Category: COMMENTARY

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How to survive a pandemic

— by a gay man who’s lived through one before

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From the number of complaints I’m hearing of pandemic fatigue and the widespread resistance to simple precautionary measures such as wearing a mask at the grocery store, it’s clear to me that many people don’t fully appreciate what the gay community has been dealing with for the past 40 years and don’t understand how we survived the AIDS epidemic.

At the risk of over-sharing, here’s a snapshot of what it was like to have come of age in the midst of a sexually transmitted and deadly virus.

We learned how to protect ourselves and one another by practising safer sex. We started using condoms, for which gay men had previously had no use.

And we did so not just for a few short months, but for decades.

Over the years I’ve had boyfriends and lovers and one-night-stands with men whose names I’ve long since forgotten, and I used condoms with all of them.

I had casual sex with strangers in bathhouses and in the backrooms of leather bars and I used condoms. I had sex in parks and parked cars and I used condoms.

I had sex when I was sober and I had sex when I was too drunk to stand up or even see straight, and nonetheless I somehow managed to use condoms.

I had sex with men who warned me that they were HIV-positive and with men who assured me that they were HIV-negative, and in either case I used condoms. I worked on the assumption that anyone and everyone might be infected – myself included – and I used condoms.

“We did this because we knew that unprotected sex could be fatal”

I had sex with the same man hundreds of times over the course of a 20-year relationship and we used condoms every single time, except for a very brief attempt at monogamy after 15 long years of endlessly discussing trust and testing and accountability, after which we decided that it would be easier and less stressful not to talk about it anymore and to just go back to using the damn condoms.

Occasionally condoms broke or came off, or I slipped up and put myself at risk, after which I lived in a state of anxiety for up to six months waiting for reliable antibody test results.

Then I renewed my promise to myself to be more careful, to do better.

We did this because we knew that unprotected sex could be fatal. We did this as we mourned and buried friends and co-workers and ex-lovers and attended more funerals than any young person should ever have to.

Whenever I needed a reminder of the importance of safer sex, all I had to do was look at the photograph that my older lover kept taped to his fridge, of a dozen of his closest friends at a birthday party in the early ‘80s. All of them so young, all of them so handsome. All of them dead by the time we met.

An entire generation of vibrant, talented men cut down in their prime, caught off guard by an emerging disease, wiped out by an invisible enemy.

‘We educated ourselves and the community’

We suffered from survivor guilt, wondering how and why we survived when so many had perished. We experienced anticipatory grief, wondering which of us would be next. At times we were nearly paralyzed with fear. Still we soldiered on.

We transformed our fear and grief into action by volunteering and fundraising. For years on end, every social event and drag show and gay bingo night involved selling raffle tickets and passing a bucket to scrape together donations.

We delivered meals to people too weak to cook for themselves and we visited the dying in hospices and palliative care wards and we stitched memorial quilts to commemorate those we’d lost.

We organized an annual AIDS Walk to support people living with HIV and we marched in the annual Pride Parade to remind ourselves and the world that we were still here and that we deserved the same rights as everyone else.

We educated ourselves and the community. My colleagues and I attended national and international AIDS conferences and created educational materials and conducted sexual health workshops. I coordinated a small group of dedicated volunteers who distributed literally millions of free condoms wherever men met for sex.

We were on a mission: every location and every interaction was another opportunity to promote HIV prevention.

“We trusted doctors and scientists”

We made weekly rounds of smoky bars with a skateboarding drag queen dressed as a nun and we sat in steamy bathhouses and talked to naked strangers about their sexual activities.

Late at night after the bars closed we cruised public sex environments with a bagful of condoms and a fistful of referral cards. We educated closeted men cheating on their wives and girlfriends, referring them to anonymous HIV testing sites and confidential counseling services.

We distributed condoms and clean needles to street kids and hustlers and transgender sex workers and injection drug users, and we collected untold thousands of used syringes for safe disposal.

We spoke to students of all ages and to young offenders in juvenile detention and we sat in healing circles in maximum-security penitentiaries with convicted rapists and murderers and encouraged them to keep each other safe.

We trusted doctors and scientists, even as the findings and recommendations changed. For years we used condoms and lubricants containing Nonoxynol-9 because health authorities told us that it might help prevent the spread of HIV, and then we stopped using it when studies showed that it actually increased the risk of infection.

