When my test results came back negative for the virus, I was overcome with relief. It was the first time in almost a month that a little bit of good news had crossed my path. This meant that the likelihood of Brian or Little Larry having the disease was slim.
Larry and I hugged and cried together in celebration. But, of course, our celebration was short. Larry was still going to die.
Even with my test results, we couldn’t be 100 percent certain that either of our sons would be okay. I tried to remember if Larry had ever cut himself while playing with the boys or while changing Brian’s diaper. Larry worked with metals, so his hands frequently had cuts on them—cuts that it had never dawned on us could be harmful to anyone else. I hadn’t yet learned exactly how HIV was transmitted, so I watched my kids like a hawk. I was paranoid that they could still contract the virus, and I looked every day for the slightest hint of a symptom.
Little Larry would ask, “Daddy, can I have a sip of your iced tea?”
“Oh, no, honey!” I’d say as I quickly jumped up and grabbed the glass. “Daddy could have a cold or something, and you don’t want to get his germs.” I probably got a reputation as a germophobe with anyone who witnessed my behavior.
When Brian turned one, our pediatrician repeated his recommendation that, like Little Larry, we not put Brian through a test unless he became symptomatic. He hadn’t seen many cases of HIV in infants, even though the number of newborns with the virus was growing. He didn’t think Brian or Little Larry showed any telltale signs, so as tough as it was, we did as he advised.
We had known our pediatrician for many years, and he was one of those old-fashioned salt-of-the-earth doctors you rarely find anymore. I knew he cared about my children, and Larry and I had to trust someone, because how were we to know what was best?
Unfortunately, most members of the medical community weren’t helpful to us at all. This was before the Internet, so you couldn’t just google names of facilities that worked with HIV patients. I had to do some very discreet investigating to find out where we could get assistance. Organizations like Project Inform in San Francisco and the Gay Men’s Health Crisis (GMHC) in New York were true advocates for those with HIV/AIDS. We were so lucky to have them. They funded research, and they provided care and counseling. Most importantly, they demanded action from the government and drug companies, all of whom had turned their backs on the disease and the patients who had it.
Still, I felt I had to be careful not to put us on mailing lists in case a bit of our mail ended up in the hands of a neighbor. It wasn’t like much of the heterosexual community was making donations to GMHC at that time, so I didn’t know how I would explain getting mail from them.
At first, GMHC referred us to meth clinics and rehab centers for drug addicts, but those resources proved to be of absolutely no help. It was as if they felt “What’s the point in trying to save a drug addict? They’ll just go out and use again anyway.” We went back to GMHC asking for doctors, and they gave us some names and informed us about clinical trials.
They also taught us about safe sex. Surprisingly, the physical intimacy between the two of us increased. It was very important to me that Larry never feel he was untouchable or unworthy of love because of his HIV. We took every precaution and connected intimately not just with our bodies, but with our minds and spirits. Our kisses held so much love, as we no longer took our precious time together for granted.
The people in the organization were extraordinarily kind to me. I’ll always remember them with immense gratitude. I can’t say I developed a personal friendship with anyone there, but it was a relief that someone genuinely cared and understood what we were going through. Whenever I felt like I was falling apart, I could call them, and they would talk me off the ledge. Yes, I was talking to a stranger, but if it hadn’t been for them, I would have had no support at all.
Day to day, I was leading a double life. I was one person with Larry and another with everyone but the few medical professionals and counselors who knew about the diagnosis. I put on a false face for my sons, my family, and my friends, making believe that everything was perfect. I couldn’t cover my ass fast enough. I was always trying to stay one step ahead so no one could figure out what was really going on. The diagnosis was like a bomb that could detonate at any moment, and I felt it was my job to keep it from exploding.
It was a gargantuan task, and I worried about that impending explosion daily. For a long time, I went to sleep in fear and woke up in fear. And in between, the lies filled me with shame.
I occupied myself with learning everything I could about HIV/AIDS, how to eat right, and how to stay healthy. I learned how to cope with despair in a powerless situation. I became the decision-maker. I was 32 years old, but felt like 100.
It didn’t take long for panic attacks to set in. I’d start hyperventilating out of nowhere. And I fought off depression as I kept striving to get rid of Larry’s awful virus through sheer will.
One of the things I hated most was having to factor HIV into nearly every decision I made. I couldn’t make plans too far into the future because I knew Larry might not still be with us. A shadow was cast over even the fun experiences in our lives. When we went to the kids’ school concerts, I wondered how many more Larry would witness. More than once, he said, “I hope I can make it to see Brian graduate from kindergarten.”
I was braced for the day when the boys would watch their father waste away and I wouldn’t be able to keep the secret from our friends and family anymore. But I had no idea when that day would come. I went from worrying that Larry would come home high to worrying that he would become symptomatic. Essentially, I had traded one obsession for another.
I looked at other parents and envied their lives. I knew no one else was thinking, This could be the last time we do this together as a family. The circumstances certainly taught me to cherish every moment, but the fear made it impossible for me to truly enjoy it. The chaos simply wouldn’t let up.
