∞ “11.11.13. – Mending” by Angeliska.
“I wished on 11:11, though, yes. I woke up early, and met with an old and dear friend. I attended to my neglected feet, and had my legs massaged and toes painted by a smiling stranger. I remember how crushing it felt last year, to go through these motions of self-care. I can recall so clearly sitting in the parking lot of a deserted shopping center in my cold car, a thin sliver of crescent moon high above, observing. I rested my head on the steering wheel, wondering if that horrible hollow feeling would ever go away. It felt like my chest was caving in under a great weight. Today, I sat in the parking lot of a different shopping center, feeling something totally different. Not riotous happiness, per se – more like a sense of being reasonably content (as well as unseasonably hot). I shopped for food for my animals, and food for myself. I bought a package of rainbow colored pens, thumbtacks and a red rosebush. Also some pansies, a cyclamen and later, a bouquet of nearly black roses. I romanced myself in mundane ways, and took care of business. I ate supper, and read movie reviews in the paper. In the evening, I sat on the porch in the gathering dusk and talked with the man who I once shared a life with, about this and that – hard things and easy things. Mosquitoes danced around our heads in thick halos. My heart did not hurt in a huge way.”
∞ “Being Loud and Demanding” by Sally Parrott Ashbrook.
“Then searing pain gripped my eyes, and I could no longer see. I realized that I had gotten ounces of soap in my eyes, and there was no way for me to get it out on my own. “Help, help!” I called out. There were several people shopping within a few feet of me. Couldn’t they see what happened? Why weren’t they responding? Somehow, despite my pain, a voice in my head told me, Stop making such a big deal about this. You’re making a scene. It’s just a little soap in your eyes. Just deal with it. I thought in response, You don’t understand–I can’t see. So instead of piping down, I got louder, much louder. “Someone help me! Someone, please help me! Get someone to help me! I sprayed soap on my face!” I was gesturing to my eyes. I was in so much pain. For a moment, I thought of the scenarios when desperate people call for help and no one comes. There was no way to move without sight. It felt like forever, but it must have been seconds, until an employee and a shopper came to help. I managed to communicate that the soap was in my eyes. “Just walk over here,” they said. “I can’t see! I can’t see!” I cried out. Were my eyes open? How could they not know? I don’t know. They took my arms and guided me to a large sink in the center of the body care section, and I began flushing my eyes with water.”
∞ “Self Care is Not About Smoothies / 1″ by Laura Holway.
“Sometimes the idea gets blended in with juice cleanses, methods of self improvement, and a big case of the ‘shoulds’ (I should go on a run instead of napping, I should really meditate more….) I don’t want my self care to be about control. I’d rather it be about figuring out how to listen to myself. This year I’ve been thinking a lot about the word ‘thrive’, which has given me the opportunity to frequently check-in with myself and ask: what do I need? This is a hard question to remember to even ask. Then, once you ask it, it sometimes feels daring to act on the response you hear without looking around to see who your answer might inconvenience. The thing I keep remembering is that I’m the only one who is in charge of putting ME first. It’s that whole ‘put the oxygen mask on yourself before the person you’re assisting’ metaphor thing.
My post-birthday travels gave me plenty of time for life reflection, which led to numerous impassioned scrawls in a notebook, “Self care is NOT about smoothies!” being one. I’ll start with some good old contradiction: I have a blender and occasionally make smoothies, and I’m not hating on you smoothie-loving folks. (In fact, google has assured me that for many people, self care is indeed about smoothies.) I think I just like a good acronym: you can say it ski-naas OR sky-naas (rhymes with ‘Linus’)– go ahead and pick. No, but really– I do think that self care is about so much more than smoothies, though smoothies get a lot more internet space. I’m thinking about things like boundary setting, figuring out how to connect to a supportive community, wearing clothes that make us feel like our best selves, and finding the resources we need when we’re sick or down or scared about a loved one. This is the kind of self care that I care about a lot and want to learn how to get better at, and this is what I hope to write about semi-frequently– if you can deal with the bad title for the series.”
∞ “Self-care is not a pie filling: a PSA.” by Esmé Weijun Wang.
