Category Archives: etc

Bad Sleep, part 1

Photo of a cute Yorkie, with socks on, flopped on her belly

Yes, I am using images of my cute dog for this post instead of images of myself. LOOK AT THAT BARE BELLY. JUST LOOK AT IT.

I have a lifetime of questionable sleep habits. These started in childhood, when—in the third grade—I found myself unable to sleep without leaving my bedroom TV on. Before you leap in with “you had a TV in your bedroom, WTF,” let me assure you that it was only able to play VHS cassettes and not actual network TV. My solution to insomnia at that point was simple: I’d pop in the Disney movie Cool Runnings, turn the volume down extremely low until I could just barely hear it, and watch it until I went to sleep.

The weird part was that it worked for a couple of years. Once it stopped working when I was in the fifth grade, I would regularly read until I fell asleep—until my dad caught me one evening, my face down in a book, drool dripping onto the open pages, with the light still on. After that, I had to figure out ways to calm myself down if I couldn’t sleep, and the most reliable one was what I called “burrito-ing,” where I would spread my blanket on the floor or bed, lie down at one end, and then roll myself into a human burrito. I would roll myself in as tightly as possible, which gave me an unfortunate resemblance to a butterfly pupa. After this, I would hop up and wiggle back into bed—and usually be asleep within fifteen minutes.

From then on, the occasional insomnia that I had was dealt with by staying in bed, looking at the ceiling. I stopped doing the burrito-blanket roll trick when I realized that it was making me sweat buckets while I was asleep, resulting in a very uncomfortable feeling when I woke up. I may have also fallen out of bed a couple of times as a direct consequence of burrito rolling.

The pattern(s) of my insomnia changed when I started experiencing symptoms of fibromyalgia at 19, and was diagnosed at 20. One of the main hallmarks of fibromyalgia is that it can impact your sleep. That’s the polite way of saying that it will totally impact your sleep—depending on its severity, which can vary from patient to patient–drunkenly destroy your sleep patterns with a wrecking ball, then unzip its pants and energetically fuck that wreckage while “We’re Not Gonna Take It” by Twisted Sister plays way too loudly on a nearby portable stereo. So, my once or twice a year bouts of insomnia turned into oh, once every couple of months or so when I will just be awake for no reason at all.

Right now, I have at least one bout of insomnia per month, where I just cannot get to sleep, often regardless of my usual level of tiredness (which is VERY HIGH).

When I thought, a couple of years ago, that working from home would be great for me—and my bad sleep habits–because one can work in one’s pajamas and no outsiders would be the wiser, I certainly did not mean “can also emerge, confused, from a nausea-induced nap at 1 PM on a weekday, in the same crunchy/sweaty pajamas that I have been wearing for the past two days because I have been in too much pain to shower.” WORKING FROM HOME!

I honestly fetishize “perfect sleep” to the point that it concerns me a little. Once in a great while, I will have a couple of hours of sleep that feels like I am floating on a fucking lavender-scented cloud while lying on a cruelty-free feather mattress. Often, I will wake up and go WELL, THAT WAS AWESOME, BUT I’M STILL TIRED AS HELL SO IT’S TIME TO SLEEP IN SOME MORE. It’s inevitable that I will wake up from this enthusiastic nap number two disoriented and confused, with my neck or shoulder bent at an unnatural angle. By the time my brain in that situation goes NEED MEDICATION, NOW, I’ve forgotten about my earlier sleep triumph and have settled back in to my normal disheveled state.

 

Sometimes when I have insomnia, my anxiety-brain will Tarzan-swing in, on a fucking vine, no less, and start yelling at me for ridiculous shit. Picture Nick Nolte doing this as my anxiety-brain and screaming everything below directly into my ear, and you will begin to get an idea of why I find my anxiety-brain so reprehensible:

HEY, are you worrying a bunch about something that you have no control over, like if editors will email you back about those pitches that you were so excited about? DID YOU CHECK TWITTER TODAY, BECAUSE I HAVE NEWS FOR YOU: A BUNCH OF PEOPLE DIED! There, you can worry about that instead of your stupid problems.

