Dying is easy
It’s living that scares me to death
Fight for The Cure
Pray for a Cure
March for The Cure
For those of us living today who were around at the genesis of the HIV/AIDS epidemic all those many decades ago now these are familiar rallying cries; phrases used to mobilize people, awareness, politics, and money to fight against an almost unseen disease whose signs and symptoms were so humanly visible as to scar both the sufferer and the observer for life. The ugly scourge of Kaposi’s Sarcoma left the streets of many cities looking all too much like a scene from The Walking Dead….only those affected really were….dead men walking.
Luke Perry dies of a massive stroke at 52.
That alone makes anyone near the stage of mid-life that Perry was sit up and take notice. Yes, it’s a “Hollywood Death” so we look behind the headlines for a cause that might serve to exempt us from over-worry; drugs? suicide? prior bad acts? Finding none, we are left with the stark and unavoidable truth that people die, at all ages, in all manners, and leave us the living to sort out not only their remains and remainings, but to sift through our mental rolodex and find the proper card to file our thoughts on death and dying under, they might be needed….sooner than we had thought.
We who have survived with HIV from the beginning have a unique take on all of this; we have stared death in its gaping maw and spit in its face; over and over and over again. We had no choice. As the tsunami of HIV and then AIDS swept onshore the devastation was almost total. Wave after wave of humanity was washed away leaving the living clinging to the flotsam of their lives that had been left behind. We shook off the clinging stench of the first wave of death and slowly arose to try and live some more……just another month…..another year….until what? A “cure”? There was almost never even a shimmer of a bubble of an idea that there could be such a thing. Our government was stonewalling (amazing term considering the history of the Stonewall Inn), politics was poisonous, people were paranoid; of institutions, the medical community, and most of all of each other. Stigma and stigmata, the inseparable Siamese twins, ruled our world and ran our fear-filled lives.
With the coming of the 90’s and the first wave of actual treatments, those of us still getting up every day and slogging forward with life were given what we then assumed was a temporary stay of execution. Maybe these new drugs would stave off the viral effects for a time. And they did! They bought us more time….time to wait for the next hopeful batch of chemical wizardry that might lessen the side effects and pick up where the assumed failure of the first drugs was lying in wait. The single most notable beachhead of battle that these first drugs breached and conquered was the almost total eradication of Kaposi’s Sarcoma (KS). This, alone, removed the weight of the social branding that the manifestations of KS seared onto its victims and served to warn the rest of the world to “stay away”. Back then, touching, hugging, sharing a sip of a beer from the same glass; anything remotely human and humane was considered risky behavior by most of the world.
The effect of this removal of stigmata was transformative. People who lived in fear of unintentional disclosure, people who had hidden in their homes for months, people who only ventured out after dark clothed with scarves, hats, long sleeves in summer; people simply trying anything to hide their lesions from sight, these people soon found their lesions fading, gone! Others infected and living in fear of developing their own visibility began to take full breaths for the first time; maybe they would be spared at least that, maybe they would be allowed to progress to their deaths without that one, searingly, sightful blemish that no makeup would ever hide.
The rest of us got back to the business of actively dying; maybe now in a slightly less public manner.
Those of us who were “healthy” enough and still possessed of a certain community responsibility submitted our bodies and minds to “trials”; Guinea Pigs for the development of the next phase in AIDS drugs in the pipeline. Having seen that first devastation, we felt a calling to those still left and those who were rapidly coming in line behind us to continue to educate. If allowing experimentation on us would push the cause along, then we were duty-bound to push ahead. Maybe we would be the lucky ones, the next wave to survive another year.
Survive many of us did but not without suffering the horrific side-effects that were inflicted upon us by the scientists who were desperately trying to KILL the virus and not just control it. Mystery pills and potions, taken at exacting times of the day, recorded in logs dutifully turned in at our next appointments. Blood draws, lab results, endless institutionally green waiting rooms, but mostly side effects; one half hour after taking one drug I was on I would double over on the floor, writhing in pain, begging for…….relief? death? It would slowly pass, and I would have to crawl onto the bed and rest from the sheer physicality of the pain and then, an hour or more later, get up and go about my day until the next dose, 12 hours later. Rinse and repeat.
That lasted six weeks until I called it. It was a double-blind study, but we all knew I was getting the real thing. The trouble was it was going to kill me before they could get a result.
The drugs got better, I got better…and better. Along the way I found a husband, a life, and an appreciation for getting to live the things I had renounced as gone-to-me years before. Yet there are caveats to even this, the best of a Grimmsean storybook tale.
Upside: HIV/AIDS was classed a disability by the Feds.
Downside: Having a permanent disability is a pain in the ass.
You are automatically “retired” now, according to the government, so you start receiving Social Security Disability…in your forties! My health slowly deteriorated and my TCells hit that magic number where they were few enough to at least form small groups if not individual names and personalities. That triggered the retirement. That ended my life as a professional person…..forever. There began my life as what I call a Parallel Person; “living” alongside the living, faking a life that in many respects had to be hidden. As a disabled person I cannot, legally, make money without losing my access to the vital programs that help pay for the costs of the drugs that keep me alive.
One year of drugs runs about $100K.
I didn’t work long enough in my life to have that kind of benefits or savings. Over the years I have had my husband’s insurance and with the help of programs, been well cared for but still that feeling of non-contributory guilt is always there. I should be doing more, I could be doing more, but I can’t be doing more, legally. If I were to go off disability I would never get back on when I really needed it. All the doctors I have had over the years have insisted that I not relinquish this benefit. And so I live alongside the living.
I am sure that the government actuaries would love for me to disappear. I have lived so long and used so many benefits that I, alone, screw up their tables and formularies. And so, the survivor guilt compounds like the interest on the loan of my life.
Why me but thank god it is me. The mantra of my last 35 years. Half of my life…so far.
Our friend Angus died this week. We live in a retirement town; this is a part of life. He was 82yo and had a massive stroke. His husband is 60yo, vital, a yoga instructor, and life coach and very Buhdistically grounded. This is not an out-of-the-ordinary occurrence in lives everywhere. He will grieve the loss, adjust his habits and his thoughts and miss him every day. But he will also live on in what I am quite sure will be the best tribute to Angus that he can provide; a life thoroughly lived. A life full of old friends and new, experiences as yet undreamed of and the core of his being strengthened like tested steel by the trials, losses, and effort that simply living demands of us all.
I have had HIV for more than half of my (so far) long and legendary life. Suddenly, again, I see articles about people who have been “cured” but at what cost? Medically torturous and horrendously expensive procedures? Dubious results, at best? I think I’ll pass.
Not that I don’t continue to advocate for a cure, but that cure will be for generations yet to come. We, those of us who were there at the beginning and who still, today, persevere and survive, and thrive and continue….we will thank the gods for our lives, our loves, our time here on earth and the stunningly acute and focused image of life that HIV and the response of the world has gifted us with. I would not trade a moment. My time has come. It is now. I was granted this extraordinary moment in history to pay witness to the world as it morphed into a more perfect union…..and then was flung out of balance, again….and with luck and creative visualization I will live long enough to see it pause in peacefulness once more before I leave it to its own devices; to spin and whirl and gyrate into the future, hopefully with others who will not have to endure HIV, cancer…the list is long but the promise is eternal.
Luke Perry dies at 52.
Dying is easy, it’s the living that scares me to death.