My brother Richard smiles a lot. He has an easy laugh. But there was a time, years ago, when he held a poisonous drink in his hands and begged his dying lover not to swallow it. A time when Richard held the concoction they had prepared together and wept.
Emil couldn’t wait. He took the drink from Richard quickly, because the release it offered was something more rapturous than the appeals of his lover of thirteen years.
It was Emil’s wish to die on his own terms if living became unbearable, a promise made one to the other. When that time arrived, however, Richard wanted another moment, just a little more time to say, “I love you, Emil,” over and over again, before the drink would close Emil’s eyes and quietly kill him.
Richard has a charming store in my hometown today, where he sells collectibles and does theater in his free time. The drink was consumed over twenty years ago.
There were people who displayed remarkable courage then. 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.
There is a shy, friendly man at my 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. And then years passed. We got new jobs and changed gyms.
There was a time when old friends called to say goodbye, and by “goodbye” they meant forever. When all of us had a file folder marked “Memorial” that outlined how we wanted our service to be conducted. When people shot themselves and jumped off bridges after getting their test results.
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.
My best friend Stephen just bought a new condo. He’s having a ball picking out furniture. But 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.
Stephen tested positive in the 1980s, shortly after I did. A few months after the devastating news, he agreed to facilitate a support group with me. We regularly saw men join the group, get sick and die, often within weeks.
Watching them disintegrate felt like a preview of coming attractions. 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.
There is bravery here, still, living all around us. But the bravest time was many years ago, and times change and the yard needs landscaping and there’s a brunch tomorrow.
There was a time when I sat beside friends in their very last minutes of life, and I helped them relax, perhaps surrender, and told them comforting stories. And lied to them.
Jeremy lost his mind weeks before he died. Sometimes he had moments of sanity, when we could have a coherent conversation before his dementia engulfed him again. It was a time when you were given masks and gloves to visit friends in the hospital.
He was agitated with the business of dying, and told me he couldn’t bear to miss what might happen after he’d gone. I had an idea.
“I tell you what,” I offered, “I’m from the future, and I can tell you anything you would like to know.”
“OK then, what happens to my parents?” he asked. I thought it might be a distracting game, but Jeremy’s confused mind took it very seriously.
“They went to Hollywood and won big on a game show, so they never did need your support in their old age,” I answered. He barely took the time to enjoy this thought before his hand grabbed my wrist, tightly, almost frantically. He pulled me closer.
“When…” he began, and a mournful sob swelled inside him in an instant, his eyes begging for relief. “When does this end?” There was an awful, helpless silence. His eyes beckoned for a truth he could die believing.
“It does end,” I finally managed, although nothing suggested it would. “It ends, Jeremy, but not for a really long time.” He digested each word like a revelation, and slowly relaxed into sleep.
There is compassion here, enough for all the world’s deities and saints acting in concert. Infinite compassion for men who lived in fear and checked every spot when they showered for Kaposi sarcoma, and for disowned sons wasting away in the guest room of whoever had the space. But we get older, and friends don’t ask us to hold their hand when they stop breathing, and the fear fades and I bought new leather loafers and the White Party is coming.
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.
He worked relentlessly alongside a million others who had no choice but to act. He secretly prayed to survive, even above the lives of others, and his horrible prayer was answered with the death of nearly everyone close to him.
To say I miss that brutal decade would only be partially true. I miss the man I was forced to become, when an entire community abandoned tea dances for town hall meetings, when I learned to offer help to those facing what terrified me most.
Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps mundane. We prefer it. We have new lives in a world that isn’t choking on disease.
But once, there was a time when we were heroes.
(I was honored to receive an award from the National Gay and Lesbian Journalists Association for this piece in 2007, which has been revised to commemorate World AIDS Day. I produced the accompanying video a few days ago — think of it as a “DVD Extra.” Feel free to share this with friends (I’m trying to introduce my blog to new people, if you can help with that). Here’s to a joyous and healthy holiday season for us all. — Mark)
Outstanding, Mark. No surprise this was an award-winner. We HAVE evolved (or “devolved”) from Shanti and ActUp to bourgeois black-tie galas and White Parties. A White Party where likely many men will contract HIV under the guise of fundraising for HIV. I don’t want to re-live those years but I also don’t want to forget them. It was a sacred decade. Again, great essay.
