Fashion-designer-turned-director Tom Ford said he thinks a lot about death. “Death is all I think about. There is not a day or really an hour that goes by that I don’t think about death,” he recently told Hollywood Reporter.
Many people probably share Ford’s morbid tendencies, at least to some extent, Pelin Kesebir, an assistant scientist and psychologist at the Center for Healthy Minds at the University of Wisconsin-Madison, told Live Science.
It’s rare that people have a pathological fear of death, she said. Further, although “thoughts of death can be a source of anxiety and dread for someone,” they can instead be “a source of immense clarity and wisdom for others,” she said. [10 Things That Make Humans Special]
However, psychologists in one school of thought — those who are “existentially oriented,” or who study the way that concerns about the meaning and value of existence affect human behavior— say that the roots of many common psychological problems can be traced back to people’s anxiety about death, Kesebir said. More specifically, these problems relate to anxiety about failing to live a good life, Kesebir said.
“People are usually not afraid of death per se, but of not having lived a worthwhile life,” she said.
People may have frequent thoughts about death because of humans’ sophisticated mental abilities, she said. Our minds “make us painfully aware of inevitable mortality, and this awareness clashes with our biologically wired desire for life,” she said.
The result of this clash is a very understandable and normal anxiety, Kesebir said.
What to do about thoughts of death?
If people are bothered by thoughts of death, Kesebir suggested engaging in thought experiments about what it would be like to live forever and the problems immortality could bring. She noted that although such thought experiments can leave people intellectually convinced that death is actually a good and necessary thing, it may be difficult to feel that way, emotionally.
The best way “to accept death gracefully is living a good life — a life that is true to your values,” she said. People who do this may stave off a fear of not having lived well.
It’s also possible that a preoccupation with death can actually lead to a relief from anxiety about that final event, she said. Some people who have had near-death experiences “report an increased appreciation and zest for life, closer, more meaningful interpersonal relationships, an increased belief in themselves, changed priorities,” and other positive changes in their lives and outlooks, she said. [After Death: 8 Burial Alternatives That Are Going Mainstream]
In other words, after brushes with death, some people tend to live better approximations of what they consider to be good lives, which can in turn can relieve anxiety about death.
So according to Kesebir, thoughts of death, like Tom Ford’s, are normal and might even help people to live better.
We all joke about dying one day, but when someone we love passes on it no longer becomes the punch line to a vulgar joke—instead the thought of death becomes a subtle pain that lingers within our heart for the rest of our lives.
Death is a scary concept. Not knowing if the next breath is our last, and if and when we will have enough time to say our goodbyes—that’s frightening.
Death has taken some of the most important people in my life too soon, but maybe death is not something to fear. Maybe death is a beautiful beginning; a fresh start where the people we cherish feel no pain and watch over us as we continue to live our everyday lives.
I am not saying that death is something to feel joyful about—it is okay to feel dejected; it’s okay to cry and mourn the loss of someone you loved. What I am saying is that maybe we are overlooking the positive aspect that stems from such a heart-rending event.
When someone is taken from us suddenly, we find ourselves stuck in a place of confusion and despair because life without them doesn’t seem plausible. I can’t help but think of one of the most common phrases that I’ve heard over and over again–“It is a shame, he or she was taken way too soon.” I found myself consumed with that phrase and was constantly questioning why some people died so young, why some people would suffer for years before passing, or why some people were blessed with a long healthy lifespan.
But maybe death is like a tragic love story—the outcome results in death, but the journey is trotted fearlessly by people who are adventurous and driven by the idea of living a full life despite their questionable duration on this Earth.
We spend so much time fearing death, when we really should fear not living.
Like Shakespeare said, everyone owes God one good death. We were put here with a purpose and with no indication of how long we will have. So why are we avoiding living our lives to the greatest extent when death is inevitable? Why are we so afraid to take that next step that can potentially alter the rest of our lives?
The truth of the matter is, death does not discriminate—it doesn’t matter what race you are, your gender, what your income is, or whether you are young or old. It doesn’t factor in whether you are compassionate, malicious, timid, or loud. It is because of this that death should not be dreaded, but should be the reason we live the life we have been given exactly the way we want to.
