Unlocking Secrets

by Kathe Crawford

  But then I’d start to worry about all the time we spent there rather than working on the house. I’d say, “Larry, we really have to get back home so you can finish that trim work,” or “We really need to get going so you can figure out how to complete the kitchen.”

  “Come on, Kathe,” my dad would say. “Leave the guy alone. He works like a dog!”

  I’d also bug Larry to go easy on the beer and cigarettes, because I knew his drinking and smoking would suppress his immune system. Again, my father would intervene. “Let him relax a little while longer and enjoy a drink and a smoke! Why are you always on his case?”

  My dad loved me dearly, and even though he didn’t know our secret, the two of us were now very close. He was just trying to get me to understand the guys’ point of view.

  But not being able to explain to anyone why I kept hassling my husband made me feel like an outsider in my own life. My parents and our friends thought I was a control freak and, frankly, a bitch at times. I was the only one who knew my husband was fighting for every T cell he could get. I knew how vulnerable he was to developing cancer. Yet there he was, smoking cancer-causing cigarettes. I resented Larry for this negative role I felt I was forced to play. It was yet another burden of keeping such a huge secret.

  Larry knew exactly why I was so exhausted and frightened. He knew why I was needling him about his health. But he didn’t make any effort to make it easier for me. When he hung out with my family and others, it was his chance to be in denial. He knew I wouldn’t bitch about his behavior quite as much in front of other people, so he took advantage of every moment.

  I wanted to scream, “Everybody cares about Larry, but nobody cares about me! What about my pressure, my job, and all the responsibilities I have with the kids? I’m trying to keep my husband alive as long as possible! I’m not sitting around smoking cigarettes and drinking beer! Where’s my escape?” The truth was that I simply didn’t have one—not from the reality that my husband was going to die a young man and not from the fact that I couldn’t tell my friends or family what I was going through.

  While I was feeling like an outsider with our family, I was also feeling like an outsider at work. I’d finished my degree at FIT and been recruited for an exciting position as the regional manager for a new watch company, where I was responsible for a substantial amount of company sales. I was finally building a career.

  The job was flexible, and I could make it home in time to give the kids dinner and attend their school games and events. But I was also required to travel quite a bit, which was a high price to pay. This meant I sometimes had to leave the kids with Larry, a man who drank a full six-pack most nights and would drive them around in his pickup truck with a beer in the cup holder. He’d gone from being a functioning drug addict to being a functioning alcoholic with HIV.

  Little Larry was old enough at this point to notice and was mortified by his father’s behavior. “You’re not supposed to drink and drive, Dad.” Slowly my eldest son was being robbed of his innocence, which wrenched my heart. He began to take on my role as his father’s watchdog when I wasn’t around, even though neither of the kids knew about their father’s illness or that he might backslide and start using drugs again.

  And I was sure Larry wanted to use. After all, he had a death sentence hanging over his head. I was even scared he might try to kill himself with drugs.

  When I was out of town, I’d call in the evening to check on Larry and the boys, and it was Little Larry who would fill me in. “I’m doing my homework, and Brian and Daddy are watching TV.”

  “Did Daddy heat up the dinner I left for you?” I’d ask.

  “Yeah, he did. Now they’re eating chocolate doughnuts, and Daddy’s drinking beer.” Since Larry needed to keep his weight up, he could eat anything he wanted, but that didn’t mean a little boy should eat chocolate doughnuts and snacks every evening.

  Every time I traveled, I wrote a specific schedule and to-do list for Larry to follow while I was gone, but the routine usually broke down after the first couple of nights I was away. I called the house “the bachelor pad” when they were left to fend for themselves.

  From Larry’s viewpoint, he wasn’t doing anything but relaxing with the kids and having a beer or two. It was bonding time for the three of them, and I felt torn. I knew they were making precious memories, but I couldn’t help but worry.