Thank you, Mark, once again, for the reminder that we CAN step up to the plate when necessary. You’re right: This is probably your best work ever.
Mark, this blog moved me to tears and brought back so many memories from the 80s and 90s when there was so little hope for so many loved ones, my god-daughter, my two partners who are no longer with us. I hope by reading this blog those who are still negative or who have become infected since 1996 will learn the lesson from our past. When World AIDS Day happens again in a few days, they take a few extra minutes to remember those who fought for Ryan White funding, built the first AIDS Service Organizations and support groups but are no longer with us.
Thanks for sharing our history. Until we meet again; here’s wishing you health, hope, happiness and just enough.
big bear hug,
Thank you Mark. I lost my beautiful only brother in 1989; he’d been diagnosed in ’87 although I sensed… knew, somehow that he’d been hiding a secret for a long time. Your description of what it was like in the 80’s took me right back to having had to deal with doctors who did not know what they were doing (one actually asked me what ‘gay’ meant); having been told not to walk into my brother’s room nor lay on his bed without wearing gloves, a gown and a mask; finding flies and his food tray shoved under his bed; my mom getting up every 4 hours around the clock to give him his poison… AZT.
My life direction changed after his death… worked for the NYC department of health in prevention ed. and am one of the founders of a NYC syringe exchange program where I am currently the exec director… but sometimes we get caught up in our day to day trying to stay afloat and meeting those ‘deliverable’ and somehow forget why we got into this work to begin with… thanks for the reminder.
Thank you Mark! Heroes are among us! Wishing you much happiness this holiday season!
I want my friends back,
Mark, I believe you still are a Hero…. God Bless & Keep Always.
Newport Beach, CA
Mark ya big lug; stop making me tear up on a Sunday! As usual youâ€™ve produced a poignant, intelligent and beautiful work (all attributes that describe you was well).
Thanks for making us remember and look forward at the same time. Just wanted to make sure you knew that the time you take to produce your blog is so very much appreciated by those of us that tune in to see whatâ€™s up on a weekly basis and look so forward to it. I want Logo to give you a show, who do I write? Youâ€™d be a natural. Big cyber hug sending lots of love!
Richard in Boston
Mark, I am a new member of your website. I’m getting ready to perform some gay parodies that I wrote on Christmas songs at a coffeehouse at the church where I am now music director. I have been doubting my ability to deliver these songs in the face of an indifferent or slightly uncomfortable crowd. When I read your piece about heroes, weeping, and realize that I am not one, I know that I have an obligation to those who went before, and who WERE and ARE heroes – like you. In my small way, this is all I can do to fight back – but it’s MINE to do, and so I will do it with courage and dignity and humor. Thank you for inspiring me, for inspiring us, for all that you do and are – you are a true hero, and your living is a gift to us all.
Mark, I loved this piece when I first read it, and I love it even more now. I’m with Richard. You need a show.
That said, heroism doesn’t become any less heroic when it’s less crisis-driven. Your activism now may be of a different form –staying clean, being a good partner, working with other people in recovery — but it is all the more heroic for being the stuff of daily life. Just as before, the heroism is most apparent in your strength, tenacity, and integrity even when — especially when — nobody is looking. Your public work – blogging, entertainment, and advocacy — is just the icing on the cake. Kudos, my dear friend.
Mark – I wish I didn’t intimately know the experiences you describe. I do however. I also saw so many people who lived and died with such courage and dignity. It changes you. I will never be the same. It seems a shame that given what we know about HIV that anybody still becomes positive. I wish it were not true. Thank you – chad
Thank you for giving voice to our generation, Mark. You’ve said, so eloquently, the thoughts of so many of us who made it and survived those very dark days.