Maybe death exists so we realize just how precious our time is—death should not be viewed as this dark morbid being, but as a mysterious presence that pushes us to do the things that frighten us the most.
We don’t know when we will say our final words. We don’t know what we are going to be feeling the moment that life is taken away from us. So what has the death of my loved ones done to me? It has fueled me to take every opportunity that is put in front of me, and experience every moment like it is my last. So Death—the motivation to live a full life daringly before it brings you to your new beginning.
I bought Paul Kalanithi’s memoir, “When Breath Becomes Air,” the day it came out and set it down on my kitchen table unopened. Several of my best friends from medical school did likewise. We had read Kalanithi’s recent articles and knew the story of the Stanford neurosurgery chief resident diagnosed with metastatic lung cancer — a diagnosis that 22 months later would prove to be terminal.
But instead of jumping in, for several weeks we shared email exchanges about what we could expect to find, afraid to confront the actual words on the page. We were all at the end of our residency training (several of us, including me, in surgery), and reading the book, we knew, would make real a fear that no scientific articles and patient stories could: that terrible and unexpected things happen to doctors, too.
I had never really thought about the way physicians die, even though I was seeing so much death around me. But in hospitals, death can feel routine. We encounter it in intensive care units, on the floors and in the trauma bays; we see it happen to elderly patients with dementia, to newborns and to healthy teenagers. And yet I cannot think of any colleague who does not consistently draw a hard line of separation between what happens to “them” — the patients — and what can happen to “us.” There is an otherness to the bizarre accidents and the exceedingly rare cancers: In hospitals filled with unlikely catastrophes, the statistics are always on our side.
We trust in the double standard: one recommendation for our patients, a different one for ourselves. We routinely counsel patients on their end-of-life care, and we inquire about living wills before surgery. But in asking around, I learned that none of my fellow residents have living wills, designated proxies or advance directives. I don’t have them either, nor have I had a real discussion about what I would want done if the worst-case scenario occurred.
I did end up having a conversation with my best friend, an oncology fellow. “You would know what I would want,” I said to him rather nonchalantly, expecting this to be the end of the conversation. “Of course,” he said, “so do you. We’ve always been on the same page.” We easily agreed that neither of us would want prolonged breathing or feeding tubes, or holes made in our windpipe, or ending up stuck in a coma. Unless, of course, that coma was reversible.
“What percent chance of reversibility?” he asked. I didn’t have an answer — “I guess 5?” My best friend, it turned out, would draw the line at 2 percent, but not if there’s significant brain damage involved. How much brain damage is significant? As we considered our end-of-life preferences, it became clear that neither of us knew what the other would want because we had never actually thought through our own stances.
Physicians, like most people, do not want to discuss the implications of their own mortality. We forgo difficult conversations, assuming that our wishes would somehow be innately known by our friends and families. Haven’t we always been told that all doctors want the same thing? Indeed, a 2014 survey confirmed that an overwhelming majority of physicians — almost 90 percent — would choose no resuscitation. Most doctors also report wanting to die at home rather than in a hospital.
Perhaps it is these general assumptions that make physicians not feel the need to explicitly discuss and outline their end-of-life preferences. In a survey of almost 1,000 physicians whose mean age was 68, almost 90 percent thought that their family members were aware of their wishes for end-of-life care. Almost half of those surveyed did not think their doctor was aware of their end-of-life choices, with 59 percent of those participants having no intention of discussing these wishes with their doctor in the next year.
But we know that conversations about proxies and advance directives should happen long before they need to be utilized.
A 2016 study found that physicians were as likely to be hospitalized in the last six months of life as were non-physicians. On average, they also spent more days in intensive care units at the end of life and were as likely as others to die in a hospital.
So why are doctors dying in hospitals and in intensive care units instead of at home, when we know that their wishes tend to align with avoiding extreme measures at the end of life? My best guess is that physicians and non-physicians alike are skilled at believing that bad things happen only to others. Repeatedly witnessing tragedy does nothing to temper this human tendency.
At the same time, questions about the end of life are never easy even if we try to pretend that they are, and dealing in absolutes and generalities is seldom helpful. We see patients spending years on life support or clinging to hopeless cancer treatments and agree that we would never want that road for ourselves. Most of the time, however, the issues are markedly less clear. Often, the calculus shifts as life itself changes, as the needs of significant others and children become factored into the equation.
