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Speaking the Unspeakable

Debbie says:

(Apologies for the delay in posting. The Jewish holidays intervened when this was 3/4 written.)

Shapely Prose gave time and space to guest-blogger Heidi to talk about why she hates weight-loss surgery, and why she’s having it. I urge everyone to read this powerful and moving piece.

I believe weight loss surgery (WLS) is dangerous, invasive, and overly performed. I hate that something created as a last resort has turned into magical cure-all for everyone over 200 pounds…. I always have been and always will be highly, highly critical of weight loss surgery.And I’m having mine next month.

It’s the hardest decision I’ve ever made because doing something that’ so completely at odds with what you believe in is a massive mind-fuck. I’ve been called a traitor and a sell-out and I guess I can’t really argue with that; I believe strongly in size-acceptance and I’m electing to have my stomach sliced open and my organs rearranged. It’s something I never thought I’d do. Me? Having weight loss surgery? That’s crazy talk–I don’t even believe in dieting, for god’s sake!

There’s more, and it’s even more powerful and more taboo. This piece is getting a great deal of emotional reaction, which it well deserves.

For me, one very important piece of why I appreciate Heidi’s writing, and why people are responding so strongly, is that she talks directly and clearly about toileting issues. These issues come up not just around fat but also around a variety of illnesses and conditions, not to mention simply aging, and it is absolutely culturally forbidden to ever mention them.. Here’s Heidi’s story:

(Warning: This may be hard to read.)

I don’t remember when it started. Because I didn’t talk about it and I sure as hell didn’t write about it. Probably a year ago, I’d guess. ( I can’t do it. I just can’t. It’s too embarrassing. I don’t want people to see me differently. I don’t want them to be disgusted by me. I don’t want to–please don’t make me say it. It’s too much. I haven’t even written it and I’m already crying–please–) I was no longer able to clean myself after going to the bathroom. Every time I went to the bathroom, I had to take a shower.

While I was at work I would try to hold it. I frequently made myself sick and gave myself painful stomach cramps doing so. I had IBS to begin with and that didn’t help matters. Worse, it didn’t always work. So I’d go to the bathroom and have to spend the rest of the day sitting in my own shit. Sometimes for one hour, sometimes eight. The physical discomfort was awful but nothing in comparison to the shame. Fuck. The shame. Wondering if you smell, wondering if people know, wondering if they talk about it when you’re not in the room. Hoping that no one says anything so you stay as far away from everyone as possible. I felt so disgusting and so embarrassed that I just wanted to die. And I truly felt I would rather die than admit it to anyone. (Oh my god, what are people going to think of me now? I don’t want to do this at all. Please let’s stop Please, it’s too much.)

I can’t stand for more than a few seconds which made the frequent showering very difficult and painful. So, now my mom cleans me. I’m 28 years old and my mom has to wipe my ass. It’s been a few months and I still apologize every time. Every single time even though she keeps telling me to stop. Because I’m just so embarrassed that I can’t take care of myself.

The Western cultural taboo against discussing these things is almost as strong as the cultural taboo against being cleaned as an adult, the one that makes Heidi keep apologizing. And yet tens of thousands of people in America, millions around the world, deal with these issues every day.

I’d like to write a longer piece about toilet issues in general, and about discussing the subjects. If you’re interested, New York Times health writer Jane Brody wrote about an aspect of this subject last May. (You may have to go through an ad–skip button in the top right-hand corner–to see this.)

For the moment, I’m far less interested in discussing Heidi’s personal decisions than I am in giving her credit: she’s willing to speak the unspeakable–and to let us see how hard it is for her to do so. The more of such bravery we see, the less incomprehensibly brave we will have to be.
The days when no one could imagine discussing STD status before sex with a new partner are not all that far in the past. In 2007, those discussions may not be the norm in most communities, but they are the norm in some, and the possibility exists for a lot of people. The only way to take the shame off the unbearably shameful is to have it spoken about. I just hope Heidi knows how many other people she’s helping by telling the truth.

I read Shapely Prose, but Lynn Kendall pointed this one out before I had a chance to find it for myself. And she wasn’t the only one to do so. And Lisa Hirsch mentioned the Jane Brody article at a very opportune moment.

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23 Responses to “Speaking the Unspeakable”

  1. jeanne Says:

    Yes, this is an extraordinary taboo to broach. Or breech in the case of some, where a difficult delivery of same presentation can create nerve damage that much later in live reduces to nil the capacity to hold it, or feel it pooping on out. Heidi could be doing the same for her mother at any point. Many of us will. Some of us already do, and the shame in avoiding the conversation is painful. Then again, I’ve got a sick sense of humor and a potty mouth and have found a good set of the giggles goes a long way to restoring dignity in the most undignified of situations.

