Post-Surgery Update: Part 2

I’ve put this off for a while, partly because my feelings about the aftermath of the surgery are complicated, and partly because some of the fallout is still going on.

Once the drains were out (which normally takes two weeks, but for me took a month), I thought things would finally begin to heal. I was wrong.

The first indication of trouble was that the intersection of the two huge incisions on my stomach began to open up. First it was a tiny hole, then a series of tiny holes, then one big hole, leaking yellowish/greenish fluid (there is no better color to say “this isn’t a good thing”). The surgeon thought it was pseudomonas, a fairly common post-surgical infection normally cured with the antibiotic Cipro. I took the Cipro for ten days…nothing. Another ten days…nothing. Another ten days…nothing.

By this time, I had moved. Going to my surgeon’s office twice a week for him to look at me for five minutes and swear I was getting better wasn’t an option anymore. I went to my regular doctor, who cultured the wound (which had now become three wounds at different points along the incision). It turned out to be actinomycosis, an infection so rare that neither my regular doctor nor my surgeon had ever seen a case of it. I was referred to an infectious disease specialist, who confirmed the diagnosis. The treatment is a LONG course of penicillin.

It’s the end of July now, so it’s been nearly six months since my surgery. I’ve been on penicillin for two and a half months, and I’ll be on it for at least another four months. Probably longer. The infectious disease specialist said that actinomyces is a really slow-growing bacteria, but that means it’s also slow to cure. And it’s hard to tell how things are going – the disgusting discharge has slowed, but I now have about twelve open wounds across my lower stomach, with new ones opening up occasionally.

Was it so bad?

There are so many things about this surgery that didn’t turn out the way I was hoping. The first is that I had specifically asked my surgeon to remove my belly button. There’s a complicated reason for this that I won’t go into here, but I made myself very, very clear. He ignored me. What I have now is a wrinkle of skin a good 4″ higher than my belly button should be, in the middle of a bunch of other scarring. It looks like what it is – a mistake. The second is that the loose skin I thought he would remove from the backs of my thighs is still there. My buttocks look like deflated balloons. And the disgusting, leaking, yellowy-green cherry on this botched meat cake is the line of open wounds along my lower abdomen.

I know far more about wound care than I ever thought I would. There’s now a shelf above my dresser that’s full of nothing but combine pads (they’re thick, 5″x9″ surgical pads), surgical sponges (normal people would call them gauze), and prescription antibiotic spray. The amount of medical waste I generate is embarrassing, because the wound dressings have to be changed at least twice a day, and medical stuff is all individually-wrapped for sterility.

All this drama has meant that it’s taking me a lot longer to process the emotions than I think it should have. I’m finally coming around to feeling okay about how I look in clothes. It’s still a surprise to me that I now fit in easy-to-find, off the rack clothes, and post-surgery, they fit the way I expect them to. It’s now been nearly three years since I had my bariatric surgery, and I haven’t experienced the weight rebound a lot of people experience. I weigh myself daily, and it’s been within a few pounds for the last year and a half. My bariatric surgeon, my regular doctor, and my other surgeon all say this bodes very well for my long-term success. So, that’s a victory.

I wonder how long it’ll be before the good feelings outweigh the bad regarding this whole exercise. We’ll see.

Moving the Needle

You’ve heard me say it before – the rules regarding diet and exercise are different if you’re fat. How many times did I exercise until I injured myself and diet until I felt faint, only to watch the scale fail to move, or worse, go up? Even my husband, who truly believed the “just make calories in less than calories out” lie, couldn’t believe it when I showed him that at the end of a week, the scale had crept up another two pounds.

Cut to now. For the last few weeks, my weight has settled into a range between 142.5 and 144.5. I weigh myself every day, and on those days I’m toward the top end, I limit my carb intake and when I’m at the lower end, I don’t worry about it. I always keep in mind the advice I received before surgery: Stop eating when you lose interest, not when you’re full.

Then came a day when I realized that I had eaten my normal yogurt breakfast, then a dozen graham crackers between breakfast and my lunch salad, then jellybeans until I had a whacking sugar headache. What the hell was I doing?

I needed to figure out a better way to deal with that cycle, otherwise I’d be right back where I started.

First, I stepped back. What’s going on with me? We’ve had some stressful uncertainty lately, and I realized that the stress was making me eat too much of all the wrong foods.

Second, I talked to someone about my anxiety. I admitted that I was terrified of having to move again, knowing that we would likely move to a place that was smaller and less well-situated. I was losing patience and hope about the rebuild – everything is taking months longer than it should. And also, I need to buy a formal for some upcoming events, and I’m terrified that, given my history, I’ll buy a dress and by the time I need it, it won’t fit.

