Living with AIDS

Living with AIDS

Friday, November 09, 2007

AIDS nearly killed Topanga Canyon resident Randy Neece 11 years ago. He writes about his struggle with the disease and his road to relative healthiness in his book, “Gone Today, Here Tomorrow.”

By Jonathan Friedman / Assistant Editor

Randy Neece is living the good life. The Topanga Canyon resident runs Canyon View Ranch-a five-acre vacation place for dogs that is more a luxury resort than a kennel-with his partner of nearly 25 years, Joe Timko. He spends his days taking care of and playing with dogs while running the financial end of the successful business. And his health is excellent. One would never know that he has full-blown AIDS.

Neece, 54, has chronicled the ups and downs of his life in a book released this year titled “Gone Today, Here Tomorrow.” The novel begins as a tale of a young Quaker boy in Orange County struggling with his sexuality. In his teens, he toured the world as a member of The Young Americans musical group, and this eventually led to a career in game show and documentary production.

The book is also a love story. After several years of numerous short-term relationships, Neece met Timko, now 50, in 1983. The two were prepared to celebrate their fifth anniversary and soon a wedding when one day Neece received a letter from a life insurance company denying him coverage.

“There was no mention of HIV in the letter, but I didn’t have to be a Mensa member to decipher the code,” Neece writes in his book. “I knew exactly what ‘abnormalities detected in my blood’ meant.”

Neece and Timko both were tested the next day, with Neece officially learning the news he already knew and Timko surprisingly finding out he was negative. Since the two had carried on a monogamous relationship for half a decade, it was determined Timko probably had some sort of immunity to the virus.
Despite finding out he had what at that time was still essentially a death sentence, Neece continued on with as normal a life as he could. He and Timko entered “unchartered territory” with a gay wedding in which “everything about a ‘traditional wedding’ had to be adapted, reinvented or tossed out.” The couple went on a honeymoon to Kauai. And Neece continued to work on various television shows and medical documentaries to varying degrees of success. Life continued on a somewhat normal path until 1993, when his HIV advanced into AIDS.

For three years, Neece was in and out of the hospital, nearly dying on each trip. And the times he wasn’t there, he was at home receiving medical treatments from Timko and taking drugs that helped him stay alive, but also made him terribly sick. While Timko remained optimistic, at least outwardly, throughout that period, Neece believed on many occasions that death would be a better option.

“I’d had enough needles and pills, and hospital stays,” Neece writes. “It was time. If God was going to perform a miracle on me, He would have done it long ago.”

Neece’s desire to die and Timko’s will to keep his partner alive is a significant struggle in the book. Eventually the two made a deal after seeing a friend who counseled them. Neece would continue with the IVs and drugs. But the next time he had a major sickness and had to return to the hospital, they would “let nature take its course.”

And then in March 1996, that miracle Neece thought would never come did. A new drug called Saquinavir had reduced his viral load (the amount of active HIV in the body) to zero and increased his T-cell count. Over the years he has taken other drugs and he continues to remain healthy. Today he takes four pills a day, which Neece described in a recent interview as “tough on the system, it’s not like popping four vitamins.” But it is nothing like taking 50 pills a day, which he used to have to do.

Shortly after the miracle drug came into Neece’s life, he returned to work in game show production. But that was short-lived, as he and Timko, who had become a successful dog trainer, founded Canyon View Ranch.

Neece said he got the idea for his book after receiving several favorable responses to a brief article he wrote in The Advocate about his battle with AIDS and his success with Canyon View Ranch. So, over the next few years as a side project he put his life story on paper, writing the book for himself, with no intention of anybody actually reading it.

“There were times for eight hours I would sit writing, and it felt like I had been through the most amazing session with a shrink,” Neece said. “Things bounced back so quickly and I went into full gear so fast once I got well that I never really had a chance to stop and see what had happened. So writing this was really therapeutic.”

Despite the dark subject matter in the latter half of the book, Neece still includes humor. A deadly infection of the lungs that affected him several times, known as Mycobacterium Avium Complex, Neece refers to as the MAC Attack. A chapter detailing his emotions about what he believed was his inevitable death while describing his anger over the fundamentalist Christian reaction to AIDS is called “Dear Pat Robertson: My end is near. Kiss it!”

“AIDS can be a very depressing subject,” Neece said. “So I wanted to give the readers a little bit of release from wanting to tear their hair out.”

The book has received good reviews in the gay media, and large crowds have come to book signings, many of them with their own stories of survival and those struggling with illnesses who see Neece’s book as an inspiration.

“I was just amazed with the response,” Timko said. A man who prefers happiness, Timko said he doesn’t often think about the struggle that ended more than a decade ago because it makes him sad.

“My days then weren’t really set up until I saw him [Neece] coming through the living room door,” Timko said. “And then my heart would stop, and if he had that ‘I feel awful’ look, I’d feel sad and know it would be a bad day. And if he looked better, then I’d feel like ‘Oh good, it’s going to be a good day.'”

Timko said through most of the battle, he felt that Neece would get better, and it upset him as things only got worse.

“The day the ethics consultant came, that was the first time I gave into the fact that he was going to die,” Timko said.

Today, Timko and Neece are grateful that they have the life they do and that Neece is relatively healthy. But Neece never forgets he has a serious disease that is still without a cure. And because of that, it allows him to look at things differently.

