Wednesday, January 16, 2008

'Fight' or 'Resist'?

I have been thinking about disability and illness and the word and idea “Fight” since we are told to ‘fight’ against our illness, against the society and individuals who discriminate against us, or our circumstances. Indeed in our society, the fighter (‘To contend with or struggle against’) is what we are supposed to be, from where our societal heroes are erected (“Oh how plucky, they have cancer but fight by climbing Mount Everest”). But how do you ‘fight’ something that is part of what you now are. In Camus, The Plague, the doctor reminds that the plague is not an external enemy, but like so many thousands of other diseases, is something that resides within, something already a part of us .

I just rolled to the assistant manager due to two notices from THE MANAGEMENT. The first stated that all noise was to be eliminated between 10:00 p.m. and 9:00 in the apartment building and that “loud conversations” had been heard between these periods (Did I mention the Manager has ‘didn’t get to be prison guard, dammit’ mentality). The second announced that starting at 8:30 a.m. on Monday the carpets would be ripped up starting from the Third Floor (my floor, the carpet that gives me access to the sole elevator). So I went to inform THE MANAGEMENT, that if they are going to tell tenants that “loud conversations” were not allowed until after 9:00 a.m., I am pretty sure the sound of workmen ripping up carpets at 8:30 a.m. breaks the ‘quiet time’ regulations. Also, that I expect to be notified of the times when I can and can not expect access to the elevator. I am the only wheelchair user in the building, the manager knows where I live (since she has been avoiding me for 10 straight months – she really has a "issue" about the disabled) so…

I know you don’t come here to listen to my apartment noise disputes but I still thinking about “fight” and “fighting” and there is nothing more than I would rather do than to manufacture a miracle. Lupus, CFS, MS, Parkinson’s, ALS, Huntington’s, CBD, Rett Syndrome, Lymes, Leigh’s Disease, MND’s, Friedreich's Ataxia, and those host of other diseases of which the idea “to fight” seems humiliatingly ludicrous (Linda my AB reader couldn't get the "humiliating" - so here it is, telling a person who HAS had a heart attack to 'fight' as in to eat better, exercise more, etc to avoid another heart attack is okay I guess; telling a person to 'fight' while they are HAVING a heart attack is just humiliating. When your body is doing something completely and utterly out of your control, someone implying that you SHOULD be able to control it ('Fight') is rude and yes, implying that you are some sort of lesser being as THEY would be able to control it, is humiliating and lucidrious - Does yelling "Fight it damn it fight it!" at someone with a Parkinson's Brain Fog make you a nice person? Is it of use?). These medical conditions and so many more, while separating us from the idea of control expose our humanity in our very loss of what we once may have personally held to be our reflection of us and our human value. If you are having a “what the hell?” moment I mean that we, the disabled, the diseased are no longer what even WE dreamed what makes the cream of humanity (which is where most people place themselves mentally).

See, probably the one word which has been used to define me more than any other in my lifetime is: fighter. But I also have never gotten into an exchange of blows in my life. In junior high I was placed in a mathematics class I found, for lack of a better word, boring. So I challenged the Vice Principal at the end of the first week to simply give me every single test for the year and if I passed them, move me on. I believe my phrase to his statements about that is not the way things are done is, “What exactly do YOU have to lose.” I mean, knowing me was knowing whatever hair-brained scheme I was attempting that year, from running an ultra-marathon in Africa in which the majority of people who enter never finish to biking across North America. There were always people who had reasons why what I had planned wasn’t going to work, since I am not a natural athlete (actually quite the opposite, since one side of my body is rather a different length than the other). Often they didn’t work, even after hundred or thousands of hours of prep and training. Work harder, train harder, force myself more, never give up, and never give in; these were how I dreamed and lived. I spent decades on the idea of Elizabeth=fighter.

I am not competitive (stop laughing!), okay not competitive in the normal sense; I would rather lose endlessly to learn how to be the best in the world than win and be the best in town. So if I could, in some act or series of acts of impossibility, cure myself or anyone else, be it dragging myself up the 88 shrines or crawling on glass, I would do it. Fight! Struggle to reach that objective! Drive back by engaging! To make (one’s way) by striving! Do you know the feeling? The desire? I used to run the .75 mile breakwater, racing the passenger boats and every time, at the end, instead of slowing, I wanted to launch myself into a long dive past the breakwater below, to continue the contest. Okay, listen up Elizabeth: That kind of thinking right now is CRAP.

You can take the girl out of the able bodied world, but can you take the able bodied thinking out of the girl? No matter how many sports I take up in my wheelchair or struggle in and no matter what odds I put myself against, I will never, in the long run win because…..I have a disease which is progressively degenerative. There is no fucking “line in the sand” because to do this is to reject my own body and quite honestly that is a quick trip to a hospital (besides being emotionally insensitive to myself!). What am I fighting? That I am sick? That I am disabled? That I can’t do what I have been used to doing all my life? That I am seen differently? THAT I AM DIFFERENT NOW? Note to self: GET OVER IT! Seriously.

