I am swearing, cursing, denouncing myself because…well, this is where the story becomes thin. I have dropped something. In this case, an envelope intended for the for the letterbox beside me. Fortunately the Netflix DVD that just fell from my hands has slipped into a space between a leg of the postal box and a bolt anchoring the thing to the sidewalk. The envelope is wedged there, standing upright. This makes it easy to grasp. Minimal bending from the wheelchair, a little prehensile action from my working left arm, and damned if I haven’t retrieved the thing. I’m holding it now, preparing to aim once again at the letterbox. Which is what feels so pathetic, and that is the word. Pathetic that something so simple has, and has for 42 years, been so difficult. And since this is my life, why can’t I accept the obvious and inescapable? The answer lies in my Anger Management Handbook, the one I’m supposed to be reading now. Helpless. I feel helpless. I don’t like feeling helpless, even though I am.
Trigger thoughts. That is what they are called in Anger Managementese. Brief flashes that take one to some old and desperate place. Childhood, of course. Pre-disability. When every moment triggered thoughts of the unthinkable, the collapse of the family, center of the child’s universe, real or imagined. Yes, it got to be a habit. Fear-helplessness followed by self blame. The easiest way to cope. Which almost six decades later should be badly out of date. But apparently not, psychology having a seemingly infinite time span.
For a disabled person, this matter of helplessness arises from moment to moment. Take this last moment at the mailbox. It is a two-handed process, the dropping of a letter in the postal bin. The box opens with a pull-down door. The built-in handle is easy enough to grasp. What’s harder to grasp is the concept. One hand can pull down the door and keep it open, while the other drops the envelope inside. Unless there is no other hand. All hands on deck. Sorry. There’s just the one. Okay, so there is a way to do everything, or almost everything, in Quadriplegia Land. In this case, the one and only hand grasps the envelope, one of its fingers extending to grab the handle and pull it down…then releases the fingers gripping the envelope…then lets go of the handle. The very act of describing this reveals it for what it is, a neuromuscular feat. A rehabilitation high wire act. But not in the doing, or the experiencing.
For I am in public, that is part of it. The weekly farmers market is under way in Menlo Park. The locals are parking, approaching in pairs, all converging on a one-block-long display of cabbages, artichokes, olive oil, artisan pizza, not to mention this morning’s Turkish singer. They are out, on display as much as the vegetables, and so am I. People are looking at me. Who knows if they really are, but this is the feeling. There is a ‘we’ to all this. My rolling approach makes me odd enough, thank you very much. And now I am revealed as not only different, but weak and vulnerable, managing simple tasks with difficulty…and easily rendered helpless. An adult player in the community? Or something less, Tiny Tim fumbling with his mail, inwardly denouncing himself, outwardly managing a façade of God-bless-us-every-one cheer.
I get the letter in the mailbox and proceed to the market. The place is crowded. The narcissus stand is not, however. I buy two bunches of the fragrant flowers. They will make my apartment smell downright floral. Quite pleasant, really. I open my wallet, extract six one dollar bills, hand them to the flower girl…who in the normal manner of exchange attempts to hand me the blooms. Problem is, I only have one hand. And that hand is trying to shut my wallet. Never mind. I take the flowers, leaving the wallet open on my lap. This is foolish for many reasons. But, I don’t know, my confidence is not where it needs to be this morning. I am letting people’s expectations drive me. Always a big mistake. I rattle home, bouncing over Menlo Park’s latest road resurfacing effort, trying to keep my concentration on both the pavement and my wallet. One second’s distraction and all my money and credit cards could silently slip off my lap. Which would spark a Self Recrimination Festival of epic proportions.
To be disabled is to sense the precariousness of life in every rolling, stumbling moment. Take this moment, bouncing home from the farmers market. What if my wheelchair fails? What if I misjudge my relationship to the traffic? Mechanical failure, being struck down the streets, the vulnerability inherent in pursuing life with half a body…there is no escaping it. Yet as I get older, everyone seems to be approaching this state. Cancer. Aging, arthritis and decline. All these experiences drive home the sense of human fragility. So how to lead a life?
Minutes later I am working on the same problem. My van and I are heading south toward Palo Alto, a Sunday morning talk on the matter of fair trade. My concentration is fierce, cranked up considerably since a close call a couple of days ago changing lanes. Driving, controlling the car, ready for the fateful, it all takes vigilance. And does this make me a safer driver? Perhaps. But there is some middle ground. For excessive fearfulness makes me drive less. And driving less makes me forget essential skills. Like, for example, the one-footed sliding from accelerator to brake. A definite use it or lose it principal operating here. It is, in short, safer to take chances. And there’s more. In driving there is no room for self recrimination. Well, not much, anyway. It’s all about survival. If something goes wrong, it has to be dealt with…no hand wringing, just action.
Fair trade. A talk sponsored by the Jewish Progressive League, or somesuch. Pictures of Guatemalan women showing their woven wares. They have been through everything, these people. A woman at 75 looks 95…her longevity extreme in that Central American country. Her life in many ways is more fragile than mine. Death is routine. Injury and physical loss frequent. How to live a life? Ask her. She isn’t asking for safety or security, just for this. A fair trade. Her labor for my money. It’s a deal.