  2. AnonymousAndCo Says:

    So true. And those issues are not something you think about until it happens to you, as it did to me this summer. Due to a medical issue I gained 30lbs of water around my midsection in less than 48 hours. It wasn’t only the sudden ballooning of my sides, back, and belly that was the problem, but the abrupt and incredibly painful stretching of the muscles which made it almost – almost – impossible for me to wipe myself, front or rear. There were a couple of times when I seriously considered calling in the nurse for help – but I was too ashamed and embarrassed to do so.

    In addition, my legs were so swollen I could hardly bend my knees without my skin burning, ready to split. My shoes (Dansko Pro’s) didn’t fit. I had difficulty breathing and couldn’t stand, much less walk, for more than 5 minutes without losing my breath – showering was a nightmare.

    It took a week in the hospital, and another week at home on the couch before I began to pee the water out. I can honestly say I hope I’m never in such a situation again, but there are no promises made in this life about anything.

    I, too, think Heidi was enormously brave in writing her story, and I don’t understand the people who say she’s making the wrong decision – would they be saying the same thing with such pride if they were in her shoes? Somehow, I think not.

  3. susan senator Says:

    I feel very proud of Shapely Prose even though I know nothing about her except the little bit I’ve read here. Talking about difficult things is the only way to integrate all the parts into ourselves and I congratulate her for that. This is what led me to discuss my OCD and eventually lessened the intensity of it, because I was no longer as ashamed or anxious about it.

    I also have a teenage son with autism, and I know many parents like me who deal with all sorts of things that they never dreamed of when they first held their babies in their arms. In this life we never know how things are going to suddenly open up into a whole different realm and the best we can do is face it and find others who understand and love us. Good for Heidi’s mom for being a mensch.

  4. Kell Brigan Says:

    “…I don’t understand the people who say she’s making the wrong decision”

    SCIENCE.

    Or, did you miss the part about the kidney failure, weight regain, gall stones, kidney stones, malnutrition, osteoperosis, deaths…

  5. Debbie Notkin Says:

    Jeanne, yes, laughter works fabulously (and I often forget it).

    Anonymous & Co., thanks for sharing your story!

    Susan, yes, yes. (FYI, Heidi is a guest blogger at Shapely Prose, where Kate Harding is main person and fillyjonk also blogs regularly.)

    Kell, I do know the science you’re referring to, and I do understand the people who are criticizing Heidi’s decision. At the same time, it’s her decision and I prefer not to evaluate it here. You can trust this space for other posts that evaluate the worth and dangers of WLS.

  6. RW Says:

    Thank you again for another post which doesn’t look for simple answers. Aside from the important issues you raise here, I have to respond to something specific Heidi said:

    “I’ve been called a traitor and a sell-out and I guess I can’t really argue with that”

    No no no no no no no! For me, this indicates a problem. It’s a really big mistake if we have a movement in which this happens.

    Is dieting wrong? Is weight loss surgery bad? One of my biggest lessons over the years has been that simple positions aren’t helpful:

    “Nuclear power is bad”
    Hmmm… Yes perhaps, but only in a world where all the other options are ‘good’. If option 2 is to buy coal from a country where children are sent down mines to die – then we can’t speak so simply. There’s certainly an argument to be had, but lets not claim it’s simple.

    “Genetic engineering is evil”
    Hmmm… So I entirely understand that the current climate around disability and genetics is very damaging – but that’s not the same thing as genetics being bad. There’s an excellent article here: http://www.bcodp.org.uk/about/genetics.shtml which captures the difference.

    “Weight loss surgery is bad”
    Nope… I can’t agree with that one either. Oh yes I do see the massive problems with the industry and the position that weight loss surgery has in the world. And I know absolutely nothing about the science – but my guess would be that for some people there may be surgical options which are advantageous. Just like the UKDPC (article above) speaks about the way that genetic engineering is part of a new eugenics movement, without ever saying that genetic engineering is ‘bad’.

    “Dieting never works”
    I hate the way that dieting (watching calories, thinking about food) fills the lives of so so many people – and I entirely get that it probably doesn’t work almost all of the time – and I’ve written about male power and female dieting. But “dieting never ever works” just seems too extreme. That’s pretty much the same thing as saying “it’s OK to never eat vegetables” or “if you want to live on chocolate there will be no health consequences”. I know that when people say “dieting never works” they don’t mean “living on chocolate is OK” but that’s how other people will read it.

    What better way to discredit our arguments than to force us into extreme positions. Someone I trust, from the nuclear power industry, was forever switched off to ALL arguments about the environment by some of the nonsense very occasionally spouted by environmental campaign groups. He could have been an ally. That’s silly – the movement needed him, or at least for channels of communication with him to be open. He could have been a fierce critic of some of the industry. At the least, it would have been good to have had him recycling bottles.