“I feel much freer to try things, to branch out,” Neece said. “I’m much more focused on doing new things rather than just repeating. [Earlier in life] I would have never gambled on buying this five-acre piece [Canyon View Ranch]. But when you get lucky and start anew, it does put a whole new spin on things. Time is precious. And I don’t waste time on the things that aren’t important.”

Gone Today, Here Tomorrow (2.0)

Gone Today, Here Tomorrow (2.0)

With the re-release of my memoir, Gone Today, Here Tomorrow, I’ve decided to get into blogging and throw my two cents into cyberspace – at the risk of having them fall back to earth and land on my head.

My book, which began as a short article in the Advocate, morphed into a memoir and was published in 2007. It got some good reviews, but what meant the most to me were the emails and letters that I received from readers. Men, women, young, old, gay, straight, some were HIV positive; others were battling cancer or some other health crisis, and to quote a teenager at a high school I spoke at, some thought it was “cool to read about two old dudes who have been together forever.”

One of the reasons I wrote the book in the first place was to give readers a look inside a thirty-year marriage between two men and help answer the question: What really defines a marriage?

A lot of people seem to have some very strong opinions on the subject and are staunchly against marriage equality every time it comes up for a vote. Problem is, number one, I don’t recall getting to vote on whether or not they could get married, and number two, I’d bet the farm that most of those folks have never gotten to know a gay or lesbian person, let alone a gay or lesbian couple, let alone a gay couple like us who has been together almost four times longer than the average straight marriage has lasted. (In 2009, first marriages between a man and a woman lasted a median of eight years before ending in divorce). So I decided to open up our lives on paper (and E-book) and give people an up close and personal look at what our marriage has been like.

Aside from the fact that Joe crawled to the front lines of the AIDS war and pulled me out of a foxhole and back from death, or that we managed to reinvent our lives after losing everything – including my career, in all other respects, I think ours has had a lot in common with most marriages between two people, straight or gay.

People have managed to invent a whole host of reasons why two people of the same sex shouldn’t have the right to marry. Most objections are based on religious grounds and what they have been told by their pastors or priests throughout their entire lives. Some claim biology and that Tab A fits into Slot B, so it must be what nature had in mind. Others are convinced that same-sex marriage would undermine the institution of marriage and somehow tarnish the holy union between a man and a woman – like divorce hasn’t already taken care of that. I could probably blog myself silly listing all of the reasons why some people still insist that marriage is between one man and one women. Period. End of discussion. But as the song from Porgy and Bess goes, “The things that you’re liable to read in the Bible, it ain’t necessarily so.”

That’s why I thought it was important to include in my book what the Bible really says about homosexuality. Turns out, not much. Just six short passages in all those books, chapters, and verses. Compare that to what the Bible has to say about judging and condemning others, and the score isn’t even close. So how come it’s such a hot-button issue with religious wingnuts? Here’s a hint. Follow the money, and read what I discovered about it all in Chapter 17, which I entitled, “Dear Pat Robertson: My end is near. Kiss it!”

While I was writing Gone Today, Here Tomorrow, it was tempting to get on my soapbox and hammer home why my marriage to Joe is as real and meaningful as any other union between two people who commit their lives to each other. The only difference is that we’ve managed to stay true to that commitment, while the majority of marriages today have failed. The real irony is that many of those same people in failed marriages somehow think Joe and I are the real threat to the institution of marriage. See? There I go starting to get on my soapbox. My point is, while I’m not usually reserved in my opinions and speak my mind quite freely (which can be dangerous when you’ve also got a hot temper), in writing my memoir, I tried to just tell the story and let the reader decide in the end if our thirty years together fits the true meaning of what a marriage is all about in every way that really matters.

There was another reason that I decided to re-release my memoir. I left something out in the first edition that I think is important, and I wanted to clarify some realities about my life today. I think there’s a myth out there, especially among young people, that getting exposed to HIV is not such a big deal anymore. Just pop some pills and everything will be fine. In my efforts to bring my story to a happy ending – and it is – I think that I glossed over the fact that my life is far from normal. While it’s true that HIV is a chronically manageable disease with the right combination of medicines, it’s also true that the drugs have their own set of not-so-pleasant side effects. Then there’s the cost. For my meds it’s about $16,000 a year. Fortunately, I have insurance, but not everyone is that lucky. And not everyone responds to the medications. If they do work, the question in the back of your mind is always, for how long?

Trust me … getting exposed to HIV is still a very big deal despite the fact that it may not be the death sentence it once was.

I have had the opportunity to speak at a number of high schools and Gay-Straight Student Alliances, and I’m always stunned when I realize that most of these young people have only a vague idea or none at all of what the AIDS crisis was like in this country. The drugs came along at about the time they were being born, so they never experienced the horror of it all. I’m grateful their generation will never have to go through what mine did, but I’m also worried that it’s not just the history of the pandemic that’s lost on them, it’s also the lessons we learned from it all that are not being passed on. That scares me because we all know what happens when people do not learn from history. Statistics don’t lie, and the facts are that nearly 50,000 new infections of HIV are reported every year in the U.S., and 17,000 deaths still happen every year (worldwide the death toll is 8,000 people a day).

So those are a few of the reasons why I decided to write Gone Today, Here Tomorrow, and why I wanted to re-release an updated version. My friends who know me well, and of course, Joe, know that I view my survival mostly as a blessing with a huge disclaimer attached. I carry with me always a commitment to the memory of my friends who didn’t make it through this war, and to pass along the lessons we learned to the next generation – whether it’s a cautionary tale or just a story about two old dudes who have been together forever.