by Shaun Knittel -
SGN Associate Editor
'AIDS did not kill Spencer Cox in the first, bloodiest battles of the 1980s,' says Mark King, creator and award-winning writer of the HIV/AIDS blog My Fabulous Disease. 'It spared him that.'
Instead, King maintains, 'the reprieve allowed Spencer's brilliance as co-founder of the Treatment Action Group (TAG) to forge new FDA guidelines for drug approval and help make effective HIV medications a reality, saving an untold number of lives.'
Gay activists like Spencer were consumed by AIDS for so many gruesome years that many of them were shocked, once the war abated, to see how little around them had changed, claims King.
'Climbing from the trenches, they saw a Gay culture that must have seemed ludicrous, packed with the same drug addictions, sexual compulsions, and soulless shenanigans that AIDS, in its singular act of goodwill, had arrested for a decade or so,' said King, who was diagnosed with HIV/AIDS in the mid-'80s. 'They found themselves in a world in which no one wants to see battle scars, where intimacy is manufactured on keyboards and Web sites, where any sense of community had long since faded from the AIDS organizations and now only makes brief appearances in 12-step meetings [or] in the fraternity of active crystal meth addicts chasing deliverance in a dangerous shell game of bliss and desolation.'
King says the dark allure of meth, a drug that it is now a leading indicator of new HIV infections, enticed Cox at some point along the way.
The drug, says King, is 'known to whisper empty promises about limitless power and sexual escape, while calming the addict's ghosts and sorrows for miserably brief periods of time.'
AIDS - IT'S COMPLICATED
When Spencer Cox died on December 18, 2012, in New York City, the official cause of death was AIDS-related complications. He perished from pneumonia.
King says that, yes, Cox did die from AIDS-related complications, 'if post-traumatic stress, despair, and drug addiction are complications related to AIDS.'
In fact, Cox believed that this connection exists. His own writings for the Medius Institute for Gay Men's Health (an organization he co-founded after his work with TAG) focus on exactly the issues that were distressing him personally - most prominently, crystal meth abuse.
'In retrospect you can read his work and break the private code written between the lines,' said King. 'It spells out 'HELP ME.'
Cox's life indeed became difficult. The Medius Institute failed due to a lack of funding, defeating his effort to address mental health issues among Gay men. His drug addiction spiraled and receded and stormed again, until he withdrew to Georgia to live with family for a few years.
When Cox returned to New York City, many of his closest friends had lost track of him. There is uncertainty about his last months, and no evidence exists that his addiction was active, but what little medication compliance he managed had been abandoned completely, which set the stage for his final hospitalization.
HIS DEATH A FINAL IRONY
'In an ironic clinical time warp that transported him back to 1985,' says King, 'Spencer Cox died without the benefit of the very drugs he had helped make available to the world.'
It was as if, having survived the deadliest years of AIDS, having come so close to complete escape, Cox was snatched up by the Fates in a vengeful piece of unfinished business, King said.
'AIDS has always been creative in its cruelty,' he explained. 'And it has learned to reach through the decades with the second-hand tools of disillusionment and depression and heart-numbing traumas. Or, perhaps, by using the simple weapon of crystal meth, with all of its seductions and deceits.'
'Yes,' states King, 'there are many complications related to AIDS.'
THE CRYSTAL METH PLAGUE
Henry (Hank) Scott, publisher of WEHOville.com, was a longtime friend to Cox. He confirms the drug rumors that Cox was an addict. Like King, he believes that the mainstream's attempt at ignoring this aspect of Cox's life is a tragic mistake.
Scott says that Cox was 'wickedly smart and devilishly funny.' He had a passion for bulldogs, and when he threw himself into a cause like fighting HIV/AIDS or helping Gay men deal with depression, there was no stopping him.
He also says, 'Spencer Cox was a meth addict.'
'That's an aspect of his brilliant, inspiring and sometimes troubled life that hasn't emerged in the coverage I've read thus far,' said Scott. 'Those stories tell us only that a man infected with HIV around the time he graduated from college died an early death, seemingly belying the current thinking that HIV no longer is a fatal illness.'
Scott doesn't claim to have known Cox's T-cell count or viral load in recent years, but he says, 'I am aware that those people, like Spencer, who were infected before the advent of so-called triple drug therapy, are more likely to develop resistance to the drugs that keep HIV in check. I do know from research and the sad stories of too many friends that addiction to crystal meth greatly increases one's chance of becoming infected with HIV and of dying of AIDS.'
'METH = DEATH'
In a story he published on WEHOville.com, December 19, just 24 hours after Cox passed away, Scott said, 'I write about Spencer's meth addiction, which occurred late in his life, knowing that I will be castigated by those who believe publicity about it somehow diminishes his achievements. The Spencer I knew, who I believe was in successful recovery, wouldn't agree. The Spencer I knew, who boldly chanted 'Silence = Death' at ACT UP demonstrations, today would agree that that slogan would be more appropriate in a discussion of crystal meth.'
'Miracles are possible. Miracles happen,' Spencer says in a clip from How to Survive a Plague, David France's justly celebrated documentary about ACT UP and the early years of the epidemic.