Is this “being a writer” thing going to work out for you? Seriously, think about it: IS IT?

I heard a noise! SOMEONE’S TRYING TO BREAK INTO THE HOUSE. (spoiler alert: no one is trying to break into the house)

WHO WANTS TO READ YOUR STUPID ESSAYS ABOUT WHATEVER-THE-FUCK? NAME ONE PERSON.

Did you know that you’re a failure? BECAUSE YOU ARE.

Well, that was annoying. In light of all of this, I have decided to try to change my sleep habits for the better using one of those annoying tip lists from the internet. The results of my experiment(s) are as follows.

TIP: Worry about things BEFORE bed, not after you get into it! EASY FOR YOU TO FUCKING SAY, INTERNET ARTICLE.

TIP: Go to bed at the same time every night! I usually go to bed around 10 PM since it takes me approximately the running time of a pretentious art movie to actually get to sleep, so I already have this one covered.

TIP: Wake up at the same time every day! I already do this, except for when I have insomnia, which I suspect compounds the problem. Our dog, Noodle, will piss all over the wood floors of our apartment if I don’t take her out at the exact same time to pee every morning—this is as good a motivator as any to get me up at the same time every morning.

The time that my body seems to want to get up on weekdays is 9:30 AM. Weekends are a sleep free-for-all unless I have plans.

TIP: Stop drinking caffeine! I love tea too much to actually cut out all of the caffeine that I drink, so…this is not going to work for me as it’s written out. I drink 2 cups of tea per day at most, it’s not always with caffeine, and I don’t know why I am wasting all of this energy justifying the low amount of caffeine that I consume. I am also not a big soda drinker and dislike coffee, so there are two things that I can’t really cut out—unless I want to pat myself on the back already for doing fuck all, which I totally do.

Over the past few weeks, I have had one or two cups caffeinated tea before noon. I have not noticed any differences in my sleep patterns. Not having caffeine after noon is making me feel less weirdly jittery, I guess?

TIP: Don’t do anything in your bedroom other than sleep and other bedroom activities! DO NOT read or look at your phone in bed! The stumbling block for me with this one is that I LOVE READING IN BED. It is one of my top ten or fifteen things that I like to do. The combination of getting to lie down comfortably and read is just the best.

So I know that, right from the outset, that this is going to be a tough one. I’ve been following the “don’t look at screens for at least an hour before bed” tip for a few months, and it seems like it’s helping things along.

I have not been able to stop reading in bed. I am a voracious reader and a terrible sleeper, I guess.

TIP: Don’t take naps! Okay, here is the thing about this tip: for people who have chronic fatigue from an illness (not just OH I GET TIRED SOMETIMES, TOO, abled folks), naps are a necessary evil.

Noodle nap

This little goblin can sleep ANYWHERE.

There are days when I want to do nothing but take naps. This would concern me, but daytime tiredness is a thing when you have fibromyalgia (or its Benadryl-doused cousin, CFS/ME—an illness that I am very glad to not have because dealing with chronic pain is enough). I usually give in to failure so quickly that any normal person would look at my sleep schedule and be like, “um, you should go see a doctor for that hypersomnia, dude.” And I’m like, NO, THIS IS JUST PART OF HAVING A CHRONIC ILLNESS THAT FUCKS YOUR ENTIRE BODY UP, BUDDY.

I want to be in that dead sleep space constantly. There are nights when I’m awake and, after a certain point, get extremely excited about being able to sleep in the next day—which, I’m guessing, exacerbates the whole insomnia thing.

I have tried to avoid napping during the day for a few months, with my successfulness ranging from middling success to NO SUCCESS AT ALL.

In the interim, my snoring got worse, so I had to go get a sleep study done, which is why I’ve divided this piece up into multiple parts.

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My Gallbladder Removal Adventure

Image of a white woman in a hospital setting. She is pointing her phone at a mirror and scowling.

I took this picture shortly after my surgery, which explains the scowl.

I had my gallbladder removed last January. Here is a humorous essay about that experience. There are a ton of racialized disparities in pain management, which I do not cover in this essay. 

It started with a salad.

