1 Samudal

Essays Spouse With Depression

Many people suffer from depression at one point in their life. It is inevitable, the feeling of hopelessness, sorrow, or being alone. These are all common emotions associated with depression. For a select few, depression can be hard to overcome, and this is where depression becomes a disorder that requires active treatment. Those 'selected few' account for over 100 million people worldwide and result in 75% of all psychiatric hospitalizations (Gotlib & Hammen, 1992). Yet the question remains, why did these people become depressed? How did they become depressed? One of the answers that lead to the cause of depression would be a person's interpersonal relationship with their surroundings and the people around them. There are many interpersonal instances that can have the ability to lead to the onset of depression, such as the family environment, the socialization setting, and the discrimination against gender in certain cultures and instances.

Family

One could argue that out of all the interpersonal cases that can contribute on the onset of a depressive disorder, the ambiance of a family has the most weight and impact on a depressed individual. In the case of spouses, the well being of one spouse will have a notable impact on the other spouse and on the welfare of their marriage. For example, in 30% of all marriage problems, there is one spouse that can be described as clinically depressed. The reason why a spouse might have a unipolar mood disorder could be due to their relationship being "characterized by friction, hostility, and a lack of affection" (Gotlib & Hammen, 1992).

Martial distress can also be caused by the impact of having a child. When a woman is pregnant, she can experience a whole range of emotions due to the changing of interpersonal relationship with husband and the building of a new relationship with the unborn child. For example, the building of a new interpersonal relationship with the child can be very tasking and become a major stressful life event that can cause a mood disorder to develop (O'Hara, Lewis, Schlechte, & Varner, 1991).

Aside from the martial distresses of spouses, the impact of depressed parents can have an effect on their children as well. In a study on the relation between depressed adolescences and depressed mothers (Hammen & Brennan, 2001), they found that the depressed children of depressed mothers had more negative interpersonal behavior as compared with depressed children of non-depressed mothers. This is reinforced when a study (Chen & Rubin, 1995) shows that the parents of depressed children are less warm and caring and more hostile than parents of non-depressed children. Because of this negative interpersonal relation between kids and their parents, children can develop a negative view of their family. This negative view can lead to the feeling of lack of control and having a high risk of conflict, rejection, and low self-esteem (Asarnow, Carlson, & Guthrie, 1987).

Cummings (1995) stated that any changes in a family environment due to parental depression increase the risk of developing a mood disorder in children. The result of this can be found as early as preschoolers and infants, due to the insecure attachment they develop with their parents. The emotional distress of children can also have an effect on their parents, causing depression that in turn will also affect the children, theoretically creating a never-ending cycle unless they seek treatment. Sometimes It is not the depressed parents that lead to the onset of depression in their children, but rather it is the change in the family environment that stems from the parents' depression that causes the children to become depressed. Some studies suggest that martial troubles are a better predicator for the onset of depression than the depression of the parents or the children themselves (Cummings, 1995).

Experiencing depression while as a child or an adolescent can also lead to reoccurring slips as an adult. Depressed persons often perform poorly in marriage and relationship with family members and they also might respond negatively to others, which have the ability to create stressful life events, which as a result might drive the person further into depression. Depressed people are dependant on other people and constantly seek reassurance in such a way that drives people away. Hammen and Brennan (2001) found that 13% of the sons and 23.6 % of the daughters who were depressed had depressed mothers as compared to 3.9% of the sons and 15.9% of the daughters who were depressed lacked a depressed mother.

Many people believe that children and parents suffer differently from depression, but not so. Depressed children can be like depressed parents, expressing sadness, anger, shame, and self-directed hostility (Brown & Siegel, 1988). Just like adults, depressed children tend to blame themselves for bad events and accredit the environment for good events--they do not give themselves credit when due (Blumberg & Izard, 1985). This is why oftentimes, children will feel guilty if their parents get divorced and they believe that they were at fault but realistically, it was the parents' martial distress that was the cause of the divorce, not the children's depressive mood disorder.

Socialization

As in the family environment, socialization is key to maintaining healthy relationship and feeling well deserved and part of someone's life. Depression can have an adverse effect on the social capacity of depressed persons, affecting their social functioning and ability to react and deal with stressful situations. Gotlib and Hammen (1992) discussed the social functioning of people with depressive disorders and found that people with the symptoms of depression are found to test low in social activities, close relationships, quality close relationships, family actives, and network contact, yet they test high in family arguments.

