So Sad Today (12 page)

Had I known that his illness would only continue to get worse, I am not sure if my decision would have been different. At the time we got married, I didn’t know how much the illness would impact my life. I didn’t know that we would move four thousand miles across the country to Los Angeles, where the climate is easier on a sick person. I didn’t know how many events I would attend alone, unpartnered.

I didn’t know how long a haul the illness would be, how monotonous and seemingly hopeless sometimes. I didn’t know that the illness would be another body in the marriage—always present, even when we are not together. When I am out with friends, living my life, as Ron Jeremy has always encouraged me to do, the illness speaks to me and says I should be home. But sometimes I do not want to go home, because the illness—and its resulting depression—fill all the rooms of my home. Even when Ron Jeremy isn’t depressed, the illness itself is a palpable depression.

In the months leading up to our wedding, Ron Jeremy started a course of hydrocortisone. It is the only thing that has ever really worked. And while hydrocortisone is more of a bandage, and not meant to be a long-term treatment, in the fall of 2008 and for much of 2009 he lived like a healthy person. We traveled to Spain. We traveled to Rome. I remember skipping toward him in a medieval courtyard in Barcelona like,
Look! We are still children!
Once again, we pretended that the illness no longer existed. Then the hydrocortisone stopped working. He has not been healthy since.

Living with a sick person puts me in touch with some of my greatest fears. One of those fears is being still with myself. Like, I am scared to be still for Ron Jeremy—to be present for him at his most paralyzed—because it forces me to be still with myself. Another one of my fears is boredom, hopelessness, the feeling that I am dead while I am alive. The thing about chronic illness is that it’s so fucking boring. The sick person gets depressed and you get depressed. If you’re lucky, you share a dark sense of humor.

In Ron Jeremy’s and my case, that means we joke about suicide. We call it the miracle of suicide. When Ron Jeremy feels suicidal, as anyone in his position might, I tell him that there can only be one suicidal person in the family. And sorry, it’s me.

Ron Jeremy describes the experience of his illness
as shameful. I’m always perplexed as to why he would feel shame, as the illness is not something he brought on himself. It is not his fault. But the thing is, I feel ashamed too. Sometimes I feel like having a sick husband is a measure of my worth. Like, of course I would get the husband who is sick. Of course I am not good enough to have married a healthy person.

Sometimes, when I see my friends’ boyfriends or husbands, I am amazed at what they can do. They can carry babies. They can make plans and not cancel them. But I don’t want any of those men. I still want Ron Jeremy.

The nebulous nature of this particular illness can be shameful too. People want to get their minds around it. The fact that it’s not a “brand-name” illness, something easily defined, means I have to answer all kinds of weird questions.

Like, with other diseases, you don’t have to explain the disease. People just go, “I’m so sorry.” They get it immediately. But instead, we get well-meaning people thinking they are doctors.
Has he tried acupuncture? I’m tired all the time too, I wonder if I have it. It might be celiac. It might be candida. Does he drink green juice? Are you sure it isn’t just depression? I heard this thing on NPR. I heard this thing on PBS.

If Ron Jeremy had cancer, people probably wouldn’t tell me that a gluten-free diet is the cure. Sometimes, I wonder if people even believe his illness is real.
Sometimes, because of his absence in so many of my activities, I wonder if they think my husband is imaginary.

It sounds fucked up, but I get jealous of people whose partners have brand-name illnesses. There is no rubber bracelet for Ron Jeremy’s illness (not that I would wear one, because that shit is ugly). There are no walkathons. No fund-raisers. Ron Jeremy, himself, has said that he feels he would be better off with HIV. At least there are treatments that work.

I don’t want to be defined by Ron Jeremy’s illness. I don’t want people to ask me how he is doing when I see them. I pretend to people, especially to myself, that this isn’t hard. I don’t want pity. I want to be happy and have a good life. I don’t want to be sad. Or, I want to be sad about the things that I choose to be sad about. But I guess that is not how life works.