My mom and I met for lunch on a Friday, at a pizza place that I had never been to, but had chosen because I was ravenously hungry. I ordered a Greek salad. It was not very good, but since I was hungry, I ate it anyway.

I couldn’t eat the next day, save for a scone and some water. It was the salad, I thought. I ordered a salad from a pizza joint. Of course it’s making me sick. At some point, I started throwing up and couldn’t stop. The vomit looked like sand; when I had nothing left in my stomach, clear bile came out of my mouth and streamed into the toilet bowl, making me look like world’s worst fountain. Imagine the famous Belgian “Mannaken Pis” statue, except it was my unlucky self bent over the toilet bowl, with a stream of yellow bile instead of water coming from my mouth.

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What’s Up with the Internet’s Fascination With Disabled Animals?

Image via https://www.flickr.com/photos/handicappedpets/5731391896/in/photolist-9JsT8E-4Pfkjy-JXMo36-LiBSGu-7UL6ce-bASnee-5h7TGt-aEF82d-burs8a-yRZk9G-JV1kxj-7YMEFv-7FhBGR-SbSS6B-SbSQDZ-8cbMo8-jpdxWU-anmiqK-7YQTGh-bW9SZ3-9f4YKL-9f1Qzx-ngxmo-5h1ho6-J2Snyn-KZc2pj-QkAnX7-cW5CNd-a1Fkc2-3dYFt6-9Jq4MM-as7qew-as4MUn-51jCSW-g3BUZQ-7YQTJu-S8hqtm-k1H7g-613TzU-51frUX-bE824i-6Ge8VJ-9U54UU-bE7Np2-brcR9m-bE7jjF-bE7S6i-bE7jFx-bE7TLV-bE7VVB; used with Creative Commons (CC) license.If there’s one thing that internet denizens can agree on, it’s that animals–especially domestic pets–are great. (There’s even a Wikipedia article on the internet’s love of cats.) And why not–pets are so cute!

From the (now inactive) Cute Overload blog to the /Aww subreddit, cute animals have been in high demand online for a while. But there’s a not-so-adorable side to the internet’s thirst for cute: the fetishization of animals, particularly pets, with disabilities.

The breathless coverage of apparently “inspirational” animals with disabilities is everywhere: A pig named Chris P. Bacon (ha ha, because we usually eat pigs, right?!) had a wheelchair made for his back legs! This duck has a new lease on life thanks to a prosthetic foot! Wow, a goldfish with a wheelchair! Don’t discount the thousands of results that a simple Google Image search for “disabled animals,” brings up, either—there are a lot of photos, stories, and memes about them.

As with a lot of internet trends, this fetishization is widespread, but difficult to trace to a single source; there are Buzzfeed articles, photo sets with varying degrees of context about the photo subjects’ disabilities, television specials, and—of course—lots and lots of “inspirational” coverage of humans who have saved animals with various disabilities (but WHO SAVED WHO?). So why is the internet obsessed with disabled animals? My take is that the various “inspiring” stories about disabled animals provide a way for nondisabled people to talk about and engage with disability in a facile way. If one is constantly gawking and aww-ing over pictures and stories about animals with disabilities, then they don’t have to spend time thinking about actual disabled people, or the ableism against disabled humans that still exists.

Much of the positive coverage of disabled animals takes a cue from inspiration porn, a term that was coined by disabled comedian and activist Stella Young. Disability activist and writer Rachel Cohen-Rottenberg sums up inspiration porn as “consist[ing] of the objectification of disabled bodies for the purpose of inspiring able-bodied people” to, among other things, stop whining, get a better attitude, and use their WILLPOWER to overcome various obstacles. The main message of a great many inspiration porn images, stories, and memes is generally: This person with a disability overcame adversity/got in shape/stopped whining and embraced happiness, so why can’t you, abled person?

Being inspired by other humans to live up to one’s full potential is not bad on its face, but inspiration porn reduces disabled people—and their varied life experiences—to life lessons and just-so stories that abled people can be inspired by and then forget about. Inspiration porn uses disabled people as objects—not subjects—in its quest to motivate (or shame) abled people into getting up and “doing something,” living their dream(s), or accomplishing amazing feats. Simply put, inspiration porn images, articles, and memes use disabled people as inspiring things to be shown off, usually for the benefit of abled people’s personal motivation.

