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Two men, two losses, two eras

The loss of any loved one is painful and the loss of a spouse is profound. How it is endured depends also on the social, legal and political context in which loss happens, writes Chris Beyrer, a former International AIDS society president, of the two devastating losses in his life.

Beyrer writes in The Lancet:

Losing any loved one is painful. Part, taught the Buddha, of the inescapable fate of us all. But losing a spouse, a life partner, is different—these are the people with whom we are most intimate, who we've chosen, who have chosen us to share the joys and burdens of life's journey. And, if we are blessed with mutual long lives, to share the wisdom, the pleasures and pains of ageing together.

Medicine has known since antiquity that the loss of a spouse can have profound consequences for the surviving member of a couple. Indeed, the first year after such a loss is known to be a time of high risk of mortality for surviving spouses. Each loss of a spouse is intensely personal, as each marriage is at its heart truly known only to the partners in it. Essentially happy, or fraught with discord. Rewarding or constraining. Sexually and emotionally fulfilling or tense and sterile. And of course, marriages are dynamic, and many will experience all of these states over the course of a life together – and not all marriages will survive the difficult times.

But lives and marriages, partnerships and loves, also happen in contexts: within larger families and communities of course, but also within social, legal, and political realities that can support our relationships and help sustain or undermine them. For same sex couples, for gay men like myself, and the two men I have loved and shared my life with, these contexts can vary from enjoyment of the same legal and citizenship rights as opposite sex couples to outright criminalisation and, in the most homophobic states, the risk of incarceration, even the death penalty, for disclosure of our loves and our commitments.

I have had the good fortune to have loved and been loved in return by two magnificent men. And I have suffered the great sadness of losing them both too young. I lost my beloved husband, Mike Smit, to influenza A, pneumonia, and acute respiratory disease syndrome (ARDS) in April, 2019. He was a healthy 53-year-old nurse practitioner at the height of his clinical skills, and a man of great compassion, humour, vigour, and joie de vivre. Mike and I had 22 years together. We were able to legally wed in 2013, when same sex marriage became legal in our US state, Maryland. He always said that our wedding day, in a chapel decorated with white plastic roses at the downtown Baltimore City Court House, was the proudest day of his life.

My first partner, Ed, a New York actor who I met and fell in love with as a medical student, died in my arms of pulmonary Kaposi's sarcoma, a complication of Aids, in New York in 1991. He was just 31 years old. We had seven years together – Ed had been ill for five years, and dying for two years. In that dark era before effective antiretroviral therapy for HIV, Ed was one of so many in our circle felled by Aids. And the context mattered hugely. The legal and civil rights status of gay couples in the US in 1991 meant we were essentially legal strangers.

We were together through my years in medical school, internship, and residency – he died in my last year of training while I was at Johns Hopkins University, where I still teach. At that time, Hopkins had no domestic partner benefits for same sex spouses. And, of course, marriage was not a right gay Americans enjoyed – or thought we'd ever enjoy. So, while the other residents and fellows had health insurance coverage for their families, my coverage was unavailable to Ed. As a New Yorker, he'd qualified for New York Medicaid. His first hospitalisation, for cryptococcal meningitis, had lasted for seven weeks and wiped us out financially but made him eligible for benefits by virtue of poverty and an Aids diagnosis. My training was in another state, and in the dysfunctional patchwork that is the US health-care landscape, state benefits for the poor, like Medicaid, are not automatically transferable. We sought help from the pro bono law services that Gay Men's Health Crisis provides and were advised not to try and change Ed's benefits over from New York to Maryland. There could be delays, initial denials of services, and he could go months without care. On multiple medications to prevent opportunistic infections, this was a risk we couldn't take.

As Ed's health declined, he was increasingly plagued by fevers and rigors, by painful perirectal abscesses, chronic cough, dyspnoea, diarrhoea, and wasting. When it seemed he needed hospitalisation, which was increasingly often, we had brutal long drives through the night from Baltimore to New York, with Ed febrile in the back seat. Our only source of income was my residency stipend and the money I made moonlighting in two Aids clinics. We had no family in Baltimore, so I was the sole caregiver.

