Wednesday, 21 March 2012

march 21, 2012

i've just come from an equinox ritual. heart softened, balance restored. i'm feeling so connected and alive. what i like to call the happy :)

equinox is all about the perfect balance between light and dark, inner and outer, positive and negative, passive and active, concept and manifest reality, etc. opposites united and combined to make something else altogether. synthesis, if you will. tonight, i want to (a) call something out and (b) apologize for my ongoing participation in it. i want to pay attention to the internal and external expressions of it. equinox balance, right?

all of this got stirred up because of a conversation i had with a friend last night. while we were venting, she quoted some unasked for advice i gave her once before this whole saga of chronic pain began. i was like, "oh shit! whoa! i said that! gah...i'm one of those people!" it left me with a strong need to apologize for all of the other moments i've done that and also take some time to outline what we were talking about so that fewer people make these kinds of mistakes.

my friend and i were venting about how directive, intrusive and unintentionally judgmental people are about chronic health conditions. it doesn't matter what kind - depression, chronic illness, chronic pain, disability. the attitude is the same: "hey, i bet *i* have the magic knowledge you need to fix yourself! i could be a hero! i could be the one to take away your pain and change your life forever - if you would just let me!" the trouble is, it's never that simple. there is no magic answer. you know it, and i know it. also, no one likes unasked for advice. especially at parties.

in case you're not clear what i'm talking about, it sounds like this:

have you tried eating more broccoli? all the vitamin c in it has this soothing effect on the nervous system. you know what? i bet you'd have less pain if you ate fish more often - omega 3 fatty acids are magical. what's your calcium intake like?

or this:
have you seen a chiropractor? a naturopath? an osteopath? a muscular therapist? i know this guy...let me give you his number.

or this:
have you tried cutting out sugar? meat? bread? legumes? dairy? nightshades? blueberries? have you tried the candida diet? have you tried changing your food-combining habits? putting protein and carbs together in meals is *really* hard on your system. do you eat enough garlic? do you know you can take it in odourless tablets? how's your sleep cycle?

or this:
have you tried pilates? colonics? the wild rose detox program? do you do yoga? i have this amazing teacher that talks about controlling pain with the mind...maybe you could come to class with me sometime!

 or this:
have you tried tiger balm? i find, if i twist my ankle or whatever, it really diminishes the pain. helps me heal right up!

because i was one of these (un)helpful fixers before living with chronic pain, i know you all mean well. you're trying to relate to us, to what we're going through. and you really want to *help*. i acknowledge that you are trying your damnedest to improve our quality of life with whatever random knowledge you have. because you are a good person, and you care. but, SERIOUSLY??!?? you don't know the first thing about this! because this is not a twisted ankle!!!!

i really want you to listen to what i'm about to say and try your hardest to believe me: you're not helping. at allllllllllllll. not even a little. you're just making us angry and, for some of us, strong emotion causes flare-ups in body tension and pain. see how that's not helpful?

why the anger, you ask? oh, lots of reasons. first of all, it's none of your business how we approach our health. second of all, it sounds like you think we're not trying hard enough. third, it sounds like you think that our information is incomplete and that our attempts at healing, so far - which are most likely varied and multitude - don't hold a candle to your singularly magic info. isn't that sort of what you're saying? that you think you might know better or have more or better information about the thing we're living with all the time? every day? thanks but no thanks, fixer.

i'm not trying to mean about all this, but a few things need to be said:

1. chances are, we are trying our damn hardest to either resolve or manage whatever is going on.
2. chances are, we already know lots about this condition. we've probably tried what you're suggesting. eight or ten or twenty times. last year. and it didn't work. but we don't want to embarrass you by saying so because you're sure it's what we need.
3. more often than not, we are just being polite by listening to you and will gossip to our friends about it later to relieve the feelings of frustration and resentment.
4. your ignorance is showing, and you're underlining a power imbalance between us.
5. initiating a conversation that includes asking details about someone's health, in public, is generally bad form.
6. i read that magazine article, too. why don't you ask me first before describing it?
7. all of this sounds suspiciously like a rescue mission. don't try so hard, ok? we can just relate as people and sip our drinks rather than sliding into these victim and expert roles. which: ewww.

i can almost guarantee that we've had the test you're suggesting or at least considered that particular cleanse. we've seen a psychic *and* an energy worker. sometimes at the same time! we've done that kind of therapy. like, four years ago for a year. or we can't afford it. either that, or we don't want to do it. and you need to accept that this is not your business.

chances are, we have researched every possible facet or cause or purported treatment or solution - however mainstream or out there. chances are, we've gone to specialist after specialist that knows way more about our circumstances than you. chances are, despite our efforts, we have not found that magical thing that resolves it for us. you need to go into conversations like this, knowing...that someone living with this has way more information than you. that would be the awesomest paradigm shift evarrrr! you may be desperate to fix us, but we're most likely just trying to work with and accept what's happening day-to-day. your shiny, liberating advice won't change that.

