Following up my last blog about the death of Steve Crohn, is this Q & A:
When I’m trying to work things out in my writing I start asking myself about how I intend to present my ideas to my readers. In looking at my notes, I realized it might be an “interesting” interview to conduct with myself. This interview is about a book I’m working on about history, technology and AIDS.
What do you do when someone you had planned to interview for your book dies?
It depends if that death effects the telling of the story and how much it affects it.
For me, Steve Crohn’s unexpected death came as quite a shock, and made me rethink how I was going to approach the information in my book.
Who is Steve Crohn and why is he important to your book?
Mr. Crohn was a man who was living in California at the onset of the AIDS outbreak and his lover at the time was the fifth person to die from AIDS. Like many gay men of that time, Mr. Crohn led a lifestyle that normally would have contributed to contracting AIDS. However, he never fell ill. He later moved to New York City and remained healthy. By all accounts Mr. Crohn should have been sick and through his own initiative, he sought out to be studied. It was from studying him that doctors learned that he could never get AIDS because he carried the delta 32 gene mutation.
So when Mr. Crohn recently committed suicide, it was shattering. I believe his suicide shows how devastating that disease is and what it means to be an AIDS survivor.
What does it mean to be an AIDS survivor?
I think it means something different depending on the time frame we’re talking about. When AIDS first appeared in the U.S. there were no survivors. If a person survived, it was something—it was unheard of—which is why doctors were puzzled by Mr. Crohn. He was surviving when everyone around him was dying. Doctors said, ‘hey wait minute, by all accounts, you should be ill’ but he wasn’t. He was healthy. By then being a survivor was something different. It meant not dying from AIDS or HIV. It meant coping with loss—an enormous amount of death—which would constantly surround the survivor while that person continued living a healthy life. And that meant dealing with survivor’s guilt.
Think about it. It’s difficult to have one person who is close to you die, but when that number builds at an alarming rate—all your intimate friends, your lover(s)—well, it is overwhelming to handle. Truthfully, I can’t imagine it. They say it’s like living through a war.
And then there are today’s survivors, who have different choices—they have the assistance of drugs that can help them survive—that didn’t exist 30 years ago. There isn’t the stigma and fear today that was so prevalent then, when people were thrown out of their apartments and public places, so it’s very different today in comparison to the hell of the 80s and 90s.
What got you so passionately involved in writing this book?
That’s a good question that has multiple answers. It wasn’t just one thing, but a combination of things. It goes back to certain key points I found through the years…where should I begin?
As a writer, I’m an information gatherer. I’m always jotting things down. My world is filled with information on Post-its, envelopes, napkins, pretty much anything I can write on.
One of my loves is science. I’m very interested in DNA and our human body. What genes get passed on to the next generation and what gets suppressed and why. I like taking notes during TV shows, like PBS, NOVA or from books or articles I’ve read.
I was watching PBS (Secrets of the Dead Series) and found out about Steve Crohn and the delta 32 mutation he carried. I was riveted. I couldn’t believe what I was hearing. I was fascinated to know that there was someone who couldn’t get AIDS because of a gene mutation. That piece of information blew my mind and stayed with me through the years. I still have those notes I wrote in 2003.
Then there is the fact that I grew up in the era of AIDS, and I remember what a scary time it was. No one knew anything and we were kept in the dark, especially if living in a more rural place, away from the big cities. What I really remember most of all is that doctors really didn’t know what was going on, and there was such FEAR. Reports changed daily or weekly and that was only after the media started to report it. FEAR was huge.
So, from that experience AIDS has always interested me in some way, as I don’t understand it; and what I mean is I don’t understand the virus…how does it work? Why is it so deadly? How did it become so out of control? Why at that particular time—1980s—did it explode? When did it initially appear? Has it always been around and we just didn’t know it? And will we ever know the answers to these questions? And how has our knowledge about it changed today from what we knew back then? My questions are endless. And I hope to answer them, or at least some of them in my book. The virus is complicated.
I also became a huge Queen fan much later in life, although I enjoyed growing up with their music. Freddie Mercury fascinated me as a showman. 1985, LIVE AID, Radio Ga Ga was absolutely mind blowing. I remember seeing it then and wondering how the hell he did that. Even if fans didn’t know Queen, or the song Radio Ga Ga, he captured them, held them and had them clapping and singing with him. Seeing that audience and the wave of crowd motion, along with the call and response, makes my hairs stand on end. At that time Freddie Mercury was told by his doctors not to do that performance because he was having throat problems—which was his first sign that something was wrong with him. It was not apparent from his performance. For me, it makes watching LIVE AID all that more meaningful. In that LIVE AID show, you can see the cameramen, Jim Hutton, who later became Freddie’s boyfriend, staying with him until the end.
From revisiting Queen’s songs, I began seeking out other 80s songs and information. That led me to write a blog about the 80s, which I intended to post on my website; but when I actually began writing, it kept growing. Then I noticed some connections within the information I was gathering, and I said wait a minute, what’s going on? When I pursued it further, I realized I had something much more than a blog. I had an article that was worth selling. That was the Fall of 2012.
About a month later, on an unrelated project, I interviewed Margaret Meloni, who is a project manager and coach in California. At the end of that interview she asked what other writing projects I was working on, so I mentioned this article to her. She said, “You don’t have an article, you have a book. And I know what you should title it.”
That’s when the project completely changed for me.
I began to compile that information into a book.
How long will it take for you to write this book?
Honestly, I don’t know.
To give some perspective, it has taken me years to gather the information I already have, and I continue to discover more. I had mapped out chapters, but due to the new information I have found, some changes need to be made. I have to make adjustments according to what I find and how that information fits into those chapters, and if not, where it belongs.
The more information I gather, the more my head swirls. AIDS is complex and is not a simple thing to answer, define or clearly understand.
But I’m trying to create a book for laymen that would be quite palatable, informative and enrich their understanding about the disease, the technology and the history. Right now, there really isn’t much mainstream attention given to AIDS. While it’s mentioned from time to time in the media, it no longer seems to have the urgency it once had.
Most important question of all—what is this book about? Is this book solely about AIDS?
No, it’s so much more than that. It’s a book about history, technology, HIV and AIDS during the Reagan era. I want it to detail the times when technology and AIDS began to impact our lives.
I haven’t even begun to mention any of the technology findings that are equally fascinating.
That will have to be for another time.