Third, I took the time to address the sources of the anxiety. I increased my depression medication. I wrote to my county supervisor about the permit situation. I signed a lease for another year on this house, with the understanding that we may leave sooner than a year (but no sooner than 7 months). I know that I am exercising every day, with Sundays off. I acknowledged that I have the support of my family in eating a healthy, balanced diet, so there was no reason for my weight to go up.

Fourth, I took a day off. I have the privilege of not having to work, so I slept in. I took my time over my morning tea. I sat on the couch watching crappy television and doing crochet. I let the mental break sink in and remind me that nothing is on fire, nobody’s bleeding, and we’re not going to be thrown into the street tomorrow. I am fine.

After my day off, I had my normal routine: wake up, weigh myself, hit the stationary bike. When I stepped on the scale, my weight was down half a pound from the day before – down to 143.2 – still in the good range.

Back when I was nearing 250 pounds, this would be about the time that the scale would have started creeping up, not just because I would have been stress eating, but because my metabolism was trying to protect me from the danger by hanging on to every calorie. I would panic, exercise like crazy and stop eating in an effort to lose weight and when it backfired, I’d say “Fuck it, it’s futile, I may as well have some pizza.”

Now, even modest changes will move the scale in the direction I want it to go, and when that happens, I feel encouraged and continue to drink a lot of water, snack on fruit, and get on the bike every morning. I feel that I cannot say it often enough: weight loss works differently for fat people vs. thin people. As of this morning, I’m at 141 even.

Big, Fat Lie

A while back, I wrote a post looking back at my bariatric surgery a year ago, and thinking about how my life has changed. That post got some attention, mostly by other health and lifestyle blogs. The conclusion I came to in that post was that, although there have been some lifestyle changes since the surgery, the weight loss was worth it.

Image of me in May 2019 weighing about 245 and image of me in January 2021 weight 145.
What a difference 100 pounds makes! Not surprisingly, I don’t have any full-body pictures of me from before.

I feel like that message might have been misleading. Yes, the weight loss has meant that a lot of things have gotten easier for me (exercise is easier, finding clothes is easier, social interactions are easier), but it’s important to be clear: this wouldn’t have happened without surgery.

Everyone will tell you that the way to control your weight is through diet and exercise. What they don’t tell you is that this advice only works if you have a “normal” metabolism that predictably burns calories as they are consumed. With the metabolism of a young, fit, healthy person, if you have a temporary imbalance of intake vs. output, you will have an equally predictable weight gain or loss, which is easily remedied by paying a bit of attention to your diet or exercise regimen.

If we’re both digging holes and I have a backhoe and all you’ve got is a spoon, it’s not your fault that I’m making better progress than you.

Lise Quintana

But there are a million things that affect metabolism, including long-term dieting, aging, certain chronic illnesses, lifestyle, and heredity. And once your metabolism starts to change, there is a cascading set of changes that reinforce it, like the production of the hormone that controls hunger and the hormone that control satiety.

It’s absolutely possible to use diet and exercise to get from morbidly obese to a “normal” BMI, those things won’t change your metabolism, and won’t change your hormones, which is why almost everyone who loses weight through diet and exercise fails to maintain that loss.

When I talk about surgery changing my life, I don’t just mean my behaviors and experiences. My body chemistry has changed. My metabolism is back to that of a fit, healthy person, the hormone that causes me to feel hunger has been curtailed, and the hormone that tells me when I’m full has ramped up. These are fundamental changes that mean that I stand a much better chance of maintaining a lower weight than I would have if I just dieted and exercised.

I say all this because I don’t want people reading about my weight loss to feel bad about themselves because they’re not achieving the same result. If we’re both digging holes and I have a backhoe and all you’ve got is a spoon, it’s not your fault that I’m making better progress than you, and it doesn’t make you weak, or a failure, or lazy.

The fact that I lost weight doesn’t mean I’m a better person than I was before. What I really want is for people to feel good about themselves – worthwhile and lovable and comfortable – regardless of their weight, shape, or lifestyle.

Removing the Frog’s Nervous System

My life recently has been defined by three things: losing about 100 pounds, losing everything I owned in a fire, and discovering that I’m on the autism spectrum.

  • Thinking about any aspect of my life, I bump up against those three things. Perhaps only two of those things at a time, but they’re always there.
  • How I react to my friends’ rallying around me after the fire: Do they love me because I’m quirky, or because I’m more attractive now that I’m no longer fat?
  • How I replace clothing since I can’t go into a store and try things on: Sure, I’m a “medium,” but what size is that in vintage clothing? At Banana Republic? At Target? And where do I find clothes that suit my very particular taste?
  • How I interact with strangers, who are the lion’s share of my interactions since the fire: Are they being kind, courteous, solicitous because they find me attractive, or because of the huge effort I put into seeming normal?

