Poetry is art.
Is an essay art?
I asked my husband if I have his permission to write about him and his illness in prose.
He said, Just make sure you give me a really big penis.
He also asked that I change his name to Ron Jeremy, so that he may have some autonomy—some distance—from this essay.
Ron Jeremy felt like family from the first time we met. I was a suburban Jew, and he was an Italian American from a Catholic family—raised in Queens—but I immediately sensed in him an essential simpatico that made him seem Jewish (in the same ways that I felt Jewish) or more Jewish (in the ways that seemed important) than any Jewish boy I’d been with. He was warmer, funnier, more neurotic and verbose than any of them. He had read more books than all of them combined. He called himself a custodian of words. He was menschy.
The first thing I ever said to Ron Jeremy was, Shut up this is my game. I was day-drunk, as I always was then, leading a drinking game at my weekly East Village party. The party was called Drinkers with Writing Problems. Ron Jeremy had come with a friend of a friend to meet girls. He met me.
Ron Jeremy says that he took one look at me and knew I was the sexually liberated Jewish girl of his dreams. Twenty minutes after we met, we made out in a photo booth. But before I kissed him, I told him he had to take me on a real date the next day.
The following afternoon we went to the Second Avenue Deli. It was still on Second Avenue then, and not yet a bank. Ron Jeremy got matzoh ball soup, which I told him was kind of goyish. I got gefilte fish.
Afterward, we sat on a bench with the pigeons pooping around us and kissed. I felt safe with him, also excited. He had impeccable taste in music and books, and a lot of integrity when it came to bullshit. He didn’t wear a hipster costume, as he called it. Also, he was ten years older than me. For a man and woman, this put us at the same maturity level.
Ron Jeremy told me that he would be going to Paris for ten days. He asked if I would go to a concert with him when he returned. The joke between us now is that at the time he was putting the “pussy on lockdown.” We emailed every day he was away.
When Ron Jeremy got back he brought me a framed photo of a grave he’d found at Père Lachaise Cemetery that had my last name on it. We went out and got drunk, then went back to his apartment, which was in Stuyvesant Town—a sort of middle-class housing project in the East Village. I was scared walking in. Stuyvesant Town had an Auschwitz aesthetic, and all of the redbrick buildings looked the same. I was like, How do I get out of here if I need to? He showed me the escape route on Avenue B and I felt safer. Also, I liked his apartment immediately. It had a retro seventies vibe, everything brown and velvet. It reminded me of my favorite grandmom’s apartment.
There has always been a mother-daughter relationship between Ron Jeremy and me. If we knew each other in a past life, he was definitely my grandmother or mother. I have no daddy issues to speak of. If anything, our ten-year age difference reflects only my mommy issues.
Ron Jeremy and I fooled around that night in his brown bed. We didn’t fuck. I don’t remember exactly what we did sexually. But I remember all the freckles on his back. I remember being able to sleep easily next to him. I also remember eating bagels with him in the apartment the next morning. That’s how it was with us. We were bagels, before we were hot sex.
The first time I saw Ron Jeremy get sick was a year into the relationship, just before a trip we took to New Orleans. He had a high fever and mono symptoms: sweating, swollen glands, extreme exhaustion and weakness, seasickness, an inability to regulate his body temperature. He faked enough health to take the trip. In New Orleans, I didn’t even realize he was still sick. He hid it from me in muffaletta sandwiches and strawberry daiquiris. Only later did it hit me that he didn’t want to ruin what was still a fairly new relationship.
The illness had been a catalyst in the destruction of a prior relationship. When Ron Jeremy was with Nina, his last girlfriend, a strange fever had come upon him and left him bedridden for months. The stress of an ongoing illness—the depression, repetition, and paralysis of it—can be too much for some people. It was for Nina.
At that time, Ron Jeremy was tested for every disease—HIV, cancer, hepatitis, diabetes, lupus, MS—but doctors could not find anything. The only thing they found, in months of testing, was slightly elevated liver enzymes. He called it his mystery liver ailment. Then the illness went away and he didn’t think about it again. Then he met me.