We didn’t freak out or give up or give in to conspiracy theories and stop trusting science; instead we adjusted our behaviour as new and sometimes contradictory data became available.

‘To stay safe, to stay strong’

We told each other to stay safe, to stay strong. We put up posters encouraging everyone to “Be Here for the Cure.” Those of us with HIV took highly toxic pharmaceuticals for years and willingly participated in clinical drug trials until more effective and less damaging antiretroviral therapies eventually transformed HIV into a manageable illness.

Those of us who were as yet uninfected signed up for Phase III vaccine trials, allowing multinational pharmaceutical companies to inject us with experimental vaccine candidates, putting our bodies at risk for the greater good.

We told each other to be patient, that an effective vaccine would be available within a few years, never imagining that decades later the world would still be waiting.

We did all of this with insufficient government funding, with insufficient media attention and with insufficient support from our families of origin, while politicians largely ignored our plight and religious leaders preached that we got what we deserved and hateful bigots picketed our funerals with signs saying “God Hates Fags” and most people were simply oblivious to what was happening because it wasn’t happening to them.

“Normal wasn’t what we wanted; we wanted things to be better“

We didn’t whine about the inconvenience the virus was causing. We didn’t demand that the government tell us exactly how much longer the pandemic would last, or complain that we just wanted everything to go back to normal. Normal wasn’t what we wanted; we wanted things to be better.

We took to the streets to demand civil rights and adequate research funding and more effective treatment options, not to demand that hairdressers and nail salons re-open.

I’m 53 years old and I have been successfully managing to avoid contracting and spreading a potentially deadly virus not just for the past few months, but for my entire adult life.

I first heard about AIDS when I was an adolescent, back when it was tentatively known as GRID: Gay-Related Immune Deficiency. I saw a small story in the local newspaper about gay men in San Francisco and New York dying from a mysterious new illness, and even though I had never been to San Francisco or New York and even though I was too young to have had sex and had no one to talk to about being gay, I thought to myself: I better pay attention to this. I better take this seriously. Or it might kill me.

“I took it seriously”

I’ve done things in my life of which I’m not proud, but this is not one of them: I paid attention. I took it seriously. I didn’t let it kill me. Nor did I let it stop me from having an active and adventurous sex life, but I took precautions. I stayed safe, I stayed strong.

I lived to tell the tale.

So please: wear a mask in public, especially indoors. Avoid crowds and wash your hands frequently. Listen to public health officials. Trust the science and follow the recommendations, even as they might change.

This is the new normal; it might continue for years. Prepare yourself to be in this for the long-haul. Ignore the risks at your peril, or learn from the experience of the gay community in how to effectively respond to a pandemic with no end in sight: do your small part, protect yourself and take care of each other, work together for the common good. Stay safe. Stay strong.

Adapt and survive.

Complete Article ↪HERE↩!

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Why we shouldn’t fear dying alone, or monothanatophobia


The sunrise burns off the morning mist over the remains of trenches in the Newfoundland Memorial Park at Beaumont Hamel on November 09, 2018 in Albert, France.

by Deirdre Pike

Despite growing up in a death-denying culture, place and time in Canada, pretty long past the days where dead bodies were openly displayed and waked at a family home instead of a funeral home, I have come as far as my 57th year (starting this week) with an openness to conversations about death and dying not normally heard among my peers.

There are many experiences that may have contributed to this. Perhaps being born in November, the Month of the Dead, just two days after Remembrance Day, had an impact. Being named after Ireland’s Deirdre of the Sorrows (not intentionally, my mom assures me) who is said to have died by suicide, perhaps by having her head smashed on a rock by the passing royal chariot (nice touch), may have played a part in my ability to banter about death more freely than others.

Becoming a Catholic, when I was 15, introduced me to ways of ritualizing death and praying for the dead just in time to help me cope with the deaths of seven of my high school peers in three separate car accidents and my stepbrother’s death by suicide a year later.

I also credit my love of excellent rock music for giving me a healthy outlook on death. Take Pink Floyd, for instance.

“And I am not frightened of dying, any time will do, I don’t mind. Why should I be frightened of dying? There’s no reason for it, you’ve gotta go sometime.”

Lying in bed (just like Brian Wilson did) as a teenager, falling asleep, high, with giant headphones blasting these lyrics into my brain, coupled with Trooper’s, “We’re here for a good time, not a long time,” has pretty much described my approach to death, and therefore life, or my approach to life, and therefore death.

