I feel weird taking credit for this one. It jumped into my head fully formed, more like remembering a song you’ve heard or a dream you just had than writing something. But it expresses something important about the world. I don’t usually write couplets, so that’s weird too, but it is what it is.
In my last post, I discussed the way food and water are medicalized when you get them through a feeding tube. But the way I discussed it could’ve given the wrong impression. I discussed it mostly in terms of its emotional effects. The way it changes your relationship to food. The absurdity of having to argue with doctors about how much water you’re allowed to drink. When you have no medical reason for fluid restriction or any other actual excuse for them to act like they have a right to control something so basic. The importance of eating food that you enjoy, even if you’re eating it through a tube. The importance of food being emotional, sensory, cultural, all kinds of things besides medical.
But in all of that discussion, I never discussed the most sinister part of food and water being considered medical.
When food and water become medical treatments, they become optional. They become something you can refuse. They become something a doctor, or an ethics committee (what an Orwellian name, given the way they so frequently treat disabled people), can decide is futile or unnecessary or medically inadvisable or something else along those lines.
In other words, when food and water become a medical treatment, then it becomes much easier to kill you by withholding them.
I filled out a living will awhile back. Living wills are disturbing in all kinds of ways that most people don’t appreciate. Most people see living wills as a wonderful way for people to indicate their future choices about medical treatments. Most people don’t see the ways they’re set up to make it much easier to choose death than to choose life with a disability. And to subtly nudge you in that general direction. They’re not the value-neutral documents most people assume they are. They already have values built into them that may not be the same values as the person filling them out.
I could obviously go on at quite some length about living wills. I’m not going to do it here though. I want to talk about something very specific.
The structure of the living will I filled out basically went like this: “If you needed this treatment in order to survive, would you want to die?” The part that goes this treatment starts out with fairly noninvasive stuff. And progresses through a series of medical treatments, in order from what the creators of the document consider least drastic to most drastic.
Anyway, the first treatment I remember having to answer questions about was a feeding tube. Which does make sense within their structure: Feeding tubes are pretty noninvasive and completely reversible.
But it disturbs me.
It disturbs me that a feeding tube is considered something you should have to decide whether to live or die about.
It disturbs me that food and water are medical.
Because that’s where it all starts.
Where food and water are medical.
Mouth Magazine reported once on a woman who’d had a stroke. She had a living will saying she wouldn’t want continued medical treatment if she had brain damage. She changed her mind once she had brain damage. She wasn’t considered competent to change her mind. They decided food and water were medical treatments — in her case, she didn’t even need a feeding tube. She tried desperately to get food and water, but they prevented her from doing so, saying they were honoring her wishes and that she was incompetent to make her own decisions.
Mouth Magazine had this to say about itself at one point:
During the last ten years, it is fair to say, Mouth has lowered the level of discourse on the subject of the helping system. About time, too.About Mouth Magazine
Mouth brings the conversation down to street level, where well-intentioned “special” programs wreak havoc in the lives of ordinary people. People talk about calling a spade a spade. We call Jack Kevorkian a serial killer. And when maggots outnumber nurses’ aides at what others call a “care facility,” we call it a hellhole. We say it out loud: if special education is so darned special, every kid in every school ought to have the benefit of it.
In that spirit, I will call what they did to that woman exactly what it was: murder.
All the bullshit about honoring her wishes is bullshit. She clearly wanted to be alive. To declare someone incompetent to decide they want to survive, to declare someone incompetent to fucking change their mind… that’s some high-order bullshit. Dangerous bullshit. Deadly, murderous bullshit.
And this bullshit, and this kind of murder, happens daily. One person I know who worked in the medical system said the disturbing thing to her was that she was complicit in at least one murder without being aware of it. Because of the ways they warp your thinking to make it seem like something, anything is going on other than the intentional killing of another human being.
Except it is the intentional killing of another human being.
And often, it starts with the medicalization of food and water.
Food and water are not medical treatments.
Food and water don’t become medical treatments just because they take an unusual route into your body.
A feeding tube is just like having another mouth. It’s just that the mouth is located in an odd spot. That’s all it is. It’s a mouth that opens directly into your stomach or your intestine, instead of going down your esophagus first. (Then there’s NG and NJ tubes, which do go down your esophagus, but they’re still just another slightly unusual route for food to take into your body.)