One major part in the development of mood disorders in a social setting would be how well one could deal with stressful events. Normally, this is called coping strategies and it allows a person to manage their troubles and not be overwhelmed. Oftentimes, people can become depressed when unable to deal with "drama" from their friends-especially in children. Depressed children reported significantly higher level of hopelessness, lower general self-esteem, and lower coping skills than non-depressed children. Their ability to be unable to cope with stress can lead to fewer and less adaptive coping techniques (Asarnow, Carlson, & Guthrie, 1987).

Social settings can also include one-on-one interactions and the rejection that occurs. In a study performed by Joiner, Alfano, and Metalsky (1992), they tested whether a depressed individual would have an affect on other people in one-on-one interactions and they found that affected people did have such an influence on other people. This influence could be described as responding negatively to their constant searching of reassurance and rejecting them, which in turn will "confirm" the affected person's belief that he or she is unworthy as a person.

A depressed individual can impact their social settings by exhibiting a lack of self-esteem, becoming more sensitive to the opinions of others, and more importantly (and interestly), become less physically active (Lewinsohn, Gotlib, & Seeley, 1997). This means that they will not want to go out, that they do not want to exert themselves. A prime example of this would be an athletic in school that becomes depressed. He does not want to participate in athletic activities because he is depressed, but his coach forces him to. As a result, he performs poorly, and his teammates heckle him for his poor performance. As an affected person, the athletic becomes overly sensitive to his teammates' heckling and his self-esteem plummets and he drops out of sports and begins to withdraw and fight with everybody he knows.

The social class can also have a subtle effect on depression. Brown and Harris (1978) reported that the females with children in the working class were more prone to depression than females with children in the middle class. This can be attributed to the working class mother having to leave home to work, having to leave her child alone. This interpersonal relation can cause excessive worry and guilt that the women is not being a good mother as compared to the middle class mom, who can afford to stay at home and take care of the children/her family.

Okazaki (1997) found that Asian Americans are more depressed in a social and academic setting because they have to face more pressure than their white American peers due to the fact that they are part of a visible minority that has different culture values than others. This interpersonal relationship between the two "cultures" can be defined as competitive and stressful due to the fact that in America, white people "have it made" while as other ethnic groups have to work twice as hard to get their foot in the door. This extreme indicator of stress can lead to the dejection of many ethnic groups because they might have failed at succeeding in a competitive environment.

Gender

There are a lot of interpersonal relations when it comes to gender, such as the discrimination against gender in an academic setting. This is very prominent in females, where girls can face increased expectations to conform to the standards set forth by society, to pursue feminine type activities and occupations. It appears that parents tend to have "lower expectations" for girls when it comes to school. As a result of that lowered expectations, parents tend to not push their daughters toward a high-profile job, instead attempting to make their daughter conform to the stereotype of society, like become a teacher or a nurse. In fact, in 1986-1987, women only garnered 15% of the bachelor's degrees awarded in engineering as compared to 76% and 84% for education and nursing, respectively (Nolen-Hoeksema, & Girgus, 1994). Breaking the social norm can also lead to depression (Nolen-Hoeksema, 1991); the more intelligent a girl is, the more likely she is to become depressed. This positive correlation could be attributed to the more intelligent girls being able to out-perform the boys yet get punished for doing so.Being depressed as a female adolescent can have consequences in the long run in terms of social functioning, career, and enjoyment of life. Theoretically, if one were to be depressed in high school, then their grades would suffer. If their grades were to suffer, then their chances of entering a good college would dwindle. If they cannot enter a top-notch college, then they might not be able to get the career they want, and with that they would not be able to enjoy their job and feel like they have missed out on life.

The different experiences of each gender can also be the cause of a mood disorder. The experience can vary by the age of the children, adolescences, or adults. For example, after the age of 15, females are twice as likely to become depressed as compared with men and in another study of 11-year olds, only 2.5% males met the criteria for major depression while only 0.5% females met the criteria, however in a study of 14-16 year olds, 13% of the females met the criteria while 3% of the boys did (Nolen-Hoeksema, & Girgus, 1994). This abrupt rise of depressive disorders in females during the mid-to-late adolescence years can be attributed to the more concerns a girl has as compared to boys. These concerns and worries can range from their achievements or lack of, body dissatisfaction, sexual abuse, and low self-esteem (Lewinsohn, Gotlib, & Seeley, 1997).

This is reinforced when another study found that between the ages of 15-18, the prevalence of depression in girls will increase to twice the prevalence of boys (20.69 to 9.58) but will taper off during 18-21 years of age for both genders (15.05 and 6.58) (Hankin, Abramson, Moffitt, Silva, Mcgee, & Angell, 1998).

