Cutting Away the Heart of the Matter

September 20, 2012 at 5:25 pm (Hospitalizations, Mental Health) (, , , , , , , , , , , )

I’ve been spending the last few days weighing back and forth on how much, if anything, I was going to talk about the upcoming surgery I face. It’s high risk, and a big deal, and it’s messing with my head in a number of ways. I’ve had several divinations done about it, and the situations surrounding it, and one point of view came out during a session that I hadn’t thought about.

The fact of the matter is that they are cutting away a good portion of my panniculus, sometimes called a pannus, or an “apron”, or in more direct terms, the hanging part of my belly. The doctors estimate that I will lose 50lbs of tissue during the surgery. And for some reason, when I heard about this, I had a very nuanced reaction, but one of the major emotions was shame.

I can’t say with a straight face that I do a lot of work in the fat acceptance community, but I do support it both by being an outspoken voice for it, and sometimes financially. I have come a long way, personally, from hating the fact that my genetics dictate the size and shape of my body, to accepting and even loving the unusual nature of the habitus I’ve been given. I even teach classes aimed at people who need ideas on how to better explore and use their bigger bodies to express themselves sexually. I do not, and have never seen, my size as a disability. It is a thing to be celebrated and appreciated, not abused, jeered at, and hated.

I, like many others, went through periods where I decided that I needed to change this – and I’ve approached it from all matter of healthy and unhealthy ways. I was labeled anorexic when I was in psychiactric care, which may be hard to believe when you think of the public images of that disease, but one need not be 70 lbs to starve oneself, to deny oneself bodily necessities as some sort of punishment. In fact, many survivors of eating disorders are not thin at all, but who started down that path due to the public and private shame that comes from being overweight. Most who know me also know that five years ago, Dr. WLS put me on a protein-shake-only diet in which I lost a significant amount of weight – near 140 lbs – in seven months. This is now been identified as one of the causes of my neurological condition.

I have come to accept that this is my body, and I am not what people think. I do not eat piles of fried food, potato chips, and ice cream. In fact, I frequently get told I do not eat enough. I do have certain culinary weaknesses, and I won’t profess that every single thing that passes my lips would meet muster with whomever the diet cult leader is at the moment. I have done the atkins thing, and the south beach thing, and the paleo thing, and the cabbage thing, and the slim fast thing, and the vegetarian thing, and the macrobiotic thing, and the low fat thing, and even that really popular “points” thing. (I will admit I’ve never done the “ship processed foods to my house and that’s all I eat” thing, but mostly because that thing is wacky expensive.)

And here I sit, somewhere around 400lbs.

The reason that I have to have my belly excised is complicated. Part of the reason is because my intestines are in there, and they don’t get proper abdominal wall support, which has been the cause of all of my hernia issues. Another concern is that there is now a buildup of infected and necrotic tissue, possible due to the several surgeries having this pannus has caused. I am currently draining a very large absess that grew to large proportions unnoticed in my belly because of its size. And finally, it does hinder my mobility to a certain degree. So it has to go.

It amuses me that, technically, the surgery I’m facing is a “tummy tuck”. Of course, it’s a much bigger undertaking that some afternoon vanity procedure for a supermodel who ate one too many pieces of pizza. My “tummy” is quite large, and has organs in it, and cannot be supported by something like a binder or a girdle. (Those items just end up compressing my pannus against me, or falling off due to lack of support. Believe you me, it’s been tried over and over again by several doctors.)

So why am I ashamed of this? Why does this seem to be the kind of procedure to have in secret, when no one knows? Why do I have a hard time articulating what is just another medical procedure, when I’ve been so candid up until this point with every little other thing?

I hold my belly in my hands for a moment. I don’t want to be a part of the pressing media shame machine that tells fat people that being fat is a medical disaster waiting to happen. I don’t want to be counted among their statistics of overweight-related surgical and medical procedures. Even the lead surgeon who is performing my panniculectomy said, “It happens to people who weight 145, and who weigh 400lbs. It’s not about how much weight, but how it’s distributed.” I just happened to be descended from the “Eggs on Sticks” tribe, where all of our weight is in our trunk and abdomen. Luck of the draw, I guess.