Inevitably, the strain of residency, caring for Ed, and the multiple drives to New York led to challenges for me at work. I was found sleeping between patients on an exam table at the clinic. I fell asleep during too many lectures. At some point, the director of the residency programme asked to see me. He was a decent man, so I felt comfortable being honest with him about our situation. I told him my partner had advanced Aids, was declining in health, and that I was caring for him alone. He replied that I wasn't eligible for family leave since Ed was not a family member. I would have to make up any time I missed for caretaking. There was no accommodation for his final illness or his passing. When the residency ended for my peers, I stayed on for two bitter months to make up the time I'd taken to care for Ed and to bury him.

We had mostly good experiences with health care providers. Ed died on the Aids ward at Mount Sinai Hospital in Manhattan and I will remember their care and compassion forever. But we had some terrible experiences too – it was up to the individual providers. People could treat us the way they felt a gay couple dealing with Aids should be treated – with professionalism and kindness or with fear, judgment, scorn. One mercy – New York State had a law where one could designate a medical proxy, which Ed wanted me to do for him. When his anxious and fearful family arrived at the end, they couldn't go against Ed's wishes. There would be no intubation or resuscitation.

I woke up the morning after his death in the small apartment that Ed had secured through a New York City programme for people with Aids and realised, with sickening shock, that I had no right to be there. I couldn't have been on the lease. The landlord didn't know me or my name. If I tried to move our things, I could be accused of theft. Fortunately, he turned out to be a man of real kindness. He'd gathered Ed was gravely ill, and told me I could take the time I needed to deal with his effects. A decent man – but he didn't have to be. There were no meaningful protections in place for surviving same sex spouses.

The context in which we tried to get Ed care and services, and struggled to live a life with some dignity, made his suffering so much worse than it might have been. Those injustices, his unnecessary suffering, have not lost their sting for me three decades later.

Marriage equality profoundly changed such injustices. I met my late husband, Mike, in 1997 – he was a beautiful, bright, 31-year-old from Baltimore. It seemed miraculous to find love again and to have a chance for a second marriage. And marriage equality, real marriage, not a proxy civil or domestic partnership, became a reality in our state by a popular referendum on the ballot with Barack Obama's 2012 re-election. We had full rights as citizens, for the first time in our lives, when I was 53 and Mike was 46. Mike's fatal illness was brief and brutal. He was in his clinic seeing patients on a Thursday afternoon, and had to come home early, hit with a late season influenza. Admitted the next morning in respiratory distress, with a diagnosis of influenza A and lobar pneumonia, he progressed to ARDS, renal failure, and rhabdomyolysis despite being placed on extra-corporeal membrane oxygenation (ECMO) at the Shock Trauma Centre at the University of Maryland. He was gone by that Sunday night.

Yet what a difference legal and civil rights make in coping with great loss. As his husband, my status as next of kin was unquestioned. As Mike's clinical status so rapidly declined, I gave consent for intubation, for the transfer to the ECMO unit, for the change in his status to terminal, and then for the plans for his body, when that terrible moment came.

That next morning, awake before dawn, I knew our house was mine, automatically, with no tax or other burdens. No fear of the good or ill will of a landlord. His pension rolled over into mine. I would manage his estate. Settle on our graves.

All of our losses are deeply personal. Each of us carries with us our own lost loved ones. But what we must recognise, and what must remain a part of our shared humanity and our medical responsibility, is that for most LGBTQI people worldwide, legal marriage or other forms of legal recognition, such as civil partnerships, and the civil rights that come with legal recognition remain a distant dream.

Same sex couples have no legal standing across the whole of Africa, with the sole exception of South Africa.

In 2019, Taiwan became the first state in all of Asia to recognise our right to marry, a glowing exception to an otherwise unremitting lack of civil protections.

And in the Middle East, same sex couples are still being literally whipped and caned for who they love. Recent waves of anti-gay legislation have roiled Nigeria, Russia, and Uganda.

So many aspects of life without full citizenship rights are difficult. But dealing with serious health issues, with the loss of a beloved, is different. When it is your turn to hold your spouse as they pass from this life, whether you have rights and the status granted a husband or a wife or can be barred from the room by a “family member” or arrested in a clinic, as has happened in Uganda and Tanzania, makes an incalculable difference.

As health-care providers, this means we have a human responsibility to do what we can to reduce suffering. And that includes extending our full compassion and care to same sex couples as they face serious illness. For those providing such care where same sex couples do not have rights and protections, let me implore you to accept our lives and loves and losses. To extend to us the basic decencies that all human beings deserve.

This work was supported by the Desmond M Tutu Professorship at Johns Hopkins University.

[link url="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2820%2930297-X/fulltext"]The Lancet article (free registration)[/link]

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