Advertisement
The Body: The Complete HIV/AIDS Resource Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App 
Professionals >> Visit The Body PROThe Body en Espanol

Blog

Surviving Life Itself: Reflections of a Longtime Survivor

June 5, 2016

The young woman sitting across from me on the bus is in her mid-20s. She turns to her companion and her voice grows serious.

"I know someone who died," she says in the hushed tone reserved for tales of mortality. Her friend looks up from his phone. "He was a good friend of my brother," she goes on. "He was killed in a motorcycle accident a few months ago. It was just awful." As her friend offers words of comfort, my own thoughts produce a rueful smile and a nagging question.

Just one? You know just one person who died?

By the time I was her age, death in my social circle was so commonplace the body count approached the toll of a commercial airline tragedy.

I listen as the woman reverently shares the details of the accident, of the shock waves that surged through the family, of what the dead friend was like and who freaked out at his funeral. And then a bittersweet realization strikes me.

The friend she lost has a story of his very own. It is the chronicle of one tragic death, with all of its intimate details and reverberations. His story will be repeated by the young woman for years, and by her brother and by the remaining loved ones of the absent friend. And they will grieve and remember this individual death and grant it the weight of a rare tragedy.




I didn't get many chances to do that, living as a young gay man in Los Angeles in the 1980s. There were very few singular deaths. It seemed like everyone was doing it. And among them, a dozen friends close to me, struck down within months of one another, with whom I shared a history of youthful secrets, joys and indiscretions, never to be spoken between us again.

Advertisement

Already I have indulged in a regrettable pastime that aggravates me when others pander to it. I am counting my lost friends like selfishly guarded chips in a morbid poker game, claiming my grief as if the high tally amplifies the legitimacy of my loss. There is no hierarchy of misery. The death of one person close to you is quite enough.

And yet there are harrowing, undeniable moments from my past, drawn from 30 years living with HIV, that have shaped my attitudes and the senseless tragedies that befall us. I can conjure them but I must do it deliberately, for they are held captive in secluded corners of my mind and I release them with great caution. Perhaps now is the right time to unlock a few of those images.

The fluids in Lesley's dying body percolating like a coffee maker as we stood at his bedside awaiting his last breath. The anguished admission by my brother, Richard, that he helped his critically ill lover swallow a deadly, Seconal-laced cocktail in order for him to die on his own terms and avoid the final indignities of AIDS. My visit to Pablo in intensive care during his pitiful throes of dementia, nodding my head reassuringly as I tried to decipher his final, incoherent pleas.

They are a litany of despair, these heartrending tales, but I feel compelled to reveal them as part of another common exercise: to authenticate my history as a "long-term survivor." I have misgivings about that unsettling designation because it doesn't speak to my other, parallel life experiences and it suggests a dismissal of my relevance in the here and now.




In the decades since those sorrowful days, I have faced a host of perilous circumstances apart from AIDS, including a car crash, drug addiction, serious medical procedures and weapons pointed in my direction. Like everyone else, positive and negative alike, I am a survivor of life itself.

That life has included falling in love, changing careers, teasing my friends, watching my cats wrestle one another, and looking forward to whatever lies ahead with a deep sense of gratitude and joyful anticipation.

And it is this prism -- one that includes AIDS as only a segment of my life -- through which I view the world today. My status as a long-term HIV survivor does not make me a champion or a museum piece to be examined and admired. I am a man in the prime of his life. My age and maturity guide me, not the virus that has failed miserably to kill me.

The grief-stricken young man I once was held no clue about the mystifying speed with which time passes. The swift interval between the early days of AIDS and merciful treatment breakthroughs confounds me even now. Suddenly I blinked, and when I opened my eyes I was 40 years old and the world was a far different place.




Many of us remember that new world, when people with AIDS were saved by a miraculous "cocktail" of new medications. Living with HIV before the mid-1990s, when these medications were introduced, has become the popular line of demarcation for entry into the fellowship of long-term survivors.

My work in HIV advocacy continued during this time while others retreated to lives away from daily reminders of the epidemic. I did not fault them for that, in fact I envied them, but the army of our earliest activists, forged in the first years of the plague, had diminished.

By then, women and people of color had gained more traction and acknowledgment in the HIV arena, though without the national fervor or the generous support enjoyed by the original, largely gay agencies.