For that reason, living wills or designated proxies cannot exist in isolation. Instead, these questions must begin with a lot of self-reflection and difficult conversations with our loved ones. But none of that can happen until we come to terms with the unsettling reality of our own mortality. Not reflecting on or discussing it, like not picking up a book, does not change our reality: that illness and death are often unpredictable, and that this is as true for us doctors as it is for our patients.
Our consultation is nearly finished when my patient leans forward, and says, “So, doctor, in all this time, no one has explained this. Exactly how will I die?” He is in his 80s, with a head of snowy hair and a face lined with experience. He has declined a second round of chemotherapy and elected to have palliative care. Still, an academic at heart, he is curious about the human body and likes good explanations.
“What have you heard?” I ask. “Oh, the usual scary stories,” he responds lightly; but the anxiety on his face is unmistakable and I feel suddenly protective of him.
“Would you like to discuss this today?” I ask gently, wondering if he might want his wife there.
“As you can see I’m dying to know,” he says, pleased at his own joke.
If you are a cancer patient, or care for someone with the illness, this is something you might have thought about. “How do people die from cancer?” is one of the most common questions asked of Google. Yet, it’s surprisingly rare for patients to ask it of their oncologist. As someone who has lost many patients and taken part in numerous conversations about death and dying, I will do my best to explain this, but first a little context might help.
Some people are clearly afraid of what might be revealed if they ask the question. Others want to know but are dissuaded by their loved ones. “When you mention dying, you stop fighting,” one woman admonished her husband. The case of a young patient is seared in my mind. Days before her death, she pleaded with me to tell the truth because she was slowly becoming confused and her religious family had kept her in the dark. “I’m afraid you’re dying,” I began, as I held her hand. But just then, her husband marched in and having heard the exchange, was furious that I’d extinguish her hope at a critical time. As she apologised with her eyes, he shouted at me and sent me out of the room, then forcibly took her home.
It’s no wonder that there is reluctance on the part of patients and doctors to discuss prognosis but there is evidence that truthful, sensitive communication and where needed, a discussion about mortality, enables patients to take charge of their healthcare decisions, plan their affairs and steer away from unnecessarily aggressive therapies. Contrary to popular fears, patients attest that awareness of dying does not lead to greater sadness, anxiety or depression. It also does not hasten death. There is evidence that in the aftermath of death, bereaved family members report less anxiety and depression if they were included in conversations about dying. By and large, honesty does seem the best policy.
Studies worryingly show that a majority of patients are unaware of a terminal prognosis, either because they have not been told or because they have misunderstood the information. Somewhat disappointingly, oncologists who communicate honestly about a poor prognosis may be less well liked by their patient. But when we gloss over prognosis, it’s understandably even more difficult to tread close to the issue of just how one might die.
Thanks to advances in medicine, many cancer patients don’t die and the figures keep improving. Two thirds of patients diagnosed with cancer in the rich world today will survive five years and those who reach the five-year mark will improve their odds for the next five, and so on. But cancer is really many different diseases that behave in very different ways. Some cancers, such as colon cancer, when detected early, are curable. Early breast cancer is highly curable but can recur decades later. Metastatic prostate cancer, kidney cancer and melanoma, which until recently had dismal treatment options, are now being tackled with increasingly promising therapies that are yielding unprecedented survival times.
But the sobering truth is that advanced cancer is incurable and although modern treatments can control symptoms and prolong survival, they cannot prolong life indefinitely. This is why I think it’s important for anyone who wants to know, how cancer patients actually die.
“Failure to thrive” is a broad term for a number of developments in end-stage cancer that basically lead to someone slowing down in a stepwise deterioration until death. Cancer is caused by an uninhibited growth of previously normal cells that expertly evade the body’s usual defences to spread, or metastasise, to other parts. When cancer affects a vital organ, its function is impaired and the impairment can result in death. The liver and kidneys eliminate toxins and maintain normal physiology – they’re normally organs of great reserve so when they fail, death is imminent.
Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food, leading to progressive weight loss and hence, profound weakness. Dehydration is not uncommon, due to distaste for fluids or an inability to swallow. The lack of nutrition, hydration and activity causes rapid loss of muscle mass and weakness. Metastases to the lung are common and can cause distressing shortness of breath – it’s important to understand that the lungs (or other organs) don’t stop working altogether, but performing under great stress exhausts them. It’s like constantly pushing uphill against a heavy weight.
Cancer patients can also die from uncontrolled infection that overwhelms the body’s usual resources. Having cancer impairs immunity and recent chemotherapy compounds the problem by suppressing the bone marrow. The bone marrow can be considered the factory where blood cells are produced – its function may be impaired by chemotherapy or infiltration by cancer cells.Death can occur due to a severe infection. Pre-existing liver impairment or kidney failure due to dehydration can make antibiotic choice difficult, too.
You may notice that patients with cancer involving their brain look particularly unwell. Most cancers in the brain come from elsewhere, such as the breast, lung and kidney. Brain metastases exert their influence in a few ways – by causing seizures, paralysis, bleeding or behavioural disturbance. Patients affected by brain metastases can become fatigued and uninterested and rapidly grow frail. Swelling in the brain can lead to progressive loss of consciousness and death.
In some cancers, such as that of the prostate, breast and lung, bone metastases or biochemical changes can give rise to dangerously high levels of calcium, which causes reduced consciousness and renal failure, leading to death.
Uncontrolled bleeding, cardiac arrest or respiratory failure due to a large blood clot happen – but contrary to popular belief, sudden and catastrophic death in cancer is rare. And of course, even patients with advanced cancer can succumb to a heart attack or stroke, common non-cancer causes of mortality in the general community.
You may have heard of the so-called “double effect” of giving strong medications such as morphine for cancer pain, fearing that the escalation of the drug levels hastens death. But experts say that opioids are vital to relieving suffering and that they typically don’t shorten an already limited life.
It’s important to appreciate that death can happen in a few ways, so I wanted to touch on the important topic of what healthcare professionals can do to ease the process of dying.
In places where good palliative care is embedded, its value cannot be overestimated. Palliative care teams provide expert assistance with the management of physical symptoms and psychological distress. They can address thorny questions, counsel anxious family members, and help patients record a legacy, in written or digital form. They normalise grief and help bring perspective at a challenging time.
People who are new to palliative care are commonly apprehensive that they will miss out on effective cancer management but there is very good evidence that palliative care improves psychological wellbeing, quality of life, and in some cases, life expectancy. Palliative care is a relative newcomer to medicine, so you may find yourself living in an area where a formal service doesn’t exist, but there may be local doctors and allied health workers trained in aspects of providing it, so do be sure to ask around.
Finally, a word about how to ask your oncologist about prognosis and in turn, how you will die. What you should know is that in many places, training in this delicate area of communication is woefully inadequate and your doctor may feel uncomfortable discussing the subject. But this should not prevent any doctor from trying – or at least referring you to someone who can help.
Accurate prognostication is difficult, but you should expect an estimation in terms of weeks, months, or years. When it comes to asking the most difficult questions, don’t expect the oncologist to read between the lines. It’s your life and your death: you are entitled to an honest opinion, ongoing conversation and compassionate care which, by the way, can come from any number of people including nurses, social workers, family doctors, chaplains and, of course, those who are close to you.
Over 2,000 years ago, the Greek philosopher Epicurus observed that the art of living well and the art of dying well were one. More recently, Oliver Sacks reminded us of this tenet as he was dying from metastatic melanoma. If die we must, it’s worth reminding ourselves of the part we can play in ensuring a death that is peaceful.
Katie Roiphe begins her study of writers in their last hours with the story of a near-death experience: her own. At the age of 12 she began coughing up blood, but decided not to tell anyone – not her parents, or sisters, or doctor. She had in fact developed acute pneumonia, and after an operation that removed half of a lung she came out of hospital weighing 60lb, “too weak to open a door”. Ever since that narrow escape, death became her obsession, but one that continued to defy understanding or articulation. Who could make sense of such a thing? Her answer: great writers, specifically great writers as they approached death’s door. “I think if I can capture death on the page, I’ll repair or heal something. I’ll feel better. It comes down to that.” This mini-memoir, and a coda, are the most compelling parts of The Violet Hour. They bookend a sequence of five case studies of writers whose thoughts on mortality are often arresting, sometimes moving, yet never add up to a coherent vision of what Henry James called “the distinguished thing”.