There is nothing about a feeding tube that truly makes food and water medical treatments.
There is nothing about disability, including brain damage, that truly makes food and water medical treatments.
This reclassification exists in part to make it easier to kill us. Not that every single person who medicalizes food and water has that in mind. But that’s part of the point behind the reasoning’s existence. And even when it’s not initially intended that way. Anyone who wants to use it that way can easily just pick up the situation and use it in exactly that way. Once food and water become a medical treatment, starvation and dehydration become withholding medical treatment rather than starving or dehydrating someone.
You can’t even have an honest conversation about the issues involved here, when everything’s replaced with a medical euphemism. Because we’re actually talking about murder (the intentional killing of another human being) and suicide (someone intentionally killing themselves). And you can debate the ethics of murder or suicide in various circumstances till the cows come home. But you can’t even hold the debate in an honest or straightforward fashion when murder and suicide or even just killing are replaced with withholding medical treatment.
And when food and water are only considered medical treatment for a certain class of person (usually some subgroup of disabled people), I call that deadly ableism.
So medicalizing food and water is never just an annoyance or nuisance. It’s like a weapon: Someone can absentmindedly carry it into a room and leave it lying around for some reason that has nothing to do with killing. But then someone else can pick it up and seriously injure or kill you with it. So it’s never not sinister, disturbing, and dangerous.
And that’s important to always keep in mind: Once something fundamental to survival is considered medical treatment, it can always be withheld much more easily without raising many eyebrows. Hell, people who advocate withholding it can paint themselves as champions of your human rights rather than people trying to prevent you from exercising your human right to, well, food and water. It makes it way easier to turn everything on its head without anyone noticing what’s going on.
I haven’t hit on exactly the right foods to eat, yet, or maybe the right amounts. But what I’m eating is both so much better for me than the Nutren was, and feels so much better, that I wanted to tell people what my current set of foods generally looks like. Note that I am not telling anyone else what to eat — what food works for someone varies so much by person, culture, and circumstance that I’d never presume to tell anyone else what they ought to be eating. Plus it’s much healthier (and happier) to not worry about food too much than to spend all your time freaking out about whether you’re eating the ‘wrong’ kind of food or not.
So there’s several elements that go into most meals. I don’t eat the exact same thing every time though. I sort of have an overall category, and then I can pick and choose what I want from within that category. So generally my food looks like this.
Food (combo of something from each category put into high-powered blender with water, then chinois, then feeding pump):
- Beans: Black beans, black-eyed peas, lentils, split peas.
- Texture vegetable: Squash (any of a huge number of kinds), sweet potatoes
- Green vegetable: Spinach, collard greens, peas, asparagus
- Fat: Olive oil, flax oil, avocado, guacamole, coconut milk curry, etc.
- Seasoning: Soy sauce, Sriracha, fish sauce, assorted kinds of chili peppers, spices, sauces.
- Other things: Mushrooms, seaweed, rice, sunchokes, assorted veggies.
Drinks (usually put directly into feeding tube with a syringe, sometimes put in feeding pump):
- Coconut water
- Tea (mostly green or oolong)
- Powerade Zero
We started calling certain vegetables texture vegetables because at first we were so focused on getting me enough beans, that the texture of the resulting soup felt and behaved like cement once it got into my guts. So we found that adding squash or sweet potatoes got rid of some of that cement quality. Not that that’s the only reason I’d eat squash or sweet potatoes, but that was definitely the original purpose they served.
Anyway, while this is far from perfect, it’s so much better than eating Nutren, and I’m satisfied with it more or less. I also like that unlike Nutren, I can vary foods within each category very easily. So I get more of a variety in my food than I did on Nutren.
I’m not a vegetarian and have no desire to become one. But my food ends up being mostly vegetarian for a couple reasons.
One is just that I prefer vegetarian foods most of the time. Not for ideological reasons, but I just like it better than meat. With notable exceptions usually involving hot pastrami sandwiches.
The other is that since I’m fed by J-tube, my food takes a long time to get into my body. That means it’s sitting out in a feeding bag for hours while it goes through a feeding pump into my body. Meat goes dangerously bad faster than, say, beans. So hanging blenderized meat in a feeding bag is usually more hassle than it’s worth.
