:(

One of my photos has a shot of the cover of the book “Thin” (Greenfield, Lauren, David B. Herzog, and Michael Strober. 2006. San Francisco: Chronicle Books), which is a photodocumentary about girls in an inpatient eating disorder clinic. It’s an extremely disturbing book (especially the photos of diary excerpts), and I imagine it’s highly triggering for people with eating disorders. Today it was favorited by someone with “thin” in her flickr user name, and started to get a bad feeling as I went to check out what other images she had favorited… her favorites were all thinspiration.

Book queue, 2007

Today I discovered that people with anorexia nervosa and bulimia nervosa have been posting revealing self-portraits on flickr, showing off protruding bones and disturbingly concave areas… I feel so sad and scared when I look at these photos, not only because some of them are very young, but because there are predatory flickr users making approving sexual comments about these photos, praising the girls for being sexy. It’s the worst combination. You have these people with a mental disorder, suffering horribly, and then you have the sexual predators encouraging them and giving them the attention they want so badly.

A psychologist once told me that in an inpatient psych ward, you’ve got to keep the people who think they’re Jesus separate from the people who are seeking Jesus.

I took some screenshots of a few image/comment pairings that I found, which are behind the links because I don’t want to display them out on my main blagoblag page. I used a mosaic filter to preserve identity and modesty of the girls, but you get the idea. I did not hide the identity of the flickr users who commented.

[1] [2] [3] [4] [5] [6]

The girl in photos 4, 5, and 6 also had posted cell phone pics of herself receiving feeding through nasogastric intubation at an inpatient treatment facility somewhere.

This isn’t a comforting list, because a lot of these symptoms also accompany chronic disease, but it’s better to be aware of them and get them checked out, than to ignore them! If you are prone to ignoring your state of health because you find doctor visits unpleasant, you will just have to get over it– take care of yourself for the people you love and who love you back. If you don’t, I will rap the backs of your lazy-ass knuckles with my medical assistant stick of authority!!

The mnemonic “CAUTION” can be used to remember some early warning signs of cancer: Change in bowel or bladder habits; A sore that does not heal; Unusual bleeding or discharge; Thickening, lumps, or changes in the shape of the testicles or breasts; Indigestion or difficulty swallowing; Obvious change in a wart or mole; and a Nagging cough or hoarseness of the voice.

You should be alert for changes in your bowel habits (for example, changes in the color, consistency, size, and shape of stools) or a change in bladder function. Constipation and diarrhea over a period of time could be a sign of colon cancer. Be alert for signs of blood in the stool (it can appear as obvious red blood, or if the bleeding is high up in the intestines, it will be digested and appear as dark/tarry areas of stool). Blood in the urine looks like reddish-yellow or dark red urine.

You should be alert for sores that do not heal (for example, a sore in the mouth, or white patches on the mouth and tongue). Since cancer cells are not bound strongly to each other, cancers tend to be fragile and bleed easily. Cancers may grow into blood vessels, causing the vessels to rupture. Watch out for blood in your phlegm, stool, and urine.

Gastrointestinal changes can be cancer warning signs. Take note of persistent diarrhea or constipation, difficulty swallowing, nausea, vomiting, unexplained weight loss, pain after eating, or frequently feeling full, even after eating only a small meal. Also take note if you have a persistent cough or hoarse throat, or having trouble swallowing. If any of these are chronic, inexplicable problems, see your doctor.

When looking at skin, keep an eye out for changes in the color, size or appearance of moles, freckles, and warts. Other skin signs that can indicate cancer are darker looking skin (hyperpigmentation), yellow skin and eyes (jaundice), and reddened skin (erythema).

Jen’s primitive nasal speculum, 2007

Summer has been interesting so far. I can’t say that interesting is always pleasant, but… at least I’m finding things interesting in the first place. Even if life is going badly, when I am feeling well-adjusted and highly-adaptable, novelty feels pleasant.

Having known this about myself for a while, I can use it to make a mental check of my emotional state. Depression is something I worry about a lot, having had to drag myself out of it by tooth and nail so many times in the past. If I’ve been wondering if I’m sliding back towards an emotionally depressed state, I can ask myself, “Is novelty pleasurable?” If not, I make a note to keep checking in on myself. I keep Richard informed. If I decide I am actually depressed again, then I have to make that call to my psychiatrist. These few steps make up a seemingly simple plan; it was anything but simple to arrive at. I had no one to teach me these things.

