Grief is a Conniving Imp

anna-winston-new

Winston and I enjoying each other’s company.

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.

snoozy

Winston in his bed.

This piece was originally published on Medium.

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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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Content note

Ahoy. As many of you have probably realized, I am devoting a huge share of my blogging energy (blog-ergy?) these days to maintaining Disability Intersections. A lot of my writing/contentincluding longform cartoons–can be found there! This is not really a “state of the blog” post or announcement that I’m taking it down, or anything of the sort; it’s more of a “hi, here is why I haven’t updated my damn blog for over a year” post. WHEE.

Relatedly, s.e. and I are always looking for new contributors for the site! Please read about our submission guidelines/policies here and get in touch with us if the mood strikes.

Painkiller Potoo

painkiller-potoo

Click for large version.

[Description: Line drawing of a Potoo bird with its lower body shaped like a tablet; the tablet reads “M365.” To the bottom right of the Potoo is the cartoonist, grimacing in obvious pain. The two are having a conversation:

Potoo: Hey dude take yr fucking pills already. Suffering through yr pain is a rlly bad idea.

Annaham: That is a good suggestion; thanks, Painkiller Potoo.]

Painkiller Potoo knows what’s up.

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Beyond Human: The Heaven’s Gate Cult, Transhumanism, and Me

A selfie with one of the Heaven’s Gate (post-mass suicide) photos, as shown in John R. Hall’s excellent 2000 study on new religious movements, Apocalypse Observed.

[Originally published on Disability Intersections on  March 21, 2014.]

Heaven’s Gate was an American UFO religious Millenarian group based in San Diego, California, founded in the early 1970s and led by Marshall Applewhite (1931–1997) and Bonnie Nettles (1927–1985). On March 26, 1997, police discovered the bodies of 39 members of the group who had committed mass suicide in order to reach what they believed was an alien space craft following the Comet Hale–Bopp, which was then at its brightest.

–From Wikipedia’s entry on Heaven’s Gate (content warning on link for description of suicide and photos)

I’ve been fascinated with the Heaven’s Gate cult ever since I saw–as an 11 year-old–a huge photograph of the members’ dead bodies, apparently peacefully posed on bunkbeds,  on the front page of my local paper, under the rather alarmist headline (and all-caps) headline HOUSE OF HORROR. As I picked up bits and pieces of information on the group that the news media breathlessly reported throughout April and May of 1997, I began to wonder if the “house of horror” headline was overblown; yes, these folks had committed mass suicide, but they had also found people to whom they could relate and live with peacefully (albeit in a fringe religious group). Was that so horrifying? To most people–and to the media–it seemed like the answer was a resounding yes.

Continue reading

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Fall Faces

“Fall Faces” cartoon, featuring a series of line drawings of the cartoonist making various faces in different situations: Dog Decides to Crap on Carpet Due to Cold Outside Temperature; Accidentally Shrink Beloved Sweater in Wash; Forecast SAID 70 Degrees f—Rain Outside; Holiday TV Ads; Pumpkin-Flavored Everything; Dogs Wearing Sweaters; New Hat; Chapped Lips.

I have no idea what’s going on with the light in this one, but I liked the pink and purple so much that I kept it.

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Gimme That Old Time Religion: A Starter Guide to Nonfiction Books on Religion

Image: a pile of books.

STACKED

I find religion—and especially fringe religious movements—incredibly interesting. I don’t subscribe to any faith (for the curious, I’m an atheist, but that’s tangential to the rest of this piece), but the human search for answers—metaphysical, spiritual, or something else–to the “big questions” is something that I find compelling and confusing in equal measures.

Perhaps my interest in religions old and new, as it currently manifests, is more akin to kudzu, a plant that gets all over EVERYTHING and has been known to do things like cover entire houses. But for those who are not quite at the kudzu-level of interest in religious movements, it can be hard to know where to start with reading about this sort of thing. So, here’s a list of some of the books that, for me, didn’t help to stop the intellectual kudzu growth so much as encouraged it.