But I do use meat or animal products in limited ways. Like I’ll fry mushrooms in fish sauce. And if there was a nutrient I was missing that’s most easily found in animals, I would have no problem supplementing with an animal product to get that nutrient.
Also, I do like my food to taste good. I always make sure that the soup (what I call the resulting liquid that happens after you put all these ingredients in water in a high-powered blender and then strain the results through a chinois) is seasoned in a way where I’d want to eat it even if I was eating it by mouth. Bonus points if I can convince people with functioning stomachs to eat it on purpose.
I swear that matters. It matters that the food smells and tastes good, even if I never smell and taste it beyond the taste test at the beginning. I don’t know if that has any medical benefit, but you don’t just eat food for the medical benefits. You eat food because you like it. And making my food enjoyable really frigging matters. It matters for both disabled and nondisabled people: You should like what you eat, when possible. And that shouldn’t have to change just because you’re fed through a tube.
One thing that I really hate about being tube-fed is the fact that my food is treated as a medicine and eating is completely medicalized. The Nutren is listed in my medical file as medication, not food. Regulations state that I need a note from my doctor to allow Howard Center staff to put blenderized food into my feeding tube. Which has to do with the nurse being able to keep her license — she finds this all as absurd as I do.
When I’m in the hospital, how I get water or coffee has to be written up by doctors. If I disagree, I am not technically allowed to, say, vary the timing of water flushes during tube feeds. I have to argue with a doctor about water because it’s suddenly a medical treatment rather than just drinking water. And I have no medical reason for fluid restriction, so they don’t even have that excuse. It’s entirely because the water goes into a tube rather than into my mouth, even though it’s getting to the same place in the end.
Anyway, one of the biggest antidotes anywhere to seeing food as medicine, is to prepare the food for the blender in the same way you would prepare an actual meal. You want it to taste good, or smell good. You want it to be something you’d be willing and even eager to eat if you were eating it orally. These things aren’t trivial or afterthoughts. They’re a serious and overlooked part of being tube fed.
I don’t think it’s generally a good idea to ignore this and pretend like your food is a some kind of laboratory experiment. There’s nothing wrong with eating a feeding formula if that’s what works for you, but if it doesn’t work for you, or you’d just rather for whatever reason use blenderized food? It’s important where possible that the food be enjoyable and not just a chore you have to get done. Or at least, that it not be actively unenjoyable. Food is not just physical or medical. It’s emotional and cultural and lots of other things. You ignore that at your peril.
Anyway, I’m looking forward to my nightly tube feeds instead of dreading them like I used to. That in itself is a good sign. In the end it doesn’t entirely matter (except between me and my doctors) why Nutren made me so physically miserable and the food I’m eating now doesn’t. What matters is that I’m eating food I enjoy and that I seem physically much healthier this way. And that I’ve found a way to make it work even with a feeding tube.
I’m watching a documentary about robots.
And it reminded me of a dream I had a long time ago.
Not a particularly important dream, just a cool dream.
In the dream, I was in a city. Not sure what city, but a large city. Kind of sprawling like San Jose, California, where I grew up. But definitely not San Jose or any other city I’ve been to in real life.
Anyway, in this city, there were robot kittens.
They did not look like this robot cat, which I had as a kid:
Anyway, the kittens in the dream: They were tiny. They were clearly robots, they made no attempt at being realistic. So they were usually shiny, plastic, and a combination of white and some other color. (Sometimes a color a cat would be, sometimes something like blue or purple.) They were also completely adorable.
They didn’t look quite like this, but these modern toys are much closer to what was in the dream than my Petster:
Anyway, these robot kittens made their way around the city without really being noticed by a lot of people. People expected them and got out of their way, but they did a pretty good job of staying out of poeple’s way.
Except the person they were going to.
Because these were delivery kittens.
And each kitten delivered a small amount of food to someone who needed food right then.
And it could be that you had no other source of food.
But it could also just be that you wanted convenient food delivered to you quickly.
Or that you couldn’t be bothered to cook right then.
Or that you were disabled and found cooking and meal planning and all that too difficult.
The kitten delivery service didn’t care why you needed food, they’d just give you food.
The kitten would find you, open up a hatch on its side, and there would be your food.
And then once the kitten was assured you’d gotten your food, it would go on its way back to wherever the delivery kittens go when they’re not out delivering food.
