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.
1 day ago