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Remembering AIDS Activist Rodger McFarlane

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Remembering AIDS Activist Rodger McFarlane

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Remembering AIDS Activist Rodger McFarlane

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TERRY GROSS, host:

We're going to listen back to an interview with gay rights and AIDS activist Rodger McFarlane. He died Friday at the age of 54. In 1982, McFarlane co-founded the group the Gay Men's Health Crisis and became its executive director. The group continues to provide services for people with HIV and AIDS in New York City. McFarlane later headed the group Broadway Cares/Equity Fights AIDS, and was president of Bailey House which provides housing for homeless people with AIDS. He cared for many friends who had AIDS and took care of his brother when he was dying of AIDS.

McFarlane drew on his experiences to co-write a 1998 book of advice for people taking care of seriously ill loved ones. McFarlane took his life Friday. His friends and family released a statement saying he left a note explaining that he was unwilling to allow compounding heart and back problems to result in total debilitation. He'd been in pain since breaking his back in 2002. I spoke with Rodger McFarlane in 1998, the year his book, "The Complete Bedside Companion" was published.

Did you plan to be involved with health care professionally or did you just kind of get dragged into this because of AIDS and circumstance?

Mr. RODGER MCFARLANE (Former Head, Broadway Cares/Equity Fights AIDS; Author, "The Complete Bedside Companion"): Well AIDS, it was principle determinate. I had worked in the hospital and after I came out of the service I worked at a hospital management firm here in the city but I wasn't ambitious that way. What happened was I knew my way around the hospitals and the medical centers in New York when - in the earliest days of AIDS, so people started calling me. And there weren't many people who would take those calls. And eventually, the hotline for the whole nation became my home answering service…

(Soundbite of laughter)

Mr. MCFARLANE: …and I literally in the summer of 82, I answered all of those calls every night myself. And that was what gave birth to this extraordinary array of community services, you know, virtually in every major city now, these AIDS service organizations. But no, I stumbled into it just like, you know, because I had to. Those were our friends and our lovers who were not being cared for and we had to learn how to get them what they needed.

GROSS: Because there was so much fear of contracting AIDS and so much homophobia in the early days of the AIDS crisis, a lot of people didn't get the treatment that they should have. And this remarkable support network grew up around the epidemic, the whole buddy system. People just taking care in remarkable ways of friends and of lovers. And it was an article not too long ago in the New York Times that kind of said that a lot of AIDS activists were now asking the question, now that this whole kind of like support system was, you know, has been put in place around AIDS and some of that is being kind of applied to breast cancer and other terminal illness because people learned so much through the AIDS epidemic, is it time to further kind of bring into the mainstream the lessons learned from AIDS?

And should AIDS be treated any longer as this kind of like special thing requiring a special kind of care? Or is it time to just kind of look at the health care industry as a whole and figure out what's wrong with the whole system as a whole? I'm wondering if you read that article and what you thought of it?

Mr. MCFARLANE: Yeah, I did. And - you know, this is an ongoing topic of debate. Let me take this back to just a very personal example.

GROSS: Please.

Mr. MCFARLANE: When we were taking care of my dad down in Alabama, the friends, the neighbors, the people from the church, from the Kiwanis club, would come up to my bother Dave(ph) and me and say, gosh, you guys. Bob(ph) is so lucky to have you guys always seem to know exactly what to do. And what I realized was, having taken care of hundreds and hundreds and hundreds of people with AIDS, that taking care of my step-mom with lung cancer or my dad with lymphoma or my aunt Margaret(ph) with bowel cancer, uncle Billy(ph) with Alzheimer's, it really didn't matter what disease it was. It meant someone you loved was different and that they were probably going to die and that they depended on you.

And it really didn't matter which disease it was, we're not talking state-of-the-art treatment here. We're talking about diarrhea and nausea and pain and paying the bills and fighting with the doctor and getting them what they needed. And once again I guess it's almost trite to say, but what we have in common interests me so much more than what separates us. And AIDS was different because it was treated differently by the hospitals, by the health authorities. On the other hand, the model we built for AIDS should be also be the model for Alzheimer's and cancer.

GROSS: You wrote in your book that, you know, the importance of like the death bed reconciliation scene is usually exaggerated and often romanticized. What about it - what about your experiences has led you to that conclusion?

