Part 1 can be viewed here. Image descriptions can be found under the read more tag.
Most of the time, I am very much for disability pride, but the fact that I have moderate-to-severe chronic pain from fibromyalgia complicates what should be a ride-or-die sort of feeling. If my personal disability pride is a string of rainbow holiday lights, my pain and fatigue is the thing that knots those lights into a ball of awfulness. Untangling the lights takes for-goddamned-ever. Some of the lights are probably burnt out from years of use. In short, if I could get a new string of lights, I would, but for the purposes of this metaphor, I have an imperfect string of lights that is always knotted in impossible configurations and thrown in a box at the back of the garage. (I must pause and give a shout-out to Leah Lakshmi Piepzna-Samarasinha, as her most recent book Care Work: Dreaming Disability Justice provides a ton of food for thought on this very topic.)
There are times that my day or week gets ruined by pain and fatigue, and I can’t do much other than wait for my body to feel better. Often, this will happen when I am on a deadline or have to do something. When it happens, I’ll wake up in bed in the morning and feel like I am in more pain than usual. Sometimes, I will lie in bed and stare at the ceiling, like a dingus, for anywhere from 30 minutes to an hour and a half because the pain is so bad that it has either a.) sucked up all of my motivation to do anything about it (ie: taking medication), or b.) reduced me to lying in bed and staring at the ceiling, because doing anything about it would be useless.
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.
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.
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.
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.
Astute readers will probably notice that I haven’t been around as much on the various social media widgets the last couple of weeks, nor publishing things to either this blog or Disability Intersections. Why is that? Well, it’s because, like most people’s 2016, my 2016 kind of sucked. My year-long case of an “Oh, FUCK, seriouslyyyyy?” facial expression started in January, when David Bowie died, and made its horrendous curtain call last month, when my 17-year old Yorkie, Winston, had to be put to sleep due to a sudden illness. Like a canine version of David Bowie, Winston lived a long and interesting life, although I can’t say that he ever wore makeup, dressed up like a space alien, or went on tour with Trent Reznor at any point, since he was a dog and not an influential British musician and fashion icon.
I spent a large portion of 2016 trying to not fall into a spiral of general grumpitude amidst various medication changes — and a lot of failures on that score — for chronic pain and fatigue from fibromyalgia, while also attempting to make progress on a humorous essay book, for which I hope that a publishing house that’s not aware of my immediate reputation will be interested enough to purchase (eventually, that is, since I need to finish the damn book first). As far as my Resting EVERYTHING SUCKS AND HOW CAN THINGS GET WORSE? SHOW ME, I DARE YOU Face goes, I thought Donald Trump winning the U.S. Presidential election was going to be my personal feeling-like-shit apex this year. It was not.
For those of you who have lost someone — human or non-human companion — who was important to you and whom you’ve known for a long time, you know what grief is like and how it makes you feel like someone froze your soul, shredded it in a snow cone machine, and then served it to the world’s brattiest child, with an extra-tepid topping of your snot and tears. But if you have not experienced this (yet), allow me to outline exactly what happens afterwards.
“But Anna,” you might ask. “Winston was a dog. How hard could it have possibly been?” First of all, you might want to shut your face hole, and consider that you are very lucky that losing someone close to you has not happened to you. Second, Winston was 17 and a half when he passed away. Dude was with me for over half of my life. That is a lot of time. When you have that amount of time to get to know someone — in this case, a small creature who depends on you for food and basic needs and such — they become a part of your life. Their quirks and personality characteristics make themselves known to you, and accommodating their habits becomes part of your daily routine. Yes, animals can and do have personalities; I know I sound like such a Bay Area hippie here. Winston was more than a furry and elderly roommate. He was a friend — a friend who spoke a different language, depended on me to take him outside to go to the bathroom, and had his annoying moments, sure, but a friend nonetheless.
Winston also dealt with chronic pain issues in the final years of his life. In early 2016, my partner, Liam, and I found out that Winston’s arthritis in his back had progressed to the point that he would need to be put on pain medication. And not just any pain medication — our vet determined that Winston’s pain would need to be managed with tiny doses of opioids.
The irony — and unintentional hilarity — of both Winston and I being on opioids to control our respective chronic pain conditions does not escape me.
A bunch of other health issues also came up during his last few years, including a heart condition that made him cough (honk, really) loudly at night, eye issues that left his little face constantly goopy and some of the hair near his eyes in his eyes because of the thickness of the goop, various digestive problems that would cause him to throw up silently, or poop either too much or not enough, and a nerve problem in his back that caused one of his tiny hip joints to pop in and out of its socket randomly. Despite all of his health problems, Winston remained a fairly happy little dog until the end of his life. The only time that I saw him visibly unhappy was when his hip joint would pop out, rendering him unable to walk or stand; this got better once the vet increased the daily dose of pain medication. The eye goop also proved to be an issue, as Winston did not like having his face touched — but we needed to touch his face to remove the goop with Lids and Lashes. No matter how much we cleaned his face, the goop came back.
Winston’s kidneys began to fail, he became extremely dehydrated, and he stopped eating — losing over a third of his body weight in two days — and so, seeing how distressed he was and realizing that he wasn’t going to bounce back from this, Liam and I made the decision to have him put to sleep. The process itself was peaceful, but difficult to watch. Liam and I held Winston’s little paws as the medication took effect, and as Winston passed, I felt like the Yorkie-shaped hole in my heart would never heal.
The aftermath has felt like someone has taken a giant melon-baller to my soul and scooped a large portion of it out. My chronic pain issues got worse in the week following Winston’s passing, and the fibromyalgia-based fatigue became so severe that there were several days in a row that I slept for more than 12 hours at a time, getting up only to eat or use the restroom. When you’re asleep, you can’t cry. You also can’t feel your chronic pain weighing on you like a giant barbell.
It’s been more than a month, and I’m still feeling somewhat fragile from this loss. There are a lot of things I miss about Winston; I miss his little grunts and loud snoring, his weird salty smell, and his habit of nosing my bare leg whenever he needed attention. I miss coming home and seeing him “dance” with excitement; if he was in his bed and couldn’t be bothered to get up when he heard the door open, he would lift his head up, grunt or whine in acknowledgment, and wag his tail very slowly to welcome me home. I even miss some of his habits and quirks that annoyed me, especially his method of waking me up in the middle of the night to let me know that he needed to go out, his “give me attention NOW” grumbles that often sounded like air being let out of a balloon, and his penchant for walking into mud puddles and then leaving gross paw prints wherever he went. He was a unique little dog with a personality that belied his small size (six pounds at his largest).
And so, with Winston gone, I am still experiencing the aftershocks of grief. Just when I think I’m making progress, I’ll see something or hear something — you would not believe how often I’ve mistaken some outside noise for a little dog whine or sigh — that reminds me of him, and then the full force ofhe’s not here anymore will slam into me like the kickback of a rifle. Lately I’ve felt like grief is just hovering around the edges of my life like a conniving, evil imp, or a bunch of them; I can play Grief Imp Whack-a-Mole all I want, but the imps are still going to be there no matter how fast I’ve become at whacking them back into place. Part of me does not want to admit to being this vulnerable, or to missing Winston this much, but the other part of me knows that I have to acknowledge what a huge loss his passing has been.
I’m trying to work through this grief in a healthy way — and to resume working on my book — because I know Winston would have wanted me to keep doing stuff. If he were here right now, perhaps he would be by my side as I type this, snoring away or repeatedly positioning his head on my leg until he was perfectly comfortable. I am trying to move in the right direction for 2017 — however slowly, as Winston did.
This piece was originally published on Medium.