Do not be mistaken that females are the only gender that that can become depressed; a good number of males can develop a unipolar mood disorder. In the average lifetime, 49% of all males will experience a depressive episode (as compared with 63% of all females). Males will become sad and dejected for different reasons, such as intimate relationships. When an intimate relationship ends, males are more likely to become depressed at the loss than females (Hankin et al., 1998). This could be attributed to the male's primal desire to have a mate so he will be able to continue his family name.

Depression has been around for a long time, spanning over thousands of years, dating back to the time of Saul I (Eaton, 2001), yet even though Depression is a disorder that is hard to understand. Even with all the studies conducted, there is still not much to regarding the causes of depression. There are so many ways one would be able to become depressed, but the most common and most prevalent way thus far would be the interpersonal relationships of a person and their family, social lives, and the relationship between their gender and the discrimination they suffer at the hands of others. Perhaps a better understanding of those relationships can open up new avenues where new options for treatment can be conceived and new ways of interacting to people to create a equality amongst people where they will not feel depressed.

References

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Brown, G. W., & Harris, T. (1978). Social origins of depression: A study of psychiatric disorder in women. New York: Free Press.

Brown, J. D., & Siegel, J. M. (1988). Attribution for negative life events and depression: The role of perceived control. Journal of Personality and Social Psychology, 54, 316-322.

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Chen, X., Rubin, K. H., & Li, B. (1995). Depressed moods in Chinese children: Relations with school performance and family environment. Journal of Consulting and Clinical Psychology, 63, 938-947.

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Cumming, M. E. (1995). Security, emotionality, and parental depression: A commentary. Developmental Psychology, 31, 425-427.

DeMoss, K., Milich, R., & DeMers, S.(1999). Gender, creativity, depression, and attributional style in adolescents with high academic ability. Journal of Abnormal Child Psychology, 21, 455-467.

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Gable, S. L., & Nezlek, J. B. (1998). Level and instability of day-to-day psychological well-being and risk for depression. Journal of Personality and Social Psychology, 74, 129-138.

Gotlib, I. H., & Hammen, C. L. (1992). Psychological aspects of depression: Toward a cognitive-interpersonal integration. New York: Wiley.

Hammen, C., & Brennan, P. A. (2001). Depressed adolescents of depressed and nondepressed mothers: Tests of an interpersonal impairment hypothesis. Journal of Consulting and Clinical Psychology, 69, 284-294.

Hankin, B. L., Abramson, L. Y., Moffitt, T. E., Silva, P. A., Mcgee, R., & Angell, K. E. (1998). Development of depression from preadolescence to young adulthood: Emerging gender differences in a 10-year longitudinal study. Journal of Abnormal Psychology, 107, 128-140.

Joiner, T. E., Alfano, M. S., & Metalsky, G. I. (1992). When depression breeds contempt: Reassurance seeking, self-esteem, and rejection of depressed college students by their roommates. Journal of Abnormal Psychology, 101, 165-172.

Kenney-Benson, G. A., & Pomerantz, E. M. (2005). The role of mothers� use of control in children�s perfectionism: Implications for the development of children�s depressive symptoms. Journal of Personality, 73, 23-46.

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Martire, L. M., Lustig, A. P., Schulz, R., Miller, G. E., & Helgeson, V.S. (2004). Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychology, 23, 599-611.

McCullough, J. P. (2003). Treatment for chronic depression: Cognitive Behavioral Analysis System of Psychotherapy (CBASP). Journal of Psychotherapy Integration,13, 241-263.

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Nolen-Hoeksema, S., & Girgus, J. S. (1994). The emergence of gender differences in depression during adolescence. Psychological Bulletin, 115, 424-443.

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Okazaki, S. (1997). Sources of ethnic differences between Asian American and white American college students on measures of depression and social anxiety. Journal of Abnormal Psychology, 106, 52-60.

Wade, T. D., & Kendler, K. S. (2000). The relationship between social support and major depression: Cross-sectional, longitudinal, and genetic perspectives. Journal of Nervous and Mental Disease, 188, 251-258.

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I have never told the story of my husband’s illness. His illness is not my illness, and so I did not think it was my story to tell. But the illness is a third party in our relationship. I have been in a relationship with the illness for eleven years. So in this way, perhaps, it is my story too.

In the past, my husband has said that he would prefer not to be a subject of my writing. But he has also said that he would never want to censor me. He says, Do what you need to do for art.

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 P.re 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 cells 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 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.

Also, when I knew that Ron Jeremy was having sex with another woman, I would get to envision him the way another woman might envision him. I liked thinking about other women wanting him. It made me want him more.

The only experience that may have threatened my marriage was with Demetrius. He was my last lover. He was not like the other boys. Demetrius and I did not flame out quickly. We went on for a year, sexting and sending romantic emails from across the country, meeting up in hotel rooms in New York. The communication, the sex, and our connection were spiritual. I felt so connected to him, so consumed by my thoughts of him, that it made me question the truth of my marriage.

