Heartbeat Of AIDS

The Normal Heart is an HBO film adapted from Larry Kramer’s play. It’s wonderful, and worth your time. But prepare to feel devastated. Mr. Kramer is an author, a playwright, a public health advocate and LGBT rights activist. Mr. Kramer is also a strong voice for AIDS awareness.

I began to follow Larry Kramer’s work back in the 1980s, when The Normal Heart takes place. I was in my first year as a psych trainee in San Francisco, doing a rotation in a crisis clinic (a small psych emergency room affiliated with a larger hospital). At a certain point, we began to see a new presentation, which developed into a dreadful pattern. A young man would be brought in, overtly psychotic or confused and delirious. We’d ask questions and find out that he had a steady job, a strong friendship group, sometimes a steady partner, and no psych history. Further questions would rule out recreational drugs as the cause. But he’d also have a recent medical history we didn’t understand — sometimes a rare form of cancer, sometimes terrible skin lesions. He would have lost an alarming amount of weight in a startlingly short period of time. He would be in his 20s and gay. He was a healthy young man, who was suddenly dying.

During this reign of terror, AIDS ran rampant. Initially, we didn’t understand the cause, or how the virus was transmitted. Even when we began to gain an understanding, we had no medications to manage the condition. AIDS was a death sentence, and the path from diagnosis to death was gruesome. People were terrified, and the early AIDS victims were often treated as pariahs, fearful objects, grim reapers.

But Larry Kramer was different. He raised his voice, loud and unapologetic, in support of gay men infected with HIV. Interestingly, he was revered by some and hated by others for the exact same reason: he stepped forward, stood tall, insisted that bodies (both living and dead) be treated with respect and dignity. He shouted that people needed to pay attention; he was ignored; he shouted louder. He raised his voice for those whose voice had been taken away.

Larry Kramer first wrote The Normal Heart as a play. The story follows the outbreak of the AIDS epidemic in the United States, from 1981-1984, in New York. I was in a different city, but the issues – medical, political, personal – were exactly what my colleagues and I faced in San Francisco. Watching the film, each hospital scene brought back a flood of memories from being a psych trainee on Jim Dilley’s “AIDS Ward” at San Francisco General Hospital. Dr. Dilley set up a unit solely for AIDS patients, staffed entirely by people who chose to be there. Even as a trainee, I was offered the choice to opt out, because everyone was so frightened. But Dr. Dilley was a rare blend of intelligence, decency, talent and compassion. I trusted him, and I knew I was being offered a once-in-a-lifetime opportunity. I figured if I was going to help my patients step up and deal with their fear, then the least I could do was step up and deal with my own. To this day, I’ve never seen a better-run unit in any hospital. I’ve never been in an environment with a stronger sense of teamwork, with more exemplary patient care. Working on Dr. Dilley’s AIDS Ward was a privilege.

It was also a heart-break. There’s a camera shot in The Normal Heart, lasting just a few moments: two gaunt and emaciated men, lying in adjacent beds, holding hands. Back on Dr. Dilley’s AIDS Ward, I saw those two men many times.

I never met Larry Kramer, but I hold his work in high esteem, and I admire him for his commitment. He fought for a long time with minimal support, and I can only imagine how alone he must have felt. But he never gave up. He raised awareness, and his work saved lives.

The Normal Heart took me by the throat, as it should. Every personal loss in the story reminded me of San Francisco, in the 1980s, when I knew too many who died too young. I remember the sadness, fear, frustration, defeat. Then I take a deep breath, and inhale a tiny bit of Mr. Kramer’s fire.

I’m grateful to be here to remember.

____

Amy Kaufman Burk is an author and blogger. Her first novel, Hollywood High: Achieve The Honorable, was written in reaction to seeing gay students bullied in high school, and follows one family’s journey after their daughter comes out. Her second novel, Tightwire, includes a strong friendship between a gay man and a straight man, as well as two women, a couple raising 2 children, who become role model parents to the main character. Amy’s blog has several posts in strong support of LGBTQ+. Check out Amy’s website to find links to her blog and her novels on Amazon.

http://amykaufmanburk.com

 

 

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7 Comments

Filed under AIDS awareness, Larry Kramer, LGBT, The Normal Heart

7 responses to “Heartbeat Of AIDS

  1. Margot Schindler-Ehrens

    Amy,

    My heart goes out to you. Your fear was real and your time also probably took a high toll on your psyche. There’s actually a name for the type of burnout that comes with dealing with older people who are dying… It’s incredibly hard and can simply take the depth out of you. I’m glad you’ve kept that… So, the ward must have been well run for that to have happened as well.

    I was part of ACT UP in L.A. during the time I was involved in Clinic Defense in Silverlake. We did some fun things… We blocked the streets for a week, in the evening, when the then Governor of CA signed a bill allowing prejudice against gays. We were part of the Gay Pride parade and did a chant, “Health Care is a right, health care is a right,…. ACT UP! The funniest things we did though, was to go to Cardinal Mahony’s party… He was actually given a huge party at Union Station down town and we had a huge condom kite that we flew overhead. Then, we passed out condoms to the people leaving the party. For this, there was a blockade of police blocking the entrance of Union Station which was, I”m told, illegal, but hey, the Catholics needed that sort of protection.

    I was never arrested, but some of my friends were. ACT UP got attention because they knew how to create meaningful chants and create actions that made a difference. We were having fun, but it was also quite serious. That was an interesting time and it was nice to be involved in two groups dealing with health care issues, but I didn’t have to deal with the pain involved in caring for those suffering. Only one of my friends succumbed to the disease of whom I was aware of.

    I can’t see the movie, but I can appreciate what you are talking about. My past experience makes seeing pain on the screen quite difficult. Only, I appreciate your posting, your understanding and experience.

  2. Thank you for sharing your experience, Margot. It’s fascinating to hear your perspective.

  3. Hi Amy,
    Thanks for this. It’s good for me to see through your eyes. Even though I was in that time too, I wasn’t touched by AIDS beyond the horror I felt reading about it. I have always had many gay friends, and have spent a lot of time arguing against the insanity of prejudiced legislation and bigoted behaviors. But the disease did not get close enough to me or my friends for me to comprehend it. I take responsibility that I wasn’t listening hard enough. Thank you for being one of the people of my generation who dived in to help. We’re all benefiting now from the work you and others have done to keep this fight at the forefront, which has generated the scientific interest to help finding a cure. I know we’ve come a long way, at least empirically, to cut back on its deadly advance. Thank you for your part! Gren

  4. Thank you for your comment, Gren. My role was tiny, but I was deeply affected both personally and professionally. People like Larry Kramer and Jim Dilley made a huge difference. And of course, the real “heroes” are those who died of AIDS, and who live with the virus now.

  5. Pingback: LGBTQIA Posts | Amy Kaufman Burk's Blog

  6. Cate Steane

    Amy, just last night I watched a documentary called We Were Here, about the AIDS epidemic in San Francisco. You and I arrived in San Francisco close to the same time and responded in what ways we could – along with some political work, I became a part of the AIDS Legal Referral Project and did house calls for patients who needed wills and powers of attorney.

    While We Were Here covers the same issues as The Normal Heart (I think – I haven’t seen the play or film), it did not leave me feeling devastated. In part that was because one of the subjects interviewed (in 2011) was someone I knew in 1986, and I was so happy to see that he is still alive. In much larger part, the film touched me without being devastating because it focused quite a bit on the compassionate response of the community to the crisis, from Shanti volunteers to lesbians who organized blood drives to benefit the gay men who were banned from blood banks. I highly recommend it.

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