“I’ve been told several times over the last few months that I’m good at self-care. Hearing this always makes me laugh a little, because I’ve historically been awful at taking care of myself.
Here are some things that I’ve been good at in my adult life: working hard; being ambitious; working hard in order to go after said ambitions; creating goals; drinking too much in the process of attempting to calm down the ruckus in my head, some of which was greatly exacerbated by the frantic pursuit of my goals. Did I mention that I’m good at working hard?
I had to become excellent at self-care because I was forced to. I’d been living with chronic illness since I was a preteen, but this past year, I started again; I became sick in new ways, with new diagnoses, and with that epoch of beginning again, came the fine point that if I didn’t become exquisite at caring for myself, I would probably die.
I don’t believe that I’m being punished for my previous workaholism. I am not atoning for sins. My life is what it is, and that’s okay.
But I do want to tell you — you of the fledgling business, you who have been working at the self-employment thing for a year or so, you of the empire that lords upon all empires — that if you feel as though you might need a dose of self-care in your life, you’re probably onto something. Should you be so fortunate as to consider yourself healthy, I’m telling you now that self-care isn’t something that you do when the proverbial brakes are shot. You do it because you’re worth caring for. You do it because you are a living being who needs to be fed. You are busy, but you’re not a machine.”
∞ “A Thing Of A Thing That Is Just A Thing: Self-Care With Hannah Black” with Hannah Black and Sara Black McCulloch at The Hairpin.
“It’s just that can self-care be about surviving in a way? And can it lead to a truth like, “Sometimes you overextend yourself because you only value yourself if others value you.”
HB: Yeah, maybe I’ve been unclear. When I’m talking about caring for each other I mean also caring for yourself. I mean “each other” as against some vague idea of a ruling class that is against us, a kind of pedagogical or political or aesthetic stance, because maybe not everyone who reads this or reads my work has that position—of being against those in a position of power and dominance—but I would like us to all at least grasp the enormity of that situation. So YES, of course you should also care for yourself and what survives in you. I think self-care is about survival, and that survival is both this agency-free necessity, like, also your boss wants you to take of yourself—that’s the deal of wage labour or whatever, but I also am willing to go out on a limb and say that it’s important that individuals survive and that identities survive. And if I’m valorizing loving others that’s not in opposition to loving yourself. I sometimes feel like, when people say, “if you don’t love yourself no one else will love you” that it’s punitive, and my response is like “oh shit, no one will love me??”
Some people have loved me when I didn’t love myself all that much, or I didn’t have the feeling of loving myself, and I am grateful to them and they changed me, and I loved myself more in the image of their love for me, and I hope I did the same for them, or continue to do so. I should use the present tense, it’s an ongoing thing. But it’s the same as we were saying about self-hate, “self-love” is just a vague name for some capacity to live or something. To get up in the morning, to remember to breathe and eat, to feel ok, etc.
SBM: As a way to confront the ruin?
HB: Yes! And to recognise that we are living in ruin and that means maybe we are also living in hope—in hope of improvement rather than anticipation of a totally new disaster, because the disaster is already here.”
∞ “On Audre Lorde’s Legacy and the “Self” of Self-Care, Part 1 of 3″ and “On Audre Lorde’s Legacy and the “Self” of Self-Care, Part 2 of 3″ by lowendtheory.
“Mundane murderousness, slow death (which may in many cases not be slow at all), has taken institutional form in part as a consequence of the consolidation of health care as a for-profit industry that defines health as the capacity to work. “Health,” in this context, is measured by the health of racial capitalism. Such a definition means that being healthy is understood as having the capacity to optimize your ability to be exploited. No medical leave, then, for the English prof who’s battling cancer. No capacity, then, to decide for herself what her health needs are and to act on that decision—the social infrastructure of neoliberalism has already coded giving its workers that much freedom, that kind of autonomy, as an unaffordable extravagance.