Since the fire, I’ve been thinking about my life pre-weight loss, pre-diagnosis, pre-fire. I know I’m not the only person in the world who feels that 2020 has drawn a line across my life, which was one thing before, and a very different thing after. What part of that earlier me is still there? How could things have been different?

Without the fire, I don’t think I would ever have had a reason to examine my life in the detail I have in the past three and a half months (as of this writing, it’s been 105 days since we lost our house). On the other hand, I have always been self-reflective, second guessing my every thought word and deed almost before they are completed.

I read a book where two characters were discussing two separate, but intertwined things, and one character expressed the desire to separate them. The other character said that separating them would be like removing the nervous system from a frog intact, and without killing the frog. It can’t be done, and it would be painful and disturbing to try.

I’m driven mad by how unscientific an experiment my life is. I can’t isolate any one of the above events and observe the public reaction from that thing in isolation, and if I were to hand everyone I interacted with a questionnaire that said things like “Which of the following factors was most influential in your interaction?” people would tell me they had the plague as an excuse to never interact with me. Sadly, I’m not smooth enough to figure out how to subtly ask stuff like this without the other person knowing that’s what I’m getting at.

We are each an amalgam. Not just emotionally – composed of every experience we’ve had, sensation we’ve felt, emotion we’ve endured – but physically. Every human being is an amalgam of human bits and a unique group of bacteria and various symbionts that live in our blood and guts, making each person a literal aggregate. So, it looks like going forward, I can’t separate any of the large defining events of 2020 in my experience.

I came into 2020 as an optimistic, fat little tadpole. I go out as a lean, muscular, and quite whole frog.

But Is It Worth It?

Last night, my husband and I were driving along, and he started to tell me something about the weather. What he actually said was “Today broke all kinds of records—” but I cut him off. I just lost my house to global climate change. I don’t need to be reminded that it’s real, that it’s bad, that it’s getting worse.

Right after the fire, everyone asked me whether we were afraid of rebuilding, and I glibly told them “I’m not worried about fire. There’s nothing left to burn.” At the time, I believed that. My brain needed something hopeful, something optimistic to hang onto. I don’t know if I believe that now.

Politics is getting ugly. The Republican party in California has admitted to putting up fake “ballot drop off” boxes, an attempt at election fraud. The man who sits in the White House is on television calling for racist militias to ensure that he doesn’t have to leave the White House, regardless of the election’s outcome. And that man has not just abandoned environmental regulation, he’s rewarded companies for exploiting what few resources the planet has left (including human beings). The planet is dying.

It will take years to rebuild our house, and in order to get the money to rebuild it, I have to list every single thing that was in the house that burned down. As I list, I can’t help but feel judged. I have too much of too many things. Why did I need sixty assorted candles? Or fifteen decks of tarot cards? Or a dozen music boxes? How could I conscience having all those things when so many people have so little? I will likely not replace those things, but why did I have them in the first place?

I suspect part of my despair is the fact that we’re renting a house is Saratoga, a wealthy Silicon Valley suburb. And when I say “wealthy,” I mean that the house we’re staying in is worth about $3.5 million, and is far from being the largest or nicest house in the neighborhood. As with most suburbs, there are two kinds of real estate: buildings where one buys things, and buildings where one stores and displays the things one has bought. The grounds of every house are manicured, managed, sculpted into a look that is “natural,” with very necessary quotation marks. I haven’t seen a dead animal, a fallen tree, an inconvenient rock formation anywhere. The people are lovely, but it’s like tv. It doesn’t feel real to me.

I’m starting to doubt the wisdom of rebuilding. I’m starting to feel distinctly uncomfortable, not just about rebuilding, but about life. I’m finding it difficult to find a way forward. I’m looking for reasons for, if not optimism, then at least some mental ease.

Thanks For Your Concern

“I just want you to be healthy.”

“You look so uncomfortable.”

“You’d feel so much better.”

I’ve heard it, usually coupled with some kind of advice that I’ve heard a thousand billion times before. Advice like “get more exercise,” “eat more vegetables,” and “drink more water.” I’ve done those things, and was probably still doing them. And I’ve lost weight. And then gained it back. And then lost it again.

And people say those things as though I might not have thought these things myself – as though I hate myself with such intensity that I’m committing suicide by cheese (although if I were going to off myself, that would be my choice).