    What better way is there for society to isolate us than to make sure we excommunicate our friends – “you’re going on a diet, well obviously you aren’t one of us any more”. That’s a big mistake.

    There’s so much more to say – but perhaps I should finish by saying that the phrase ‘divide and rule’ keeps popping into my mind.

    None of this is simple, ever.

  7. Kate Harding Says:

    But “dieting never ever works” just seems too extreme. That’s pretty much the same thing as saying “it’s OK to never eat vegetables” or “if you want to live on chocolate there will be no health consequences”. I know that when people say “dieting never works” they don’t mean “living on chocolate is OK” but that’s how other people will read it.

    RW, I completely agree with you that none of this is quite that simple, but A) as you acknowledge, that’s not what anyone in the Size Acceptance movement means by “Diets don’t work,” and B) I don’t think the fact that people misunderstand is a good reason not to keep telling the truth.

    When I wrote about this at Shapely Prose, I took great pains to define dieting as trying to lose weight. Eating more vegetables is a great idea for anyone. Exercising is a great idea for anyone who can do it. I never, ever talk about the failure rate of deliberate weight loss without making those points. But it is an enormous, destructive myth that eating “better” and exercising will make fat people thin, and getting more people to understand that is one of my primary goals — and should be a primary goal of the movement, I think.

    Health at Every Size is really not a complicated concept. Saying, “Eating well and exercising are important for good health (if that’s your priority), but they will probably not make you permanently thin” is not at all complicated. The complication comes from people staunchly refusing to believe the reams of evidence that trying to lose weight really, truly does not work in the long term. It’s an artificial complication. So I think it’s a mistake to say we should dance around this very simple and factual message just because a lot of people won’t understand or believe it.

  8. Nancy Lebovitz Says:

    I know a few people who’ve deliberately kept substantial amounts of weight off for a long time, and don’t seem to have wrecked their quality of life in the process. However, this is quite a rare outcome for efforts to lose weight, and I think the odds of success are so low that I strongly disapprove of the general demand for people to not be fat.

    If dieting were a drug, do you think it would pass the FDA, considering the side effects, failure rate, and that dieting is a gateway behavior for eating disorders?

  9. RW Says:

    Kate – just to be clear – I’m certainly not suggesting we should stop telling the truth – or dance around the message that:
    “eating well and exercising are important for good health (if that’s your priority) but they will probably not make you permanently thin”
    And – Nancy – I agree completely with your point about the FDA.

    I wanted to try to analyse why someone in Heidi’s situation is feeling that she is a ‘traitor’ (and to emphasise that this very much isn’t OK). And I wanted to add to Debbie’s wish: “I’d like to think, if the wind shifted, that I could try to take off some weight and still retain my activist status.” in her excellent post about Hanne Blank
    http://laurietobyedison.com/discuss/?p=426

    I wanted to suggest (tentatively) that one of the reasons that we have the situation where Heidi feels like a traitor is that some people aren’t so careful with language and messages. I guess I’m making a plea for other people to be as careful as all those at Body Impolitic (including those commenting) generally are. I suppose I’m also asking that we all remain vigilant – given the risk that society will try to push us into a simplified corner with our messages.

    By the way if anyone has a better explanation of what it is that leads someone in Heidi’s position to feel a traitor – or why it’s OK for Hanne to be excommunicated (not by those here perhaps) then I’m all ears. What I’ve written is just my immediate thinking about something that leaps out at me as an issue…

  10. Lynne Murray Says:

    I’m responding in part to RW’s post, but also to a chord that this whole discussion sounds in me. I don’t know if I can completely understand Heidi’s dilemma from my view at 300-some rather than 500-some pounds. But I know very well the crushing terror of feeling that one’s body is out of control.

    I am so sorry that someone has been so cruel as to call Heidi (or Hanne) a traitor. I think what those of us who have dieted our way to ever higher weights are screaming, sometimes hoarsely , “Don’t fall in that pit, it’s even harder to climb out!”

    We may not express it in the best way possible, and sometimes it’s our own rage at having been duped over and over again, and still having to deal with physical problems we have–some of which, like my own bad knees, are definitely made worse by more weight makes us a little crazy.

    It would also make sense to not just talk to WLS cheerleaders but people such as Lisa at
    http://theskinnyonline.blogspot.com/
    who talks about the high level of denial in WLS “support groups” and how rigidly following post-operative rules and not learning to listen to your body’s needs can make the side-effects of the surgery much more intense.

    I get that there are a lot of negative emotions here, and I do believe most of us are trying to be supportive, and certainly not to condemn anyone. I just think that because this topic stirs up so much angst and deep fears, that it can make us sound harsh when we hope to be helpful.

    Blessings on all of us (we sure need them)!

    Lynne

  11. Stef Says:

    My comment is not about Heidi.