Now for us ‘fighters’ we think, “can’t fight, must mean I surrender.” No. Okay. I have a new word. One which I think I have been training all my life to fill. Yes, some “fight” but from here on, I “resist.”

Resist: To withstand, to obstruct (ho ho!), to strive against, to endeavor to frustrate or counteract, to oppose, to thwart, and yes, even to disappoint. To resist is to “elude in a baffling way,”: “This behavior defies explanation”, to hold out, to protest, to REFUSE TO COMPLY.

To quote from Edgar Allen’s Poem written to ME (we disagreed a LOT) titled Elizabeth: Elizabeth, it surely is most fit/In thy own book that first thy name be writ,…"Always write first things uppermost in the heart." Or in common usage; I do not deny that I have fear, and fatigue, and hope and terror and frustration; I do not fight the emotions nor deny they exist, but I RESIST, every societal expectation on what to do with them (If I want to cry in the street, I will – deal with it, I am!). I wrote this piece because I am fatigued to the point that breathing wearies me. And yes, I have a heavy dose of “Remember all you could do last year?” with a side dish of, “Do you really want to think where you will be next year?” Which probably led to the desire that some scheme emerge in which I stand again, victorious against….what, hands that can’t turn over a sheet of paper, a body too weak to roll over in bed? That is part of who I am, as is falling over, falling down, gasping, choking, siezing, etc. Resist the urge to pretend to be what I was, resist the attempt to ‘put on a brave front’, resist the attempt to wallow, to hold a pity party: table for 10 please! Resist the need to re-state (every damn week) that as long as I can think and communicate I am still a human being. Resist giving up, giving in or holding on to habits or identities that will not work any more or simply take too much useless effort. Resist the urge to lie down. Just because I am ornery, and my “behavior defied explanation.”

Do not fight, do not hold on for the sake of doing so: but resist. I will be reborn 100 times, all Elizabeth, and all still with a breaking body, a mind which thinks odd thoughts and attempts to enact them, because smiling is resistance, sometimes. Taking that pain pill sensibly when you have never been sensible your entire life can be resistance can it not (to your natural imp of “suck it up!”)? To do, to act, to sleep, to push yourself knowing the consequences, to saying NO to others because you do not want to push yourself….knowing the consequences: Acts of resistance, all of them. I will not struggle to “win” against my disease, or “win” against a society which I am, in the end a part; but I will resist every millimeter. I imagine both my body and the medicos will have to beat their lessons into me. Okay! I can be, when I wish, a VERY slow learner.


Hermes said...

Personally I hate being told to fight my condition, or being told to just accept it. I want to lead as 'normal' a life as possible and to live with what I can't change and change what I reasonably can. I always suppress a laugh when my very over weight doctor tells me earnestly to diet and get more exercise. Others don't always, if ever, know what is best for us. Another great thoughtful post.

The Goldfish said...

Quite right, Elizabeth. I'm not sure about the differentiation between fighting and resistance, but it is certainly a matter of choosing one's own battles and not, under any circumstances, allowing other people to choose them for you.

It is rather like when someone is criticised for not fighting for their failing marriage, when you know that in that particular case, it is a far more noble battle to attempt to walk away without damaging one another.

I cannot fight my illness, but I can fight the idea that my life is over until it actually is.

TomCollins said...

just wanted you to know, i'm out here resiting with you. you aren't alone.

KateJ said...

We're always hearing about people "fighting" their illnesses, as in "she lost her battle against cancer". Now a dear friend of mine has just had the dreaded C diagnosis. She's 80, OK, but certainly not ready to go just yet ("not old at all then", says my 92 year old neighbour... it's just a matter of perspective).
People are already talking about her "fighting" it or giving in gracefully as in "well, she's had a good run for her money", and "she is 80 after all". My friend loves life. But she can't fight, just as you can't. She is totally in the hands of the medical people. If she dies, does that mean she didn't fight hard enough?
Resistance, I like that. I'll pass it on to her. I think it will appeal.

Lene Andersen said...


That's all I got right now. Just Yes.

Veralidaine said...

They are tearing up your carpets and didn't see fit to give you any say?

....Maybe you should give them a notice you will be applying broken glass to the ground and taking Management's shoes for repair tomorrow at 8:30 AM and they have no say in it.

glassroses said...

Right on! I love to read here--there's always something thoughtful and well-said.

Fighting is also sports/battle language, and it's neither a competition or a war when health is at stake. I want to see less "fighting" language and more admiration for graceful acceptance. Kind of Zen. You know, I can't do as much as I could do a few months ago or a few years ago, but I am who I am and it's fine to be who I am.

