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June 27th, 2010

An AIDS Golden Oldie, Spinning Again

We can turn it around in our minds, trying various reasons on for size, but nothing ever fits. In the end, it doesn’t matter how much he was adored by his friends or whether he ignored his better judgment or if he secretly hated himself. Steven is, simply and shockingly, dead.

It was one of those late nights a few weeks ago, when obscure videos posted on Facebook held more interest than getting to bed. Steven sent me a chat message. “How are you?” he began. “Guess where I am.”

I had no idea. “The hospital,” he said.

BINDER3“What the hell for?” I typed back. It must have been an accident or something. Steven was a young, healthy, enormously tall guy with an easy masculinity and a grin to match. The hospital was an unlikely locale. And to my knowledge he wasn’t even HIV positive.

“PCP pneumonia,” he responded. The words sat there on my computer, like relics from a lost vocabulary that had tumbled onto the screen. I stared at them and finally responded with the only thought in my head.

“Really? How 80’s of you.”

He appreciated the humor, thank God, and went on to sheepishly admit that he had not been “willing to face” his health. Meaning, this humble, informed, enlightened gay man who had successfully recovered from drug addiction and lived in gratitude for his life… had been too afraid to take an HIV test.

We turned to cheery small talk while I resisted the urge to somehow wring his neck through the computer. Steven wasn’t ignorant. He wasn’t irresponsible. He was just afraid. And the price for his fear was a struggle for each breath in a hospital room.

The next days played out like a childhood nightmare revisited. Close friends and family gathered to lend a hand and compare notes and freak out. Treatment progressed slowly and without much success.

Steven and I spoke again online, as his chances diminished and there was talk of moving him to another hospital closer to his family.

Binder5“I’m smack dab in the middle of a miracle,” he typed. “I might get transferred so I can get another doctor. I’m not ready to die. I have stuff to do.”

I knew there were no treatment options left, and that his immediate future was grim. But we had passed the point where you speak the truth to the dying.

“That’s great,” I responded. The deadly time warp he was living in was something I knew I would write about, and selfishly, I invited Steven to help me send a message to others about the importance of getting tested.

“As soon as I feel better, let’s do that,” he replied, as generous as ever. “I’d be happy to talk/help/minister to other people about this. It might be therapeutic.” I wished to God that Steven’s good intentions would be rewarded with mercy. “I love you, my friend,” he finished.

A few days later he was gone.

Fear is a bitter enemy. If you are so afraid of HIV test results that you avoid testing, fate may well teach you the meaning of irony. If you know you’re HIV positive and live in denial, I can assure you that intensive care and feeding tubes and weeping family members await you. And if you ignore the advances in HIV/AIDS treatment, you’re living in 1987. You may die like it, too.

Apparently, anger is the stage of grief I’m experiencing today, and that’s regrettable. Steven deserves more elegant emotions than this.

I will try to summon them. Today, I was given the honor of writing his obituary.

(Out of respect for his family and his privacy, I have changed my dear friend’s name to Steven. Artwork courtesy of Alexander Binder.)

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27 Responses to “An AIDS Golden Oldie, Spinning Again”

  1. The Subversive Librarian Says:

    June 27th, 2010 at 7:22 pm

    This is beautiful, Mark. It’s a wonderful tribute to a lovely man who will be very much missed. And all emotions, even anger, are elegant if fully felt. At least, that’s what my kid says, and she has a much older soul than I. Thank you for posting this.

  2. Leann rossi Says:

    June 27th, 2010 at 9:07 pm

    Thank you for the honesty.

  3. Nico Jacobs Says:

    June 28th, 2010 at 2:17 am

    An honest yet moving post. Thank you.

  4. Frank Says:

    June 28th, 2010 at 6:23 am

    Thank you Mark.

  5. Zachary Juno Says:

    June 28th, 2010 at 8:44 am

    Thank you for writing this Mark.

  6. richard kearns Says:

    June 28th, 2010 at 8:54 am

    mark—
    the elegance is in the writing. good work.
    —rk

  7. Bobby Says:

    June 28th, 2010 at 9:02 am

    Thanks, Mark. That helps a lot!

  8. Jackson Says:

    June 29th, 2010 at 7:39 am

    It is a sad and sobering reminder of how we are all connected by this disease, by our sexuality and our humanity. Steven sounds like a man whose life made a difference, hopefully his passing will teach us something as well.