Mr. MCFARLANE: Well, as I say ha, ha, ha. I have to laugh because we form our impressions of dying and death from TV and the movies. And if you saw "Terms of Endearment" or "Philadelphia," things like - or even "Camille," it's like your skin gets rosier, the strings swell, the camera focus softens and you're surrounded by Joanne Woodward and Antonio Banderas telling you they love you.

(Soundbite of laughter)

Mr. MCFARLANE: That, in my experience, is not exactly what life in intensive care and the emergency room, where four out of five of us die, is like. Death bed, you know, epiphanies and - you know, are not met with open arm absolution in most families. I'll tell you a very personal story. We were - we had a very tough childhood and my brothers and I were physically and emotionally abused and I remember my father most vividly walking away when those things would begin. There was no way…

GROSS: It was your mother who was the abuser?

Mr. MCFARLANE: Yes, and then some other relatives. It's a long tormented story that many Americans share, I'm sure. On the other hand, my father, many years later, I was still very bitter of him failing to provide us that protection as little children. And taking care of him was really a very healing experience in my family because we did not, you know, you don't return that stuff. But, all that to say, being able to care for my father to provide the protection he could not provide for me. In the end, I couldn't forgive him. He couldn't make up for that. But I got to tell you what helps me survive his death in those years is knowing before he died, he looked at me and my brothers and said, I don't know what I would have done without you boys. And that was more important than seeking revenge or some, you know, some phony rapprochement that years of living had failed to deliver.

GROSS: When did he say that? How - was this like during the process of caring for him or was this like moments before his death?

Mr. MCFARLANE: No, this was the last year of his life. Dad actually had heart surgery before his cancer was diagnosed. So, I got to spend a month with him down on the river post-op. And that's when a lot of this was said. He did not have a good surgical recovery. He was very sick. We knew something else was going on. He was all alone and I don't want say frightened. My dad was a big, strong, brave guy who faced this resolutely. On the other hand, he was this vulnerable old man who was alone. And those are when these conversations were had. And that's when I promised him, as did my brother that, you know, the past will not stand between us here. We will be here for you no matter what happens. We can handle the symptoms. We can handle the bills. You will be cared for, you know - what's past is past and it was really important to move forward, like I said, and not return that abuse or that lack of protection. Disease and death - most families are not perfect and certainly not mine. And disease and death takes place in the context of loveless marriages and years of addiction and abuse and great regrets. And that's the context, not some, you know, not some sentimental soap-opera a screenwriter dreamed up.

GROSS: Have all your experiences with people who were dying made you kind of - do these scenarios in your own mind of like, and when I die, I'm going to do this or I'm not going to do that or…

(Soundbite of laughter)

GROSS: …you know, I'm going to be a role-model for how a dying a person ought to live out those last few days.

Mr. MCFARLANE: My brother and I, to whom I dedicate this book and who cared for my dad and the old people in my family with me, we have so many schemes hatched for exactly how we're going do this…

(Soundbite of laughter)

Mr. MCFARLANE: …and who is going to do what, when. And I'm also sure neither of our deaths will, you know, look anything like that. It's interesting, my brother talks about this - we worked so hard and so long to, you know, to try to protect the people we love when they were sick. And we've come around to like almost this Catholic understanding of it that perhaps, you know, some of the suffering really is necessary. Perhaps this - whatever this journey is with this pain and physical indignity is part of the lesson on the way out the door. Who knows? May be that's just because we're getting - the older we get…

(Soundbite of laughter)

Mr. MCFARLANE: …the older we get, the less - the more equivocal we get. I used to - say things like, you know, you do not resuscitate me under any circumstances, you know. Don't put me on a ventilator no matter what happens. Then it becomes, unless it's post-op and I'm going to - and I might get better.

(Soundbite of laughter)

GROSS: Right.

Mr. MCFARLANE: You know. So, there was actually a very good study done recently where people at the end of their lives were surveyed and even if it was just the difference of one day or even one week, even with the suffering, indignity, the pain, the - you know, all of those things, most of them still wanted one more day. It's a - you know, all these things, all these declarations we make about the way we are going to die are pretty silly. It's - you'll cross that bridge when you get there.

GROSS: Rodger McFarlane recorded in 1998. He took his life Friday after leaving a note saying he was unwilling to become further debilitated by heart and back problems. He broke his back in 2002. McFarlane was 54.

(Soundbite of music)

GROSS: You can download podcasts of our show on our Web site: freshair.npr.org. I'm Terry Gross.

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