'But miracles, like those that changed HIV infection from sure death to a chronic disease, don't happen without the hard work of people like Spencer Cox,' said Scott.
'But I'd like to see us, as a community, find a way to take the issue of crystal meth out of meeting rooms and into the physical streets, as Spencer and others did in the early years of ACT UP, and into the virtual world where most Gay men meet,' he continued. 'I'd like to see us demonstrate to their owners that allusions to drug use ('let's parTy,' 'chem friendly') on Scruff and Grindr and other Gay meet-up sites are as offensive as homophobic slurs would be in the Los Angeles Times. I'd love to see powerfully designed signs in the windows of WeHo shops that proclaim 'Meth = Death' the way ACT UP proclaimed that 'Silence = Death,' to spark a discussion about the impact of drug use on AIDS and HIV.'
Scott says it's all another reason to lament the untimely death of Spencer Cox. 'If he were here, he'd channel his smarts, his energy, and his passion into making it happen. We owe it to him, and to ourselves, to try it without him.'
To consider 'survivor's guilt' the culprit behind the death of Spencer Cox is a popular explanation but not necessarily an accurate one, said King.
'That condition suggests surviving when other, presumably worthier people, did not,' he states. 'Sometimes guilt has nothing to do with it. For many of our AIDS war veterans, the real challenge today is living with the horror of having survived at all.'
Living with that horror, loneliness, and feelings of confusion, after years of accomplishment and purpose, is what ostensibly drove Cox to use.
King says that many people will never know the horrors of the early days of the AIDS epidemic. In 2007, he wrote about those terrors in the award-winning piece 'Once, When We Were Heroes.' In it, King describes how seeing death around every corner and in every hospital room, and facing death in his own life, was something that became commonplace in the 1980s.
HEROES ARE AMONG US
'There were people who displayed remarkable courage then,' said King. 'People who lived and died by their promises and shared the intimacy of death, and then the world moved forward and grief subsided and lives moved on. But make no mistake, there are heroes among us right now.'
King tells the story of a shy, friendly man at his gym.
'There was a time when his sick roommate deliberately overdosed after his father told him that people with unspeakable diseases will suffer in Hell. My gym friend performed CPR for an hour before help arrived, but the body never heard a loving word again.'
'There is courage among us, astonishing courage, and we summoned it and survived,' King wrote. 'And then years passed. We got new jobs and changed gyms.'
'A DISTANT, DARK DREAM'
There was a time when old friends called to say goodbye, and by 'goodbye' they meant forever, he wrote, adding also, '& all of us had a file folder marked 'Memorial' that outlined how we wanted our service to be conducted.'
'People shot themselves and jumped off bridges after getting their test results,' recalls King. 'There is profound, shocking sadness here, right here among us, but years went by and medicine got better and we found other lives to lead. Our sadness is a distant, dark dream.'
King's best friend, Stephen, tested positive in the 1980s around the same time he did. There was a time when he knew all the intensive-care nurses by name. When a phone call late at night always meant someone had died. And just who, exactly, was anyone's guess.
RESILIENCE AMID TRAGEDY
When Stephen tested positive, much like Spencer Cox, a few months passed after the devastating news. Stephen then agreed to facilitate a support group with King. They regularly saw men join the group, get sick, and die - often within weeks.
'Watching them disintegrate felt like a preview of coming attractions,' remembers King. 'But Stephen was remarkable, a reassuring presence to everyone, and worked with the group for more than a year despite the emotional toll and the high body count.'
King says Stephen, like him, survived the so-called Gay plague. But the memories of the things they saw and the people that passed away will never leave them.
'There is bravery here, still, living all around us,' wrote King. 'But the bravest time was many years ago, and times change and the yard needs landscaping and there's a brunch tomorrow.'
Like Spencer Cox, King found his true self during the onslaught of the epidemic.
'The truth is simply this, and no one will convince me otherwise: My most courageous self, the best man that I'll ever be, lived more than two decades ago during the first years of a horrific plague,' said King.
He worked relentlessly alongside a million others who had no choice but to act, as did Spencer Cox. They are heroes. Today, the lives of those who witnessed the horror have become relatively normal again, perhaps mundane.
'We prefer it,' wrote King. 'We have new lives in a world that isn't choking on disease.'
EXPANDING THE FIGHT
In his piece about the late Spencer Cox, King is neither accusatory nor sorry for his sentiments that complications from HIV/AIDS should not be limited to just pneumonia and other easy-to-diagnose symptoms. Instead, he presents a pretty convincing case that PTSD and drug use (when the addiction is developed because its victim wants to forget the horrors and letdown of AIDS activism) are also complications related to AIDS.
The life and times of Spencer Cox were compelling, marred in tragedy and triumph. In the end, it would seem, that the allure of crystal meth, with its ability to quiet the voices of critics and the dead, proved stronger than the memory of a lifetime of achievement for this young man who is credited with helping to save the lives of millions. Spencer Cox's death is a striking reminder that the answers to ridding the world of HIV/AIDS are not found in the medicine cabinet alone. Mental health remains part of human health.
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