I also can’t, for the life of me, imagine what my body will look like when the procedure is over. I had a similar surgery a few years ago, but it still left me with a significant apron; this time, they’re going to take as much as they can without putting my body into shock. The reason the surgery is high risk is because I’ll be under for up to 12 hours or longer, between removing the tissue, making sure the infected stuff doesn’t cross contaminate and is completely removed, making sure my intenstines are secure and supported by a strong muscular wall, and that the absesses won’t reoccur. Most of the images I’ve found of people who have had similar procedures end up looking like they have a beer belly. I guess that will help with making me look slightly more masculine?

But yes, I don’t want my personal medical procedure to be proof positive that being fat will lead to these sorts of things. It’s important to remember that other factors contributed to this as well – I won’t talk about whether or not Dr. WLS’s past work on my belly lead to this, because I’m still investigating legal recourse, but from that statement alone you should figure out my stance on the matter. I keep repeating to myself, “It’s about the belly, not the fat”, but it isn’t getting through.

So there’s one of the several trains of thought that I’ve been processing. Maybe you, too, have had to face the dubious line between fat acceptance and medical intervention? How do you reconcile what you were born with, with what the medical industry says is “healthy”? And how do you approach a surgery you’re ashamed to admit you need?

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8 Comments

  1. JJ said,

    Del…

    I am so sorry that you are going through all of this!!!

    I also am in possession of an apron. I was a completely normal size until age six when my mom went on her first diet. From there on out it was nothing but hell. Compared to all the beanpoles I was HUGE!!! BUT… I was a size 12 in 7th grade and weighed like 160 pounds or something. Yet I was teased horribly. in 2012 that wouldn’t be an alarming call out all the forces number.

    I will save you from the huge history that I started writing because it is irrelevant, but I like you was constantly shamed by doctors. Several tried to get me to have bypass I told them there was no fucking way I would consent to that. I never had a single “weight-related” medical problem. I was fat, but was healthy as a horse. At 40 I got diabetes and high blood pressure as a well-known side effect (class action pending) of Abilify which was is an atypical anti-psychotic I take for my bipolar. The surgery talk became deafening.

    My apron has not caused any medical complications. The rest of the fat people in my family are built differently so I am guessing it’s in the gene pool of my bio dad who I have never met and no VERY little about.

    I have gone through HUGE periods of shame regarding my weight, There have also been some periods of acceptance. Like you the list of diets is exhaustive and include three medical fasts. The first one “worked” and I hovered in the size 8-10 range. I was never so miserable in my life. My dysphoria was triggered to the nth degree and EVERYONE treats you differently!!! My mom and sister treated my like a Barbie doll to dress up. After about six months I started eating my old comfort foods. Once I got to about 180 everyone had gone away. Fat is a great asshole insulator. It doesn’t work with everyone but it does help.

    I am fat and more than likely ALWAYS will be fat. I don’t judge people by their weight, but by their character and personality. The biggest fuck you all moment came when I spent a summer on a farm. I went there to find myself and I did. That is where I finally accepted that I am a fat guy and I am perfectly ok with that. If you don’t like it then don’t look. My only issue with being naked in front of other people comes from not having had top surgery yet.

    I am holding you near and dear to my heart and praying my ass off… You have way too many things left to accomplish on this earth. You cannot leave early, no one can do what Awesome dot Del can do. You mean more to me than you will probably ever realize… I am begging that you are allowed to stay.

    I LOVE YOU!!!

    JJ

    • Del said,

      JJ:

      I appreciate you sharing your story.

      It pains me so much that the medical community KNOWS that bypass is not a healthy alternative, but since we don’t have anything better, they keep forcing it down fatty throats as though we’re ungrateful if we don’t acquiesce. More than once I had to turn to Dr. WLS and say, “My health insurance doesn’t cover it; are you willing to do it pro bono? Is it really that much of an emergency?”