Care as extravagance. Historically speaking, it is here, in the Reagan era, that the “self” of self-care emerged. Donald Vickery and James Fries’s bestseller Take Care of Yourself: A Consumer’s Guide to Medical Care was published in 1981, and formed part of a larger explosion of “self-help” publications that encouraged a readership increasingly clobbered by a neoliberal assault—against liveable wages, workers rights, social services, and the welfare state writ large—to take it upon themselves to manage the consequences of that clobbering. And I would argue that the “self” of self-care came into being precisely as an effect of that management, as well as of the clobbering that both preceded and accompanied it. It euphemizes as a goodwill gesture (the benevolent “take care of yourself!”) an imperative that, if elaborated, looks much more like a relation of coercion and discipline (“take care of yourself or your job will go to someone who does”; “take care of yourself lest you fall ill and get saddled with medical debt”; “take care of yourself because you have no right to expect that society will”; “take care of yourself…or else”). The self of self-care, all of this is to say, has a history that should serve as a caution toward attempts to make self-care an unqualified good. It is a self that is specifically calibrated as a defensive reaction to the combination of austerity politics with reinvigorated forms of gendered racism that cut across the entire social formation.”
∞ ““Big Pharma” & Privilege: Or Why I Wish Allies Would Stop Using This Phrase” by Camilla Laurentine.
“That ignores the fact that the entire medical system is an industry, meaning it’s meant to make money. It is broken. The entire thing is broken.
I am not saying that the pharmaceutical companies in America aren’t corrupt. I have a disease 1 in 100,000 people get. There is no approved treatment. There is no cure. I will never in my lifetime see either of these things, because it’s a rare disease that won’t make money for the pharmaceutical company if they spent tons developing it. Trust me, I have a very vested interest health and medical reform.
But I depend on medication to live and function in a relatively normal manner (most days). I take a diuretic to keep my brain from being crushed by my cerebral spinal fluid. I take a beta blocker to keep my heart from going into tachycardia just because I sat up or, Gods help me, stood up instead of laying flat on my back constantly, but also to make sure that my aorta doesn’t get any bigger than it already is by keeping my blood pressure down. If it does, I run the risk of it dissecting from my heart. I take an old school antidepressant to try to prevent a constant headache instead of just wanting to die from horrific head pain and various other symptoms any time a storm comes through.
And so, even if you aren’t about to spout off how I’m not taking care of myself in the way you feel I should be when you say Big Pharma, you are 1 in probably 60 people I encounter in a given month not using this term to lay some shame on me not working hard enough to not be sick.”
∞ “‘Wellness Guru’ Belle Gibson lied about having brain cancer, profited from lying about bogus cancer cures” by Xeni Jardin.
“Belle Gibson deserves professional help.
But here’s what the rest of us deserve: an end to the “cancer hero” mythos that allows people like Gibson and others before her to exploit ignorance about evidence-based cancer treatments. An end to the exploitation and profiteering of bogus “cures.”
From cannabis oil to vitamin C megadosing to juice fasts, there’s far more bullshit info out there about how to part with your money and line the pockets of fraudsters like Gibson (and Mercola, and Oz, and Burzynski, all sonofabitches and murderers in my opinion) than there is free and science-based info about how cancer works, how treatment works, and how to get affordable and effective care.
So yeah. Fuck Belle Gibson.
But fuck the culture of magical thinking and hero idolization that built her myth into a profitable business, ignoring decades of real science, and placing vulnerable people with cancer at real risk of death.
Fuck everyone who enabled her, and profited along with her, knowing she was lying. Fuck everyone who forwarded her dumb bullshit lying articles around to people like me who actually did have cancer.”
∞ “Popping Pills and Practice” by Deborah Castellano.
“I see my doctor regularly. She is v. tight fisted with all the “fun” meds and I don’t think I could get a Vicodin out of her if it meant she could retire on a island of her own. But at the same time, she treats my conditions very aggressively.
Even with good coping mechanisms, good medication and a good support structure, I still have days where I’m anxious and can’t sleep and occasionally have days where I am depressed for no reason, sometimes my fibromyalgia causes me so much fatigue and pain still that I can’t get out of bed. Despite these aspects, I still feel the normal human range of emotions and generally only feel sad or stressed when I’m “supposed to”. I’ve worked since I was fourteen, I pay my taxes, I write, I ran a con, I go out and have fun doing all the things early thirty-somethings like to do, I have loving relationships and I own a car and a condo. My medication makes it so that instead of being too depressed to be motivated or paralyzed with inexplicable fear and anxiousness or too bedridden with pain and fatigue on the regular, I can lead a fairly “normal” life.