The winter after our New Orleans trip, Ron Jeremy got sick again. This time he stayed sick. He was housebound, bedridden mostly, for three months.
I tried to cure him with soup. I made him chicken soup, harkening back to my Jewish ancestors. I was a shitty nurse, but the soup was real. There were bones in it, and dill. It did nothing for him.
He was scared. I had no idea what to do. I do not come from nurturers. In my family, you got up and went to school unless you were vomiting or had a fever. Ron Jeremy’s fever waxed and waned. At least it was tangible. His other symptoms—the weakness that rendered him unable to walk from the bed into the living room, the brain fog he described—were so nebulous to me. He couldn’t even read.
Then, one day in spring, after months in his pajamas, Ron Jeremy got better. We pretended he would never be sick again. We went to Coney Island and roller coastered. We ate sushi outside the walls of the apartment. We saw PJ Harvey at the Knitting Factory. We walked in Tompkins Square Park and went to parties. Then, he got sick again.
This is a pattern that would repeat over and over. In the years that followed, Ron Jeremy would be healthy for long stretches—sometimes for nine months at a time. During those periods we ignored the mystery illness. We buried it. On the chatboards we frequented, there were people desperate to figure out what was wrong with them. But when Ron Jeremy was well we left those people behind. The illness would become a shadow from the past. If you touched it, or got too close, it could get on you. So we stayed away.
Then, inevitably, Ron Jeremy would get sick again. He would “fall in the hole,” as he called it. Bedridden. And every time he became bedridden, he stayed there for months. It would take him ninety days to get from bedridden to mobile again.
When he was sick, it felt like he would never be well again. I would float between two realms: the outside world of mobility and sunlight, and the apartment world of darkness, heavy air, fear, and desperation.
I grew up thinking that doctors could fix anything. Like, there had to be a diagnosis and there had to be a cure. When Ron Jeremy was sick, we saw doctors. But he got tested and retested and came up negative for everything. We were ready to buy whatever theory was sold to us. But there weren’t any.
This is my one and only life, said Ron Jeremy. What is happening?
Then, we went to a new immunologist who ran different types of blood tests. She told us that the elevated liver enzymes were a symptom, not a cause. She diagnosed him with CFIDS/ME: umbrella terms for people with various types of chronic neuroimmune diseases. In Ron Jeremy’s case, she was able to trace his illness to a heavy viral load and his overactive detector cells. Also, most important, he suffered from an extreme deficit of killer cells. His body did not fight infection like normal people. His immune system was broken.
As I understand it, the human immune system has three types of cells. There are detector cells, which suss out illness. There are messenger cells, which send a message that the body has been invaded with illness. And there are killer cells, which receive the message and fight off the illness. In patients with HIV, it is the messenger cells that are broken. Ron Jeremy’s messenger cells were fine. But his detector cells were paranoid, neurotic, obsessing about everything: traces of old illnesses, old colds. They were neurotic Jewish mothers. But when the neurotic Jewish mothers attempted to relay their barrage of messages, there was no one to relay them to. The killer cells weren’t there, and the ones that were didn’t do any killing.
Maybe Ron Jeremy’s killer ce
lls were tired of being nagged and so they left. Or maybe Ron Jeremy’s neurotic Jewish mother cells only nagged so much because they felt they were shouting into the void. They were talking to themselves.
The immunologist was named Sue. Sue had been dealing with various types of chronic neuroimmune diseases since the eighties: chronic Lyme, Epstein-Barr. She told me that I was not at risk of contracting his disease—that it was not sexually transmitted. She also said that no one had found a cure yet.
Sue was willing to try a vast array of treatments—some of which had shown some effect on patients she had seen, and some of which we found on chatboards. We called her Sue the pooh-pooher, because she never got too excited about one treatment. Later, we learned to appreciate Sue’s skepticism.