Roiphe (above), an essayist, teacher and contrarian, is a woman up for a challenge. Her most recent books – a study of literary unions, Uncommon Arrangements, andIn Praise of MessyLives, a scattershot broadside against the way we live now – reveal her tough, unbiddable, non-ingratiating character. Fittingly, her first subject is Susan Sontag, a writer whose personal and intellectual fierceness could be Roiphe’s model. Sontag’s determination to outface death became part of her legend. She had already survived cancer, twice, when she was diagnosed with leukaemia in 2004. Believing herself to be “exceptional”, she rejected the evidence, adopting a get-well-or-die-trying attitude that caused intense anguish among the people who cared for her – her son David, friends, nurses, hired hands. She took up cudgels once again, enduring chemo and the dangerous procedure of a bone marrow transplant. The treatment caused her shocking physical agony. At this point I couldn’t help thinking of Woody Allen’s line: “I don’t want to achieve immortality through my work. I want to achieve it through not dying.”
Sontag is an extreme case – and the only woman – in this book. Her example is unlikely to make Roiphe, or anyone, “feel better” about death. Sigmund Freud, on the other hand, adopted the opposite approach. Even as a young man he disliked the idea of “prolonging life at all costs”. Stricken by an inoperable cancer of the jaw, he refused any painkillers other than aspirin. “I prefer to think in torment than not to be able to think clearly,” he said. Was his stoicism a better, braver way to face the end? As Larkin wrote in “Aubade”, “Death is no different whined at than withstood”. His disciples believed that Freud had no terror of the end, but Roiphe wonders if he protested his indifference too much: he may have been trying to persuade himself that he didn’t care.
Shadowing Roiphe’s book is a tentative desire to find something consolatory – a truth, a meaning – in death. Can writers teach us how to die? The uncertain, provisional nature of her project is evident. Instead of a continuous narrative, she writes in discrete floating paragraphs, as if conducting a philosophical investigation. Either that, or she doesn’t quite know how to structure her argument. Maurice Sendak, a writer and illustrator she has revered from childhood, described death “as if it is a friend who is waiting for him”. He suffered a heart attack at 39, but lived on till his 80s. He owned Keats’s original death mask and would take it out “to stroke the smooth white forehead”. When his lover died, Sendak drew his corpse, obeying the creative instinct “to turn something terrible into art”. Here Roiphe does get at something useful, which is the consolation of work: “For the time it takes to draw what is in front of you, you are not helpless or a bystander or bereft: You are doing your job.” (I would take “or bereft” out of that sentence.)
John Updike, characteristically, worked unto the last, writing some of his most poignant poems (in Endpoint) from his hospital bed. Like Freud, he cleaved to stoicism in considering death, but unlike him had sought comfort in religious faith and sexual adventure, the latter his way – or at least his characters’ way – of cheating mortality: “If you have a secret, submerged, second life, you have somehow transcended or outwitted the confines of a single life.” In an almost too-perfect illustration of his twin drives we learn that Updike plotted Couples, his great novel of adultery, while in church – “little shivers and urgencies I would jot down on the program”. The oddness of this chapter, however, concerns what happened between Updike’s family during his last illness. His first wife Mary and their four grown-up children seem to have come a cropper under the Cerberus-like vigilance of his second wife Martha. The children felt that Martha, perhaps with her husband’s tacit agreement, restricted their “alone-time” with Updike. This is interesting as gossip, but I can’t see how it enlarges our understanding of the writer or his work.
Even less illuminating is the record of Dylan Thomas’s bibulous last days in New York, swaggering – or staggering – from hotel to pub to hospital and thence into a coma. Roiphe notes that myths have clustered around his death, and the causes of it. Some still argue that he “wasn’t an alcoholic”. Seriously? Put it this way: if Dylan Thomas was not an alcoholic then his was an even more horrifying personality than at first appears. Addiction would at least explain, if not excuse, his lechery, his flakiness, his self-pity, his self-loathing, his tendency to steal from his friends, and the fact that he had written only six poems in his last six years. At 39, Thomas is the youngest to go of this small assembly and the one whose death I felt least inclined to lament.
