Mark S. King

Everything Old is Dead Again

Filed By Mark S. King | June 28, 2010 7:00 PM | comments

Filed in: Living, Living
Tags: dying family member, dying of AIDS, HIV testing, HIV/AIDS, importance of being tested, needless death

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.

BINDER3.jpgIt 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.

"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.

"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."

Binder5.jpgI 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 regarded with mercy. "I love you, my friend," he finished.

A few days later he was gone.

Fear is a bitter enemy. It isn't merciful. 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. If you ignore the advances in HIV/AIDS treatment, you're living in 1987. And you'll 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, I have changed my dear friend's name to Steven. Artwork courtesy of Alexander Binder.)


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I'm so sorry, Mark. Your anger is understandable in your deep grief for Steven. Please accept my condolences.

I'm sorry your friend has passed...and the story is bringing some tears to my eyes as well...I waited for several years between tests, hoping to 'hold onto' the good news of my last negative result from 5 years past...I felt my safe sex history was pretty good, though not 100%, and didn't want to face any "bad" consequences.

Well, fast forward to swollen glands and some wierd night sweating that finally got me to the doctor's office. Yes, I found out I had seroconverted sometime over those last 5 years, was now HIV+, and my CD4's were less than 200 with a fairly high viral load.

I was VERY fortunate...I had found a good doctor, and was able to get on medication...with some short-term therapy and the meds, things got better after a few rough months. 4 years later, my health is very good, my CD4's are around 600+ and I'm doing well...had I stayed in denial, my outcome could have been much the same as your friend, it that really scares me.

Please, please people, get tested regularly...if you have any idea or fear that you may be positive, THERE ARE EFECTIVE TREATMENTS AVAILABLE which can SAVE YOUR LIFE with minimal or few, if any, side effects. There IS life, and it can be a good or even a great life, after an HIV+ diagnosis.

Again, I'm sorry your friend passed, please continue to tell his story, so that other lives may be saved!

Hauntingly beautiful, and it struck a cord with me. When I was 19 I had sex without a condom and refused to go get tested for two years after that. First, it was "I have to wait until six months passes anyway" then it was "Well, next week." "Next month, I'm too stressed out to deal with that."

It took a condom breaking for me to finally snap out of it and realize my own fear, face it and move on.

Luckily, I'm clean but I remember so often that I didn't know and didn't want to know my status for so long. Even for the younger generations (Im 23) HIV still carries the stigma of a death sentence even with all the breakthroughs in general health and anti-retroviral medication.

Thank you for writing this post, it's something we all need to read, re-read and share.

Nik,
Glad you got good news and hope you remain negative...just have to comment though that for some HIV+ people, myself included, "luckily, I'm clean" comes off as offensive, regardless of the intent...which I am sure was good.

Neither I, nor other HIV+ people are 'dirty'...the clean/dirty wordplay is best left to the underground (and f*cked up, sorry) 'bug chasing' scene and is not a respectful way to refer to your status...you are HIV negative (thankfully), not 'cleaner' than someone else.

Nik Maciejewski | June 30, 2010 9:50 AM

Dennis,

Thank you, it's amazing how we use words and don't always stop and think about what those words mean individually in comparison with what we are trying to communicate.

I'll be altering my language use and I appreciate your comment a lot :)

Anna Rose | June 29, 2010 9:16 AM

This is a truly sad turn of events, with a young life ending far too soon, bringing sadness to many. Please accept my sincere condolences.

I do, however, have to mention one thing. At the end of your eloquent piece, you note, "Out of respect for his family, I have changed my dear friend's name to Steven."

I'm curious why changing your friend's name was "respectful." I'm sure many readers, including myself, wondered what you were protecting. It seems -- even if this was not the intent -- that there is still some form of shame lingering for family of those diagnosed with HIV and/or AIDS.

Mark, would you mind addressing what the reason was for changing your friend's first name and how it was important to his family (and how you feel about changing it)? I worry that there is an unintended message of shame lingering here.

Anna, thank you for asking. I wondered if by acknowledging I had changed his name, people would misconstrue it as shame, and indeed it has.

Even as he was dying I knew I would be compelled to share this story, and he even agreed to discuss it when he "felt better," which I felt allowed me to write this at all. And yet, his family and wide circle of friends are still reeling from his sudden death, many of whom do not yet know the circumstances. Is this a "teachable moment," or an opportunity for activism on behalf of getting tested? Certainly. But his grieving family didn't sign up for this, many of whom share my network, Facebook, etc., so it was a simple decision to change his name; the lesson remains the same.

Ironically, I have shivers of repressed activism by not including the cause of death in the obituary I just wrote for his family ("brief illness"). This would have infuriated me once upon a time, but I have too much grief and too much empathy for them to make it an issue. Again, the lesson remains the same, but isn't it sad how "dated" they seem to me today.

A beautiful story that I've been getting e-mails about since it went live on the site. Mark, your gift with words will surely help someone to continue using their own gift without pissing it away through unsafe sex or drug use.

Rick Sours | July 1, 2010 8:30 AM

Mark, I am truly so sorry. Please accept my
condolences.