Righteous: Dispatches From the Evangelical Youth Movement (2005) by Lauren Sandler: I am both terrified and fascinated by evangelical Christianity, and Salon reporter Sandler’s book on evangelical youth movements in mid-2000s America shows us exactly how these extremist beliefs have taken root in a new generation. As Sandler details in her reports from youth gatherings as diverse as anti-abortion music festivals, a skater-centric mission, and the extremely conservative campus of Virginia’s Patrick Henry College, evangelical Christianity is not a fusty, old-style movement that Millennial believers are rejecting—paradoxically, many seem to be embracing it in droves. If you’re at all interested in the “culture wars” of the last 15-20 years, the current battles over reproductive rights around the nation, or are baffled by the appeal of pop culture-heavy evangelical churches like Seattle, Washington’s Mars Hill, look no further—Sandler provides a provocative look at the unlikely direction in which evangelical Christianity seems to be headed.

Further reading: Jeff Sharlet’s 2008 expose The Family is a look at the extremely powerful faith-based group that has more influence on United States politics than many people know. Nation contributor Kathryn Joyce’s Quiverfull: Inside the Christian Patriarchy Movement (2009) paints an equally disturbing picture of evangelical gender politics—which are, perhaps unsurprisingly, extremely regressive and being emphasized right now by many prominent leaders of that movement.

 Underground (1997) by Haruki Murakami: Celebrated fiction writer Murakami interviewed hundreds of survivors of the 1995 Tokyo subway sarin gas attack perpetrated by fringe group Aum Shinrikyo, and this stunning, horrifying book is the result. Although the book does include a narrative of the events, it is less a meditation on Aum’s motives than a skilled, movingly told account of a deeply scary event that gives the reader insight into what it’s like to live through—and after—a very public trauma. It’s difficult for me to describe how incredible this book is without lapsing into hyperbole; it’s a powerful chronicle of how ordinary people react when faced with terrifying events.  

Further reading: Psychologist Robert Jay Lifton’s Destroying the World to Save It (2000) which places Aum and other apocalyptic faiths (including the Manson family, Jonestown, and Heaven’s Gate) in context with the “end of the world” strain in some religious traditions, and in the age of global terrorism. This is the book to read if you want a better idea of Aum leader Shoko Asahara’s rise to power, and/or how Aum has been influenced by Japanese culture and social mores.

Apocalypse Observed: Religious Movements and Violence in North America, Europe, and Japan (2000) by John R. Hall, with Philip D. Schuyler and Sylvaine Trinh: If you’re familiar with some of the basic concepts in Sociology and/or Religious Studies—and are interested in how alternative religion/NRM activity relates to cultural anxieties about the 20th century ending, this is a fine book to pick up. Although the Jonestown material has been well-covered by this point (the primary author of this book, John R. Hall, also wrote a thorough academic study of Jonestown entitled Gone From the Promised Land), the chapters on Order of the Solar Temple and Heaven’s Gate are excellent in narrative as well as insight. A word of caution: This is pretty clearly an “academic” text in more ways than one—that includes the price–and a new copy will run you upwards of $50. Fortunately, used copies for a couple of bucks are not too hard to locate online.

 Further reading: Journalist Julia Scheeres’ A Thousand Lives: The Untold Story of Hope, Deception and Survival at Jonestown (2011) gives readers a nuanced, humanizing view of one of the most notorious post-1960s religious sects. Since “drinking the Kool-Aid” has entered the U.S. cultural lexicon since the sect’s mass death in 1978, many still believe Jonestown to have been a cut-and-dried case of mass suicide by vulnerable people who were all swayed, zombie-like, by Jim Jones and his message of socialist revolution via a self-reliant commune (in a former French colonial country, no less). But as Scheeres admirably shows, the members of Peoples Temple who died in the massacre were people—all with hopes, aspirations and dreams.

 Inside Scientology: The Story of America’s Most Secretive Religion by Janet Reitman (2011) is a behemoth of nonfiction and investigative amazingness. Rumor or fact, if it has to do with Scientology, it’s probably ably documented by Reitman here–but without the “spin” that the CoS likes to put (or litigate) onto any coverage that has to do with their faith. I don’t want to spoil the book too much, but I will say that Scientology is called “America’s most secretive religion” in the book’s title for good reason. There are a lot of secrets—and even more scary tactics used to intimidate critics, skeptics, and defectors–and none of these reflect well on the faith or its followers.

 Further reading: If you’re more interested in the media and Hollywood-influencing side of Scientology, pick up Lawrence Wright’s recent Going Clear: Scientology, Hollywood, and the Prison of Belief (2013). Don’t be surprised if you give extra side-eye to celebs associated with Scientology after you read this book.

So many words, so many books! Readers, what are your favorite books about topics that you find endlessly interesting — or about religion? 

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