Of course, resentment welled up inside me too. I know that’s human, but I hated myself for feeling it. I took on most of the responsibility for our situation. I was the one who had had kids with Larry. I was the one who hadn’t trusted my instincts and left him years before when I should have.
A part of me wanted to scream at my husband, “What the hell have you done to us?” But I couldn’t say such a thing out loud. The man was facing death and the reality of not seeing his young sons grow up. My anger was present, but I didn’t feel I had the right to feel it. It was simply easier to blame myself.
So Larry and I kept up our pretense, even when we were alone. Our everyday conversations included the topics most married couples talk about—our kids, playdates, work schedules, and the details of fixing the house. We didn’t sit down and have a courageous conversation, like “Honey, I’m so scared about what’s going to happen to us when you die.” I tried to say this a few times, but I just couldn’t make myself say it. I don’t think either of us could have borne such a discussion.
My journal became my true confidant during this time. There, I could write down all of my fears and worries without judgment, even though it wasn’t as comforting as a trusted friend would have been. I assumed I had very little time to figure out how we were going to make it through, and writing it out in my journal helped me to strategize about how we’d survive once Larry was gone. I loved our home and our neighborhood. I wanted to be able to keep them for our kids to give them some sense of stability, so I worked hard to leave no stone unturned.
One evening, I saw an ad on late-night TV for life insurance that purportedly didn’t require a medical exam. Of course, once you contacted them, they told you that they still expected you to get the exam. So I called and told them we didn’t have time for it, to which they said, “Okay, but in that case, you can only buy a policy worth $10,000.”
At that time, $10,000 might as well have been $100,000! I found two more companies like that one and got policies that would each pay o
ut $10,000, for a total of $30,000. That gave me some peace of mind, knowing that I would be able to at least pay for a funeral and pay off some bills.
It was a source of embarrassment with my friends, though. They talked about the life insurance policies for $100,000 or more that they’d bought. When they asked me about mine, I lied: “Yes, I bought one of those $100,000 policies.” I played the game so no one would know, but inside, I felt like a loser and an outcast.
Health insurance was another serious concern. We had my COBRA coverage from my previous job, but when it ran out, we might not be able to get Larry covered by another policy. I needed to get back to work soon, assuming my entire family would be covered by the company policy without the need for exams.
I also knew I’d soon be the sole supporter of my boys, so I decided to look into returning to FIT to finally finish my degree. I only needed a few more credits.
We couldn’t really afford the tuition, but my credits were set to expire in less than six months. We agreed that I would register, and we’d put the tuition on a credit card. Somehow we’d manage to pay for the gas to Manhattan and the parking.
No one else in our lives could figure out why it was so important to me to go back to school when I had two little kids and a husband whose business was doing reasonably well. I pursued my career with a newfound but quiet urgency, and people in our lives saw me as driven without knowing why.
As we went about our day-to-day lives, one day led to the next, and a year went by as Larry showed no symptoms and continued to be able to work. Then, another year went by . . . and another . . . and another . . . and another. While so many AIDS patients died within months or a year of their diagnosis, Larry just didn’t get sick. I even began to entertain the thought that the doctors could be wrong. Maybe he wouldn’t die after all. Larry had still never advanced from HIV to AIDS, and he didn’t have the lesions and other symptoms that most AIDS patients developed.
The stigma about the disease hadn’t eased, though. Those with AIDS were still treated as pariahs, and people remained afraid to even be within breathing distance of someone with the disease. That truth was brought home to us one night when Larry and I watched the movie Philadelphia, in which Tom Hanks’s character faces that stigma while he dies of AIDS.
Larry started to cry as we watched. “That will never be me,” he said. “I’ll never waste away like that. I’ll kill myself first.” I can still feel darkness and death coursing through me whenever I hear Bruce Springsteen’s song “Streets of Philadelphia,” which he wrote for the film.
Larry saw a number of doctors during the first few years after the diagnosis, but it took five years to find the right one. Dr. Lewis R. Marton was an infectious disease specialist and a godsend. He was not only caring, but also the first doctor in the area to specialize in HIV/AIDS. He had lost his own brother to AIDS, so he had dedicated himself to studying it. He was on the cutting edge of research and treatment. It was a relief that Larry would finally get the best care protocols.
Dr. Marton saw Larry monthly, spending more than four hours with him at each visit and monitoring him carefully. “I’m hesitant to give Larry the usual medications,” he told us. “Better meds with fewer side effects are down the road, and if we can just hold out until then, it will be better. Plus, if you get treatment, you might not be eligible for clinical trials. I want Larry to have the chance to be on the most effective medications for HIV. So I’m going to monitor his T-cell count religiously to make sure it’s still safe not to medicate him.”
A person’s T-cell level is an indicator of their immune system’s health. Since HIV destroys the immune system, T-cell counts tell doctors how much a patient’s health has deteriorated. When an HIV-positive patient’s count falls below 200, that person is considered to have AIDS.
Even though Larry’s T-cell count continued to drop, it never fell below 250, and he remained without symptoms. No one could tell that his immune system was weakening. He was truly a special case. While he did lose some weight, people were so accustomed to his lankiness that they didn’t seem to notice.