It’s that approach, 14 years of parish ministry and more that I have been bringing to what’s called a “Social Innovation Lab.” In this case, the laboratory includes 25 or so palliative care clinicians, social activists, consumers, policy and system leaders, health care leaders and change agents from across Canada to concentrate for six solid days on one question: “How can we change the culture of our health system so the palliative approach, which creates a truly person-centred system, becomes the norm across the whole system?”

This “Palliative Care and Complexity Science Laboratory” is what brought me to be sitting in a circle of a dozen or so residents from a local seniors’ apartment building with three palliative care doctors, discussing monothanatophobia — the fear of dying alone. Although the word itself was brand new to me and all of the people who accepted our invitation to come and discuss it, the concept wasn’t.

We chose our topic after reading about the man who died alone in Hamilton’s social housing recently and went undiscovered for a couple of days before a woman below found some of his remains leaking into her apartment. Nobody wants that to be the story of their last days alive — or dead — on Earth.

There is strong evidence to show why we need to be more intentional about building community now and in the days ahead. Data about living situations from the 2016 Canadian census show for the first time that the number of one-person households has surpassed all other types of living situations. More than a quarter of all households were people living alone.

Applying the principles of palliative care means having conversations about living, not dying. It’s more than making sure community exists to support people in their final days of life. It’s also making sure people are connected while they’re living in a way that respects privacy yet decreases social isolation so no one dies alone.

One great read I recommend on the topic of death and dying is “Talking About Death Won’t Kill You,” by Dr. Kathy Kortes-Miller.

With an essential chapter for anyone on social media called, “Posting, Tweeting and Texting: Dying in a Digital World,” I urge you to make this a holiday gift to your family so you can “out” the conversation of death and dying to make it, as Kortes-Miller says, a logical extension of our living.”

Complete Article ↪HERE↩!

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Homeless and Dying in America

Facing the End of Life Alone

By Betty R. Ferrell, PhD, RN

As Homeless Persons Near the End of Life

[S]tatistics about the US homeless population are staggering. More than a million people face homelessness each year in the United States, and these individuals often have multiple complex illnesses and comorbid mental health conditions. Orchestrating care for the homeless population poses significant challenges.

Little is known about the end-of-life (EOL) experiences of homeless persons. A major gap in knowledge exists regarding the symptoms experienced by homeless persons at or near the EOL—information that would help clinicians not only manage these symptoms but also assist homeless persons with advance care planning and decision-making around death and dying.

To characterize these symptoms, Tobey and colleagues[1] surveyed homeless persons at a medical respite program who were approaching the EOL. The demographic data derived from this study speak to the distinct palliative care needs of the homeless. Sociodemographic data from this study, showing that 60% had substance use disorders and 85% abused alcohol, will greatly affect the provision of care for this population. All homeless patients interviewed reported experiencing pain, and psychosocial needs were equally significant. Nearly all (95%) of the sample had experienced the death of a loved one, 25% worried daily about their own mortality, and 75% worried that no one would even know that they had died.

Viewpoint

The palliative care needs of various subgroups of people with serious illnesses are well documented in the literature, providing data about the unique physical and psychosocial needs of patients across many diagnoses and clinical settings.[2,3,4] The study by Tobey and colleagues adds to the body of literature by describing the distinct needs of the homeless population. The findings of this study provide insight for clinicians and for health policy administrators to attempt to meet the challenging needs of the homeless.

The study’s design was commendable. Direct interviews with homeless persons helped to understand their unique needs during their last months of life. The use of a medical respite center serving the homeless provided an ideal environment for the study.

Although the study sample size was small, the findings are rich in meaning and have implications far beyond the medical respite unit where the study was conducted. These findings will also apply to the many diverse settings where homeless persons seek care: public hospitals, emergency departments or urgent care centers, Veterans Affairs hospitals, and other settings.[5,6] Continued research and clinical advances in the care of the homeless are obligations of palliative care, a field committed to comfort and respect for all patients.

Complete Article HERE!

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I’m glad my friend was able to make his own end-of-life decision

Cave of Coffins at Beit Shearim National Park in Israel is believed to be the final resting place of Judah Ha-Nasi, a talmudic sage whose maid assisted him in dying.

