When 'heroic' and 'inspirational' aren’t dirty words
I know for most people with disabilities the words “heroic” and “inspirational” are dirty words. Too bad. Terry Fox was my inspiration when I was able bodied, and not because he ran half way across Canada. Quite honestly, anyone who actually wants to run across Canada might be touched in the head (it is a very large, very EMPTY country). What inspired me was that with only a year of training, with a prosthetic leg made of a pogo stick and motorcycle shock absorber, he started running a marathon a day. One requirement of heroism is courage; defined by some (including me) as ability to confront and defy fear, pain, danger, uncertainty or intimidation AFTER having experienced them. What made Terry Fox my hero for twenty years was his humanity; he swore, he had bad moods, he would fight with his accompanying friend and driver Doug Alward to the point of not talking for days, he cried, and after two months he believed he was experiencing a mental breakdown. But he still ran, every day. Because that is what he had decided and believed in doing.
Here’s someone else I think is heroic; the person after months of intense depression, with no possible vision of a future in which their bones don’t ache with depression, or where each minute of life is counted off and the only thought is the relief death would bring. And yet, this person, with no belief in a future without depression, forces themselves to get up, to move, to go outside, to do something that day; not because they believe it is helpful but because they simply refuse to give up or give in. Or someone in this state, who attempts suicide, survives and continues. I know that person is climbing their personal Everest one day at a time, just to get up and have a shower.
This post was originally going to be about burn-out. This week, besides being told I have tendonitis in my shoulder (which I guess gives me one functional limb for a while), being told that my home care company is closing down I also reached such a state with my equally burnt out care-giving partner that I will be going into respite care. This might be called “falling down with a splat.” Indeed, ironically my shoulder might be partially damaged because I get flipped out of my manual chair about once a week (and land on that shoulder).
So, you see, I am in particular need of a hero right now. I hope in hating the word “inspirational” you haven’t forgotten it means “to inspire?” Because I need someone to come forward and tell me that yes, burn-out happens, being helpless happens, being alone and scared, being frustrated and crying happens but you just wake up and keep going. I need something to inspire me to fight for the future; even it if is a murky, uncertain and painful one. Except that people with disabilities hate being called heroic, or inspirational. And women in positions of high level management hate being singled out as path setters; but I hope that doesn’t mean they want the other women who look to them and try to follow their path to fail?
I think people with disabilities need to reclaim those words because I can’t be the only person who has won a passport to what Dave Hingsburger calls the “cool club” to find themselves falling down....hard. I don’t need a world class runner like for a hero, I need a woman who is in chronic pain, chronic fatigue and still says, "I’m going to shower today."
In the end, the one person I found to tell me about getting back up into the chair was, surprisingly....me. Actually the able bodied me. Before going to my first Canadian Nationals in Epee I wrote a post about Terry Fox and myself. In the post I remembered the ways I motivated myself when previously bedridden; fantasizing about running and reminding myself that success is determined by getting up once oftener than falling down. I didn’t make my goal, stated in the post, of reaching the top 16 at the Nationals, but I made the cut (the athletes who advance to elimination) which qualified me for the Summer Nationals in May 2007. By then, I was in the wheelchair; called to a rather different type of competition. I am not going to make a “will to power” talk and vow to you that I am going to fence epee again, or run again; because I’m not. And right now it looks like I’m not going to be doing those 5K and 10K wheelchair races I was planning once my PT told me it would be “impossible” (I have a strange obstinacy to the word “impossible”). But hey, I’ve still got one good limb, right? I just need some new dreams; and the will to get back up.
To my 2006 able bodied self: “Because the fastest way to get rid of the pain is to simply not get back up. And for some of us (many I believe), there is always the whisper, the temptation begging you to not get back up. My life as a success is defined not by how much or closely I win, but by getting back up. Sometimes that takes a week; sometimes it takes a month; sometimes two years; sometimes 10 years. But know this, I GET BACK UP.”
I sure could use some company about now; someone to tell me that yes, sometimes Life is dragging us behind its pickup truck but damn it, those gouges will heal (Well, maybe not THAT one, but you’ll get a cool scar) and life will go on. Because I have always had the intention to lead a heroic life; one in which I face my fear, pain, uncertainty and intimidation. And having a disability certainly isn’t about to change that. I just don’t know how....yet.
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I don't know if I can really help. But I think I do know what you mean by needing "inspiration."
I grew up with attention deficit disorder, though I didn't know it at the time. I wasn't diagnosed until age 26, duiring my first semester in graduate school and after five years of working as a writer. Back when I was a teenager, all I really knew was that staying organized, keeping track of all my things and managing my time well and staying focused on my work when it was time to complete assignments for school were all huge, overwhelming tasks.
I did meet all my deadlines for school so I still got good grades. But, one, I met these deadlines BECAUSE I had these deadlines: deadlines are one of the few things that succeed in helping me get focused and get things done. And, two, even then, I often completed assignments in part by pulling long hours and late hours. Some of that was because I had so much struggle just NOT daydreaming when it was time to work.
But the message I kept hearing when I was growing up was how critical it was for any good student -- or, indeed, for ANY successful person in ANY field or profession (though some more than others) -- to be WELL ORGANIZED. And focus well. And keep track of their things and manage their time wisely. I never, never heard the message that a person with zero innate ability to Just. Be. Organized. And. Just. FOCUS. Could still succeed in life if they just worked around their weaknesses by ____ (insert accommodation here). I just heard; Be organized. And the unarticulated subtext to that was, "Or you will fail."
And I remember I started to be conscious of all this during my teen years. There was one day in particular, I think in chem class, when all of this consolidated for me: that the message I always heard was "Be organized" but never with a suggestion what to do if you just COULDN'T.