If you tell a desperate person with an incurable illness that you can cure him, he will believe you. Sue never promised to cure Ron Jeremy, but others did. Some doctors were well-intentioned, just very far out there. Others oversold their own treatments, made grandiose promises, and loved the sounds of their own voices.
In the years we’ve been together, Ron Jeremy has spent thousands of dollars on treatments. He has tried everything from the most toxic Western drugs to traditional Eastern medicine to the most woo-woo hippie treatments. There was amoxicillin, Valcyte, Valtrex, Nexavir, and Provigil. I’ve injected him with human growth hormone, vitamin B12, and Gc-MAF: a protein-derived macrophage.
Though he does not have HIV, he has done a course of two HIV drugs—Viread and Isentress—simultaneously. The hypothesis with these drugs was that if one part of his immune system was compromised, perhaps the drugs that treated an alternate part of his immune system would have some effect. There was no effect.
He has done testosterone patches and prednisone, green tea extract, St. John’s wort, fish oil, iron supplements, and ginseng.
There was a heavy course of Chinese medicine with Dr. Lu: acupuncture three times a week for six months and multiple herbs.
There was the salmon and salad diet care of Dr. H, the Paleo diet via Dr. J, gluten-free, dairy-free, sugar-free, and every other elimination diet.
There were blood protein infusions via Dr. E.
There was a vitamin drip, coenzyme Q-10, probiotics, some mushroom pill.
There was a coffee enema, wherein Ron Jeremy lay spread eagle on our bathroom floor with his ass in the air and I shot a pot of coffee into his asshole via an enema bag and a tube.
Ron Jeremy has engaged in mindfulness, meditation, and mindfulness meditation.
He has seen psychologists and psychiatrists, tried Effexor and Lexapro.
We moved from Manhattan to Brooklyn.
There was helminthic therapy—worm therapy—wherein we grew worms in his friend’s feces in a Tupperware container in our bathroom. We applied them to Ron Jeremy’s skin like a salve. He might have had a minor psychedelic experience, but no improvement in health.
The year 2008 was particularly bad. Ron Jeremy was housebound for seven months straight and we were engaged to be married. The day we went to pick up the ring from an antiques jeweler in Midtown, he met me there in a cab: sweating, shaking, and feverish.
It is not an easy decision to marry a person with a disease like this no matter how much you love him. I had always shielded my parents from the true severity of Ron Jeremy’s illness. I remember shopping for a wedding dress with my mom and thinking I just can’t do this. I remember crying quietly in the dressing room until she asked to be let in.
This was when I finally conveyed to her the seriousness of Ron Jeremy’s condition. Both of my parents encouraged me to reconsider my decision. They had always liked Ron Jeremy, but what kind of life was I signing on for? They were scared. Did I know what I was getting myself into? I did and I didn’t.
I also had other adults in my life, one mentor in particular, who encouraged me not to make a decision based on fear. Ultimately, I chose to marry Ron Jeremy because, I reasoned, I would rather be with Ron Jeremy sick than another man healthy.
Does anyone really know who they are marrying? People change. We do not know if the person we commit to will be the same person in ten years. We do not know who he or she will become. Will you be the same person in ten years: in health, body, money, interests, mental health?
Ron Jeremy and I did not know at the time that his illness was progressive. We considered him an anomaly, lucky even, as some people with this disease are bedridden year-round. But over the years we have been married, Ron Jeremy’s relapses have become more and more frequent, to the point that he is never not sick. Those windows of health are gone. His lows are no longer so low that he cannot make it from the bed into the kitchen (or maybe he is just more used to coping). But now, even at his best, he cannot walk more than a few blocks without stopping and resting. He looks for benches and walls. He plots routes. Now instead of sick and well he floats between sick and sicker.
The saddest part of the illness for me to watch is the brain fog that gets in the way of Ron Jeremy doing the things he loves: reading great works of fiction and writing. He reads some, but not with the voraciousness he once enjoyed. He doesn’t really write.
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 wa
nt 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.
So Sad Today Page 11