    I wonder how many people decide to get WLS because they stop being able to wipe themselves? Precisely because toileting issues are taboo to talk about, most people have not been exposed to and tried all the potential solutions.

    One of the issues of FaTGiRL zine talked about some of the options. AmpleStuff.com and some medical supply companies sell some products that can help with some toileting reach issues. But it’s hard to find out about these resources.

    If a person is encouraged to have surgery because no one has bothered to design a decent toilet paper handle, it says some really pathetic things about our society. The tools and machines and drugs that make surgery possible take orders of magnitude more technological and design expertise than a toilet paper handle.

  12. Lisa Hirsch Says:

    Regarding cleaning oneself, there is plumbing that can handle this: bidets, which apply water to the anal or vulval region in a cleansing way. A Japanese company called Toto makes a toilet that combines waste disposal with a bidet essentially built in. I do not remember if they have a built-in way to dry the area that has been cleaned, but I will report back on that.

    Stef, you are right about the need for appropriate tools. My impression from Heidi’s posting is that this is, in some ways, the last straw for her. She has a long list of other issues, including physical pain, joint problems, and mobility issues, that are related to her size.

  13. janet Says:

    Lisa, are you talking about the toilets at Google? I’ve never had the guts to try any of the “cleansing” functions.

  14. Inquisitive Raven Says:

    On the bidet front, The Real Goods sells a bidet attachment that can be affixed to a standard toilet. Much cheaper than an actual bidet although still more than I can afford at the moment.

    The problem with bidets though, is that unless they’re installed in the workplace restrooms, Heidi still has to put up with the mess at work. Outside of Japan, or Google, is it likely that such amenities will be available in the workplace?

  15. Lisa Hirsch Says:

    Janet, yes. I tried one of them once.

    Raven, exactly. It is possible a workplace would install such plumbing if the request were framed as an accommodation for medical or disability reasons, but that is a can of worms that people who need such facilities may or may not be willing to open.

  16. Inquisitive Raven Says:

    Pity that, bidets in the workplace would be a godsend for women of childbearing age at least one week out of every month. I really hate having to clean up my period.

  17. Lisa Hirsch Says:

    Yes, you’re right about that.

    Regarding the can of worms: one definition of disability is “a condition that prevents someone from being able to accomplish the activities or tasks of daily life.” I believe that may be a legal definition, but I have not looked at the ADA-related definitions of disability in years. However, toileting is certainly an activity or task of daily life. I think a case could easily be made for bidets in the workplace. I also note that while the fancy Toto toilets look expensive at $5,000, and they are certainly more expensive than standard toilets, include Toto’s, that is peanuts in the context of any workplace renovation or buildout, or in the context of the cost of employee benefits.

    I just took a look at the Toto toilets and they have settings for “front cleansing,” “rear cleansing,” and “drying.”

  18. Priscilla Palmer Says:

    You have been tagged for The Personal Development List. I would love for you to participate.

  19. Lisa Hirsch Says:

    Coincidentally, the NY Times has an article on bidets in Thursday’s paper (Sept. 27).

  20. RW Says:

    We’re back in the territory that was well mapped out in relation to pedestrian crossings etc (at least in the UK) already. A great deal of campaigning had to take place to get lowered curbs at road crossings – and the primary argument was about wheelchair use. But guess what – once they are in place it turns out that everyone prefers them, and loads of people benefit. The same thing has happened with accessible toilets – when people have realised that having at least one bigger cubicle isn’t just useful for people who use wheelchairs. It doesn’t take much thought about details to make us realise that an adaptation currently seen as ‘just for disabled people’ – toilets that wash and dry – actually would be useful for very many people. I’m certainly hoping for a future in which every public toilet has at least one of these available – and (given that most of us get less physically able with age) perhaps that every house has one too.

  21. Lisa Hirsch Says:

    Yes, I agree with all of that. This is certainly of those areas where an unknown number of people would benefit. The bidet attachment discussed in the Times article costs around $1200, which, while more costly than a regular toilet, is, let’s say, the cost of a medium-end personal computer.

  22. Debbie Says:

    Just dropping in to thank everyone for the extremely useful and constructive comment thread.

    Stef, I’m especially appreciative of your bringing in the point that taboo subjects mean taboo solutions. And RW is almost certainly right that something that now might seem like an overly expensive accommodation for a tiny group (public bidets) would probably work like curb cuts to the benefit of an awful lot of people.

    Lisa, can I come to Google and examine the bathrooms? I bet they’re nowhere near as much fun as Japanese multi-button toilets!

  23. Lisa Hirsch Says:

    1. Yes, of course!

    2. They ARE Japanese multi-button toilets, though maybe they have fewer buttons than you can get in Japan. I cannot figure out which model we have, but it is one of the multifunction models here:
    http://www.totousa.com/prodcatalog.asp?cid=41

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