Maybe some day I will have the vocabulary and skill to explain what clinical depression has felt like for me. I hope so. I want so badly for the public to be more educated about depression. In general, our society is not knowledgeable enough to recognize the symptoms of mental illness (except for the really obvious ones you can learn about on TV). We do not seek help for mental issues as skillfully as we seek help when we break a bone. On top of this, mental illness is still a taboo subject that many people don’t even want to deal with at all. For many good reasons, we hide it in ourselves– but we need not.

It’s a frustrating situation to contemplate.

Are you pretty sure that people at work don’t wash their hands after going to the bathroom and touching their bits? That’s gross. You should print this out and put it up. (I licensed it Creative Commons because I am such a big a fan of asepsis.)

Additionally, I just finished reading Dancing at the River’s Edge, co-written by a patient (with a serious autoimmune disease) and one of her doctors, and it just pretty much kicked my ass halfway to hell. That book has things in it that I would never want Richard to know about what I go through with lupus… I would not ask my friends to read that book. I might ask my family, if I thought my mother or father would give two shits. Even though it’s depressing, it’s still full of amazing information, and I highly recommend it to anyone in a caring profession who works with chronically ill patients. I will probably buy it for my family doctor.

Although the book was a downer, it was affirming at the same time. Having the most soul-chilling aspects of living with chronic illness articulated in a very astute manner makes them more real. I think I spend a lot of time trying to make them less real, because it is very very lonely. I will go back to the book when I am feeling less raw, and pull out some good quotes to share. It’s full of solid content goodness. I actually kind of can’t believe it was even written– I didn’t think people talked so candidly about such things. Don’t people turn away from pain, death, and disease whenever they can? Even doctors do.

First let me define “active listening” as I know it. This is the listening technique I am supposed to use as a Medical Assistant, when I am taking a patient history. This is listening where you are entirely focused on the person speaking, absorbing not only their words, but their nonverbal cues (like a distressed expression) and paralanguage (like sighs of pain or frustration).

My main text for this quarter suggests the following exercise to test and develop active listening skills: have a partner talk to you for one to two minutes on a subject with which you are unfamiliar; ask a minimum of questions; when they are done, wait in silence for one to two minutes, then repeat back to them a summary of what they said, making sure to include the important parts.

It sounds sort of simple, right? I knew it would be hard, but I had no idea how hard it would be for me. I have always made fun of myself for having a really bad memory (it has plagued me my whole life), but I chalked it up to ADHD and PTSD. I thought maybe my brain chemicals and neural pathways were against me, making it impossible for me to remember anything. I don’t remember a new acquaintance’s name until about the 5th time I’ve met them. Keeping up with a physics lecture so I can deeply understand what’s being talked about? Forget about it.

I was practicing charting a “chief complaint” from a patient (my obliging friend Jen) and realized that I could not process 30 seconds worth of talking from her, then remember enough of what she said to write it down in the chart (the statements have to be translated into appropriate abbreviations and medically accurate language, etc). Oops!

When I practiced the active listening exercise for the first time with Richard, he spoke for a minute about something he was working on at work, and after a one minute pause I could only recall part of his first sentence and a technical phrase (which only stuck in my head because it sounded interesting). I had to have him repeat it to me. OOPS!

It does get easier with practice. It’s a very interesting skill. When I practice, I get that “pulling teeth inside my brain” feeling, which means to me that new neural pathways are being constructed. I know I’m going to get good enough at active listening to do what I need to do, eventually.

This morning I started wondering exactly why I am so shitty at remembering information. Having a bad memory has frustrated me indescribably. It’s caused me to feel so much shame and embarrassment over the years. I wondered if maybe it is just that I never learned how to “actively listen”, and so information never stuck. And I think I never learned how to do this because no one around me ever did it. Truly, no one ever listened! When I say “no one” I am speaking specifically of my parents, even though it sounds like I mean everyone in the entire world. (I guess your parents are the entire world to you when you’re a child.)

My stepmother was so narcissistic that she never even tried to listen. I think she had a sort of pre-made mold in her head for each major player in her life, and tried to fit all incoming data from that person into this lifeless mold she had already constructed. It didn’t matter what you said to her at all– she already had made all the decisions she would ever make about you and who you were (and how dumb and inferior your were).

My father– man, to this day I can not figure him out. I just know that he does not listen. I realize now that I have been watching him fail the “active listening recall” test for years. My whole life! It’s actually so sad it’s kind of funny.