It was a time of such hope and encouraging progress, but if you scratched the surface of these victories you found they were dependent on privilege, money and access. Deaths continued unabated behind a dark curtain of racism and poverty.

The gay community began to avert its eyes from the continued infections of people unlike ourselves, and I joined many other exhausted activists who abandoned town hall forums devoted to HIV for the celebratory relief of the dance floor. Massive circuit party events became a vibrant diversion, summoning revelers by promoting their dubious contributions to AIDS service organizations. After a generation of relentless mortality I felt entitled to the party, to the steroids and the gym membership and the body-thumping beats of house music.

That is, until the festivities morphed into drug-fueled bacchanalias that required ambulances with the same regularity that had once been needed at AIDS hospices. I fell victim to their excesses, and my drug addiction and recovery process removed me from HIV advocacy for the next several years.




I blinked again and now find myself here, sitting in my home office as a man in his 50s. My workspace is populated with relics of the epidemic, the walls filled with posters from AIDS Walks and photos of protests and triumphant arrests. A vast collection of name badges from AIDS conferences are strung from a single hook in an enormous, colorful bouquet. And everywhere around me are reminders of the missing. Pictures of friends whose faces will not age. Borrowed sweaters in the closet that need never be returned.

They comfort me, these tangible reminders of strife, victory, love and loss. They help me embrace and appreciate my life history. Perhaps I don't find the title of "long-term survivor" so unsettling after all. There are worse things.

Most of all, the trauma that had once consumed me is now shrouded in the fog of a fading dream.

What remains are the wondrous developments of the present, like treatments that have also rendered people with HIV non-infectious and the amazing potential of pre-exposure prophylaxis (PrEP), a pill to prevent someone from contracting the virus. The advent of PrEP is the most significant prevention advancement in a generation. It is just the kind of miracle we once prayed for as we sat silently in pews at memorial services.

But astoundingly, these developments have been nearly as controversial as they have been celebrated.

There are thoughtful conversations about the cultural and medical effects of PrEP. What a shame they are being drowned out by clanging arguments about who is using condoms and who is not. The ludicrous chatter about who is a whore, a role model or a rebel foolishly reduces human sexual behavior to a problem that must be solved. Much of it seeks to impose sexual sterility in the way homophobic conservatives once denounced all gay bedroom antics, whether they were risky or not.

I remember what sex was like before gay men started using condoms. It was glorious. It still is. I always thought that finding our way back to enjoying sex without a barrier was kind of the point. Even the popular slang for sex without condoms, "barebacking," evokes some kind of deviant sexual pathology. The entire history of human sexuality would suggest otherwise.

I watch the absurd finger-pointing today, the naive segregation of positive and negative, the lack of empathy granted to human failings, the tendency of the newly infected to call the police before they call a doctor, the fracturing of the advocacy efforts built over decades, and I weep for the community we once were.




Our hand-wringing over how to engage young people bemuses me, particularly our morbid fascination with aggressively foisting upon them the horrors we once endured, as if clubbing them with fear will somehow make them rethink their youthful transgressions. Our heartbreaking past is important history that should be preserved. It is not a prevention strategy.

Trying to imprint our life lessons on the young is a fool's errand practiced without effect for millennia. I have never walked up to anyone who served in Vietnam and asked him to sit down and tell me all about it. I may respect the elderly soldiers in Veterans Day parades, but whatever post-traumatic disorders or multiple losses we may share fail to unite us. I watch them roll by in wheelchairs, festooned with medals and shriveled into nothingness, and then I have the audacity to wonder why younger gay men don't consider my life experiences relevant.

Our influence as long-term survivors may be limited, but we can find meaning and engagement as cultural elders and mentors. To whatever degree younger people are receptive, we have so much to offer about the nuances of treatment, the various side effects and the failings of the pharmaceutical complex that we have rallied against so effectively through the years.

Regardless, nothing should deter us from being of service to one another. We must support the emerging networks of other survivors and work to find solace in our shared history. We are a displaced segment of a community that once ministered to us. Our bond is vital to finding solutions to the issues we face as an aging population.

As wearying as our battles have been, as unwelcome as we may sometimes feel in the modern advocacy movement, we have plenty to contribute. We had better do it while we still can.