Beautiful, Mark. Eloquent, moving and true. Like you. Thank you.
Thanks for sharing your moving story. I’ve been fortunate enough to be a part of the lives of a few heroes who are now gone. They continue to inspire me…and the thought of them often brings me to tears… or to laughter.
My friend I could not have spoken or written it better! The best is you sharing this has given me the sense that still “I Am NOT ALONE” as are “YOU not alone”. I sit here and weep at what you wrote because of our commonness the events so similar as in who I watched die in my support group in 1988. I use to sing the ten little Indian song every time one of them passed away! My humor, albeit black or sick humor in and of itself it helped me cope! It took the edge off the horrific seriousness of what was occurring! I had the phone calls that were the last goodbye as well- the one that still irkes me is when Tom called me and he had just come out of surgery (encephalitis, a brain infection) and wanted to know when I was coming to visit him before he died? Logically I said to myself, if he was going to die and was that sick how would he be able to call me? I had every intention on visiting him but I was restrained due to my college classes and Friday was the best I could do. He called Wednesday and passed Thursday! There was dead silence when I walked into my Mom’s house and my best friend Bernadette sat with her drinking Tea. I felt something was terribly wrong but nobody said anything except there’s pizza in the over heat some up for yourself! I did that but they were just acting weird. I finally said HE DIED? Their heads nodded. They feared telling me. MY best friend MIKE passed away! Needless to say I did not eat the pizza! The sight of that AIDS QUILT on the ground in Washington DC caused me to collapse after 1/2 of 1 row was completed I simply turned full circle and landed on the floor! I did not want to become a QUILTED piece of material! My cousin walked with me holding my hand to Lincoln Memorial and the candlelight vigil. What beauty and what a horrific nightmare!!! Being a person they claim is one who has had the Lazarus effect, I still live daily with many aches, pains and woes- I am not insane though or over reacting they just released notification that all my complaints are validated finally after all these years! You know what? I know a miracle will occur soon! I know someone will step up and assist me! Gods never let me down! I am a good person and I help anyone and everyone I can because I want too! I know I am loved! I love…… That’s all I have ever wanted! We are Eternal beings on this floating blue ball called earth! There is a God, call God whatever you want the sun moon Jesus Muhammed love light goodness but GOD EXISTS! There is Love, and for that I embrace all that is good! Thank you for sharing yourself with me and allowing me space to share myself with you! Namaste Dante
Loved this, Mark. Loved this, and I love you, friend who I have yet to meet in person.
It amazes me that even though I am in Canada and million miles away how similar events happened here as well. That geography was not a barrier in our shared history. As I prepare for our Vigil in Halifax and the words I have written and will be speaking in reflection of the history of the last couple of decades I find so many parallels to what you have so eloquently said. Dante James responded with “I am not alone” and thankfully in sharing your experiences Mark we all find a kindred soul in your writing and those who respond to it. Thank you.
Mark, You have such a powerful and poignant voice — one that continues to illuminate.
Perhaps my biggest eye-opener came in early 1992 when my ex (my one big love) was hospitalized for the last time: the RNs were afraid to remove his contacts. I did it. My Gawd! I thought…. and then I realized how personally terrified everyone, medical pros even, is of AIDS. I was stunned how long the ignorance lingered. I don’t miss it. I don’t miss the horrible fatalism — Frank wanted to pass so badly. He was 39.
Thank you so much for such a sweeping piece.
thank you….you ARE a hero for telling this story, with simple honesty and caring.
Thank you MARK… It has always seemed “ironic” that I tested HIV+ in 1988; the same year we had our FIRST World AIDS Day. I remember the past as if it was yesterday. I remember my MD’s telling me “I’d never see 30.” I remember “playing guinea pig” for the drug companies in the 90’s. I remember going to see THE QUILT in DC layed out in it’s entirety (at that time) and recognizing the panels of friends that had gone before me.
