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Ash Kotak writes from New York as he struggles to breathe as the city is swathed in smoke from wildfires in CanadaAsh Kotak leads #AIDSMemoryUK - the campaign to establish a national tribute to memories of HIV and AIDS in Britain.
It is Pride Month in New York, and I am back in the city I escaped to when I was just 18.
Then, the city was a rare place of gay freedom and refuge; a place where I could fully celebrate my emerging self.
But it was also a time of death and dying. AIDS killed 100,000 people in New York alone, almost an entire generation of gay men. Who can ever forget the faces of those we loved, bodies ravaged by AIDS, struggling to breathe?
I was one of them – but in London, gasping my way though pneumonia and then tuberculosis and much else. But, thanks to the anti-retroviral (ARV) medication introduced in the mid-90s, I survived. But only just – and not with a clean bill of health.
Lung diseases were and remain a significant cause of death in HIV-infected people, with many associated complications, according to the US National Institute of Health.
Our health, as HIV+ people, is ineluctably connected with our ability to breathe clean air.
I am now staying in SoHo with friends who inherited me after my then boyfriend, Nigel Finch, a well-known British filmmaker, died of an AIDS-related illness in 1995.
Their brownstone is a brief walk away from the Stonewall Inn, the so-called birthplace of the modern LGBTQ+ rights movement back in 1969.
Yippee. Let's celebrate.
But as I age I feel less inclined to. Middle age, long-term illness and the LGBTQ+ experience are rarely discussed together.
We, who survived the plague and are frequently told by younger generations to shut up about it, are again the visible invisibles. We are no longer the youthful eye candy that attracts advertisers. Some of us are living the new unspoken reality of ageing, even though it is not fashionable to admit it.
Our bodies are not as vibrant as they once were; our needs – now mainly medical – have changed even though our desires remain the same.
Breathing has become freedom. My lungs have been weakened by HIV-related illnesses such as pneumonia and tuberculosis; my asthma further complicates two inherited and progressive heart conditions.
An implanted cardioverter defibrillator keeps me safe by monitoring my heart rhythm and providing a small – it’s not, as it throws me across the room - electric burst to reset my heart's electrical system when it suddenly becomes dangerously fast and could potentially lead to a cardiac arrest.
Mental health challenges due to PSTD from the trauma of loss and the trauma of living add to the mix.
Today – as I write this – New York has become an allegory. What was previously heaven has become hell. The wildfires in Canada have reduced the air in the city to sandpaper. I feel those fires in my throat, my eyes, in my skin, my hair and deep in my lungs.
All of me feels slower.
Writing this piece, I keep nodding off. I fear to take a breath. I have an urge to go outside but common sense prevails, even with a N95 mask.
There are 437 Canadian wildfires; 248 are out of control. At least 100 million Americans have been affected – and at least one British person. The fires have scorched 9.4 million acres of forest so far and already forced 120,000 people from their homes in Canada. The fire season is early and more intense than usual. This is an effect of the climate emergency. Too many will deny it of course.
But this does not help me breathe.
More than 119 million residents – one in three Americans – already live with air pollution that will shorten their lives, according to a new report from the American Lung Association. Data from the World Health Organization (WHO) shows that 99% of the global population sometimes breathe air that exceeds their limits. Poorer nations are usually the worst affected.
New York is experiencing today what many nations go through every day.
I have additional reason to worry.
The risk for both chronic obstructive pulmonary disease and lung cancer is significantly higher in people living with HIV, according to a recent study by the Centre of Heart Lung Innovation at the University of British Columbia, Canada.
The air outside, the air inside, could kill me.
But, as I write this, my mask close to my face as I stare out at a sky yellowed by fires hundreds of miles away, I look back on surviving. I look back on having lived through the AIDS pandemic.
But now I’m left wondering: as the climate emergency worsens, will my lungs fail first?
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