  Unfortunately, Little Larry was tasked with trying to maintain some of my rules and schedule. “Dad, it’s ten o’clock, and Brian should be in bed by now,” he’d point out to his father. I hated giving my son so much responsibility at such a young age, but we needed the health insurance and the income my job provided. And I needed to maintain my career so I’d be able to care for the boys when their dad was gone.

  Every time I had to leave town, I worried that Larry would be late to pick the kids up at day care or the after-school program, fall asleep with a cigarette burning, or—my worst nightmare—get high. Would his demons come out to play again? I did the best I could to cope, reassuring myself that the nightmare would be over soon and I could then begin to piece my life back together.

  I didn’t feel like I could ask anyone to help Larry watch the kids, either. How would I have explained that? They wouldn’t have understood why they were needed, and I couldn’t bear making up more stories and excuses. The lies were weighing on me more and more, as if they were piling up on my body, becoming heavier and heavier.

  To say I felt trapped in my circumstances is an understatement. I was in survival mode, operating on raw, gut instinct as I tried to keep the family together.

  Ironically, despite all of this madness at home, my bosses and co-workers thought of me as a rock star. I continued to be promoted. Yet I didn’t feel that I deserved the accolades I received. Who was I to be celebrated like that? I was a woman with a junkie husband dying of HIV.

  My co-workers were experienced and well-educated people. As they swapped stories about their college years, I’d think, I was virtually homeless at that time in my life. Our spouses were invited to join us at extravagant sales meetings on tropical islands, but I’d arrive alone, making up excuses for why my husband couldn’t join me. “My husband is so wonderful,” I told them. “He doesn’t mind taking care of the kids while I work.”

  Work conversations would include my co-workers’ future plans: “We’re going to have another kid,” or “We’re looking at larger houses.” They’d ask me about my kids and often wanted to connect outside of work and become friends. But I kept my homelife private, never mixing the two.

  It looked to me like everybody had a normal life but me. It took me right back to my childhood. I feared exposure and couldn’t take any chances with my career or income. I felt that I had gained entry through one of those coveted doors on my childhood street, and I wouldn’t do anything to risk my place inside. That meant the weight of the lies just kept piling on.

  Would my colleagues have shunned me if they’d known the reality of my life? Would they have reacted as I feared? Would I still have advanced in my career as I did? I have no way of knowing. All I knew was that most people still saw HIV and AIDS as a modern plague, and I didn’t feel I could take a chance on telling them, not when I knew I’d soon have to take care of the boys alone.

  One day, about seven years after Larry’s diagnosis, we ran into a friend unexpectedly. “Oh, my God, you look like you have AIDS,” she said to Larry. She wasn’t serious, but Larry’s health was finally beginning to fail. People could see that he’d grown way too thin and pale. They just didn’t know why. I was the only one who saw him struggle through his aches and pains to get out of bed every morning. Clearly, we wouldn’t be able to hide the truth much longer.

  Dr. Marton was finally forced to put Larry on about 20 different medications. After that, the combination of the illness and the side effects caused his hair to thin and his eyesight to diminish. As his immune system failed, he repeatedly came down with colds and coughs that everyone assume
d he was catching from the kids. He tried his best to hide his symptoms, putting on a brave face even at home so the boys wouldn’t worry. But he couldn’t hide any of it from me.

  Even though the boys were still young, it was also becoming more difficult to keep the secret from them. Little Larry was getting old enough to question why there were so many bottles of pills in the breadbox. I’d always try to distract him with made-up reasons like “Oh, Dad just got a little infection.” But my son wasn’t easy to fool. He was smart, and his dad’s thinning hair and weight loss were harder to explain.

  Before long, Larry couldn’t drink beer anymore without getting sick, and as his sight deteriorated, I worried that he’d have to stop driving and working. Cigarettes were his last remaining vice.

  He was officially ill, and the end was sneaking up on us. Somehow, though, he was able to keep going, climbing ladders and working on roofs. I think he continued out of sheer will, determined to go until he dropped, probably motivated by both guilt and love.

  While I admired my husband for getting up and working every day when he felt so weak, I was disturbed by his refusal to talk to me about how he was feeling physically and emotionally. There was no discussion, so I didn’t even have Larry to talk to about it all. As a result, I felt even more alone. It was just me and my secrets.