See, in this city, and presumably in the surrounding culture, food was considered a human right. Everyone took this as a given. That’s one reason they didn’t differentiate between why a person wanted the kitten delivery service. The kitten delivery service was completely subsidized and it was anyone’s right to use it for any reason at any time.
Imagine that. Food being considered a human right. And being delivered discreetly to anyone who wants it for any reason, by a small army of robotic delivery-kittens.
Holy crap, the world we live in…
So I’ve been struggling to keep my potassium at normal levels even with supplements. I’m losing fluid continuously out a hole that has to wait a long time to close naturally. Combined with the fact I had cellulitis and ended up on antibiotics (yeah this surgery has sucked donkey balls with the complications, it was a simple surgery that went awry in a million ways) which did… things… to my digestion, I’d been losing so many fluids I went alkaline and all my electrolytes ended up askew because of that. Even after the antibiotics stopped, still losing lots of fluids, still going alkaline. (I have other risk factors for that but never actually go alkaline except when losing a lot of fluid.)
So my potassium was going low and staying low. Not as low as it’s been in the past. No stopping breathing, no seizures, no lab results marked “LL” for super-low instead of low, nobody telling me it’s critically low like at my last hospitalization. But low potassium is too low potassium, and even with supplements it wasn’t staying up.
The nutritionst learned I like to go to the cafeteria and grab things like V8 to get some nutrients that aren’t in my tubefeeds. She thought this is great. (She seemed thrilled to have a patient whose main food craving is vegetables. She must not get that a lot.) Anyway she told me that they wanted to see if adding food sources of potassium would help me in addition to the supplements So she gave me a list of high-potassium foods, which happened to mostly be foods I was already getting. She also said I should try kombucha as a probiotic because it’s easier on my guts and on my tube than yogurt. I’d never heard of kombucha but it is easier to digest and it smells good.
And she also gave me this nifty pass that allows me to buy anything in the cafeteria for free as long as I am a patient here!
So I go in there and the highest-potassium food in the cafeteria is coconut water. Which comes in the most ridiculous hippie-oriented packaging. So I’ve been stocking up on coconut water, kombucha, V8, and whatever other random liquids they have that are on her list. But mostly coconut water because it has the highest potassium.
And it works, my potassium is up.
But I feel ridculous someimes with my cafeteria tray filled to bursing with hippie food:
But my potassium is up and indeed this morning my electrolytes were totally within normal range for the first time since I got here. So the hippie food works!
So I guess I will be eating lot of hippie food for a while. If the hydration and potassium help keep me out of alkalosis, I’ll eat damn near anything.
But the hippie food… wow. My friend wanted to go to the gift shop and get me some kind of stereotypical hippie items to go with my new food preferenes, but she couldn’t find any tie-dyed scarves or anything so she gave up. She has been attempting to tell me that my plan to eventually create a prebiotic and diabetes-friendly vegetarian diet using regular food (i’m high risk for diabetes because steroids and my tubefeed diet is not good for that, and the prebiotics help prevent c diff which I’ve gotten already this year and am high risk for, meamwhile vegetarian because easier to hang in feed bags without worrying about rapid spoilage) proves that I have been a closet hippie all along who believes in natural organic everything and thinks my food choices make me one with the earth and karma and all sorts of ridiculousness. (She gets very elaborate with her teasing but it’s all friendly.)
But in this case the hippie food is working, so I’ll put up with any jokes. I find it kind of funny myself.
SERIOUSLY look at the packaging on that coconut water…
I just got over a gnarly C Diff (clostridium difficile) infection that lasted from approximately November until May of this year. Here’s a link to the Mayo Clinic’s page on C Diff if you want to know more about it. It wreaked havoc with my health, including my ability to absorb the steroids I depend on for survival, and I was away from home then hospitalized for a long time. I had thought C Diff was something you got only from antibiotics or contact with an infected person. I didn’t know I was at risk from other factors, especially being tube fed nothing but formula. I was wrong. I want to tell you about the risk factors that exist, especially in tube feeding and how to prevent that.
This is gonna be a little long, but there’s a bolded section at the end that basically tells you which nutrients you need to add to your diet to be more protective against C Diff if you’re on an elemental tubefeeding formula as your main source of nutrition.