      The studies are starting to emerge that 10, 15 years out people who have had bypass surgery are either back to their old weight (having restretched the stomach pouch to its old size), or are suffering from several maladies due to malnutrition, and mostly BOTH. Even the people who came out to me as secretly having had the surgery (you’d be kinda surprised) have to deal with things like blood transfusions, wearing wigs due to severe hair loss, brittle bone disease, and a host of other conditions that can be directly related to malnutrition.

      And if you have diabetes, or are pre-diabetic, the screaming gets worse, because it’s true that the one thing bypass *does* accomplish is help the body recover and create a new relationship with insulin. However, my diabetes is well controlled with glucophage and diet, so there’s really no need for drastic surgery to “cure” something so manageable.

      And if it’s not bypass, then doctors are quick to suggest whatever diet is hot at the moment. I went to the Atkins diet three times due to doctor’s recommendations, and each time I would plateau at a higher weight than they’d like and start talking some other crazy nonsense. I ended up giving up and going back to just eating whatever I wanted.

      The thing that gets me the most angry about it is that everyone dies. It’s a fact. Some people die from smoking, or eating, or not moving enough, or moving too much, or eating too little, or not the right things. It’s not just fat people who suffer from this. And really, why go through all the malnutrition only to then get cancer, or alzheimers, or HIV, or whatever else is lurking around the corner? We’re all going to die, and there’s nothing that can be done about it.

      I’ve said all along that I’d rather be happy with the life I’ve lived, than live a life that saw every pleasure as a danger to be avoided. Yes, having multiple partners is riskier than monogamy (although not so much with serial monogamy, which is honestly what most people practice anyway); yes, nonsmokers live longer than smokers; and yes, sometimes fat plays a part in how fast or slow someone dies. (As one doctor tried to scare me, “Do you see lots of fat old people?”)

      No, I don’t, but I also don’t see lots of happy old people, either. Most of them are living lives of deprivation, quietly puttering away at “safe” activities, seeking out pleasure only in the company of others, while slowly society forgets them until finally a part of their body gives way. That doesn’t sound like a pleasurable end, either.

  2. Joh said,

    Del –

    You’ve never met me IRL, and I hope you don’t mind me commenting here during such a difficult time. I follow your blog because your writing has been very helpful to me as person with a difficult/potentially fatal chronic illness that most doctors have never even heard of. It has been such a blessing and a gift to see another person just talking openly about the experience – the odd moments of good, the bad, the ugly, the comical, the weird, the heartbreaking.

    I was always a big kid. I can’t say that I’ve ever had a large belly or apron, but I had thick bone structure, thick muscles, broad shoulder, a large chest, wide hips. My twin brother is a linebacker, if that tells you anything. Even when my ribs and the hollows of my cheeks are showing, I still weigh in as overweight at the doctor’s office.
    I was always chubby, on top of that. My vegan parents put me on very extreme diets. I was also athletic and played sports, but never lost any weight, and was never identified as anything but fat. Then during college I had my first major hospitalization and started showing signs of illness. I dropped ridiculous amounts of weight, and the only change in my lifestyle was that I had stopped exercising, because it hurt too much. I couldn’t keep down solid food for months. I was living off of ensure and pedialyte and half the time I couldn’t keep that down, either. It was miserable. I remember seeing a new doctor for the first time – as she walked into the room, staring down at my chart but not looking up at me, she said how happy she was to see I’d “finally decided to do something about my weight”. I sat there and just cried and laughed at the same time like a madwoman because I had no control over it one way or the other, and being fat was the one thing I wasn’t worried about.

    That cycle has been repeated many times throughout my life now – I get severely ill, and I lose a lot of weight, and I get amazingly positive reinforcement from friends and family and strangers who are so happy that I finally look “good” and like I “care about my health”…but it felt hollow. I never earned any of that praise, and it was given to me because of something I didn’t even value.