  Maybe because I knew Larry’s symptoms meant his diagnosis would probably come out before long, the burden of hiding and always covering my tracks was becoming unbearable. It was rare for someone with an HIV diagnosis to live as long as Larry did, and I’d never expected to have to protect him for so long. It kept our lives on hold in every way. I was happy my husband was still alive; the last thing I wanted was to lose him. But I was exhausted from making up stories about why he wasn’t feeling well. “Oh, he’s got the flu again.” “He drank too much last night.” “He ate something that didn’t agree with him.”

  Lying went against every moral principle I held dear. With my integrity long gone out the window, I started to feel like my whole life was an illusion. I even began to lose my grip on what was real and what wasn’t. I didn’t have HIV, but secrecy was its own kind of virus living inside me.

  CHAPTER 7

  THE FINAL BLOW

  In 1995, I just couldn’t bear keeping Larry’s diagnosis from everyone any longer. It was a pressure cooker inside of me.

  The first person I told was someone outside of the family. I had met my friend Debbie when Little Larry and her oldest son were in kindergarten together. We spent hours in the park talking while the boys played and soon became best friends. Not long after, her husband, Vince, became Larry’s best friend as well. We even spent weekends together. But our best friends still didn’t know about Larry’s illness.

  One day, I was sitting at Debbie’s kitchen table, complaining about Larry. She protested, “But Larry’s doing so great!”

  I knew if I told her the truth, it might put our friendship in jeopardy. Maybe she wouldn’t want to spend time with me anymore. But I couldn’t stand pretending with her for one more second. I trusted and loved Debbie. If I could tell anyone outside of the family, it would be her. So that day in her kitchen, I started crying.

  “What’s wrong?” Debbie asked.

  “I have to tell you something.”

  “What is it?” She could tell it was serious, but I’m sure what ran through her head in that moment was that Larry was having an affair or an alcohol problem, or that we were facing bankruptcy. The last thing you’d expect to hear from a heterosexual couple at that time was that someone had HIV.

  “I know you think Larry’s doing great, but he isn’t. He’s very sick.”

  Debbie looked at me with alarm and concern.

  “He’s had HIV for years, and he’s going to die. He got it when he was shooting drugs years ago.”

  “What? No! Kathe, no! It can’t be!”

  I couldn’t believe I’d actually said it out loud. I felt immense relief, as if I’d been sprung from a jail cell after years of incarceration, but I also felt tremendous guilt. I immediately wanted to take back every word. I’d betrayed my beloved. Who the hell was I to have done that?

  Thankfully, Debbie just listened as years of emotions came flooding out of me. I suddenly had license to express my worries, fears, and even my anger. I begged her to understand that my frustration and hurt didn’t negate my love for Larry.

  In a moment that neither one of us will ever forget, she said, “Let it out; let it go,” as she held me with such tenderness.

  I pleaded with her not to tell her husband, who was a cop, and I asked her not to ever let on to Larry that she knew. It was so important that he not feel like a freak around his friends. Of course, it was the same kind of secrecy that he’d perpetuated as a drug addict. Now Debbie was infected with the secret too.

  I’d been living and hiding within Larry’s story for so many years. When I told Debbie, it was the first moment I had allowed myself to step out of his story, if only for a short time. I broke my husband’s confidence, but I told Debbie for my own sanity. I did it for me. I didn’t know it at the time, but it was an act of self-preservation.

  Still, for weeks after I told her, I couldn’t shake the fear that she’d decide to stop being my friend. I worried that she’d tell Vince and they’d say, “We don’t want Larry in our house,” or “We don’t want our kids around you.” But none of that ever happened. Debbie truly loved me unconditionally, and that was a kind of love I’d never experienced in my life.

  In so much of my life, there had been triangle configurations. I’d ended up in the middle between my mother and father, my mother and brother, my father and brother, my mother and grandmother, or my father and my husband. With Debbie, there was no triangle. She saw me and loved me, and she also loved my husband and children. There was no conflict or opposition. It was just a beautiful, unbroken circle of love.