There are other phrases and tropes that tend to be used in inspiration porn material, including “[condition or disability] doesn’t stop this person from achieving their dreams,” “[person] is so happy despite their disability,” and “[person] has such a great attitude about life” and can teach abled people so much about what it means to really live; that last one seems to have sprung from the ridiculous Scott Hamilton quote about the “only” disability being a bad attitude. [An aside: That quote is also a great example of a person with a disability policing the experiences and opinions of other PWDS—Hamilton has had a few much-publicized battles with cancer, but doesn’t seem to have realized that cancer is disabling, no matter what kind of attitude you cultivate.]

Unsurprisingly, these tropes are also present in a lot of disabled animal inspo-porn:

These animals are so INSPIRATIONAL for doing normal animal things, plus a side of “disability is bad”: “These fur balls were dealt crappy hands, but they’re still smiling, purring and wagging their little tails. That’s what I would call totally inspirational!”

[Disabled animal] has so much to teach us nondisabled people about compassion and empathy: “Now, Joe has a new mission: using his experiences to help teach young kids to prevent bullying by using empathy and compassion.”

Another [disabled animal] has so much to teach humans about themselves—and LOVE! “He shows them that with love and kindness anything is possible.”

Hear that, nondisabled humans? Don’t complain or feel sorry for yourselves—be like this cat. “Cats just figure things out…They do not waste time feeling sorry for themselves—they simply get on with the act of living and have a whole lot of fun doing it! In their heads, they are fine and dandy, just as they are!”

This INSPIRATIONAL cat can do things, just like normal cats! “Belle is quite an inspiration. She cannot jump like other cats, but that doesn’t stop her from climbing on anything that she can stick her claws into.

Gawking at these disabled animals—and sharing their “inspiring” stories (usually written by nondisabled humans) across social media—becomes a way for people who may not have significant personal experience with disability to engage with some common tropes about disability. Unfortunately, many of these “positive” tropes about inspiring disabled animals who (unlike humans?) don’t complain about their lot in life are still damaging. It may not be politically correct these days to pity and gawk at people with disabilities, but it is accepted—even encouraged—for nondisabled people to project these feelings about disabilities onto disabled animals. The compassion that commenters, Tweeters, and social media sharers may have for these disabled animals doesn’t seem to extend to people with disabilities; while pigs and goldfish get wheelchairs and their humans are praised for “good deeds” by the internet, many members of the online disability community have had to crowdfund for wheelchairs.

Certainly, on the scale of issues surrounding the comparisons of disabled people to animals, this one lacks the horrifying implications that, for example, Peter Singer’s continued contempt for people with disabilities in the name of animal rights and utilitarian philosophy do. But the continued and unquestioned objectification of “cute” and “helpless” disabled animals highlights how even the most well-meaning nondisabled people can and do project damaging stereotypes and tropes about disability—and the apparently “inspiring” nature of people with disabilities–onto animals. Such projections do both animals and humans with disabilities a disservice. Disabled animals deserve to have full lives—not to just be “inspiring” objects at which to be gawked.

Originally published on Disability Intersections.

13 Fibromyalgia Moments

naturalhabitat

In my natural habitat.