    Then there are times when I start to get better, and the weight all comes back. The thing is, I love my fat body. I don’t care how good the skinny body looks to other people, the fat body is the strong one, the one that’s not in pain all the time, the one that lets me climb mountains and play soccer and swim in the ocean and have rollicking good sex. The fat body was beautiful to me. The fat bodies of other people seemed beautiful to me, too. Most of my struggle has been coming to terms with my “skinny” body, which feels so much more vulnerable and weak. Losing physical mass of any type, whether it is fat loss or an amputation, can leave a person feeling smaller and less powerful, and it is a scary thing to face.

    There is a somewhat happy ending to this story. I work in the medical industry now. A large number of my patients were referred to me because they are considered clinically obese, and other practitioners refused to work with them, usually out of ignorance and fear of larger bodies. It was kind of shocking, at first, because I never expected that so many people would be denied care over that. So I set out to find other healthcare workers that would work with these patients, specialists that I could refer them to, and know that they would be welcomed with open arms, encouraged and supported. Every year, I am meeting more and more medical professionals who celebrate all body types and are learning to value quality of life over conformity. I try to base my own practice around changing people’s quality of life for the better, and honoring their individual experiences by having them set goals that matter to them.

    The medical community is coming around, changing their archaic views, just…slowly. Gradually.

    I hope that whatever needs to be done, whatever choices you make – that you will have love and friendship surrounding you. And I hope that whatever shape your body takes after surgery and recovery, that you find joy and beauty in it, and a better quality of life.

    If you can, please let your blog readers know when the procedure is schedule. I and I am certain many others would keep you and those who are close to you in our thoughts and prayers. And if you don’t get the chance to update before the surgery, well, you are in our thoughts and prayers anyway.

    • Del said,

      Joh:

      Thank you so much for your heartfelt reply.

      I am in the process of setting up an email list for people who are interested in keeping up with me and my surgical chicanery, just so I don’t have to worry about crossposting to Facebook and the blog and Twitter and all the other media inputs we consume in a day. (I know I’ll forget one, and then the people who rely on *that one* will go crazy feeling like I left them out.)

      I know that even after this surgery, I will still be fat. I worry about new clothes, but I keep reminding myself that my waistline isn’t going to change dramatically, and that the rest of my body will be the same.

      I, too, have had people (doctors and friends alike) compliment me when I’ve lost weight due to illness. It pains me like nothing else, really. In fact, earlier this year I dropped 60 lbs due to some medical hiccup, and someone actually told me that I should be glad, and use it as a impetus to keep losing! I was completely aghast.

      I hope you find answers to your mystery, and comfort in your times of pain.

      ~Del

  3. Lauren said,

    I have an acquaintance who is diabetic. He recently got an infection in his foot which became so bad he had to have it removed. Nobody with two feet still thinks badly of him for this. Of course, there is very little two-footed-shaming going on, but my point is that you are clearly not doing this out of vanity or because you need to fit in, and I doubt anyone would see it that way.
    In fact, that apron has been a valued part of you for quite a while, so I would not think it at all inappropriate to grieve for its loss. My friend is getting counseling as he mourns loss of his body part. You might want to look into that, too. As a society, we are so focused on weight loss that I would expect that many would think that the removal is a good thing, but not when it’s part of who you declare yourself to be for so long.
    Whatever you do, you know so very many people who’ve got your back. You just take care of the front however you need to.

  4. mandalamama314 said,

    Thank you so much for speaking out on this! I was happy with my body at 140, even 180, because I was into fitness and body-sculpting with weights. Then I gained up to 280 within 18 months, trying almost all of the diets you mentioned, walking everywhere including up the stairs in tall buildings. It was 10 years before I was diagnosed with PCOS, and started treatment. I got down to 220 and have been stuck there. I became happy with my body again, got into pro-healthy body image causes. My “core strength” made all the difference, my fat distribution was even.