  9. Jessica Mardis Says:

    June 29th, 2010 at 9:20 am

    Thank you for posting this Mark. I too know this struggle between anger and grief, although I still can’t tell you which wins. This brought back memories of losing my sons father in 2005 because he would not be tested. (He knew I was positive before we met). Thankfully the anger and grief got me off my butt and forced me to make a difference in this epidemic and not get wrapped up in what I have lost. I have gained knowledge, power, and strength. Knowledge to educate others, power to no longer be a victim and strength to no longer be ashamed. Thank you for reminding me today. So sorry for your loss. Everyone, PLEASE GET TESTED!

  10. Ed S. Says:

    June 29th, 2010 at 2:33 pm

    Knowledge isn’t just power. Knowledge is in fact life itself in some cases. The loss of a friend brings grief, anger, sadness and also gratitude, honor, and relief. I am glad to be here and have my friends (who have faced their fear of knowing) here to feel it all with me.

  11. Chandler Says:

    June 29th, 2010 at 2:47 pm

    Thanks Mark: This a beautiful reminder…. Loss is a terrible thing; but fear can be worse.

  12. Lain Benjamin Says:

    June 29th, 2010 at 3:49 pm

    Mark,
    Thank you for so elequently sharing your pain on these pages. For the past couple of days I have been complaining about everything… HIV, my gay life, wanting to find Love, casual sex. I have complained about trying to find a balance. Your words brought me to reality. I am so grateful to be alive and have these minor issues in my life. You are brilliant and fearless and I Love that you share that with your readers. My heart goes out to you during this raw time of grief.
    Lain

  13. Randy Says:

    June 29th, 2010 at 3:52 pm

    For days I have not known how to deal with the passing of our friend. After reading your blog, I find a piece of serenity that I did not know was there. Thank-You.

  14. Jonathan in SF Says:

    June 29th, 2010 at 4:02 pm

    Mark,

    The FEAR IS A BITTER ENEMY paragraph should be in BOLD. FEAR = false evidence appearing real; and those who need to read this message most are not, unfortunately, in your immediate reading audience. Perhaps friends can copy this column and send it out.

    I don’t know how sexually active your friend was until his health declined. But, as a community, we need to respect each other as well and practice very safe sex if one will not take an hiv test. One doesn’t ‘catch hiv’ – one can only let someone offer the exposure to the virus. And, if some folks out there can find the innate courage which we all, though often untested, to get tested and then make informed decisions than there might be less irony in the world.

    I am truly sorry for your loss. Love the person; hate the disease. Wishing you strength of spirit during this difficult time.

  15. Anthony Johnson Says:

    June 29th, 2010 at 4:31 pm

    It is hard to type this through my tears. I know the feeling of losing people because of this disease. I only pray that more people forgo their fears and get tested. I see so many that wait until it is too late to do anything about it. I beg that others read and understand your pain. This way they do not have to endure what “Steven” did.

  16. Robert Meek Says:

    June 29th, 2010 at 5:21 pm

    Rather than being verbose here, I posted my response in my blog, for brevity sake.

    http://rdmlorisgoretownhorrycoscusaearth.blogspot.com/2010/06/look-at-my-own-past.html#links

  17. John Says:

    June 29th, 2010 at 8:48 pm

    This is sad and it reminds me of my straight male and female friends who think that they do not have to have safe sex at all, that HIV will never happen to them, and they do not even have to get tested before not using condoms at all. 🙁

  18. James Says:

    June 29th, 2010 at 10:50 pm

    Mark, I have known Steven for 15 or 16 years and don’t have one memory of ever being angry at him, until now. This past month has baffled me. Steven was a very smart man and this did not have to happen. This past week I have felt guilt for feeling angry and back and forth. I have worked in an HIV medical practice and have seen this on numerous occasions and am not sure I will ever understand it. As a matter of fact, I was going to ask you to write something about why it happens, because I want to know, so maybe one day we can help someone overcome their fears. So, thank you for writing about it.
    Love to you, James

  19. Sue Says:

    June 30th, 2010 at 9:06 am

    How terribly sad.

  20. Danny Says:

    June 30th, 2010 at 10:45 am

    Thanks Mark for this post! You did an amazing job of putting my feelings into words. I will miss our dear friend and hope that someone… just someone… will be touched by his passing and go get tested and avoid this! Love and Hugs… Not drugs!

  21. StevenIga Says:

    June 30th, 2010 at 11:54 am

    As always, Mark, your writing is eloquent and touching. I am saddened that we still struggle with finding a way to convince people that this disease is their enemy. Denial serves no purpose, and HIV/AIDS will spare no person. I see men each day who are afraid to have these important conversations with themselves – much less with their partners, loved ones, friends and family.

    Until we can talk openly about the issues that threaten us all, we will continue to see people like Steven victimized by themselves and by others. We are silenced by our own fears, when we are the only ones who can truly give our plight a voice.

    So sad. Thank you for sharing.