  When Debbie learned that no one else knew, not even my parents, she was blown away. She gave me the support, encouragement, and courage I needed to be able to tell them next.

  I started with my mother. But I didn’t tell her without a great deal of agonizing. I knew all too well that she might react as I feared, giving me that “You’ve made your bed, so go lie in it” line again.

  But she didn’t react that way at all. “Oh, my God, not Larry! You poor kids!” she said. “How have you lived with this for so long? Why didn’t you tell us?”

  When we told my dad, he was equally upset that I hadn’t told them sooner. They were devastated to think we’d all be losing Larry before long. They were both instantly supportive, which was such a gift for me. I truly needed help, because after so many years of carrying it all on my own shoulders, I was close to crumbling. They became more attentive, coming by to check in on us more often and babysitting the boys. Mostly, though, they just listened as I talked about my fears and pain. It was such a relief to talk about my feelings after keeping them bottled up for so long.

  Next, I asked Larry about telling his mother. “Larry, it isn’t fair to your mother to keep it from her any longer. What are you going to do, just have her show up all of a sudden when you’re on your deathbed? She’ll be blindsided. And I’m not going to be put in the position of having to tell her after you’re gone and trying to explain why you wanted to keep it from her. As a mom, I think it’s a selfish thing to do to her. If my kids did that to me, I’d be so hurt and wouldn’t want my memory of them to be tainted by that.”

  Finally, he agreed to tell her, but I knew it would be one of the hardest things he’d ever done. He loved his mother and hated the thought of hurting her. Before he had a chance, though, something happened.

  Even though Larry’s T-cell count was still high enough that he hadn’t developed AIDS, Dr. Marton discovered that Larry was riddled with lymphoma, a type of cancer that attacks the lymph nodes. “I never expected it could spread so quickly,” he told us. A tumor in Larry’s spleen had already been found, but because it was benign, Dr. Marto
n had decided to leave it alone until it was absolutely necessary to deal with it.

  Meanwhile, he sent us to Memorial Sloan Kettering Cancer Center, where Larry saw a top oncologist. “There’s nothing we can do,” the doctor told us. “The cancer has already spread so much that lymph node surgery just isn’t a viable option, and Larry’s body is much too weak for chemotherapy or radiation.”

  We’d known this day would come, but that didn’t make it any less devastating. Reality was staring us right in the face. Larry began to cry. He could no longer deny that he was going to die. There was no turning back, no more hope, no more miracles. “Let’s just make it through Christmas,” we said to each other.

  Within a few weeks of receiving the lymphoma diagnosis, Larry’s spleen tumor caused him so much pain that we had to rush him to the emergency room. It was Halloween of 1995, nearly eight years since his diagnosis, and miraculously, it became the first time he was hospitalized in all that time.

  Halloween was always a big event at our house. The boys were dressed up in their costumes, ready for trick- or-treating, when we took their dad to the hospital. Little Larry, who was 11 years old, was afraid to go to the hospital. It was too frightening for him, so I didn’t push him. Instead, he stayed home and went trick-or-treating with Debbie and her children.

  Six-year-old Brian, on the other hand, wanted to see his dad. Still in his costume, he crawled right into the hospital bed.

  That’s when I called Larry’s mother and stepfather in Florida. I told them only that he had a tumor in his spleen, and I asked them to fly to New Jersey. When they arrived at the hospital, I said, “Larry needs to speak to his mother.”

  His stepfather didn’t understand. “What do you mean? I flew all the way here from Florida, and I can’t see him?”

  “Look, he just needs a little time with his mother first, okay?” Larry then told her the truth about his HIV status. She was overcome, of course, but she handled it well, perhaps better than I would have in her shoes. Neither she nor Larry’s stepfather were angry that he’d kept it from them for so long. With three children who had become drug addicts, Larry’s mom had often gone into denial to cope, which I thoroughly understood.