invisiblejungle
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http://lithub.com/melissa-broder-thoughts-on-open-marriage-and-illness/
This is an essay about what it's like to be married to a man with severe CFS/ME. The first half is about the illness, and the second half is about how the illness led to them experimenting with an open marriage.
Some quotes:
"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."
"I didnt know how long a haul the illness would be, how monotonous and seemingly hopeless sometimes. I didnt 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."
"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."
"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."
This is an essay about what it's like to be married to a man with severe CFS/ME. The first half is about the illness, and the second half is about how the illness led to them experimenting with an open marriage.
Some quotes:
"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."
"I didnt know how long a haul the illness would be, how monotonous and seemingly hopeless sometimes. I didnt 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."
"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."
"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."