I want to thank you for this, to thank Frank for saying it best:
“We HAVE evolved (or â€œdevolvedâ€) from Shanti and ActUp to bourgeois black-tie galas and White Parties. A White Party where likely many men will contract HIV under the guise of fundraising for HIV. ”
I hope this period of apathy will return to concern before history repeats itself again!
Best Wishes~ “clarkie”
Great to read this again, and be reminded. Excellent! The video is moving and I hope gets lots of hits.
Mark, many above have written. thanking you. in a way so much better, what I would want to say to you., You have put words to the feelings that I’ve carried with me for all of my adult life having been diagnosed in ’86 at 21 years old. My story is the same, the location is just different, here being London, England. However my life now is not mundane. I wake every morning and try and make every moment count, I am healthy and fit and I try and live some of wonderful experiences that all of those wonderful people who are not here now, would have. I smile a lot. But: If they were here I would also laugh a lot.
Mark, I too was moved to tears â€“ memories flooding back of “that time” which changed us forever – those days when a great strength grew in our community and heroes lead the way with love and compassion, shining a light on the dark face of fear and intolerance.
I am grateful for the opportunity to bear witness to those who, still in their youth, don’t understand the great pride we hold for our brothers and sisters who went unquietly before us, and for those who continue to shine the light of love and compassion.
I am a proud HIV+ man who is stronger and better than I could have ever imagined, much of it due to those “heroes”, like yourself, who have been by my side the entire way. That being said, it’s easy to understand why I consider it a privilege to do the same for someone else.
This is wonderful. Thank you for remembering, and as another World AIDS Day approaches, thank you for helping me and whoever sees this remember.
Mark, Thank you! For the last week I have cried and laughed over remembering all my friends I LOVED and LOST. Some of them were lovers and most were best friends. There have been moments why I cried because I couldn’t remember my friend last names, these guys I lost in the mid to late 80’s, I had a picture of them in my mind. I am living now with AIDS since before 1993, I AM A SURVIVOR. Yet memories still haunt me at times.
Thank you, Mark. I’m 57 years old, and lost countless friends to HIV over the years. Some of my younger friends look at me blankly when I try to explain what it was like back then. To them, HIV is something you take a pill for and get on to the next brunch. I’m sharing this video so they will know what it was like. We can’t forget.
I have my own horror stories of life in the 90’s in Ft. Lauderdale. It was the best of times, it was the worst of times. Having been diagnosed in 1994 it was the tail end of the times.
All of my friends are dead, and I survived. I am not still sure why God chose me to live and others to die such horrible deaths. I had my final exit plan and my DNR and all that stuff we did to guarantee our own end times on our own terms.
But we lived. We must be grateful for small mercies. I never thought I’d get this far still alive. Someone up there likes me.
You never cease to amaze and inspire me. Having been involved for 23 years, your comments brought back so many memories and so much of our history. I hope you will submit an abstract to to participate in our 14th Annual Positive Livng Conference March 11-13, 2011 in Ft. Walton Beach, Florida. The 400 plus attendees need to hear your message.
Thank you so much for this beautifully written and emotionally true essay. I feel such disorientation and uncertainty when December 1 now rolls around. The certain and desperate purpose of our lives during that horrible time made everyday matter, made every action and every word meaningful. We lived completely in the moment because it was, simply, a matter of life and death.
The loss of my own best friend, Keith Thomas, changed both my life and my career. Leaving behind the safe and detached world of the academy, I discovered a community of brilliant artist-activists like Michael Kearns and Tim Miller and with them gave birth to Sharing the Delirium: Second Generation AIDS Plays and Performances. From then and until now, I spend my time bringing the arts and humanities into medical education so that our future physicians will have some slight knowledge, some flicker of curiosity, and some emotional awakening about the crucial importance of all imaginative representations of human suffering and human value whether it be Anton Chekhov or Paul Monette.
