Making God Laugh

by Dean Kramer
July, 2005

They say the best way to make God laugh is to tell Him your plans.

As a young adult, I used to have heroic fantasies of rescuing people and guiding them from danger using my wily survival-oriented mind and performing athletic feats of derring-do. “MacGuiver” was my favorite TV show. In it, the main character was able to make anything he needed in a crisis out of chewing gum, duct tape, rubber bands and other ubiquitous bits of unassuming flotsam. I scouted the outdoor and camping catalogs for things that might someday come in handy. I learned to use weapons, practiced martial arts and took weekend retreats in the woods with the clothes on my back and a knife. I was ready for whatever came next.

Multiple sclerosis came next and God is probably rolling on the floor laughing off the part of Himself He allowed Moses to see. Now my mind’s wiliness is inversely proportional to the heat of the day. The mercury rises until at some point in the 80° range the wiles that haven’t melted are obsessively focused on locating the nearest air-conditioner. As for athletic prowess, it’s a triumph these days when I’m able to lift myself off the ground after doing some yard work or cleaning up a spill on the kitchen floor.

Despite a numb and uncoordinated right hand and the need for a wheelchair or scooter outside the house, I live fairly independently. I do what’s necessary for myself—personal care, household chores, minor repairs, some yard work, and, because I can still drive, shopping. People with progressive diseases often seem to give up at some point. Some stop being interested in people, others stop taking care of themselves or stop eating. You’ll know my time has come when I give up shopping because, to paraphrase the NRA slogan, and at the risk of provoking a celestial chortle, I’ll give up shopping when they pry my debit card out of my cold, dead hand.

Much of what I’m able do is made possible by the tools I’ve chosen to aid me. I’m a blessed and fortunate woman to be living in the USA at a time when disabled people have access to an increasingly sophisticated technology providing options for independence. I’m grateful for the independence that technology affords me, yet I’ve become increasingly dependent upon those tools. At this point, in fact, I really couldn’t provide the quality of life I’ve come to enjoy without them. This is especially so given the dearth of services in the rural area where I live.

Even with all these aids in my life I sometimes feel down-hearted—frustrated by diminishing skills and annoyed at how long it takes to do even the simplest things. I can no longer handle too many activities in a single day. There are days when I get fatigued doing the few things I’ve chosen. I need longer rest periods to recover and, depending on how hard I’ve pushed, I don’t always get back what I’ve lost.

Like many people with significant levels of physical disability, I find myself prone to periods of anxiety due to a sense of vulnerability. Tragic disasters such as 9/11, the tsunamis in the Indian Ocean and, most recently, the London bombings can bring this anxiety to the fore. Even in the best times, though, it is seldom completely absent.

In crises, what do disabled people do? Sure, there are stories of valiant service animals or of human colleagues guiding or carrying someone to safety. Those stories are newsworthy because they are exceptional. What happens to the rest of us? If I found myself in such a situation, my imagination tells me a manual wheelchair would carry me only as far as the first barrier. A powered scooter would run until the batteries lost their charge. Medication would be non-existent. I’d never be able to keep up with fleeing family or friends and I wouldn’t want them to slow down for me. Sometimes, in my disaster fantasies the only heroic act I can conceive now is to accept the likelihood of my lonely demise with grace.

To allay my anxieties I turn to my inner MacGuiver, always seeking creative ways to solve problems and approach the challenges posed by daily life with an increasing level of disability. I delight in finding helpful uses for items not originally designed for the disabled. For example, instead of paying for an expensive Cooling Vest, I bought an inexpensive fishing vest and loaded the front and rear pockets with frozen gel packs. It works just fine. I was dressing for a casual evening out recently. Finding I had too much to carry but not wishing the bother of a purse while rolling in my chair, I decided to try the vest as a wearable handbag without the gel packs. The pockets held everything I needed and were easily accessed while sitting in a wheelchair.

I’m also willing to explore new uses for my mobility aids. I’ve used my scooter to haul pipe for a new drainage area beside my house, to haul lumber away from a deconstruction site and, most recently, to pull cable off a spool by anchoring one end of the cable to the scooter and driving slowly away.

I know that wearing a fishing vest instead of carrying a purse isn’t a major contribution to World Peace. Using my scooter to lay cable won’t protect my country from terrorists. But I felt free and relaxed being able to roll along with my necessary possessions close and accessible. I felt capably independent being able to unroll that spool by myself. And every disabled person I know who has accepted disability and said, “Ok, but I’m still going to have a life!” has learned to think this way. We learn to outsmart health and service bureaucracies. We become skilled hostage negotiators with family and friends. We invent new ways to do what used to come easily—even creating the equipment needed to do it. We do these things as if our lives depended on them. We all become MacGuivers. In the becoming we are empowered. And we keep going as long as we can.

No one can say what will happen in a true crisis—who will live and who will not. Disaster may strike and, no matter what I’ve planned, my chair may become stuck or my batteries drained of power. If fortune and my wiles desert me and I stand at last before The Master, my now-useless debit card dangling from my fingers, I hope He’ll wipe tears from His eyes as His chuckles subside and say, “Golly, you were funny! Peter, let her in.”