My husband said something a while back along the lines that he wouldn't give in so easily, that he would fight back more than I do, though probably causing himself more damage and pain. He thinks I give in too much or don't do enough. I don't understand what that means since I do everything I can to maintain function, see my doctors, go to PT, use alternative treatments, too, do as much as I can. I push myself sometimes too far until pain prevents me from doing anything but enjoying the way my body becomes one with the couch. Maybe I'm not angry enough? Maybe I'm okay with things more than he would be? But I grew up with physical disability, too, and I think that changed my perspective. I can control what I can, and what I can't, I let go. At least in this arena, not in the rest of my life or when I think a change can be made. Then I become rabid activist grouchy grrrl.

"Fighting" disability or illness can lead to more disability or illness, crashing the system more quickly. I think accepting who I am is fine, and it's when I start worrying about whether I measure up to others' unreasonable expectations or what they might unfairly think that I give myself a lot of angst.

I have to apologize I use personal examples in comments so much, but your writing invites comparisons and changing our own beliefs. When I read what you write, it makes me feel better to know that you and your other commentators feel the same way as I often have.

ms bond said...

Damn Skippy! I like resist. And it sounds so much more sophisticated than plain ol' fight. "I will resist your feeble attepts to place me in that nice little pigeon hole labeled MS patient" It's's perfect! Thank you so much for giving me a word to fling back in the face of all those war mongering "fight it" types.

Gaina said...

I have recently figured out - at 35 - that I'm not going to 'grow out of this', which was a shock and quiet upsetting, but now I am getting my head round that and learning to work *with* what I've got and use it to my advantage.

Have you explored Taoism? The whole philosophy behind that is to put yourself in a position of control, strength and inner peace by *not* resisting. The Barefoot Doctor writes some fantastic books on the subject and how it relates to modern life.

I feel kind of embarrased when AB people sometimes I'm 'brave' or that they admire me, when in actual fact I'm really just getting on with it because the alternative sucks! haha.

Zephyr said...

Go ahead, hold that pity party, invite me. I promise to not feel sorry for you, but I will listen and nod empathetically.

``When your body is doing something completely and utterly out of your control, someone implying that you SHOULD be able to control it ('Fight') is rude and yes, implying that you are some sort of lesser being as THEY would be able to control it, is humiliating and lucidrious -

*nods* This reminds me of when I`m having a panic attack and people tell me to breathe. My response is usually ``Don`t fucking tell me to breathe, I`m freaking out because I CAN`T breathe! If you want to be helpful, get my goddamned Ativan; otherwise, shut up.`` Or something like that. Telling me to breathe is not only stupid, it makes me even more anxious, because it reminds me that I can`t breathe.

Zephyr said...

Fighting is actually dangerous for people with my disease, arthritis, caused by a fucked-up immune system - fighting stresses me out, and makes my immune system go wonky. Fighting makes me anxious, which make smy immune system work harder to attack my joints, which leads to more pain! Fuck fighting.

Lisa Harney said...

I really hate the whole "fight" language around illness and disability. It's just so... I'll point to what KateJ said above. What kind of talk is that?

Katrin said...

The 'fight' mentalitiy seems to go hand in hand with the 'get better' mentality of some folks (like my mother). So if one doesn't get better (or heaven help them they 'get worse') it is their fault because they didn't 'fight' hard enough

alphabitch said...

I used to have a piece of paper on the fridge, which I put away because it is fragile and ripped and I didn't want it to get wrecked. It was a page from those annoying 'codependent-no-more a day' calendars that my old roommate used to bring home to use as scratch paper. It said: "If it doesn't make sense, it doesn't make sense. We don't have to waste our time trying to make sense of it." I've found it useful through the years, and this post makes me think about it.

It's harder than it sounds.

Elizabeth McClung said...

Hermes: I hate being told to fight my condition, or worse, have to defend how I try every day to make my life 'normal' and my GP or some Specialist is there acting as if they are the final arbitrator when they wouldn't want to live my life for 1 day (nor do I see them volunteering). Thanks.

Goldfish: Yes, I agree not letting others choose them for you, it just seems that I am a bit more ornary than most since everyone seems so suprised when I say THAT word ("No") - it makes me wonder how many people are just "processed" and how good everyone seems at deciding what is best for someone else. Yes. Sometimes, the people in the situation are (shock!) those who can best decide the needs or actions to take.

I hate the idea we are sold that "our life is over", I hate that we should have to defend ourselves in that base sort of way. As long as I can roll my eyes in suggestive ways, I am still in the game.

Tomcollins: Thanks you, today is a day I need to hear I'm not alone - on with the Resistance! (Do you think Llyod Weber might do a musical about us?)