I am sensitive to the passage of time because I have seen lives with great promise left unfulfilled. I may no longer fear dying, but I am sorely afraid of not taking full advantage of these precious additional years that were once unimaginable. Regrets, the things unsaid and undone, are what frighten me and urge me onward.

The mysteries of life and time will be revealed in due course: to the woman on the bus grieving her singular loss, to those who would howl at the moon over behaviors they do not understand, to survivors grappling with the meaning of tragedy, to young people negotiating the sexual terrain, to you and to me and to all the rest.

Enlightenment awaits. All we have to do is blink.

Mark

(This essay appeared in the June, 2015 issue of POZ Magazine and is shared with their permission. Today is HIV Long-Term Survivor Awareness Day.)

Send Mark an email.

Get email notifications every time this blog is updated.


Related Stories

More Personal Accounts of Older People With HIV/AIDS


This article was provided by MyFabulousDisease.com. Visit Mark's live blog.
 

Reader Comments:

Comment by: JIMMY MACK (Southampton, NY) Tue., Jun. 21, 2016 at 11:05 pm UTC
Mark, I enjoyed this piece immensely, you are a truly gifted writer so please keep it up! I have stopped writing my blog on this sight because life is good and it hard going back to those dark days, but reading this reminds me of how important it is to keep all those wonderful people I lost alive through words, just as you continue to and to do so eloquently!
Reply to this comment


Comment by: Robert 57 (Springfield e) Fri., Jun. 17, 2016 at 12:23 am UTC
Mark,
I look forward to reading all of your articles. They are honest and realistic, sensitive and thoughtful. Your articles always make me feel connected and not so isolated about my own personal journey through the decades that I have been affected with so many things that people with HIV experience. You are a talented writer and an amazing person. Thank you for doing so much for all of us that cannot reach out as far as you are able to, through your writings.
You have helped more people than you can imagine, and I'm so proud of you.
Sincerely,
Robert
Reply to this comment


Comment by: lolo (south africa ) Wed., Jun. 15, 2016 at 4:15 pm UTC
Your story is,beauriful
Wish u the very best may god bless u
How do u keep fit and healthy
Reply to this comment


Comment by: Necica (Serbia) Wed., Jun. 15, 2016 at 3:58 am UTC
I live with HIV since 1985. I am working in NGO with people living with HIV. in particular I see my task in educating PLHIV people about ARV therapy and adherence. and what makes me happy is that all these negative experiences that have led me to this story are now a source of wisdom. I'm with my viruses (hepatitis C also ) live in peace and harmony. I do not touch them and they do not touch me. Every day is as gift, and I am living it completely.I have to mention that I have support from my family , big big big help. But also, after so many years living with HIV, I am also strong, very strong as a person, which I doubt I would have been if I had not got HIV. So that is it.Love from Serbia
Reply to this comment


Comment by: paulm63 (Tucson, Arizona) Sun., Jun. 12, 2016 at 12:27 pm UTC
Much in Common, Mark... I am a longterm survivor, infected in the Fall of 1987. I maintained a viral load of 1000, off medications, for decades. Recently, my doctor convinced me that, although HIV wasn't likely to catch me in this lifetime, the chronic infection/ inflammation was likely to age me prematurely. I have been on a successful medication regimen ever since.

I remember the early days of infection. No one is more cruel to gay men, than other gay men. I watched many, if not all, of our associates become infected, and not survive to combination antiviral therapy.

I worked for AIDS service organizations, watching the ever evolving blame game. Trying to convince people that they were responsible for their own behavior... that relying on the infected to protect the uninfected, or believing that only sleeping with the "clean" would protect one from infection, was an exhausting enterprise.

I did lots of volunteer work, including reaching out to young gays through the local gay community center... why I thought they would listed to an old fart in his 30s... I wouldn't have as a young teen/ adult with all the answers (and no experience).

After 20yrs of fighting horrid addictions... cocaine in the 80s, heroin in the 90s... I finally got it together. I realized I could risk the loss of Medicaid to return to work, got my RN, and launched the stalled career I once wanted in healthcare.

The last 12 years have been a blessing. I'm employed, have good credit, healthcare, am a homeowner, and even have money set aside for retirement (something i thought i would never need). I have had, since infection, three longterm relationships... all good men who managed to escape the virus that so defined my Life.