And my mom… she also lives in a world of her own construction. She is more sad than funny. She tries, but it’s like the entire world was set against her from birth. (Or maybe that is her view of the world, and her belief system is so rock-solid that the people around her perceive her life that way too.) One of the saddest examples of her inability to listen is this: she would often ask me how I was doing, or how Richard and I were doing, and I would tell her we were doing well. She wouldn’t believe me– she would insist that something must be wrong. She thought I was protecting her from the inevitable pain that must be consuming my life.

I imagine that kids do the best active listening. You know, when kids are that age where they’re absorbing everything? When they learn to swear, and you wonder where they got it, and realize it’s from you, because they hear everything you say? When they hear adults use metaphors they don’t understand, and try to construct a meaning, but just end up with some grotesquely literal translation? (My mom’s boyfriend got fired when I was maybe 3 or 4 years old, and I thought it meant he was lit on fire by someone as a punishment for being bad.) Kids are constantly listening, absorbing, synthesizing, matching incoming information against what they know, revising it to fit– they’re passionate critical thinkers, and they’re using it to survive.

For those who understand photographs better:

Gibbon skeleton, Woodland Park Zoo, Seattle, 2005 (For sale)

O cigarettes! How I hate you for your mind-blowing addictiveness!

I am quitting now, for real this time, as a present to myself for my 30th year. I recently read David Sedaris’ “When You Are Engulfed In Flames,” where Sedaris talks about his decision to quit. He mentions hearing a non-native English speaker saying that someone had “finished with his smoking,” and talks about how appropriate the phrase sounds– as if there is some random allotted lifetime limit for a person, who has now reached his maximum, and thus is Finished With His Smoking. I like the expression too. Even though fear and vanity are my motivators (I decided that I don’t want to be a thirty-something smoker), I can pretend the reason I am quitting is that I have just reached my allotted limit. An arbitrary number is much more benign an adversary than Death, Infirmity, or Vanity.

Ah, Jessie? No no, she does not smoke. She has… how do you say?– she has finished with her smoking.

The weird thing about quitting is that I don’t smoke that much, and I don’t smoke regularly. It gives the illusion that maybe I don’t even smoke at all! If I smoke 20 cigarettes a week for 4 months out of the year, that’s 0.88 cigarettes a day. See, that’s not possible! That doesn’t even make sense! Ha! I don’t smoke!

Okay, so maybe I do smoke. Regardless. I hate how I can not smoke for months, and then something stressful happens or it gets sunny (seriously, sun is a trigger? How lame is that?), and then oh, it’s puff puff puff! Hey look, I have a cold now! Puff puff puff! But it doesn’t matter because my nicotine receptors are like ohhhhhh yeah this is the best ever, how about you wake up a little earlier because you want to have your morning cigarette? Yeah, this is quality living! Ow, my larynx.

So, I am educating myself about quitting, and I set the date (April 6th (THIS year)), and I actually do expect that I will quit permanently.

I remember back in the day, when I first considered quitting (as in really never even bumming a cigarette again; as in, even if my cat dies, I will not turn to cigarettes), the idea was frightening and alarming, something that normal people in first-world countries should never have to go through. And actually, now that I have been thinking about cigarettes for more than 15 minutes solid, it still seems alarming. Maybe writing about quitting is not good for quitting itself.

Here’s a photo in case you didn’t want to have to read any of the above:

March, 2009

I was wondering what prevented the mold spores I inadvertently inhaled while taking these photos from implanting in my moist, dark lungs, and a friend (”FRIEND”) pointed out that nothing really does, so people get aspergillosis. While frantically googling this condition, I found the following Aspergillosis blog that is full of great, terrifying information.

Since I am studying very hard right now (very hard) I decided that I should close the tab and read it later, so I added it it to Google Reader. While there, I started clicking on other blogs I subscribe to but never read, one of them being the XKCD blag.

I found this entry, which is old, but hilarious.

After a hectic few months, I finally have some projects that are in the early stages. But since nothing is worth posting about yet, here instead is a list of phrases that (at the time of this posting) turn up no hits on Google:

* “ate a violin”
* “driver-side bidet”
* “unlike normal furries,”
* “Sarah, plain and tall and a cyborg”
* “people are too civil on the internet”
* “his penis shattered my world”
* “more like LAME-arkian theory”
* “my little horse must think it gay”
* “it turned out her bottom half was a robot”
* “Aww, a baby hooker!”