I struggled with compartmentalizing Demetrius and Ron Jeremy. It’s hard to compare the person you see once every three months with the person you see every day. It’s hard to compare the person you don’t really know with the person you’ve been with for eleven years. The rarer person starts to look better. You don’t see his flaws. He only shows you his best self.

Such was the case with Demetrius. I would see his most amazing side in a fantasy bubble that we constructed. Then he was gone again, and in his absence I would imagine an even more amazing Demetrius. Questions arose for me as to why what I had with Ron Jeremy didn’t feel like what I felt for Demetrius. Like, why didn’t my love for Ron Jeremy excite and titillate me like my new romance with Demetrius? Intellectually, I understood. But emotionally, the questions consumed me.

I think that even if I were single, it would be hard to compartmentalize my longing for Demetrius. That longing was an all-consuming longing. It made me wonder why the rest of my life, all of it, didn’t sparkle like that.

Despite his request that I keep my private life private, I came clean to Ron Jeremy. I told him that I had fallen for someone. Or, as he put it, You let your sidebitch settle in. We decided, after five years of open marriage, to be monogamous. I didn’t think I had the strength to break it off with Demetrius otherwise. If you are nonmonogamous, why would you?

It feels safer to talk openly about open marriage on this side of it. I felt that when I talked about my marriage as open, I was perceived by my straight female friends either as crazy or too idealistic or in denial. Maybe some people find it threatening—that their husbands could have desires they are not addressing. That they, themselves, might have desires that they are not addressing. That “the way things are,” the status quo, doesn’t have to be the way things are.

People have affairs all the time and this could be a viable alternative to monogamy. An open relationship doesn’t mean all the doors fly off the things and there are no rules. It doesn’t have to be an orgy. You don’t have to be a 1970s swinger on a cruise ship or living on a commune in Oregon growing hemp to try this. People who look like me are trying this.

The gays, of course, understood. My gay friends loved my open relationship. I was considered “French” and “evolved”—a beacon in the straight world. When I told my friends that Ron Jeremy and I were monogamous again, the straight ones said congratulations! The gays seemed disappointed.

I doubt that Ron Jeremy and I will be monogamous forever. Our relationship continues to evolve. Monogamy vs. open is one question that will always be up for discussion. His health may be a factor in considering whether to remain monogamous or open it up again. But it won’t be the only factor.

Yes, having an open marriage can be a comfort, a defense mechanism, when I feel that my marriage, because of Ron Jeremy’s health, will never look like my friends’ marriages. I feel like, well okay, I can’t have that. I probably wouldn’t even want that, in the case of husbands and wives who do everything together, from the gym to grocery shopping. But look what I can have. But I also think that some people, like myself and Ron Jeremy, are uncomfortable with the traditional picture of marriage. Maybe we do better when we see each other simply as beloveds.

Los Angeles has been good to Ron Jeremy and me. It’s easier to be a sick person in Los Angeles than in New York. LA allows for more mobility, when weakened. Also, as a sick person on the street, it’s better not to have crowds of people pushing toward you. We originally moved here hoping that the weather would help him get well. While the LA sun has not been a cure, he has more of a life.

Recently, we went to a Jewish deli, where Ron Jeremy ordered an exorbitant amount of food, including a knish, which I told him not to get. The next day he complained about being fat. I was like, I told you not to get the knish. He said that would be a good title for an essay about marriage.

I walk into the kitchen and I kiss Ron Jeremy with an open mouth. I kiss him with an open mouth, as though he is not my husband. Or I kiss him as though he is my husband, but that the words husband and wife mean something else—not what I have perceived them to mean through my own fears.

In this moment I resolve to kiss my husband with an open mouth forever. I want to freeze him the way I see him in this instant: dark eyebrows, sexy, sleepy hair and sleepy eyes. But we can’t freeze the way that we see the people we love, as much as we would wish. I know that I will kiss my husband with a closed mouth again, at some point. I know that I will even kiss him with a closed heart.

I pray for our love. I pray that even if I kiss my husband with a closed heart, my heart opens again to him. When I desire my husband, I am grateful to desire my husband. What can we hope for in a marriage but to keep seeing things anew? With the people we love, it is so easy to stop seeing them at all.

 

Excerpt of the essay “I Told You Not to Get the Knish: Thoughts on Open Marriage and Illness” fromSO SAD TODAY. Reprinted by permission of Grand Central Publishing, New York, NY. Copyright © 2016 by Melissa Broder.

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