Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Married to a CFS/ME patient

Discussion in 'General ME/CFS News' started by invisiblejungle, Apr 17, 2016.

  1. invisiblejungle

    invisiblejungle Senior Member

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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."
     
    panckage, LC2015, actup and 10 others like this.
  2. msf

    msf Senior Member

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    Is this THE Ron Jeremy? You know who I´m talking about, and if you don´t, don´t ask.
     
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  3. msf

    msf Senior Member

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    If it is, didn´t they kind of have an open marriage already?
     
  4. msf

    msf Senior Member

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    Haha, I see that it is a pseudonym - at least he still has a sense of humour!
     
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  5. msf

    msf Senior Member

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    More obvious quips: if it was THE Ron Jeremy, no wonder he had Chronic Fatigue Syndrome!
     
    invisiblejungle likes this.
  6. Gingergrrl

    Gingergrrl Senior Member

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    Great blog and very well-written but not THE Ron Jeremy and just a pseudonym although initially I was confused about this myself. It sounded like this couple would have had an open marriage regardless of the illness (am not judging their choice) but it seems strange to equate the two together for me.
     
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  7. msf

    msf Senior Member

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    Yes, I did not read the second half, it did not seem to have much to do with the first.
     
    Gingergrrl likes this.
  8. PatJ

    PatJ far and free I gaze

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    That was an interesting essay with a big red flag:
    There is no such thing as safe sex. Many people are under the wrong assumption that using a condom means they can't get an STI, or they think it isn't possible to get an STI from oral sex. It's possible to get herpes, syphilis, and cancer-causing forms of HPV just from skin to skin contact (ie. thigh to thigh, hand touching genitals then touching other genitals, etc.)

    The decision to have an open marriage meant increasing the health risks for both of them, but especially for him. Any infection (STI or otherwise) will use immune system resources and may increase the risk of getting other infections, or degrade already poor health.
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    That is a very good point which I had not thought of. I have mixed feelings about that blog overall b/c she said she "Preferred to be with the ill version of her husband versus a healthy version of another man" but then slept with a million other men so it felt hypocritical and bothered me.
     
    Last edited: Apr 19, 2016
  10. *GG*

    *GG* Senior Member

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    Does she say that? They are both adults, so who they sleep with is none of my business :)

    GG
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    Hi GG, Of course I am exaggerating that she slept with a million other men, but she wrote about quite a high number so I can only imagine the ones she did not write about. I'm not judging her and don't actually care what she does but I do feel that once you write a blog, you are opening yourself up for feedback. Similarly when I write stuff on PR, I get a variety of feedback but I accept it b/c I made the choice to write the post.

    I think if the blog had purely been about what it is like to have an open marriage, I would have read it from that perspective. But the blog started off being about ME/CFS and her love and devotion to being married to someone who is ill. Then it flipped into this whole other topic about open marriage and all her affairs (and some of his, too, in fairness.)

    If I had read that and never heard of ME/CFS before, it would be confusing for me b/c the two issues were so linked together when really they are separate IMO and there are people who are married where one partner is sick but they are loyal to each other. No marriage is perfect and the illness is a huge stressor but there are people who choose to keep their marriage vows out of love for each other.

    Am not judging her, and my last comment was just that when she, herself, said she would rather be with the sick version of her husband than another man who was healthy, her actions did not reflect her words. That was really the point I was trying to convey.
     
  12. TiredSam

    TiredSam The wise nematode hibernates

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    I got the impression that the real point of the article was simply for the blogger to write about herself, anything really, in as much detail as she could. I'm sure she'd be delighted to be judged, or for any attention at all. Couldn't help noticing that she missed out the perspective of the women her husband paid for sex with.
     
  13. *GG*

    *GG* Senior Member

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    Oh, that's juicy :) Stopped reading after a while, very long article!

    GG
     
  14. panckage

    panckage Senior Member

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    I read it. First bit had some about CFS, the majority seemed to be about her experience in an open relationship.... Which was pretty straight forward and not related to CFS

    I loved her line about getting turned on by gay boys and making out in the street:rofl:

    And please no more of the 'slut shaming' garbage in this thread. Grow up!
     
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  15. LC2015

    LC2015 Senior Member

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    Fantastic essay! I would read a full length book by this writer, I think she sounds great. Insightful, descriptive, touching account of Me/cfs, from a non-sufferer who has still had to experience it pretty much first-hand and "gets" it completely. Honest without being indulgent, I think a really exquisite piece of writing.
     
  16. *GG*

    *GG* Senior Member

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    What, you don't like free speech? Most sluts are not ashamed, heard they do walks to show how proud they are! So why not let people say what they want? You that thin skinned?

    GG

    Edit: I think prostitution should be legalized :)
     
    Last edited: Apr 22, 2016
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  17. SickOfSickness

    SickOfSickness Senior Member

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    She has a book, which looks like a collection of her essays, including this one. The linked article is apparently not the full essay. This is probably the only essay where she wrote about his illness, but I still want to read her book.
     
    LC2015 likes this.

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