As it happened the teacher was talking about how, in his own student days, he always took his notes home then copied them over again, in part to get them down more neatly and in part to reinforce all the material. And I was sitting there thinking how overwhelming it was just to get all my assignments done on time even just doing the bare minimum that I needed to do to satisfy project requirements. And thinking how inadequate I already felt that it was so hard to do something that the adults around me seemed to think ought to be so easy for someone as smart as I was. And now I was sitting there hearing how, if I were truly organized like a good smart student like me ought to be, then not only should I be meeting the bare minimum I needed to do to get my assignments done but I should also be copying over all my notes from the day each night. Which made me feel even more inadequate and scared for my future. Because the teacher was saying all this as part of a wider lecture on why being organized in general is so important for life. And I remember really wishing I could meet, or even at least HEAR ABOUT, just one person like me who had similar problems staying focused and getting themselves organized who still found some way to succeed in life.
What I wanted was to meet, or at least hear about, someone with attention deficit disorder who was still successful in life. But as I didn't know I had ADD back then, I didn't know that was the diagnostic label I was looking for. All I knew was, I desperately wanted some role model who reminded me of me, someone I could look up to and just know that I would be okay. If I could have gotten specific tips on how to compenstate for the fact that organizational skills, and the ability to stay focused for me would just point blank never be innate, that they would always be something overwhelming that I'd have to work at all my life--yes, that was part of what I was looking for and that would have been stupendous if I could have found it. But what I wanted most was just to see someone like me out there and know that it really was possible to be like that and still find a way to just ... go on.
For that type of inspiration I tend to look at people I know living ordinary lives despite the barriers they come up against.
I don't see the point in climbing a mountain or running across a country. I have more admiration for those who can devote their precious energy, pain tolerance, time remaining on this earth, whatever, to their own lives, their own families, their own communities. That's the stuff I think is admirable.
No disrespect intended to all those mountain-climbers, they just don't make me excited is all.
Having lived through the gradual - and occasionally dramatic, sudden and irretrievable - deterioration in my own condition, I'm not convinced the answer lies with being able to get up.
This may be, of course, because I have the sort of condition which makes ploughing on regardless downright dangerous, so getting up isn't an option for me.
However, what I can say is that the first time is the worst.
It may not feel like it at the moment, but you have developed enviable levels of skill in dealing with physical setbacks: you will come to terms with the new state in which you find yourself once your current crisis has settled. You will do this because you have done it before, and your mind therefore knows what to do.
I have found that the best thing (for me) to do is often to try to distract myself from the evidence of my body's further deterioration into terminal decrepitude because I have learned that my subconscious can do the coming to terms bit without me needing to play an active part in the process.
When the pain is too severe for me to do that, I have two oft-repeated mantras:-
"This too shall pass" -apparently a Chinese proverb. Better, in my opinion, than the Western, "time heals all ills". Because time clearly does nothing of the sort. But the immediate and current agony and despair do pass.
And,
"That which does not kill me makes me stronger".
When I was a child, my father used often to dismiss people's problems by saying, "Ah, well, what doesn't kill you makes you stronger".
I thought that was the most appalling nonsense, and downright cruel.
But I have learned over the last sixteen years of pain that it is - for me at least - true.
Sometimes it is all you can do to simply endure. Sometimes expecting yourself to get up is putting unreasonable demands on yourself. Sometimes the absolute most you can do is to ride out the crisis and emerge as yourself at the other side. And then you can get up.
I wish you well, and I have great faith in your capacity to put two fingers up at the world and at your impairment.
Ironic. Elizabeth ... you're one of the people who inspires me.
Horaay, no pitchfork and burning torches....yet.
Andrea: I am really glad you wrote this all out - I found it an experience I could understand, and I think a lot of people will too.
Mary: I had a mountain climbing thing, but then I got to the top of a few mountains and went "That's it?" Simply living day to day deliberately seemed a lot harder. Which is why I like people like Lars Von Trier who has more phobias than probably anyone, yet somehow manages to actually make films (even if he has to take a canoe with him to rock in).
Lady Bracknell: I sort of meant a metaphorical "get up" not standing ala Rocky or planting the flag on a mountain. I just feel that if what I am planning isn't outraging PT's or OT's or doctors then I probably am being too soft on myself.
I appreciate your faith in my ability to um, have a consistant life view - I always said in Church that my spiritual gift was a sardonic viewpoint. I do however think that what doesn't kill me often leaves really interesting scars and ability to tell when the weather is about to change.
Rachelcreative: Back at you! You actually make art, while I just sort of moan online - admittedly a very practiced type of moaning. I really like the "Bad hair day" and "Awake in Bed" pictures.
I think the danger comes when either a non-disabled person claims a Disabled person is "inspirational" simply for doing what the non-disabled person would find commonplace, or when Disabled people are made to feel that they must perform some outlandish physical feat to be considered worthy by non-disabled people. The Disabled people who inspire me are those who have spent their time and effort working for the emancipation of other Disabled people - often at times when it was considered unfashionable or dangerous to society.
Consider the torch lit!
Thank you Elizabeth, for the second paragraph in your blog which acknowledges the achievements of a person with depression. It's the small victories that often go unnoticed by 'mainstream' - the things that are taken for granted as 'well, you should be able to do *that*, shouldn't you!'
That paragraph has - encouraged me, and affirmed me as well. Thanks again.
Chris Page - Thank you for explaining that to me, it makes perfect sense. Cheers!
Tigerwarriorprincess: I think of people who fight major depression, unidepression or Bipolar II as the great warriors because they recieve no praise and yet continue to fight, often while undervalued by those around them.