When I dropped out of school, my father lectured me: “you can work when you’re young and play when you’re old, or you can play when you’re young and work when you’re old.” He was trying, ineffectually, to save me from a life of poverty and misery. What he didn’t realize was that life had not been play for me. My childhood was hard and filled with struggle. And I did not drop out of school to play and avoid work. I dropped out to save my life — it’s a long story and a digression, but suffice it to say that I wanted to work.
I have always wanted to work. I have wanted to be productive, to be a part of things, to carry my own weight, to do something that matters, to feel valued. But my disabilities are slippery and it doesn’t matter how much one wants to work if others aren’t willing or able to offer opportunities. So I have done what I could, gotten by as I could. There hasn’t ever been much play . . . but that’s starting to change as I hit middle age and realize I have wasted half my life trying to fit into society’s boxes. I will never fit and I have been throwing away my one-and-only precious life in trying to.
It’s time for me to learn to live a life that fits the shape I was born into. It’s time to color outside the lines and make my own picture, unconstrained by the image society has pre-drawn in bold, dark lines across my life. And it’s finally time to play.
My father’s life has been very instructive. He lectured me to work when I was young, just as he did. But he did not get to play when he was old. At age 50, he was laid off from the only job he’d ever worked. No one wanted to hire a man only ten or fifteen years from retirement with a science education from the 1950s. He grew depressed. The money ran out. He took to his bed. He fell ill. Now he’s 79 years old and dying from cancer and diabetes and seems, though I hope I’m mistaken, to be unsure whether he really lived. He followed the road map. He did everything he was supposed to do. He put off his own life in order to build something for the future. And the future never came. Or it came, but not with the rewards he had worked for.
I look at my father and I see that I could have taken the path of university, profession, marriage, children, mortgage . . . and ended up in the same place as if I’d taken the path of travel, freedom, nature, art, opening life to all sorts of different people. My father has no more luxury or security than if he’d lived a life filled with play. And he has no play. He has his memories … small snippets of children’s eyes alight at Christmas. That’s what he has to live on in his declining years. It makes me cry, because I love him. I would have wished better for him. He followed his own advice and it led him to a grey dead end. I think I can be forgiven for shrugging his advice aside and seeking a different path for my life.
When I am at the end of my life, old, perhaps ill, facing death, what will I have? All my life will be spread out behind me like a colorful pack of playing cards fanned across the dealer’s table. All we can do in life is play the cards we’re dealt, but no matter what we’re holding, there are more cards in the deck and we can choose whether to take a hit and risk going over or stand firm and risk losing everything by daring nothing. When we reach that point in life where little is left but memories, what will we remember?
My friend, Charlene, pointed me to another blog by Leigh. Leigh writes about growing up in Australia and being taught “888” — 8 hours for work, 8 for rest, and 8 for play. This seems to have come from the same book as my father’s advice about play. My father said to put play off — keep it in reserve as something you can do later, with the leftovers of your life. Leigh points out that the idea of weaving in 8 hours per day isn’t much different, because:
“Mathematically speaking, if I live to be 90 years of age, I would have slept 30 years, worked 30 years, and played for 30 years. During my play years I am expected to obtain a college education, juggle a marriage and a mortgage, get pregnant, raise kids, plan out my vacations, waste endless hours in traffic jams, not to mention making appearances at social functions out of obligation and expectation.
“When you consider life’s responsibilities and societal expectations it really does cut into your play years. Based on the triple 8 plan, I would be lucky to experience five years of significant play time. With that said, 5 years out of 95 on the planet, call me selfish, it’s just not good enough for me.”
Now, I’m in an interesting situation because the choice has been taken from me. I tried so hard to work but couldn’t. My body is able. My will to work is strong. But I have never been able to keep a job for more than a couple of weeks. I went to the Department of Vocational Rehabilitation and, at first, they were eager to put me to work. But after running tests on me, I was told that I am too broken for them to help. I was given “we’re so sorry” and “go and get about five more years of therapy and come back and we’ll try again.” I was in therapy from 1972 to 1982 and various sprinkled years after that. If it hadn’t made me ready to work by 1994, it wasn’t ever going to.
I have come to the conclusion that I am not precisely “sick” so much as I am the human equivalent of the canary in the coalmine. In the days before sophisticated instruments that could detect the safety of the air quality in a mine, workers would bring a small canary in a cage to work with them. Birds are particularly sensitive to air quality and the little canary would keel over early, warning the miners that they’d better get out of that tunnel before they keeled over, too.
I am not sick; I am just more sensitive, like a small bird. Our society is toxic and some, like me, serve as canaries. It’s a shame that our distress is only noted as a personal failing, some weakness of character. It is really a warning sign to everyone else. I cannot function in society as it has been constructed. I am the canary that keels over and lays on the bottom of the cage. Fortunately for me, in a moment of lucidity, I noticed the door was unlatched and now I am flying away.
Any who would seek to condemn me — who would point to me and say, “how disabled can she be? She is living a life of play!” should instead turn and point that finger at everything in their own life that makes them feel jealous of a disabled person living on a tiny fixed income. Anyone who would seek to punish me for flying free should stop and wonder why my play makes them so angry. They have more than me — more money, more shelter, more savings, more security, more food, more access to everything that makes a life well-lived. And more money *should* mean that they have more freedom than me. But I have . . . something . . . that angers them because they work so hard and have so much yet feel something missing when they see me walking in the shafted sunlight of the forest on a “workday.”
Anyone who notices me traveling with my cat, writing words, making music, drawing pictures . . . maybe even managing a smile or laugh after years of darkness of spirit . . . sleeping in a tent in a towering forest . . . sitting by the fire and dreaming . . . watching the stars wheel across the desert sky at night. Anyone who sees my freedom and joy and shouts that it must be stopped because I am poor and disabled and thus not justified to live a happy life with the scraps I have . . . that person should instead ask themselves what I have that they do not. If they want it but do not have it, what they have traded it away for? And was it worth the trade?