Sometimes I feel full of despair and cannot figure out why. Like I forget to equate the two things: the illness and the sadness. Then I wonder why I am sad. Then I get scared that my sadness is a free-floating sadness that will never go away. Sometimes I feel doomed.

I think I live with an awareness of illness that extends beyond what most married people my age have had to deal with. The illness puts me in touch daily with mortality and reality and darkness. I think about death a lot. I think about how Ron Jeremy will someday be dead and so is, in a way, already dead. I think about my
own fragility and that I, too, will someday be dead. In universe time, I am already dead.

I want to hide from the monotony and darkness of the illness in the levity of something else: something frivolous, something young. I want to feel young, because the illness exacerbates the ten-year age difference between Ron Jeremy and me. I want to feel young, because the illness reminds me that time is passing for me too. I am vain. I’m scared of aging.

When we had been together for five years, just before we got married, Ron Jeremy and I decided to experiment with nonmonogamy. This wasn’t a direct result of the illness, though I think it played a role. When you’re sick all the time, you want to seize the moments when you are well and squeeze all the juice out of them you can. When your partner is sick, you want frivolous joy.

Ron Jeremy was going to Rio for a friend’s bachelor party. He told me that there were brothels there, brothels that functioned like clubs. I sort of encouraged him to go. I was like,
I really don’t think I would mind if you had that experience
. Like, I really felt I would be okay with it. And it turned out I was.

But I had a question for him. If Ron Jeremy got to go to Rio, and have the full Rio, then what did I get?

From there we opened our relationship. We weren’t swingers. Not at all. We would have our experiences
independently. Also, there were rules. And the rules were different for both of us.

The rules for Ron Jeremy were that he had to approve with me any possibility of sex before it happened. In the case of Rio, we called it POPC: possibility of paid companionship. Also, he had to tell me all the details after. This gave me a feeling of control. My biggest fear was to be the wife in the dark. I preferred to be the wingman, the locker-room buddy (or in our case, the kitchen buddy).

Another rule was that any sex for him was to be relegated to out-of-state experiences. I made one exception, once, for a very special New York experience. With this experience, I gave him special dispensation to go in-state. But I limited the terms by giving him just two chances with which to seal the deal. I didn’t want him dating her. I told him that after these two chances were up, regardless of whether he sealed the deal, it would have to be over. He sealed the deal.

The rules for me were different. I was free to do whatever I wanted with whomever I wanted (aside from, like, a mutual friend) wherever I wanted (aside from, like, our apartment). But Ron Jeremy didn’t want to know about any of it. I could live my life as I so chose and have sex with whomever I chose. But I was to keep my big mouth shut. No going to Ron Jeremy for boy advice (it’s hard
not to do this when boys are so elusive, and your husband is a man who might have some answers). No leaving dick pics on the shared computer (oops). I had to keep it to myself.

Finally, the rules for both of us were that we always practice safe sex and always protect our love. We didn’t elaborate on this last rule, the protecting of the love. But what I think it meant was:
Don’t fall in love with anyone else. Don’t leave me.

The first two years that I was able, or “allowed” to be nonmonogamous, I didn’t act on it. I didn’t think I could handle it emotionally. I have the brain of an addict and the heart of a sixteen-year-old girl. I remembered what I was like in my early twenties, before I’d met Ron Jeremy: attachy, pining, crushy. I felt like I wouldn’t be capable of staying unattached. I would catch feels.

But after we got married, I didn’t care whether I could handle it. The day after my wedding, I felt depressed. I wasn’t depressed to have married Ron Jeremy. But I was depressed to be a wife. I kept having this thought that everything was over.

I don’t watch romantic comedies. I didn’t have the illusion that marriage means a happy ending. I knew that marriage wasn’t the end of the movie. It had never really been my dream ending. But that was just it. Marriage had never really been my dream. I was not disappointed so much as confused. What did it mean to be a
wife
? The word sounded gross to me, so old and finite. I didn’t want it. And so I began.