But they’re not saying it because they’re actually concerned. They’re saying it to signal disapproval without sounding actually mean. “I just want you to be healthy” is code for “I feel disgust watching you eat.” “You look so uncomfortable” is code for “I feel uncomfortable when I look at you.” “You’d feel so much better” is code for “I’d feel so much better.”

But none of these barbs disguised as concern or advice help, because that’s not how it works. If it were as easy as “eat less move more,” everyone in a wheelchair or hospital bed would be obese, and everyone who ate vegetables and exercised would be skinny. But I’ve been obese my entire adult life (with occasional flashes of thin), and I know as well as you do that it’s so much more complicated than that.

Environment is a factor. Hormones are a factor. Psychology is a factor. Genetics play a part. If your family is heavy, you’ll be heavy. My mother’s family is from Scotland, and that side of my family is typically short and sturdily built. We totally look like the kind of people who can throw telephone poles and carry a sheep under each arm. My father’s side of the family are Mexican, and are generally taller and thinner. I started out with a 50/50 shot. Guess which I got (cue sad trumpet).

Long before I even considered surgery, I ate a healthy diet and got plenty of exercise, and seethed whenever someone expressed “concern” about my size. So I just stopped listening. I cordially invited those people who felt the need to comment to shut the fuck up.

If you were really concerned about me, you would tell me you love my dress. You’d tell me you read that story I got published. You’d tell me you think I’m smart. If you really cared about me, you wouldn’t want me to feel like crap about myself by not-even-subtly telling me that you feel bad looking at me. That’s your problem, not mine.

 

 

That Dream Where I’m Not Crazy

It’s been happening everywhere – people’s bodies found at home, at their offices, at restaurants, their brains and hair and blood spattered over every surface, as though they had just burst. The worst part is that the group claiming responsibility is, on the one hand, so disorganized that they have members who don’t even realize that they’re part of a terror cell. How do you feel if you’re a high school kid whose mom has asked her to carry a package to band practice, and that package contains cash, fake documents, or bomb components? Sure, that kid has heard all the rhetoric, but she’s too young to fully appreciate that blowing people up rarely helps anything.

I stumble on something that resembles a Tupperware party. The hostess has brought in a large aquarium with sand strewn with big, fake-looking plastic clams and treasure chests. The aquarium is full of actual sea water, and the guests are pulling things out of the water and opening them to see what prize they’ve won. It’s a decorative hair comb! It’s a jaunty hat! There are men and women there, and everyone’s in that giddy mood that accompanies the prospect of getting something for nothing.

My friends and I come in to see the host’s face temporarily fall, then a mask of smug derision fall into place. “You’re too late. They’re with us now.” We go around the table, confiscating people’s prizes. Some of the people fight us, because even though the prize cost them nothing and has only been in their possession for five minutes, they will feel cheated if it’s taken away. We show them the truth: the hair combs and hats and other baubles are all made of C4 with tiny detonators. It’s not much, but certainly enough to blow someone’s head off. The faces are suddenly pale and much less enthusiastic, swiveling in the hostess’s direction, looking for denial. Her smile hardened and glittered.

We threw the aquarium and its contents into the ocean (conveniently a few feet away), and we grabbed the hostess and threw her in too. She didn’t even try to swim, and I noticed as she sank that her body looked already drowned—bloated and wrinkled and pale.

But now her people are after me. I head into a coffee place to hide, but they’re there. They bought the place not long ago, and are using it as a source of information. People never think of servers as spies, and have unguarded conversations over latte. A woman approaches me, and I know that she’s trying to kill me. So I act like I’m high. I want her to think that I’m incapacitated and will be an easy mark. She’s young, she might buy it. I ask her to direct me to the bathroom, and she takes me in the back down a long hall. I start opening doors off the hall, telling her that they should put in 3-way doors – the kind that can have up to 3 different rooms on the other side of them, depending on how you turn the handle and open it. She looks smug and relaxed, so while she’s fumbling in her pocket for something, I disappear into one of the doorways that leads to an outdoor area. She thought it led into a broom cupboard, but the 3-way door thing is true, and I know how it works. I’m outside before she can follow me, and use my superior knowledge of forbidden physics to step over the patrons’ heads to the outside.

I’m out of her reach for now, but they’re still looking for me.

Gratitude is Bullshit

There is a disturbing trend among liberals to talk about gratitude. Everyone’s encouraged to have gratitude for the abundance in their lives. Everyone’s supposed to be grateful for all their blessings. On the surface, it’s a lovely sentiment. People should be mindful of the fact that they live privileged lives, and use that awareness to inform their interactions with people who are less privileged.