  22. Mark S. King Says:

    June 30th, 2010 at 3:02 pm

    This was left by a reader on “Brody’s Notes and Scribbles” who was moved by this piece:

    Desmond Rutherford said…

    Steven’s story is beyond sad, it is of course tragic.
    With deepest respect I was moved by Mark S. King’s report to write a poem.

    An Ode to Steven.

    All death is a tragedy for the living,
    When a life has come and gone,
    When love seems lost and forlorn,
    All we might do with our lives, our loves,
    Are not just curtailed, or diminished,
    But ended, before their time; before our time,
    For there is never a time for death,
    When life is full of hope and love and zest.

    All life is about the living,
    This is how we share our love,
    Therefore, never deny life,
    Even in those moments of despair,
    Even at the moment of its end,
    Finding the goodness in being human,
    Is to not deny life with fear,
    But to honour it even at its passing,
    With love, laughter, and a tear.

    June 30, 2010 2:14 PM

  23. Terry Says:

    June 30th, 2010 at 8:43 pm

    Unfortunately, this “AIDS Golden Oldie” never really stopped “spinning.” Since beginning HIV case management in 1996 I’ve seen the number of gay men diagnosed with HIV and AIDS while hospitalized due to an AIDS-defining illness increase – and none of them were “ignorant” or “irresponsible,” either. They were human, like the many others who avoid the annual colonoscopy, mammogram or prostate exam when they have a family history of these cancers.

    I realize that the expression of anger regarding Steven’s death is a very normal part of the grieving process for those close to him, so I’m really speaking here to those who didn’t know him at all. I’d like to request that we not blame or victimize Steven for being human. Instead, why not honor Steven and all of the other men and women we’ve lost over the past 25+ years by making it a priority to tell one more HIV-positive person that they really SHOULD take responsibility for others by disclosing their HIV status – even when the other person doesn’t ask.

    People don’t ask because they’re fearful – and that’s human. Withholding information because someone was too fearful to ask – that’s criminal.

  24. Drew Says:

    July 2nd, 2010 at 8:38 am

    I know the fear of knowing. But, by the grace of God, I found out and today can move forward. Thanks for sharing his story

  25. annmarie Says:

    July 2nd, 2010 at 10:54 am

    lovely! Just sad that in 2010 we still have to change names to spare families – HIV is a virus, not a moral judgment!

    (I agree, AnnMarie. His family and friends were still reeling from the news, however, many of whom hadn’t yet heard the circumstances, so I believe it appropriate to allow them the chance to share the particulars, and I’ll use this as a “teaching moment” nonetheless. The lesson remains the same. Thanks. — Mark)

  26. Carole Ann Kaplan Says:

    July 9th, 2010 at 8:09 pm

    Of all your writings, this one feels the most real. Your grief is palpable. Your friends are fortunate to have you.

  27. Elizabeth Says:

    July 21st, 2010 at 3:24 pm

    I am so sorry to hear about the loss of your dear friend. This is just so sad and I feel awful for everyone who grieves his death.

    Thank you for posting this. I needed to read this; it helped me feel that I’m not all alone in what I have experienced in the past year – let me tell you why:

    I am a relatively new hospital chaplain and a clergy member of a liberal Christian denomination. One of the populations I have focused on in the past year has been people hospitalized with complications of HIV/AIDS. I love working with that population in particular; they have so many interesting and perceptive things to say about spirituality. Also, once they decide I’m not some crazy conservative who wants to convert or condemn them, we usually have great conversations about their experiences.

    As a new chaplain, I was unprepared for the number of people that are still dying of HIV/AIDS. I have a number of HIV+ friends, mostly gay men, some of whom have been infected for decades. and they are generally healthy and doing well on HAART. And yet, in the hospital, in the past year(!), I watched people die of AIDS a number of times – often young gay men, recently diagnosed. I remember one time when I got a call from a doctor asking me to come see a man who was “newly diagnosed with HIV.” When I got to his room, I discovered that he was actively dying – from PCP, lymphoma, etc. I had expected to have a long talk with someone about how they felt about their diagnosis, asking them open-ended questions to help them voice what they were feeling, etc. (that’s the majority of what chaplains do.) Instead, I was comforting grieving friends and holding a delirious, partially unconscious man’s hand who had sought medical help just 10 days earlier. That’s just one example. I have witnessed that situation more times than I’d like to recall, and it makes me so sad. I never imagined that in 2010 in a major US city I’d sit with young, gay, often black or Latino men as they died of AIDS.

    (Your eloquent comment broke my heart all over again. My only comfort has been to ask my negative friends, out loud, when they last were tested, and to encourage them to keep getting one. Thank you for writing. — Mark)

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