Ouch weblog: individual blog entry
16 Sep 07, 8:23 AM - 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 Oscar Pistorius 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 quote 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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