.
Have you managed to avoid resentment?
I always dreamed of revenge. It became a driving force for me: to take revenge from the culture. Denying hate is not good. You have to let it out.
Does revenge liberate or sink?
When I was a teenager, several friends committed suicide and, at the funeral, the priest talked about how gays would go to hell. The United States is not the democratic and liberal country that we are led to believe. The writer has to shine the light on what does not work in the world in which he was born.
She found a sisterhood in the work of other writers.
I devoured them to try to learn something about the disease. Susan Sontag wrote: “To think only of oneself is to think of death.” What I learned is that all the authors who write about being sick say that it is not possible to do it. But they do it.
Do you defend art as a cure?
I don't believe that beauty heals. I believe in an art that helps you think. Writing Desmorir was not therapeutic. It didn't cure me psychologically... But a book can talk about you to power. I needed to write that more important than looking at genes was to analyze the public water distribution system to find where cancers come from. Of course genes play a role, but what we share is the environment. In the United States there is a lot of pressure to deregulate environmental laws so that industries can continue polluting. Why can't we get patronage to research the environmental causes of cancer? To give to society I feel I must look beyond myself.
The WHO published the relationship between cancer and cars that run on diesel or gasoline and with tobacco.
It is a tragedy for the world that in the United States, which has some of the best-prepared laboratories and scientists, research depends on the patronage of large companies. In the end, who decides what is investigated?
We use less plastic, there are fewer and fewer cars in cities. Is nothing getting better?
I am very little optimistic about what may happen in the United States. Throughout my life I have only seen the country worsen.
How did you pay for your treatment?
He had medical insurance, with a deductible. One of my chemotherapy infusions cost more than I earned a year. My friends together contributed the missing money: thousands of dollars.
They deserve a monument.
I hope the book is for them.
He wrote that he said goodbye to all his lovers by sleeping with them.
Happened.
How many?
I won't say that.
He is against pink bows.
It's not just that the survivors' party hides the deaths. It is that it demands happiness from them for being diminished. It hides the lack of investment in research and makes those who frequently use it as a lure to sell their products participate in the cure. Cancer with little possibility of cure hides suicides. Novelist Kathy Acker refused chemotherapy in 1996 because she preferred to have quality of life in her final months. Many of her friends considered that she denied the disease. To me, the audacity with which she chose to experience her final made perfect sense. She was like that. Others want to live as long as possible. We don't all want the same thing. But he who does not submit to what is usual is seen as a crazy person, as a loser. People punish the dead who have not undergone cures when, in a few years, we will see chemotherapy like bloodletting: retrograde practices. There are people researching less harmful cures. I think most doctors would like to move on to other types of cures. But today not being submissive makes you crazy in the eyes of many people.
She is against covering up cancer, but she arrived to her chemo sessions with painted nails.
I didn't want to look like a model, or an
influencer
, I wanted to be in control of my appearance in the middle of something that controlled every part of my body. The search for beauty is the most praiseworthy thing in life and humanity. But the need for you to look good so that others don't worry is not beauty, it is disguise. It is ugly, the opposite of beauty.
Some activists equated breast cancer with AIDS to demand research.
Breast Cancer Action is the only organization I would donate to. They report on
pink washing
: the chemicals, the weapons, the companies that add a little pink bow to their products to show solidarity, such as makeup.
Does getting cancer open your eyes or blind you?
It has been one of the experiences that have defined my life. What is different from the experience of other women who wrote about the disease is that I have lived it in the midst of the flow of information and misinformation that is the Internet.
People announce to strangers that they are sick.
YouTuber Christina Newman rejected chemo. She opted for a diet that she was narrating. She had many followers and then dissuaded them from her decisions. She died at 39 years old. Taking someone's doubts for information is dangerous.
There are people who pretend that they are sick.
Fraud by doctors, supposed patients or researchers does harm. I also developed empathy towards them. Australian blogger Belle Gibson was “the most inspiring woman of the year” for
Elle magazine.
Cancer of the blood, spleen and brain was treated with a diet. She didn't have cancer. British Kelsey Whitehead shaved her hair and had a Hickman catheter surgically implanted. The judge convicted her of fraud. They got donations. They bought cars, houses. But some doctors also deceive: Farid Fata, a hematologist from Michigan, was sentenced to 45 years in prison for administering chemo to people without cancer. Surgeon Ian Paterson, for removing breasts. “Somehow we have to pay for vacations.” Towards them I felt more pity than anger.
Are patients more willing to take risks than doctors?
I changed doctors because he was not willing to give me the most aggressive treatment. He told me that he had known patients who had not endured that treatment. How would I recommend it? And at the same time, how can you not try it?
In the United States, 45% of mastectomies are outpatient.
No income. You cannot drive home the day you have had a double mastectomy. What do you do if you don't have friends? The United States does not allow a hospital bed but, by federal order, reconstruction is allowed. What does that say about us? Well, the image is more important.
Is there a better way to reconstruct the chest?
That industry is, at its best, an evolving field of knowledge. At worst, a business. I spent years sick from having my breasts reconstructed with silicone. I had ganglia coming out. My oncologist finally told me that they had proven that this aesthetic reconstruction caused side effects and could even hide tumors. He advised me to get rid of silicone. The day after the operation, for the first time in seven years, the vertigo disappeared and my nails grew back. I'm not talking about manias. They are facts. I know that this does not happen with all patients, but if by telling it I can help some... I never lost the will to live during treatment. But the years in which I lived poisoned by silicone, and I thought that my life was always going to be like this, I stopped wanting to live. Today my chest is flat, but I can move my arms, I don't feel dizzy, I can think. I have got my life back.
What is the best reconstruction?
With your gluteal muscle, which produces less rejection. But it requires several operations and hospitalizations. I want to tell something else. I got married with a flat chest. If someone is afraid of losing love over something like that, they are wrong. Let's see, finding a partner that you love and who loves you is always an adventure, with and without cancer. But whoever loves you wants you to be well regardless of how you have breasts.
What has surviving triple negative cancer changed in your life?
I am more empathetic with the suffering of others, whether or not it is caused by an illness. I feel the double gift of knowing how to handle the language and of still being in the world. Writing requires a lot of effort and in the end you may not be able to convey what you really wanted to say. But i have to do it. There is no corner of the world that is not touched by inequality. These problems outside the disease magnify the diseases. Intellectually I knew it. But for me it is no longer theory.
_