And now when I teach humanities electives for medical students and public health graduate students about HIV and AIDS, I teach them as history. And I stand amazed but not at all surprised that nearly all of them simply have no idea of that “brutal decade.” And I am both happy that they can be so clueless and sad that they have not somehow and somewhere absorbed a sense of the immense loss, the heroic struggles, and the passionate activism that we shared. But by the time they leave the course, I know that they will also be both burdened and blessed with never forgetting because of the poetry, the films, the plays, the photographs, the Names Quilt, the memoirs, the novels, and the paintings that they are about to encounter. Therese Jones, Denver CO
Thank you for the reminder that there’s still a struggle and nasty little disease to overcome and abolish. And thank you for the reminder of all those who came before us that saved our lives. That’s what some intended. But I don’t think it was in the plans of those who left this world, but that’s sometimes how I feel, if it weren’t for those who came before me and paved the way to survival, I would not have this life I’m fortunate enough to live.
Thanks for your work and all you do, Mark.
No wander why you’ve got an award . just believe in yourself that you can carry it. I agree that you are not alone, there are so many people in front and behind you. Just don’t lose hope and accept that as a challenge in your life. In this world everything that exists has a purpose. Just enjoy life because it is too short to be lonely. Thanks for this post, nice article.
Thanks for making me see i am exactly where i want to be.
Thanks so much for this thought and memory-provoking piece. I tested positive in 1989, and was still in the closet at the time. I was somewhat insulated from the tragedy of losing a lot of friends. I did not have a lot of gay friends.
When I met my current lover and we first became friends back in 1997, I was curious as to why all of his other friends were lesbians. “Micheal,” he told me, “All of my male friends are dead.” it was a sobering insight.
I have heard of so many people diagnosed shortly before me or even after me who have succumbed to the disease, that I honestly wonder sometimes how I have survived with the virus for 22 years (and counting). I suspect that it has something to do with early detection and ongoing monitoring and treatment. For lack of a better way of expressing it, my timing was good.
Had I not been trying to play it “straight” for so many years, I would probably been out there ahead of the treatments that have saves my life. I am grateful for the way things worked out for me.
At the same time, I am very sad for those who had the courage or simply considered it the only way to be, to live their truth, and who died as a result of simply being who they were. The delays of the Reagan administration in responding to the crisis were tragic. Today’s budgetary threats to AIDS drug programs are equally tragic. There are still those who would like to sweep this disease and its victims under the rug.
Let’s not forget- the fight goes on.
I’m sitting here at 4am, in the South African Bush, sobbing my eyes out…. Mark, your piece brought back a flood of memories of a time so long ago that I am sad to say, I have forgotten and or suppressed. We all lost so many people along the way and if I have to be honest, with the exception of a handful vivid memories, most names and faces have faded, not because I don’t care; it was just the sheer volume of deaths in the early years that I don’t think many of us, who were hands deep in it, took time to deal with our multiple losses…and our survivor guilt.
And to quote you as you summed it up so eloquently “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.”…. I couldn’t agree with you more.
David R Patient
PWLHA 29+ Years
I just don’t know what to say.
Thank you for youre words.
Alex (the Netherlands)
Thank you Mark for making your story available for me to read today,i am 24 years old and positive;I’ve been so for four years now,i can only imagine how difficult it must have been leaving with the virus in the 80’s and the 90’s;I had no idea what world AIDS day represents for you and the other “originals”.For me it’s the day the whole world celebrate my stupidity and reminds me what i lost 4 years ago…Today i read your article and the few testimonies that followed and what you wrote,David R Patient and the others like you make me believe there’s maybe a chance for me…I admire your strengths and the way you all are dealing with it,i just wish i’ll get there one day.
Thank you all for the fights/demonstrations and everything else you did for the “acceptance” we have today.
It was fabulous to cross paths in DC last week. You are always a joy. This piece really touches me in a special place as I too had to keep a promise to help a friend transition. I don’t share about it often. It is so great to connect with others who have had to know this act of love.
How could I get the video?
(The video shown above, as with all my videos, are available via YouTube. My YouTube channel is MyFabulousDisease. — Mark)