The biggest risk factor for C Diff is frequent contact with the healthcare system. Antibiotics are a risk factor. So are some other medications such as acid reducers, which I have to use in large quantities because of my gastroparesis, reflux, and aspiration risk. But the one risk factor that intrigued me the most, because it fit with the onset of my symptoms, is being tube fed nothing but a tube feeding formula without supplementing it in certain ways.
All of this is reputable science, by the way. This isn’t some kind of fringe thing. So we all have little symbiotes in our bodies. That’s symbiotic bacteria that live in our guts and often help us out with all kinds of things you’d never expect. Some of our symbiotes help protect us against C Diff. I know this may gross some people out. I think it’s amazing and cool that we have little symbiotes living inside us and helping us. I want to keep my little symbiotes healthy and happy. But I might be a very strange person, I admit.
Here’s an excellent overview from the World Journal of Gastroenterology: Tube Feeding, the Microbiota, and Clostridium Difficile Infection. So basically there’s a lot of risk factors involved with tube feeding elemental formulas, like the Osmolite that is my main food. One of those us that the elemental diets seem to feed C Diff pretty well on its own. But one of those risk factors is that the elemental formulas don’t contain some of the crucial nutrients that feed the symbiotes that protect us against C Diff in the first place. And that is something you can possibly change even if your main diet still has to be an elemental formula.
I got a high-powered blender many years ago because I was having weirdly intense and specific cravings for vegetables. I got a Blendtec, other people might get a Vitamix or similar. These blenders are expensive, and mine was a gift from a family member, but they are the only way to blend down food well enough to safely pass through a J-tube. In addition to a blender, I got a chinois (a kind of heavy-duty strainer), which lets me filter out any remaining tube-clogging residue while pushing through as much thick stuff as I can. I have had no problem getting the resulting blends down my J-tube as long as I blend thoroughly and use the chinois vigorously.
Anyway, I started supplementing my Osmolite diet with blended vegetables. I just went with whatever vegetables I seemed to be craving. And they were oddly specific cravings sometimes. I’d never eaten sunchokes in my life, and suddenly I was eating sunchokes constantly. There turned out to be reasons for this most of the time. My symbiotes must’ve been yelling “We’re hungry! Feed us!” in whatever way they knew best. When I added the blenderized vegetables to my diet, I felt a strong sense of well-being and my doctors told me there are nutrients in vegetables that we don’t fully understand yet. So they were fully supportive in what I was doing.
My developmental disability services agency had people in it who were helping me cook these vegetable meals. We’d basically cook the vegetables as if it was a regular meal, then stick it in the blender with some water, then strain it through the chinois. I know a lot of people compare these sorts of things to baby food, but I honestly think a better comparison is soup. So I just called it vegetable soup. And then I would periodically put small amounts of it down my J-tube using a feeding syringe, although you could probably use a feeding bag and pump if you did it right and made sure it wouldn’t clog any tubing.
Anyway, at some point the guy who was doing most of the cooking quit to take a different job. And my access to vegetables started getting more patchy. I think the agency thought that because I was on Osmolite already, food prep for real vegetables was a luxury. We were all about to find out how wrong that was.
I didn’t connect it to the vegetables, but for a month or two of less vegetables I was feeling lousy and telling my doctor something was going wrong in my body that was gonna bite us in the ass if we didn’t work out what it was. I didn’t know I was gonna get the butt plague, mind you. I just have a good instinct sometimes about things going wrong in my body. Without further information, though, we couldn’t find anything wrong.
So the vegetables stopped around September. By November I had nasty diarrhea every day. Like shart-level diarrhea. Leading to both yeast infections and bacterial infections of the vagina just for extra fun. There’s no pretty way of describing it. The butt plague is a nasty, nasty thing.
I’ve always had some absorption issues, but the C Diff kicked those into high gear. My absorption of my meds, including steroids, became erratic. Understand: I make no cortisol in my body at all. You can’t survive without cortisol. Not being able to absorb my hydrocortisone properly or consistently played havoc with my entire body and health status in ways I couldn’t comprehend. And that’s besides the ever-fluctuating levels of seizure meds and other things that shouldn’t fluctuate.