The Violet Hour does, however, rally at the end. For reasons the author doesn’t entirely understand she seeks an interview with James Salter, then 89 years old, and nearly the last Great American Novelist. To her surprise he agrees to talk. Perhaps it is her contact with a living subject, perhaps it is Salter’s wry, Delphic way with words, or the fact that he came close to death as a fighter pilot in Korea, but something is unlocked by their encounter and Roiphe at last identifies what her quest has been about – not death but the fear of death: “The knowing you are about to die. The panic of its approach … That’s what I’ve been trying to write my way through.” It returns her to another formative moment in her life, the sudden collapse of her father – a heart attack in the lobby of his building – and her belated realisation that he must have felt pain in the minutes before he died. She is excruciated by the idea of his pain, and that he may have panicked. “The idea that he didn’t have time to be afraid had consoled me.”
This book is Roiphe’s haunting but muddled attempt to come to terms with the mystery of extinction. Her father died, and she will never know what he was going through. Salter, who died last year, knew best: “Don’t dwell on it.”
Award-winning Australian writer Cory Taylor spent the last years of her life fascinated with her own mortality, writing a memoir that she hoped would trigger more open and honest conversations about death. In her last weeks, she shared some of her insights in a bedside interview with Richard Fidler.
Cory Taylor died on Tuesday, without pain, and with her family all around her. She had just turned 61.
For a decade, she had lived with the certainty of her death from melanoma-related brain cancer.
Her final project, Dying: A Memoir, was written earlier this year in the space of just a few weeks.
Julian Barnes wrote after he read Dying, ‘We should all hope for as vivid a looking-back, and as cogent a looking-forward, when we reach the end ourselves.’
Her publisher, Michael Heyward, announced plans to publish the book around the world in the coming months.
Cory’s writing career started with screenwriting, moved into children’s books, and then novels for adults.
Her first novel, Me and Mr Booker, won the Commonwealth Writers Prize (Pacific Region) and her second, My Beautiful Enemy, was shortlisted for the Miles Franklin Literary Award.
Just three weeks ago, Richard Fidler spoke to Cory at her home in Brisbane. Here are some highlights of their conversation about her life, and her feelings about her own death.
On life in her last weeks
‘I move from my bed in my bedroom, to my sofa here in the living room, and basically I stay here and I’m fed delectables all day and that’s about it.
‘Reading, I find pretty exhausting, which is sad. Even watching stuff on TV taxes you a lot. But I miss reading, so I do force myself to read.
‘One of the things I do is dream a lot about life. Not dream as in sleep dreaming, but day dreaming. It’s not as if I’m gathering memories but I still am very steeped in memory.
On being a ‘beginner’ at dying
‘I’ve never seen anybody die, so it’s not something I know anything about.
‘I think we should all study it. I think we should all spend time with people when they’re dying.
‘Basically, it’s all hidden from us … we’re so ignorant about how does it happen actually, physically, and then what do we read from that?
‘I wish I’d known a lot more about it before now.’
On the idea of assisted dying
‘I’ve always felt that I have controlled my destiny, pretty much. That may be a compete delusion—well, obviously it is, because I’m dying and I didn’t plan that.
‘But it’s the lack of control when you’re dying that is so terrifying.
‘Even to think that you have the possibility to control the circumstances, to put yourself out of your own misery, it just renews that sense you do have some control over what’s going to happen to you.
‘And that is a real comfort.’
On whether to think about dying
‘I don’t think you should think daily on it, but I do think it’s worth having in the back of your mind, in terms of the kinds of conversations you want to have with your family … so that they have a sense that you are not there forever.
‘That means that you value certain things now and you want to enjoy certain things now and there are a whole lot of things you don’t want to do and you don’t want to waste time on, because you’re aware that it’s all finite and it can be over faster than you think.’
‘The last thing I wanted was to write a morbid analysis of my cancer treatment or my “battle” with this disease.
‘The war metaphor doesn’t really work for me at all. It is a “coming into” dying, as if that’s a natural flourishing in a way.
‘It is a momentous thing. It’s the most important thing that’s going to happen to you after your birth.
‘The complete randomness of the whole thing … that’s not what saddens me about dying. The ultimate randomness is death, isn’t it?
