Bully Pulpit: Adaptathon

Tim GilmerFor the past few months I’ve been chronicling my battle with severe infection that eventually led to amputation, but contrary to what I wrote last month, my left leg, Lenny, is not gone forever. Only below the knee. In a moment of self-pity, I exaggerated my loss. In truth, I still have Mini-Lenny to care for, and he is becoming quite the troublesome child.

Mini-Lenny’s sibling, Riggs, my strong right leg — if a paralyzed leg can be said to be strong — is jealous. And no wonder. I handle Mini-Lenny with uncharacteristic gentleness, wrapping him with protective padding, being careful not to bump or bruise him. Riggs is aware of my blatant favoritism, and he is growing sullen and resentful.

Riggs has every right to feel this way, mainly because Mini-Lenny makes everything more difficult. Riggs knows how important having a foot is, even a paralyzed one, and it galls him that footless Mini-Lenny has been given a pass. The insult is magnified every time I try to transfer. In the past I would place both feet on the floor or ground, then hoist myself with my arms, pivoting and turning — airborne for seconds — on my way to a bed, toilet seat, car seat, whatever. Both feet provided invaluable support; both counteracted the tyranny of gravity.

Now when I transfer, Mini-Lenny, with no foot support, dives straight for the ground as I’m suspended in mid-air, throwing me off-balance and compounding the weight of gravity, putting added stress on my left arm. But I’ve found that a simple adaptation helps. Doesn’t it always? I tether Mini-Lenny to Riggs just above the knee with a Velcro strap just before transferring. The stabilizing effect helps, but Riggs now carries the extra weight of his pampered sibling, and it grates on him.

When I tell friends and acquaintances about my new disability status — I’m now a card-carrying para/amp — they appear genuinely sorry for my loss. But they don’t understand that the psychological transformation from para to para/amp is not complicated when compared to the massive insult of a spinal cord injury. My SCI friends and I refer to an amputation (apologies to you amps who know better) as a “flesh wound.” Not as complex as an SCI. A loss, yes, but the loss usually stops at a leg or arm. With SCI, the losses pile one atop the other — nerves and muscles, bladder, bowels, blood pressure, sexual performance, skin integrity, lung function, temperature regulation, immune system — anything that is regulated by the central nervous system.

I need to have a talk with Riggs. His jealousy has blinded him to Mini-Lenny’s true plight. Like all of us, myself included, Riggs only sees the external image, not what goes on inside. Like all of us, myself included, he is prone to generalize, oversimplify, and yes, discriminate. He sees Mini-Lenny as someone dealing with a mere flesh wound.

Riggs forgets that any loss affects self-image, attitude, emotion, confidence, relationships, and more. Any loss requires adapting to survive.

Every day.

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