Dehydration was obviously an issue. The dehydration kicked into high gear one week when I got about half the developmental disability staff hours I’m supposed to get, mostly through subs who didn’t know what they were doing, and didn’t get any extra water for several days. I nearly passed out, had trouble breathing, had to raise my steroids just to be able to breathe. Wildly inconsistent steroid levels even with the high doses resulted in swinging from too much to too little steroids on a dime. It got dangerous. My body temperature started going outright hypothermic (94.3 was the lowest), I had more diarrhea because low cortisol levels will do that, and when my steroids were high it suppressed my immune system and allowed the C Diff to flourish even more. It was loads of fun.
At some point I gave my doctor the Bat Signal (“I’m gonna die, this is not a drill”) and he found the C Diff quickly. The antibiotics worked and then suddenly didn’t work and I was hospitalized. I’d already been living away from home about a month at that point due to a combination of being unsafe living alone and being too stubborn to go to the hospital. (They tried to get me to go to the emergency room for about two straight months before I allowed someone to call 911.) I got really weak from a combination of dehydration, adrenal insufficiency, and congenital myasthenic syndrome, and realized I was going to pass out or fall (I have severe osteoporosis and broken bones can trigger adrenal crisis) or shit on my friend’s floor or something, so I let her call an ambulance. I was hospitalized immediately and stayed several weeks.
In the hospital there were two or three main issues to sort out. One was the C Diff itself. Another was my steroid situation. So we discovered the inconsistent absorption and I was put on steroids through my chest port instead of my feeding tube. This vastly improved things. But I was still on a much higher dose than I should’ve been. It turns out that some of my meds might affect the metabolism of steroids.
But more importantly, I probably have an additional medical condition that can come along with adrenal insufficiency (and also two other things I have), and that responds to steroids. It makes my heart race and I get out of breath when I stand up sometimes. So I’m still on an ungodly dose of steroids — transitioned back to getting them through my gut, at least, though — which puts me at continued risk for C Diff among many other nasty things. My severe osteoporosis (I’m 37, I’m told my bones are more like 95-115 depending on the bone, I’ve broken ribs by sleeping on them wrong and have a stress fracture in my spine nobody knows where it came from) is partly from the steroids. I’m at high diabetes risk. Steroids are the most dangerous meds I take and the most necessary meds I take. It’s an ugly balance to have to strike. There are no good answers and for many people with severe adrenal insufficiency it’s the steroids that keep us alive that ultimately shorten our lifespans.
Anyway, the most important thing for you to know are which nutrients your symbiotes need that you’re not getting in an elemental formula like Osmolite or Nutrin. There’s basically three important ones, although I’m sure there’s plenty of others:
- Insoluble fibers
- Resistant starches
You can look up which vegetables contain the most of those nutrients, and figure out how best to get them for yourself. Remember those sunchokes I was craving all the time for no apparent reason for the first time in your life? Sunchokes turn out to have more oligopolysaccharides than any other vegetable on the planet. Yeah, my symbiotes have me well-trained, I guess.
So definitely look up which vegetables you can get those things out of. And then I’d say go with a combination of that knowledge and what vegetables feel right to be eating. You might not have that this just feels right thing and that’s okay. But if you do, run with it. Every vegetable I was craving (and they were weirdly specific and intense cravings) turned out to be high in at least one of these three nutrient types. Your mileage may vary. And always check out the actual scientific information on these vegetables, your instincts are no substitute for that. But my gut instinct (no pun intended) turned out to be shockingly accurate, and you might find the same.
My doctors, for what it’s worth, are 100% supportive of my efforts to get vegetables back into my diet by any means necessary. They agree with me that this was a major risk factor in my getting a C Diff infection. And once infected, always at risk for the rest of my life. So this is a very important thing to try and prevent, even if you seem to have no symptoms. C Diff can be dangerous, is highly contagious (I was on isolation protocol my entire hospital stay even after I got over it) and can be resistant to antibiotics. Even healthy people are turning up with C Diff these days. Trust me, C Diff is something you absolutely do not want if you have any way of preventing it.
So if you remember nothing else from this post, remember those three nutrients:
- Insoluble fibers
- Resistant Starches
Find ways to get these things into your body if at all possible. Keep your little symbiotes happy, they need you and you need them, that’s how symbiosis works! And if your symbiotes are happy, you’ll likely be happier (and healthier) too. And stand a better chance of fighting off the Dreaded Butt Plague.