Which is why at this point I get confused about why shame needs to be implemented for taking advantage of first world medical care in order to lead functional lives. Are there people who abuse prescriptions? Um, yeah. They’re addicts like the people who are alcoholics and have other drug abuse problems. Is that the majority of people who take meds? No. There’s this idea that bugs the shit out of me that there are all these people who take medication they don’t really need and this medication *magically* takes away all of their problems and they don’t need to deal with them. Last I knew, you needed to take like a fistful of Xanax or are shooting H to get that effect. Which… see: addict.”
∞ “The Opiate Naughty Step” by Sue Marsh.
“Today, the 28th April, 2014, with little fanfare and not even one triumphal march through the streets of Worthing, I was quietly removed from the opiate naughty step.
After 31 years, 8 GPs and a host of farcical tales so infinite, I could never recount them, I now have a repeat prescription for the tiny amount of opiates that don’t even nearly get me through a week.
A nice lady phoned me from the surgery a few weeks ago and explained that my “usage was stable” (?!!?) my needs regular and unchanging (oh if only!!) and (this is a subscript, she didn’t actually say these words but if you imagine they weren’t implied you’ve never been on the naughty step) “I haven’t murdered anyone at knifepoint for an extra dose or three”
This meant, that just like everyone else, my prescriptions could now be issue automatically and repeatedly without the usual accompanying junkie-hop.
From now on, they would be sitting there waiting for me, accessible and benevolently provided. This is almost too much newness for me to deal with in one big step.
For the last 30 years, I have had to
A) Writhe miserably for a minimum of 72 hours.
B) Call for an appointment that morning or put a request through to speak to the duty doctor. (“The duty doctor is often very busy you know, he’s there for emergencies, blah blah”)
C) Then, I’d have to explain all over again, every time, to even the most well meaning that, yes, I do still have very severe crohn’s, no there haven’t been any miracle cures, and no, the missing two-thirds of my bowel haven’t grown back.
D) Collect 4 x weekly prescriptions to take to the pharmacy that could be kept there for each Monday morning.
E) Collect said prescriptions weekly, first thing on a Monday morning in-between trying to get two sleepy and often uncooperative pre-teen boys ready for and delivered to school.
For most of those 3 decades, this has been the bane of my life. Way worse than the actual symptoms themselves.”
∞ “It’s Personal: Some Reflections on Nonfiction Writing and Chronic Illness” by Anna Hamilton.
“I am a terrible writer on my worst pain days, especially when the writing in question is done for my day job as part of a disability employment policy consortium. Ask me, on a high-pain day, to write an office-appropriate email that will be sent to more than one person, and it will take roughly five minutes before I figure out that I actually have to type the email on the keyboard and can’t just write it by glaring at my computer screen. After that, the best anyone can hope for is a string of words that, when read aloud, sound like they’ve been to hell and back via Google Translate. Actual creative writing on those high-pain days? Forget it.
Having a body that doesn’t quite keep up with one’s mind is extremely weird in general; my opinion is that having such a body/brain mismatch is one of the worst parts of chronic pain that doesn’t involve nondisabled folks’ doofy, “well-meaning” commentary about what you should be doing/eating/thinking to manage your illness. Most of the time, my brain is raring to go—neurons firing, ideas for essays or commentary pieces bouncing around, wanting to race through whichever two books I’m reading at the moment, the whole bit—my body, on the other hand, is not.
Another bugaboo is the insistence that the reading public tends to have on reading memoirs and/or personal essays that fill the “grief porn” hole a little too neatly, particularly when it comes to disability or other non-average life experiences. Addiction memoirs are usually a shining example of this tendency; there’s no slaking the public’s thirst for details that are so gritty, so creepy, so disgusting—and so inspiring at the same time, because goodness forbid that the people reading the book be unable to learn something from the writer who is so unlike them.”