Good Luck to you, Mark... may you grow old, and live in peace, as is my wish for myself. - paul
Reply to this comment


Comment by: Geno Pensanti (Camas, WA) Fri., Jun. 10, 2016 at 5:49 pm UTC
It was 1980. A family I knew had just lost a young son to an unknown disease. It was soon to be called "GRIDS DISEASE'. Instead of flowers sent to the funeral, they asked for volunteers to show up to help with transporting young men to doctor appointments. It was on Cole Street in West Hollywood. I was the 11th volunteer. The virus was the HTLV3 virus (soon to be called the HIV virus) and we had no idea what this mysterious death was all about. In time, we formed "AIDS Project, Los Angeles - APLA). For years we struggled with death and dying. I stopped crying and grieving. I am one of the original survivors. I am still here. I am 81 years old. I hold a lot of history and hope that someone would like to hear about the fight in the trenches when death was a given.........MAYBE NOT.
Reply to this comment


Comment by: Ladybug (Washington DC ) Fri., Jun. 10, 2016 at 3:21 pm UTC
Mark you just brought me to tears, I myself being a,woman and am also considered a long-term survivor in its own respects. My own personal anniversary is,coming up next month in July 23 years living with the virus and I feel so,much like you. As I sit here and recall people who I cared about just succumb to this virus mainly because of being stigmatized as well as astrisized by the ones who where supposed to love and care about them the most. I was always very cautious about disclosure to my family and friends just because of the factor.How people just gave up the fight and just died, because they could not deal with the pain of being rejected. I truly believe that i am still here because i too still have something to offer. I will be 43 this year going to grad school this fall, I have a lovely 25 year old daughter whom Thouhgt i would not even leave to see her past elmentary school and on,top of that i have two beautiful grandchildren ,grandson now going to forth grade a true scholar, and my beautiful miracle baby who came into this world on weighing one pound and one once, my vannie she will be turning two years old on the 13 of this month. I am so grateful to God for everthing I now realize that I am supposed to still be here.And there is,so,much more I have to do. And I no longer ask myself that question why am I still here. Mark King your compassion for others is such a beautiful inspiration for me. When I met you in person your presence was so refreshing and so warm and you will always have a place in my heart forever, keep being your lovely self because you have earned your place in all of humanity.
Reply to this comment


Comment by: Anne (Louisiana) Tue., Jun. 7, 2016 at 11:57 am UTC
A thoughtful look back over years not to be forgotten, but remembered and useful when navigating today's world as a grateful long-term survivor. Thanks for your honesty and candor.
Reply to this comment


Add Your Comment:
(Please note: Your name and comment will be public, and may even show up in
Internet search results. Be careful when providing personal information! Before
adding your comment, please read TheBody.com's Comment Policy.)

Your Name:


Your Location:

(ex: San Francisco, CA)

Your Comment:

Characters remaining:

BLOG:
My Fabulous Disease


Mark S. King has been an active AIDS activist, writer and community organization leader since the early 1980s in Los Angeles. He has been an outspoken advocate for prevention education and for issues important to those living with HIV.

Diagnosed in 1985, Mark has held positions with the Los Angeles Shanti Foundation, AID Atlanta and AIDS Survival Project, and is an award-winning writer. He continues his volunteer work as an AIDS educator and speaker for conferences and events.

Speaking engagements: Mark King is available to speak to groups. Contact Mark about speaking at your organization or event!


More About Mark:
Profile


Subscribe to Mark's Blog:

Subscribe by RSSBy RSS ?

Subscribe by Email


Recent Posts:

View All Posts


A Place Like This by Mark King

View an excerpt of Mark's book

To read PDF, click here


Interviews With Mark:

Mark King Looks Back at the AIDS Epidemic's Darkest Hour in the U.S. (May 14, 2008)

This Month in HIV: Crystal Methamphetamine and HIV (August 2007)

For the rest of Mark's articles, click here.


A Brief Disclaimer:

The opinions expressed by TheBody.com's bloggers are entirely their own, and do not necessarily reflect the views of TheBody.com itself.

Advertisement

The content on this page is free of advertiser influence and was produced by our editorial team. See our advertising policy.