By Stewart Florsheim

[A] close friend passed away recently — no doubt among the first people to take advantage of California’s End of Life Option Act. Signed into law in 2015 and in effect as of June 9, 2016, the law gives terminally ill adults who have only six months to live the ability to request and obtain life-ending medication.

My friend had a virulent form of prostate cancer. He lived with it for a few years, but when the tumors began to invade almost every part of his body, he entered hospice and requested the drugs. He wasn’t sure he would take them, but when the pain kept getting worse and it became obvious that the end was near, he made his decision. He died peacefully with his family at his side.

Along with California, only Oregon, Washington, Vermont, Montana, Colorado and Washington, D.C., support medical aid in dying. Now, with the recent tide of conservatism, opponents of medical aid in dying are moving quickly to attack the option.

The law was challenged in Riverside in August, but a judge denied the request for an injunction filed by a group of anti-choice physicians. The Montana House of Representatives was considering a bill that would have allowed the state to execute doctors for prescribing end-of-life medication. The bill was narrowly defeated on March 1. The nominee to the Supreme Court, Judge Neil Gorsuch, wrote a book on how to defeat death-with-dignity bills, suggesting the option violates the Constitution.

I have always been a strong advocate of death with dignity. I first became involved in this issue several years ago, when my mother found out she had ALS, a devastating neurological disease. She was 77, a refugee from Hitler’s Germany, and knew what was in store. She asked me to help her.

I spoke to her doctor, who said he might be able to “put her under” if her distress became unbearable. We left it at that, until hospice became involved. When I told them about the agreement, they said they could not support it and would now monitor the amount of morphine in the house.

At a loss, I did research and found an organization called Compassion & Choices. They came to visit my mother and me, and told us what she could legally do to take control of her death in New York. She would have to acquire the appropriate life-ending medication, and take it while she was still functional. Like most patients in her situation, she was relieved to know what she could do, but ended up dying on her own.

All religions take a stand on this issue. There is no question that Jewish law and tradition reject suicide, prohibit murder and accept pain and suffering as a part of life. The tradition is less clear when it comes to a person who is already dying of a terminal illness.

The Talmud tells the story of the death of a great sage, Rabbi Judah Ha-Nasi. The rabbi is suffering greatly but his students are praying with fervor in the courtyard to keep him alive. Out of compassion for his suffering, his maidservant drops a jar from the rooftop, stunning the students into silence, at which point the rabbi dies.

This story has been used to justify the removal of life support, validating the patient’s right to a death with dignity, without pain and suffering. Judaism also usually considers palliative care an appropriate measure if someone is suffering at the end of life. But most Jewish traditions end there.

If we allow caregivers to remove life support, and to provide palliative care, why can’t we give the terminally ill the tools for a peaceful death? The states that support the legislation have very strict safeguards in place, and patients must take the life-ending medications themselves, after they have been prescribed by a physician for that purpose.

My friend found great comfort knowing he had the life-ending medication, even if he wasn’t sure he would take it. He told me it freed him from anxiety, so he could spend his last days focusing on what meant most to him — being with his family and his friends.

Complete Article HERE!

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How Death Makes Us Human — For Now

Thinking of death is inherent to being human. Technological advances, like so many human activities, reflect our desire to avoid it. But that may all be bound to change.

 
By Darío Sztajnszrajber

The human being’s link to death is intrinsic and existential. It is not an external notion one could discard or disregard and somehow remain human. Death, simply put, is a part of us.

As the German philosopher Martin Heidegger observed, our death is both imminent (we could die almost immediately) and conceived in our minds as too distant (we usually think we still have a long time left to live). French philosopher Jacques Derrida asked cheekily, “Is my death possible?” when dying precisely eliminates all possibilities. The curious thing is that while we know we are born to die, we spend our lives trying to transcend death. There is a basic awkwardness or nonsensical origin to all our actions: Whatever we do, we will still die, whence our flight toward daily routines in order to forget or seek relief. This ambiguity may explain a great part of human culture. Just as we want to negate death, we also seek to surpass ourselves.

The 20th-century Spanish writer Miguel de Unamumo postulated that human anxiety was a product of the tension between reason on the one hand, which understands that life is finite, and the desire that it continue forever. That desire has become the engine behind all the attempts to supercede our limits. Thus with every technological innovation, symbolic transformation, revolution in values or new narrative on the meaning of life, are we not aspiring, ultimately, to achieve immortality?

