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Spencer Cox, Iconic HIV Activist, Through the Eyes of His Mother and His Friend

A Conversation With Beverly Cox and Peter Staley

September 12, 2013

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Beverly Cox: I had never thought about it. After he came back and lived with me, it occurred to me that we really had never discussed whether he had had problems in high school. And so I thought about that one night, and I said to him, "Did you have problems in high school with being out and gay with the other kids?" Because a lot of times, they're bullied.

He said, "No. No, I didn't. As a matter of fact, I had several football players come to me and say, 'If you ever have any trouble, let us know. We'll take care of it.'" But I think it was his personality.

Terri Wilder: Beverly, do you remember the day he told you that he had been diagnosed with HIV?

Beverly Cox: He didn't tell me. He never told me. The way I found it out was online when I saw he went to Bennington and spoke about living with HIV.

Terri Wilder: Did you bring it up to him after you saw that?

Beverly Cox: No, but I knew it and eventually he knew I knew it. We never discussed it.

Terri Wilder: Never? Not even when he was in the hospital right before he died?

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Beverly Cox: I wasn't there right before he died. But, no. When he came back here, yes. See, he lived with me for three and a half years. So, of course, he knew I knew it then. Because I had to find a doctor for him. And he was very careful. I think he had four operations while he lived with me. He was very careful when I was trying to help him change bandages or so forth. You know, "Wear latex gloves. Be very careful."

So, at that time, he knew I knew it, and it was all out between us.

Terri Wilder: Interesting. When Spencer died in December 2012, it was, of course, devastating to you as a mother; and it felt like the whole community reacted. Can you share, if you feel comfortable, your experience of losing a son at such a young age?

Beverly Cox: It is a young age. [Though], truthfully, I always expected him to go before me -- in the back of my mind.

Terri Wilder: Why is that?

Beverly Cox: I don't know. I just knew it.

One of the things I tried to do was to protect him from himself. That was hard to do as an adult. I don't think he understood: He hurt himself probably more than most people hurt him. And I couldn't protect him from that. I think that's why, in the back of my mind, I expected to outlive Spencer. But I wasn't expecting it at this time.

When he left my house, he was really in good shape. He weighed 170-something pounds when he left my house. He and I spoke, or texted, or talked, or emailed, every two to three days after he was in New York. So I was unprepared at that time, because I had spoken to him on Friday. And he was coming home for Christmas. I said to him, "Have you thought about what you want for Christmas?"

He said, "Well, my Kindle died." I said, "Oh, great. I'll get you a Kindle." And I said, "Be thinking about other things you want." He said, "OK." He sounded great.

If I had known on that Friday what I knew Monday, I would have been there.

Terri Wilder: So you talked to him on Friday and he died on a Monday?

Beverly Cox: He died on a Tuesday. I got a call on Monday, though, saying he was not going to make it. But he had asked them not to call me. His doctor and I spoke about this. She said, "It wasn't that he didn't want you to know. He didn't want to worry you."

I said, "I know that." And I did know that.

Terri Wilder: Peter, what was the reaction from the community when Spencer died? What were your thoughts?

Peter Staley: It was a mix of emotions. It was an absolute shock to everyone. He had come back to New York only a couple of months before; he was at the red carpet premiere of How to Survive a Plague, and was telling everybody how he was very much looking forward to walking the red carpet at the Oscars.

Beverly Cox: And he looked better, don't you think?

Peter Staley: Yes.

Beverly Cox: I mean, he looked healthy.

Peter Staley: Yeah; and he seemed to be optimistic for the future.

We got that word that his roommate had taken him into the hospital and there was a small group of us who instantly created a Facebook message thread to monitor the situation and start a rotation of friends to visit him. It looked like he had really started springing back within 48 hours, and was out of the woods.

That was Saturday. I think he was checked in on either a Wednesday night, or a Thursday night. And then Monday, the shit hit the fan.

A bunch of us started getting to the hospital on Tuesday. Tim Horn and I were the only ones that got there in time.

Beverly Cox: I was going to ask you about that. How many people were there when he died?

Peter Staley: We were not in the room when he died. We got there; we were allowed to see him before he died.

Beverly Cox: OK. But he was not aware?

Peter Staley: No. They had been reviving him through the night in order to try to keep him going until you and Nick got there.

Beverly Cox: Right. And I knew that. We got a call. I got a call during the middle of the night.

Peter Staley: By the time Tim and I got there, they had done at least three long CPR sessions. And when we got there, they were into their fourth; and it lasted about a half hour.

Beverly Cox: What time did you get there? Do you recall?

Peter Staley: Like 8:00 in the morning, or 7:30.

Beverly Cox: OK. They officially said his death was at 10:15, I think.

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This article was provided by TheBody.com.
 

Reader Comments:

Comment by: Wayne Stump (Toronto, Ontario, Canada) Wed., Sep. 18, 2013 at 8:35 pm EDT
So much to say about this. First of all, thank you to thebody.com for publishing this conversation and story. Otherwise I would not have learned about this remarkable (and may I add as a gay man, very handsome) man! Even though I volunteered for the Canadian AIDS Treatment Information Exchange and learned "a fair bit" about HIV and antiretroviral treatment and the evolution of the same, I was not as aware as I should be about the role of the activist community in the development of these medicines that certainly saved my bacon for what that's worth. I was more aware of the doctors and scientists involved in the effort (such as say Dale Kempf at Abbott Laboratories who was among the first to determine the molecular structure of HIV protease in 1988/1989, leading to the development of the very important class of protease inhibitor drugs). So I very much appreciate knowing about the ACT-UP folks who did so much to advocate and bring about these life-saving medicines. Thank you! Yes, this man's death is very troubling, and causes me to wonder and reflect on many issues that are just too many to expand on here (I note that I am running out of characters as I compose this comment. I did some further research and found a good article in the New York Times: http://www.nytimes.com/2013/02/24/fashion/what-really-killed-spencer-cox-aids-activist.html?pagewanted=all&_r=0
I am indeed sad that anyone, especially anyone lucky enough to live in a privileged developed country with access to these expensive drugs and the very best health care infrastructure, should die of HIV-related causes. And then someone who indeed advocated for the development and availability of life-saving treatments. Certainly a great deal to think about, and I thank you for this. Please accept my best regards,

Wayne Stump
Toronto, Ontario, Canada
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Comment by: Douglas A. Houge (Rural Minnesota) Wed., Sep. 18, 2013 at 2:42 pm EDT
A small piece of me dies every time I hear of another passing. I was infected by 1983 and lived in DC during those awful years. At 53 years of age, I believe we all have contributed more than our share to the current progress of science. My psychiatrist wants to write off my militance as resulting from manic depression. I will not. There are miles to go before we sleep. I am so sorry for your loss.
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Comment by: John Magisano (NYC) Thu., Sep. 12, 2013 at 8:43 pm EDT
Great interview. And institutional memory is lost so easily, reflected by the major AIDS groups not "sitting across from each other." For nearly two decades the New York AIDS Coalition was that mechanism to work on state policy and funding issues, and there was also NYCOCCHA (the NYC Communities of Color HIV/AIDS Initiative) that successfully pushed the city council for funding. I don't know if NYCOCHA still exists, but NYAC died a silent death a couple of years ago. A lot of the fracturing of the AIDS community came from the early success of funding initiatives like the Ryan White Care Act. All of the groups were (are) very busy competing for gov't dollars. Many of them got really fat for a while, but it's nothing but one funding cut after another for many years now. The groups should be together on budget advocacy, but would need new mechanisms to do it. Maybe this Medius effort will restart them. How can one get involved in Medius?
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