‘Despite all the randomness and precariousness of it all, it’s still an enormous gift and an enormous blessing, so why would you begrudge any of it? It doesn’t really matter in the end.’
On consoling loved ones
‘People have been to me surprisingly emotional about me dying, when I don’t feel as sad as they are. You want to protect them from that and say: “It is alright.”
‘I think my book has helped my friends to realise I am telling the truth. I am OK.
‘I have managed to do the things I wanted to do, and I’m not going out full of regrets or grudges, or anything like that.’
On her funeral plans
‘I’m a bit hazy on my funeral plans. I had a book launch (in Brisbane) and I was just there in the ether, talking on Skype. And I could see the audience, and it was a bit riotous, and there was lots of laughter, and lots of tears.
‘A lot of people who went called me later and said, “Oh Cory it was fabulous, it was like being at your funeral.”
‘I thought, “Oh that’s good. I’ve done it now. I don’t have to do it again!”
‘So I’d probably want a repeat of the launch, which is just a room full of friends, and lots of grog and food, and people saying lovely things about you. That’d do.’
I spent most of Sunday thinking about what I would text my mom if I was hiding in a nightclub bathroom and believed a gunman was about to kill me. I pictured the bathrooms of my favorite clubs. I imagined where I would hide. I imagined how I would try to barricade the door. I pictured what my body would look like on the floor.
I wish I could say I left my apartment that day and fearlessly celebrated Pride month. I wish I could say I attended a rally or a vigil, or even just got drunk at a bar with my queer brothers and sisters. I wish I could say I became a living testament to LGBT courage in the face of violence and hatred.
But I didn’t. I lay on my couch and imagined being shot and killed in a bathroom.
I understand why so many people have chosen to respond to the massacre in Orlando with proud public displays of solidarity with and support for the LGBT community. The history of LGBT people in the United States is a story of resilience, even in the face of incredible pain and loss. We respond to a world that asks us to disappear by chanting, “We’re here! We’re queer! Get used to it!” We celebrate Pride partly as an act of defiance and perseverance.
After the shooting in Orlando, it’s tempting to push ahead to the part where the LGBT community pulls itself up by its bootstraps and recommits to fighting bigotry and making the world a more welcoming place. I am tempted by that, too.
At the same time, LGBT people aren’t superheroes. What happened in Orlando opened wounds in people thousands of miles away from the gunman. LGBT people are grappling with the fact that there is no such thing as a “safe space,” that we created the idea of a “safe space” to stay sane, but it is an illusion.
It’s hard to overstate the mental and emotional damage that realization has on queer people. For me, it has been a profoundly isolating experience. Fear makes you want to retreat from the world, makes you want to stop talking and pull away from anything that might put you at risk.
I walked to work Monday morning, searching for copycat executioners in the eyes of strangers on the street. I packed gym clothes and caught myself wondering if my tank top was too flamboyant. I watched straight people discussing queer bodies on television and wondered how they could talk about Orlando if they didn’t understand what it’s like to walk into a gay club and think, “Finally, I’m safe — this is home.”
I don’t know what to do with any of that. Even now, I’m writing because I desperately want to feel like I have some control over what happens to me. To do something, however small, to make myself feel like I have a grip on things. It isn’t working.
If you have queer people you care about in your life, talk to them. Always, but especially now. Maybe they seem fine. Maybe they live somewhere that feels very far away, in distance and culture, from Orlando. Maybe it feels like an uncomfortable subject to bring up.
You should still talk to them.
Many LGBT people have spent years keeping problems — especially problems related to being LGBT — to ourselves. We have become masters of seeming fine, of convincing ourselves that we are fine, when we are not fine. Because we badly want to be fine.
There is a good chance your charming, confident, smiling gay friend feels deeply scared and unwelcome in the world.
Ask them how they’re doing. Tell them you love them. Tell them your love doesn’t come with caveats. Tell them it’s okay to cry. Tell them they don’t deserve to be scared. Tell them that it’s okay to be scared anyway. Tell them it’s okay to be afraid of dying. Tell them that they matter to you — and that you want them here, alive, now.
None of that will stop an LGBT person from being afraid of dying. Nor will it stop them from mourning the dead. The only way to deal with pain and trauma is to sit with it until it’s done with you.