here is a little chant you may want to use in these situations:
step back, saviour! that's bad behaviour!

instead of advising, repeat it to yourself silently as you listen fully and attentively to whatever the person wants to say about what they're living. oh, and please don't drill us for details about our health, mr. acquaintance at a party. it's embarrassing and weird. imagine someone trying to puzzle out how to fix you in front of your friends. i actually had a stranger come up to me once and say, "i noticed onstage that you seem to have a shoulder injury." i replied, "uh, yep." he replied, "so, what happened?" as if he was settling in for a long counseling session in which he would resolve everything for me. i didn't even know this guy's name yet, and he was taken aback that i didn't want to discuss the details of my health with him. that's weird, people. this may come as a surprise, but it doesn't feel awesome to endure random concern and advice from your upbeat, well-meaning, pain-free face.

the other thing i want to say is this: you're probably trying to fix me because you're uncomfortable. think about it. for some of us, there may be hope of finding the root cause of whatever it is we're experiencing and possibly even becoming asymptomatic as a result...but, in the meantime, we have to accept and manage the reality of this. acceptance of what's going on with our bodies and minds is really important because denial tends to make chronic stuff harder emotionally. when i'm in denial about these injuries being long-term if not permanent, the bad days are so much rockier. it's a rollercoaster with unexpected twists and turns, and the oversimplification of this "fixing" advice is, therefore, profoundly alienating.

if i tell you that i'm working on accepting that this is something i'm going to have to manage ongoingly - possibly for the rest of my life - don't give me a fucking pep talk about not giving up on getting back to 100%. you're obviously not listening because what i've been saying is that i have a new 100%, and it's this. this is it. you're making it harder for me to accept something that's already hard because you're insisting i focus on a mindset of going back to the way i was before. you want me to not be broken anymore, right? because it's uncomfortable. for you. i get it: who wants to face the possibility that a formerly normative body can experience life-changing injury and pain and then have to adjust to a new, not ideal reality? it could happen to you. in these moments of unasked for advice, you're telling me: try harder to fix yourself. there are still some things you haven't tried to get back to normal. why? so you can be at peace? whatever dude.


now that i've given lots of context, i am going to apologize for my part in this dynamic...and offer a(m)mend(s):

to everyone who i have ever given misguided, well-meaning, unasked for advice - including the friend i was venting to last night: i am so sorry. i know now how much i've pissed you off and misunderstood your circumstances and judged you and frustrated you. i misjudged (so profoundly) the effect of what i was saying and doing to you. my intentions were good, but my behaviour was bad. mea culpa.

i believe that all my actions leave an energetic residue in this life, and that's not always easy or possible to undo. i also believe in making up for my mistakes. for every moment that i caused anger, frustration and alienation due to saviour behaviour, i pledge, from this moment on, to step up and express solidarity and support instead. i know now that trying to medicalize or inform you about your body or your options is not helpful or comforting, and i promise i will not do it anymore. furthermore, if i'm out and i overhear someone putting you through the "have you tried...?" line, i will offer to intervene. i will speak up about this weirdness that is far, far too common. if you want my help, i will help in getting that saviour to leave you alone.

to all of you out there who are trying hard to keep a sense of dignity and balance about something you're living with: i get it way more now, and i will do my damnedest to confront saviour behaviour when i see it happening in my midst. whether it's about race or class or ability or health or whatever. it has the same root: assumption of expertise and power over.

it's hard to have hope when you face the ups and downs of these chronic scenarios. the uncertainty is killer...not knowing what's around the bend, or what kind of day you're going to have tomorrow. not knowing if your back pain is going to make you cry on a first date, or if stupid people saying stupid things will make you regret going to a party and then cause you to stay home the whole rest of the month because you don't want to deal with that crap. we live enough isolation because of bed rest or unemployment or hospitalization or social anxiety or pain. let's stick up for each other and try to head off isolation at the pass, shall we? a quick intervention, like: "hey man, no more advice. she's on top of her own health." would do wonders for a lot of us. let's try it!

in the meantime, i promise not to be one more person who thinks she knows better than you about what you need. i promise to see your strength and your flaws and work at seeing *you* in a fair, even-handed way. no victims. no heroes. how does that sound?


  1. "i have a new 100%, and it's this. this is it." and to the rest as well: Amen.

    I'm a lot of years into chronic pain/fatigue.

    invisible chronic things should get gene therapy so they flash like camouflage octopuses or something.

    1. Pearl, your comment made me laugh really loud for a long time. Thanks <3 Let's talk about this the next time we're in a room together! You know, in a not-fixy way.

  2. glad you laughed. yes, some room sometime,