But it never goes that deep. It stops at “be grateful because you have it good.” The new Gratitude encourages insularity – think hard about what you have so that you aren’t thinking about people who don’t have anything. Gratitude is selfish. Being grateful for what you have invites the desire for more – more stuff (more friends, money, recognition) equals more gratitude, right?

This year has been full of horror: while the world was outraged at 12 people killed in attacks on Paris, thousands have died in Nigeria at the hands of Boko Haram. Pakistan is a mess. Syria’s civilian population is fleeing, and many in the United States have insisted they’re not welcome. Here in the United States, Donald Trump has been steadily rising in the polls on a platform of racism, sexism, and xenophobia. Black Americans are being gunned down in the street under laughably thin pretexts, with no consequences to the shooters, despite the fact that those gunned down are unarmed.

Why aren’t you angry? Why aren’t you beside yourself with rage? Because you’re grateful. You’re looking at your pile of Christmas presents and thinking “I’m so grateful.” Maybe you volunteered at a shelter or a soup kitchen as part of your holiday celebrations. Were you angry then?

I’m not saying that you should spend all your time with your teeth gritted and the veins standing out in your neck. I’m not even saying that you shouldn’t be grateful for the good things in your life. I’m just saying that it should never stop there. Feel good about what’s good. But feel bad about what’s bad. Feel bad enough to want to spend 2016 working to change it.

Hailing

I had to drive from Bonny Doon to San Francisco. I’ve taken to driving up the coast road, Highway 1, because it’s prettier, and the loveliness of seeing the ocean on the one hand and the fields and woods on the other makes the drive seem shorter.

As I left the house, I paused to send my husband and my mother a Glympse, a way of tracking my progress so that they would know how long I would be.

I was just coming through Half Moon Bay, halfway between Bonny Doon and San Francisco, when I realized that my phone had stopped sending a GPS signal. I turned it back on, and was on the outskirts of town where one of those temporary highway signs sitting next to the road declared in foot-high letters “All Hail Mother Russia.”

A minute later, the Pirate called and without saying “hello,” launched directly into telling me that the Lantos Tunnel on Highway 1 was closed, and that I needed to turn back and go another way.

“How did you know?” I asked him.

“There was a sign on 280 saying that it was closed.”

“Huh. Why wasn’t there a sign on Highway 1? Oh. Wait. There was a sign. Except it didn’t say that Highway 1 was closed. It said ‘All Hail Mother Russia.'”

I turned around and went back through Half Moon Bay, thinking that unhelpful “Mother Russia” was more like a boozy stepmother who flatters herself that people think she’s 20 years younger than she is. Who wears too much makeup and too-tight dresses, who drinks too much and flirts with her daughter’s boyfriends and her son’s friends, and who wouldn’t remember to tell you useful things, like the fact that the tunnel is closed.

Hyper, Non-Linear, and Plain

I’ve been experimenting in hypertext, and I’m reveling in what it can do, as well as discovering its limits.

I’ve been using Twine to create a hypertext story. It’s part choose-your-own-adventure and part an exercise in figuring out what constitutes a pixel in text (a pixel is the smallest controllable part of a picture on a computer). What’s the smallest meaningful part of a story? It’s not the individual word, because words only take on meaning in relation to one another. I can say the word “bark,” but with no other context, you don’t know whether it’s a noun or a verb. Even as a noun, it could refer to a sound made by an animal, or the covering of a tree, or a type of boat.

One can make a case for the pixel of fiction being the independent clause (a group of words that contains a subject and a verb). The number of microfiction posts on Twitter make a compelling case for sentence as pixel. I believe that fiction on that level functions much like poetry. Writers who work under those circumstances need a strong command of language and have to have a clear vision of the work from the outset. I’ve heard longer-form authors say “I was writing and I the character took me by surprise.” Poets and microfiction authors have to exercise tight control over every word. A word out of place weakens the structure.

But hypertext is different from microfiction. Each piece has to further the story, carry meaning, lead the reader to the next piece. Which means that, although a single sentence can be a node or pixel or whatever you want to call it, it doesn’t have to be.

And, like writing with Lithomobilus, to write decent hypertext fiction, you have to work in multiple threads, possibly in multiple storylines simultaneously. As I’ve been working, I’ve been going back and re-writing parts of it so that they make sense with parts that come after. Making sure the verb tenses all work. There’s only one character, which is fine for now.

And all this is in aid of a much larger project that I might want collaboration on: stories based on tarot cards, but stories that work when the tarot cards are laid out in a pattern. This means writing multiple nodes of text for each card – tens of thousands of pieces of text. It’ll take a while.

Now comes the hard part: figuring out how to share.