  1. I slept in until 10:30 this morning, but am ready to go to bed right now. It’s just after 9:00 PM. This feels like a failure, somehow.
  1. Wikipedia defines fibromyalgia as “a medical condition characterized by chronic widespread pain and a heightened pain response to pressure. Other symptoms include feeling tired to a degree that normal activities are affected, sleep problems, and troubles with memory. Some people also report restless legs syndromebowel or bladder problemsnumbness and tingling, and sensitivity to noise, lights or temperature.” Fibromyalgia does not sound so bad, defined this way. Any person with the condition, however, will tell you that it is much worse than this definition makes it sound.
  1. Something a lot of people do not understand about chronic pain is that it is constant. I am always in some kind of pain. Some days, my pain level is a 1 or a 2 (those are great days); some days, it’s an 8 or a 9 (usually because of rain, or because I did too much, exercised too much, or overcommitted myself the day before). Most of the time, my pain level is between a 4 and a 6. The rock band Hole titled their 1997 compilation album My Body, the Hand Grenade. My body is a land mine that can detonate internally—touch it the wrong way, and it will explode with symptoms.
  1. Even the number scale doesn’t really cover the symptoms that I deal with on a daily basis: pain (it usually feels like I’m wearing an overcoat of bricks), fatigue that feels like I’ve taken at least 4 Benadryl pills, and very strange symptom trinkets like nausea and dizziness, the skin on my face getting extremely hot, and/or feeling like the soles of my feet have been lit on fire. There are more weird symptoms, but listing them could be an entire piece in itself.
  1. The pain itself can take certain forms other than the aforementioned overcoat of bricks: burning, biting, pin-and-needling, scratching, dull aching, shredding, or, my least favorite, pulling. Pulling pain feels as if my bones and muscles are being pulled toward the ground, like gravity decided to weigh on just me a whole fucking ton.

Most of the time, my muscles are as tight as closed fists; this gives new meaning to the phrase tight body.

  1. When the less-common shredding variety of pain occurs, all I can think is, This would be what pulled pork would feel like if it were able to feel.
  1. When I was first diagnosed with fibromyalgia, in 2007, I thought that the name of my new disorder sounded like the name of a gross fish that swims along the bottom of the ocean and eats dead things. That, or the name of a character from George R.R. Martin’s A Song of Ice and Fire series: Lady Fibromyalgia of House Musculoskeletal. Unfortunately for me, it was, and is, neither.
  1. A close relative asked me during a phone conversation, “When you say you don’t have the energy to get out of bed, what do you mean?” I didn’t know how to make the language of that statement any more plain.

I mean that I do not have the energy to get out of bed, I replied.

  1. There have been times when I have attempted to read—to distract myself from my symptoms—and the words look like they’re starting to march off the page. This is one of my indicators of level 8-plus pain or severe nausea.
  1. I have a lot of guilt about not being able to do certain things, especially if social activities with family or friends are involved. Are they thinking If she would just [______], she could make it to the party/art opening/camping weekend?

My partner is quick to reassure me that family and friends would much rather see me when I am feeling well, and that it’s important for me to take care of myself. Despite my frequent worry about this topic, his reminders help. But the expectations that “nice” women are up for anything, are cheery, social, ever helpful, able to go to parties and events, look pretty at all times, be charming and friendly and talkative and make other people comfortable by not showing that they’re upset, annoyed, in a funk, or (in my case) in pain at all–still haunt me.

  1. I cannot remember what it is like to not be in pain. Even being at a level 1 or a 2—usually thanks to medication—seems strange to me. Being in at a low level of pain always feels like I am in another body, like I’ve borrowed someone else’s body for a little bit.
  1. If I had to choose a superpower, I would want to be able to projectile vomit rotten sauerkraut onto people who say that fibromyalgia does not exist, that there is no “physical evidence” for it, that it’s a women’s disease, so we must be making shit up.

The central idea in this attitude, as with the skepticism surrounding chronic fatigue syndrome, chronic Lyme disease, and more—is that women who have any of these “mysterious” diseases must be exaggerating their symptoms for attention, embellishing descriptions of their daily pain to get drugs, or dumb enough to have been convinced by drug ads on TV or news articles or WebMD that they have these “made up” diseases. There’s a pervasive cultural idea that men’s pain should be taken seriously—if a man is in enough pain to visit a doctor, he must be in real pain. The other side of this coin is that women’s pain should not be taken seriously—a woman in pain who’s concerned enough to visit a doctor for treatment might be just hysterical or anxious.

  1. Every single thing that I do is affected by pain, and I have to live my life accordingly.

To people who do not have chronic pain, this sounds like I have given up. To me, it sounds like common sense.

 

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Yule gift guide, part 3: Things to Read

Today’s (VERY LATE) gift guide installment features books, glorious books! Not all of these were released in 2012, but they are all worth a look for your bibliophile giftees–or for yourself, if in the new year you’ve found that you need stuff to read.