Here are some phrases that I had hoped were original when I typed them in but was disappointed:

* “full-body glissando”
* “passenger-side bidet”
* “underwater Linux”
* “Nu-Polka”
* “erotic colonoscopy”
* “Spocktoberfest”
* “Frankly, my dear, I don’t give a frack.”
* “my bologna has a first name, it’s A-D-O-L-F”

(Reading this made me do my “private laugh”– a cackling, high-pitched repetitive wheezing that I do only when no one can hear me and I think something is so funny that it’s worth giving myself an inguinal hernia to keep reading. Of course this is nothing like the delicate giggling I reserve for public, since as we all know, it’s quite unladylike to laugh too loud or too long, especially if no men are laughing simultaneously.)

So I was reading the oncology chapter last night, and while I was reading and sort of having a panic attack (full color photos of sarcomas will do that), in the back of my mind, I was thinking about other things. I was reminded of how people often compare the human race to a cancerous growth on Earth. I think it’s a stupid, overused metaphor, piggybacking on the emotional impact of “cancer” to shock the reader, much in the same way that you can throw around the words “fascist” and “Hitler” and still get people to listen to you, even if you don’t know what you’re talking about.

It’s easy to see where this metaphor came from. Malignant tumors increase in size rapidly, and they are invasive and infiltrative, extending into neighboring normal tissue. When they metastasize, cells detach from the primary site and travel around the body, starting new tumors at distant locations.

Here’s what I didn’t know about cancer. Malignant cells are anaplastic. This means that their DNA stops allowing the cells to differentiate and carry on mature cell functions. They start out as immature cells and never change into the cells they were supposed to be. Some cancer cells lose the ability to spontaneously disintegrate when their time is up (that is, apoptosis is no longer programmed into their DNA). That’s pretty weird, and honestly, thinking about it for too long scares me. You’ve got these cells that just keep proliferating and living… forever…

The human/malignancy metaphor breaks down there, because us human cancer cells all grow old and die. (I think some people fear that we lose our identity in a global/wired community, in which so much connectivity causes an inability to “differentiate,” but I think those people just have a limited view of identity.)

When I was getting ready for bed last night, I thought, “cancer doesn’t care”. It doesn’t. That’s one of the scariest things to me. It’s not even that it doesn’t care in the way people don’t care about things, which can at least be rude or heartless– it completely lacks consciousness. It’s a rapidly proliferating “something” that is full of “nothing”.

That’s the biggest failure of the human/malignancy metaphor to me. Us human cancer cells are conscious. Many of us know we’re terrible stewards of our planet. Many of us know we are going to be so, so screwed some day due to our rapid species proliferation. We know, and we regret, and we do something to try and fix it, or put it out of our minds– we keep living, and then we die, usually while thinking about dying (unless the palliative drugs are really good).

If every cancer cell in a malignant tumor was sentient and felt bad about what it was doing to its host, would we think cancer was as bad? If it could say, “I am so, so sorry I’m killing you,” would that change anything? Memo from cancer: “I have spread to every last one of your lymph nodes, and your immune system can no longer function. You’ll be dead soon. Fortunately, we launched probes a while ago and have found other hosts, and we’ll be able to salvage some of our civilization.”

I don’t know– I guess some of my health problems I choose to ignore, because there are only so many preventive measures I can take at one time without getting overwhelmed. I have been ignoring my headaches a lot, and many other things, because I have just figured, “Oh, it’s another symptom of lupus, what can I do? I shall ignore it.” That’s been part of making peace with my immunological problems. You make peace with the worst, but keep hoping and working for the best (when you have the energy).

However, this book, by a prominent neurologist, recommends that I quit drinking coffee (and cut out all caffeine, actually, since it’s a potent migraine trigger). HOLY CRAP!!!

I need to say that again: HOLY CRAP!!!!!!!!!

It’s the like health section of my brain library was just toppled by an earthquake! I don’t want to have to go back in there and sort the books and shelve them all again!

However, yesterday it struck me that one of the funniest things a Seattleite could do is to quit drinking coffee, during the holidays, in the middle of winter. Now it’s so funny I have to do it.

I have quit drinking coffee twice before, so I know it can be done, it just really sucks– and I hate “quitting” things. I went through a period in my life where I put myself on a lot of dietary restrictions for imagined weight problems, so this whole “deprivation” feeling starts getting stirred up, and it just feels ugly.

However, I am 29, not 18 still, and I am a different person now, and it will be okay, and it’s not that big of a deal. (Imagine me rocking back and forth repeatedly while saying these self-soothing things.) But seriously, if it helps me with migraines… well shit, of course that’s worth it.

Unrelated side note: My galanthus (snowdrops) are sprouting out of the ground. TOO EARLY, YOU GUYS. SOMEONE IS GOING TO SET YOU UP THE SNOW AND THEN YOU WILL BE SORRY!

Migraine, 2007