Graveyards do not so much recall our provenance as our destination

 
Now death, which pertains to others, is not the same as dying, which we cannot possibly experience. Cemeteries and their rituals are a means of linking ourselves to the deaths of others, the only possible death experience. In any case, a person supposes that he too will also be buried, honored and remembered — or forgotten. Graveyards do not so much recall our provenance as our destination, prompting the sensations of uncertainty, respect and concern among us all.

Cemetery in Buenos Aires

Cemeteries remain of their time of course. Technology makes it possible today to live on through images and sounds, and create a presence from the experience of absence. It would be interesting to analyze the impact of death’s omnipresence, and the evolution both of mourning and the mechanics of a memory that now is live before us, always within reach.

In reality, current trends like robotics or cloning will change the roots not just of our ties with the death of others, but our own dying. The day will eventually come when we have resolved death, which can only happen when we stop dying. That of course is also when we will stop being human. And so we shall mutate again …

Complete Article HERE!

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When dying is a choice

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[I]t was cold but the sun was shining when my father looked out the window and said he wanted to die.

He was lying in a hospital bed, tubes tying him to machines and drips. He was 65, wasn’t a smoker but, like a lot of firefighters, had inhaled things that embedded in his lungs, slowly strangling them. His skin was ashen, his eyes wet and hauntingly sad.

When he said he wanted to die, my immediate reaction was to reassure him, to hold his hand, to tell him that my mother, my brother, my sister, and I didn’t want him to go, that we loved him too much to let him go, that he couldn’t go just yet.

That was 29 years ago, and it took me many years to realize that my reaction to my father’s plaintive, death-bed declaration was selfish, that it was rooted in what I thought was best, what I wanted, not what he thought was best, not what he wanted.

My father lingered for several weeks after he told me he wanted to die, suffering greatly. I have no idea if he would have opted to end his life earlier, to end his suffering earlier, but I wish he had the option.

It would be helpful to know whether a majority of Massachusetts legislators think others should have that option, too, but for the last eight years they have punted on the Death with Dignity Act, bottling it up in committee so that it dies without the dignity of a full and fulsome hearing.

Five years ago, a referendum that would make it legal for physicians to prescribe medications that terminally ill people could use to end their lives was narrowly defeated. But, like all social change, like all civil rights, the right to die with dignity is moving forward, inexorably.

Last month, the Massachusetts Medical Society commissioned a survey of its members’ attitudes toward what they called “medical aid in dying.” For a group that has historically opposed what some call physician-assisted suicide, the mere act of seeking its members’ opinions acknowledges the shift, much of it generational, in thinking.

In October, Dr. Roger Kligler, a retired Falmouth physician with prostate cancer, filed a lawsuit asserting he has a right to obtain a lethal dose of medication from a doctor willing to prescribe it if he becomes terminally ill and chooses to avoid more suffering.

Dr. Kligler rightly believes he’ll get a quicker answer from a court than the Great and General Court. As it has with other highly contentious matters, including same-sex marriage and the legalization of marijuana, the Legislature has been more than happy to let the courts or the public do the heavy lifting.

But even if a court agrees with Dr. Kligler’s argument, the decision could be narrowly tailored to only his case. And as the messy rollout of marijuana legalization has shown, legislating complex matters by referendum often leads to convoluted results.

The Legislature needs to take on Death with Dignity, in all its complexity.

Nine years ago, State Representative Lou Kafka sat down with one of his constituents, a guy from Stoughton named Al Lipkind, who was dying of stomach cancer. Lipkind asked Kafka to file a bill that would make it legal for doctors to write prescriptions for terminally ill people who wanted to avoid needless suffering. Kafka refiles the bill every session. The initial dozen co-sponsors have grown to 40.

“Al was able to make me see it through his eyes,” Kafka told me. “Unless and until it becomes personalized, it’s an issue you don’t necessarily think about.”

Not long after Al Lipkind died in 2009, Kafka watched helplessly as the same disease that slowly and torturously killed my dad did the same to his father.

“I watched him gasp for breath,” Kafka said.

Like me, Lou Kafka doesn’t know if his father would have chosen to end his life before enduring months of agony. Like me, he wishes his dad had the option.

Complete Article HERE!