Dr. Marton also agreed with our pediatrician about our sons. He felt as long as they didn’t show any symptoms, we were safe in not testing them. Meanwhile, Dr. Marton wanted me to participate in a study of people who had been exposed to HIV but hadn’t contracted it. In their efforts to find a cure, they were trying to learn if some of us had antibodies that protected us from the virus.
It turned out that I did indeed have an antibody that kept me from getting the disease. That was a huge relief, and it also helped me feel more secure about the safety of the boys.
Finding Dr. Marton helped us to feel a bit more secure, even though we knew it was still a matter of time before Larry got sick. As Larry continued to build his business, he also became obsessed with finishing our own home’s renovations before he died. He knew he couldn’t leave us much, but this was perhaps a legacy he could provide before it was too late. It was the ultimate act of love on his part, because he knew a real home was what I’d always wanted. I’m sure it was also his way of ensuring that we’d remember him fondly after he was gone.
Still, he went overboard, in my opinion, and it was sometimes alarming how much he wanted to do: Rip the roof off the house. Add more rooms. But there was a limit as to how much time and money he could devote to the house while also trying to build a business and bring in income for us.
I believe Larry was in deep denial about his HIV, perhaps because he was still asymptomatic and felt so confident about Dr. Marton. As a result, he kept expanding the renovations. This meant that the cost also expanded, but he didn’t want to think about how we were going to pay for it all.
It just caused me more worry and stress on top of my own worry and stress over Larry’s condition. What would happen if he died tomorrow and I was left with this half-finished house? I wouldn’t be able to afford to complete it, nor would I be able to sell it unfinished.
Still, I didn’t have the heart to say, “Larry, we can’t afford all these improvements. What happens if you don’t manage to finish?” I knew working on the house was his therapy. It gave him so much happiness, and I knew how much it meant to him to do it for us. He never expressed his feelings to me, but I was aware of the depth of guilt and regret he held inside. And I, once again, hid my worries from him, as well.
As a result of the cost of the renovations, our mortgage, and other expenses, we always seemed to be in catch-up mode financially. Almost every extra dime we had was spent on improving the house. I was continually trying to pay off our credit cards because I knew I wouldn’t have much life insurance to help me get out of debt when Larry was gone.
When Brian was about four years old and Little Larry was about nine, my good friend Debbie came up to me while I was on the beach during a two-day vacation with the kids at the Jersey shore. “I’m giving you the keys to my house,” she said with a smile on her face.
“Why?”
“Because you’re going to need a place to live.”
“What do you mean? Why?”
“You’ll see” was her only answer.
When I had made my way back to our house, the neighbors started coming outside to see my reaction. We were quite friendly with our neighbors, even if our secret meant our relationships with them were mostly superficial.
When I got close enough to see our house, I stopped in my tracks. It was almost completely leveled. Larry had torn down so much of it that it was no longer livable. Three walls remained, but there was no roof. Plus, there were wires running from the electrical box out to the telephone pole.
Standing in front was my husband with a big smile on his face.
“Oh, my God, what did you do?” I asked him, aghast.
Brian was devastated. “What happened to my house? Where’s my stuff, Mommy?” he asked me.
“I rented a big tractor trailer for our stuff,” Larry said. “I’ve already had all of it loaded.”
Our neighbors we
re so thrilled for us. “Isn’t this great?” they said.
No, this isn’t great! I thought. How will we pay for this? What if he can’t finish it? What will I do then? We won’t even have a place to live!
We never moved in with Debbie. Instead, Larry and his workers put a huge blue tarp over the house and placed our mattresses inside. We slept inside the house under the tarp. It was summer, and we were lucky it didn’t rain much that year. But we laughed when we woke up with dew on our faces.
For me, though, the realization came quickly that these precious moments would be the memories we’d call upon after Larry was gone. But within about a month, the house had a frame and roof again. There was still plenty of work to be done, but we could live there without the tarp.
Everyone thought Larry was such a great guy for doing this work on the house for his family, and no one could understand why I wasn’t ecstatic. But they didn’t know that if he didn’t manage to finish, he wasn’t going to be the one left to pick up the pieces.
Besides being a killjoy, I also developed a reputation as a nag among my family and friends, even my kids. I hated it. Just as I had always been after him about his addiction recovery, I felt I had to be watchful of his health after the diagnosis. I knew Larry needed to keep his T-cell count as high as possible, so I constantly reminded him to take better care of himself. He would go through phases when he’d be vigilant about taking his vitamins and nutritional supplements. Then he’d become lax and I’d have to remind him again.
A few years after his diagnosis, I grew weary and felt trapped in my role as gatekeeper. Certainly, I didn’t want to lose my husband, but it was exhausting being the only responsible adult in the family.
We began to spend Sunday afternoons at my parents’ house on a regular basis, but those visits were tainted by my nagging. Both my mom and dad adored Larry and the kids. Their relationships were harmonious with one another, and my relationship with them had improved immensely. So the visits were mostly pleasant.
Unlocking Secrets Page 7