Kate J: The whole language is like a battle - when someone (a blogger) sent me a link showing me that the people who are mentally perky and "fight" thier cancer die in exactly the same percentage as those who are sarcastic and make raspberry noises I knew what side I was on. Please send your friend my best (and you might want to tell her that I hoping she gets some medical people who care about people more than whether there might be a traffic jam on the way home tonight)

Lene: No! Oh....wait, I mean yes too! I have to say it has been a whole 24 hours and I've already relapsed as I was plotting tonight to get placards and take on a government ministry (I'll take 'em with me!)

Veradine: actually the manager told us the the quiet time for US (the tenents) was until 9:00 a.m. but the quiet for HER and the workers was 7:30 a.m. Err? I think is a case of micro-meglomania: "I'm in charge here and I make the rules, and the rules for you don't apply to me!"

Glassroses: well, if you get to acceptance of where you are, you are ahead of me, I am always yo-yo-ing in and out of that state (more out than in).

I think you might be right about the perspective about having a disability, you learn on that: I can do X, but I can't do Y and you either find another way or do what you can and let it be. What irks me is that some days it seems like everyone AB thinks that we have such boundless energy we should be researching our condition 5 hours a day, doing alternative therapies 10 hour a day and what? Taking on the medical establishment another 5 hours a day? How about trying to live a life as much as possible but in a way so you can do the same again tomorrow (instead of being in bed)?

I like personal comparisons, as I tend to think that my experiences are rather odd, so it comforts me to know that someone else faces what I face, in attitude, idea or even condition.

Ms. Bond: That's me, so sophisticated, like today when I was with my 'employment case manager' who had pics of a baby on her wall and I blurted out, "You've propegated!" And she made a nervous laugh and said, "That's not what people usually say but I guess it is true." Yeah, I don't think of my body as a battleground, or the days of my life as a war; and I don't want it to - no one is raising a memorial to the Great Elizabeth McClung War 2006-20??.

Elizabeth McClung said...

Gaina: um, I have read SOME toaism, but most of what I remember is the Tao of Pooh - I think I am supposed to be the rock?

"I feel kind of embarrased when AB people sometimes I'm 'brave' or that they admire me, when in actual fact I'm really just getting on with it because the alternative sucks!" - This rings so true for me that I want to make it into a T-shirt: 'I'm not brave, it's just the alternative sucks!'

Zephyr: Yes, I have noticed the most authoritative types are the worst actual people to have in an emergency - I think in my last flying-out of wheeling into cement incident there was a point three different "people who knew what to do" where pulling on three different limbs.

I have noticed that the EMT's here are the worst for, "Come on, fight it, you don't really need help do you." - Geez buddy, did you think I speed dialed you for a date?

yeah, pooh on fighting (which is why I didn't invite you for boxing - actually thought that through - arthritis+hitting things hard=unhappy)- - when are you going to email back? As you so eloquently show on your blog, it is often more fun to "make love, not war!"

Lisa: I don't know, why does the self titled 'leader of the free world' need to declare war on everything from inanimate objects to concepts. People don't sell cars, they engage in battle with the competition. No wonder us people who just kinda sit there are encouraged to enter the temple of rhetorical violence.

Katrin: I so agree, and worse, I have noticed that the "you must fight, must battle it" don't seem to take responsiblity when you do exactly what they say and end up in bed or the hospital. Then the word that comes up is "Sensible" - what about disease is sensible?

Alphabitch: I can't tell if you just applauded my post or bitch slapped me. I think with optimism I will go with the first and say.....errr yeah! (because some days you are too darn deep for me to figure out)

Marla said...

i really like this post. I find the term 'resist' quite interesting. I can see where fighting something you have so little control over would be a challenge, worse...being told by others to fight would be infuriating. I believe many people tell people in your position to fight and want to believe it is all about fighting because then they feel less scared about having an illness such as yours. If people can blame illness or disorders on something thst person has done than they can feel that maybe they wont get sick too. Like with many mothers try and blame her problems on what i feed her or the shots we have given her. That way they can distance themselves and say to themselves that it wont happen to their child.

Marla said...

i also wanted to add that i like the word,'surrender'. It comforts me to surrender to something and then work on areas where i can make an improvement. I dont look at surrendering as giving up but an acceptance of a situation. I dont think i am explaining it well.

em said...

Not that it matters what I think, but I think that by looking your present circumstances square in the face, and applying the fighting that you have used all your life, then realizing that you are going to have to refine your techniques and documenting all of this, you are meeting your circumstances in the strongest possible way. I want to use the word warrior to describe you, but it starts to sound dangerously close to plucky so I won't.

But I really believe that documenting your experience is deeply valuable. And I admire your resistance manifesto.