    Then I got pregnant at 38, and had my daughter by emergency cesarean. Now I have an “apron” myself, and it was only after that formed that I began to feel truly ashamed. Fat on me is beautiful, I’m abundant, comfortable and comforting, I give great hugs and love to cuddle with my friends. But the apron is a whole different kind of fat. I think that’s because it’s “extra,” useless, it serves no evolutionary purpose that I can see. Also, it has been horrible for my back, both my thoracic and lumbar spine. No doctor will give me a panniculectomy, I’d have to lose 150 lbs. for it to be covered by Medicare and/or Medicaid, and at 240 that is just plain ridiculous.

    I get pissed off by the silliest things … there is some really sexy underwear out there in plus sizes, more than ever before. Have big wide hips? Wear hipsters, bikinis, even tangas. Have an apron? Wear briefs, a.k.a. “granny panties.” Even if I find sexy lace briefs, I can’t wear the ones with high-cut leg holes. I’ve started wearing men’s boxer briefs, just so I don’t feel like my gut is moving around while I walk. Hey, guys know how to dress without suffering! 😉

    My point is: you’ll still be fat. You can still wear your size proudly. You’re just doing some remodeling. Aprons serve no purpose, there’s no way to make them attractive, and most of all they are downright injurious to your back, spine, pelvis and internal organs. I think you’ll feel so much better without it. And you’ll still be Del, someone of size to celebrate! I’ll be sending positive energy your way, for sure. I hope it all goes as smoothly as possible for you and everyone involved.

    I hope you don’t mind me saying all this personal stuff, I barely know you. You put enough of yourself out there that I find myself caring about you 🙂 Wishing you health & happiness!

  5. Jodi (leatherfish) said,

    I am fat, and at one time had a large pannus. I started getting severe skin infections underneath it and was told that I needed a panniculectomy to stop the infections from occurring. It was very difficult for me. I was and am a vocal supporter of fat acceptance, but I definitely felt shame on two fronts. I felt shame that I had “allowed” myself to get so fat that I needed such an operation, and I also felt shame that I was being anti-fat by having the surgery. I had friends in the fat acceptance movement that I was ashamed to tell about the panniculectomy. I had some people react negatively when I told them about it. I also had “regular” friends and relatives that I was also ashamed to tell. My situation was not helped by the fact that I got MRSA in the incision from the surgery and had to have a lot of flesh removed, which left me with a scar that I am much more ashamed about than I ever was about my apron. I had reached a sense of acceptance about that and felt comfortable being nude in front of people. But the scar is something I still feel uncomfortable revealing to people or having touched. Sometimes I even feel like it is punishment for the tiny bit of vanity I felt at the idea of getting rid of my apron. I know that that’s crazy. On Wednesday I had knee surgery and they asked me what other surgeries I had, and I had to tell them about the panniculectomy. Every time I have to mention it, I am embarrassed. Even though I know I shouldn’t be. Even though I would certainly tell you not to be ashamed.

    On the other hand, having the apron removed has made a big difference in my life as far as access and the lack of skin infections. So even despite everything, I am glad I made the decision to have the surgery.

    I don’t know if this is helpful to you, but I just wanted you to know that someone else has gone through similar feelings. I wish you the best possible outcome and peace and ease with the upcoming proceedure and I’m happy to discuss the panniculectomy if you want to talk to someone who’s had it.

  6. Moira Parham said,

    I am a huge fan of this site – http://healthateverysizeblog.org/aboutus/ , and in general the idea of “Health at any size”, whatever that size may be. I think the focus should be on what makes you better, period. It just seems to me sometimes that because a majority still will say “oh you should be thinner”, that the fat community sometimes then has this kneejerk-like opposite reaction to thin people that they should be fatter, or if you’re fat and then do something to become thinner (for whatever reason) that this is some kind of betrayal.

    IMHO – anyone that shames you for just trying to be healthier needs to examine if they’re not just giving off the same ‘shame’ edicts that the majority gives to fatter people, in reverse. This is not at all a cosmetic procedure, not for you.

    On top of that – as you pointed out, it’s not like this is going to suddenly take you to a size 8, far from it. It will hopefully slightly improve your life and make you less infection prone. I think that’s the only thing that should matter here, not size.

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