Above: Selections from the following list.

Above: Selections from the following list.

Inside Scientology: The Story of America’s Most Secretive Religion by Janet Reitman: I read this huge honker in a couple of sittings. Yes, it’s that interesting. Good for anyone who loves non-fiction, is not a Scientologist, and/or is thinking of majoring in Religious Studies.

A Thousand Lives by Julia Scheeres: More religion! Except this time, the subject is Jonestown. Journalist Julia Scheeres gets past all of the “OMG drinking the Kool-Aid” sensationalism surrounding the group’s mass murder/suicide, and in the process uncovers a fascinating story of people searching for meaning and peace–a search which ultimately led them to extremely dark places.

Sex & Disability, edited by Robert McRuer and Anna Mollow: I reviewed this one for Bitch over the summer, but the quality of this volume is so good that I have no problem recommending at the drop of a hat (or drawers, really). Good for people who are into cultural studies, queer theory and studies, and/or (of course!) disability theory.

In the Peanut Gallery With Mystery Science Theater 3000, edited by Robert G. Weiner and Shelley E. Barba: Yes, it’s an academic anthology on MST3K. No, it’s not boring or tedious at all. This is a good one for media studies junkies, and/or people who have managed to sit through the very early KTMA episodes of the show.

Let’s Pretend This Never Happened by Jenny Lawson: This was one of the funniest books that I read in 2012. The weird cover featuring a little taxidermied mouse dressed in a period costume is just the beginning–if you want to read anecdotes featuring a bathtub full of baby racoons, young Jenny accidentally running into a fresh animal carcass, and awkwardness at a weekend bloggers’ meetup, this is the book for you.

Lost at Sea: The Jon Ronson Mysteries by Jon Ronson: Probably my favorite book of 2012, and certainly one of the most impeccably reported. This volume of British journalist Ronson’s collects many of his strangest and most compelling pieces, among them an interview with Insane Clown Posse (which can also be read herecontent warning for graphic descriptions of violence), a report from a week-long cruise for fans of infamously brusque psychic Sylvia Browne, and an amazing investigation of predatory credit card companies in the UK. The balance of “serious” journalism here with Ronson’s more humorous pieces is excellent, and I highly recommend Lost at Sea if you are a fan of British humor, investigative reporting, or nonfiction writing.

Non-Stop Inertia by Ivor Southwood: Those of you who are underemployed, or who are currently experiencing the purgatory of a stream of low-paid temp jobs, are sure to find much of what Southwood says about labor, capitalism, and the exploitation of young workers familiar–and, most likely, spot-on. I know I did!

All of Us or None: Social Justice Posters of the San Francisco Bay Area by Lincoln Cushing: A beautifully designed art(istic) history of the Bay Area’s famous (or infamous) reputation as a hotbed for anti-oppression movements does not disappoint. The posters included here are not just presented coffee table book-style, however–the text that describes each poster and its significance is enlightening, informative, and interesting to read. Anyone who says that history is “boring” should take a look at this book.

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Yule gift guide 2012, part 2: Cosmetics & Beauty/Health items

This is going to be a long post, because I am one of those makeup/beauty nerds who loves going “YOU MUST TRY THIS!!11” to people who have asked for my recommendations (or, in the case of this post, people who have not asked). Anyway, get a beverage ready and get comfortable, because there are a lot of things in this post. Gifts listed here will be a little more expensive than in the last installment, although I have tried to keep things that I think are overpriced (heyo, Dior Addict Ultra Gloss lip gloss) out of this guide.

SOAP AND BATH STUFF

soap_substratum
My latest soap obsession is the limited edition Substratum soap ($9) from Black Phoenix Trading Post, which is the “other merchandise” arm of BPAL). I know, right–NINE DOLLARS for a bar of soap?! But it is a WONDERFUL bar of soap. Notes: Himalayan cedar, patchouli, spikenard, and black fig. I’ve already written about BPAL in other contexts, but I will mention that their current limited edition scents are worth checking out if any of your gift-ees are into that sort of thing.

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