Most of the time it went like this: I would be approached by a younger man, or approach a younger man (I liked the younger ones—I already had an older one). I would let him know that I was available or interested. In my approach, I was able to be less than subtle, because having a husband gave me confidence in the face of potential rejection. If I were to be rejected immediately, I wouldn’t feel like I was being rejected by all men. I had a net. Also, men really like sex. I don’t think I was ever rejected.

But a problem occurred a little further in. If the sex was bad, or if I wasn’t attracted to the person, I would be grossed out, kind of sad, like why am I even doing this? But if the sex was good, if the person was hot, intelligent enough for me to elevate their characteristics in my own head to talent and brilliance, then I wasn’t able to just fuck and move on. I did catch feels.

There was Hunter, who was the first boy outside my marriage. Hunter taught me not to include my head in the photo when I sent nudes. That was very nice of him. I met Hunter at a holiday party. I thought he was gay, because he worked for Barneys and talked about how big his dick was. But then he said he was great at eating pussy. I was like,
Hi
.

Over the course of a month, Hunter and I made out
on the street and fucked each other twice in his apartment. He had a big, crooked dick. Also, as foreshadowed, he was great at eating pussy, but I wasn’t relaxed enough to come.

I obsessed about Hunter, waited for texts from him, writing a narrative in my head that he was a genius art boy (sometimes he made weird videos from his roof), when in fact he was more of an IT person with a penchant for colorful hair dye. One night I invited him to hang out and he said sorry, but he was playing video games by himself. I knew then that this was not safe for me emotionally.

Then there was Paul from creative writing class, another boy who at first I thought was gay. On the subway platform one night, I asked Paul if he had a boyfriend. Heterosexual, Paul was appalled. The next day he began doggedly pursuing me, posting on my Facebook wall the words
I’ll show you hetero
. We made out in the street (I like boys who seem gay and making out in the street). He never tried to fuck me though.

Paul and I texted on and off for months. He was a disappearer. In his disappearances, I obsessed. When I confronted him about his vanishing, he said he couldn’t get involved with a married woman. I don’t know whether he actually was gay or was a boringly conservative straight person or just had good morals, but it wasn’t going to work.

Then there was Brandon, the motorcycle boy from Long Island, who I met on cougarlife.com. I went on Cougarlife because, while I was only thirty, I think the illness made me feel older. Brandon and I rode around on his motorcycle. We also fucked in his van. I fantasized that I would move out to Long Island and tend the house, while he worked at his auto repair shop. I don’t think that’s what Brandon was looking for.

There was Adam, who was cute, but into Bukowski, so no.

There was Tom, who lost his virginity to me. He basically broke my vagina, but I left him with some tips on how to be gentler with the next woman.

There was Nathan, who I really liked, even though he couldn’t get it up. Nathan never got a full erection yet somehow came in about fifteen seconds.

There was Matthew, who I made out with in the street to get over Nathan. Then I fell for Matthew.

There was Ben, a gorgeous twink who is actually gay. We would kiss for hours and talk about existentialism and the boy he liked in California.

In all of this, I felt like a teen—flitting between excitement and heartbreak, compulsive analysis and gameplaying. What I wanted was both my husband as well as a harem of boys who were totally devoted to me, at my beck and call at all times. That isn’t really fair. Actually, it’s totally fair to want it. You can want
whatever you want. But the types of boys who are going to go for a woman with a husband are probably not going to be at your beck and call.

None of these experiences seemed to jeopardize my marriage in any way. If anything, they made my marriage hotter.

There is something about a long-term relationship that takes away the ability to see the other person. We stop seeing them as their own entity. We stop seeing them as a possibility, rather than a possession. Or we stop seeing the possibility of them not being there. The gap we have to cross to get to them is no longer there: the gap filled with doubt as to whether we are loved or whether he will text or whether he likes me. We stop fucking in that gap, or fucking from across that gap. We start fucking in some new shared space that we feel we own. Or maybe the shared space is still the gap but we fuck there for so long we stop seeing it.

But with an open marriage, I was consistently reminded that having sex with my husband, having a husband, was a choice. As these men were separate from me, so too was my husband. I saw them each with new eyes and was reminded that I could see my husband, each time, with new eyes.