HUMOR

Clip-N-Save Advance Medical Directive

by Mike Ervin

From New Mobility, August 2005. Reprinted with permission of magazine and author.

Dear Medical Professional of the Future:

I, Mike Ervin, being of occasionally sound mind and Piccasoesque body, do hereby declare this to be my advance medical directive.

I feel compelled to do this after all the Terri Schiavo stuff that went down this year. My demand is to be kept alive and kept alive, then kept alive some more. Thus, I also feel compelled to make this declaration in an open public forum, with the readers of this column serving as my witnesses -- at least three or four people, no doubt.

I would feel no such need for protection if my wish were to die. In the wonderful world of for-profit medicine, the chronically medically inconvenient who wish to be good sports and heroically step aside need not speak twice. I'm sure a single death wish on my part would be honored as sacred and irrevocable, even if vaguely uttered in a morphine-induced stupor to the guy who brings my hospital food tray.

So let me say again, just to be clear, that my demand is to be kept alive.

Now I know what you're about to say, dear medical professional. You're wondering if I'm thinking this through completely. As I drag my muscular dystrophied body within a year of 50, I may be closer to the bleak land of onerous infirmity than I realize. Soon I may require a respirator to breathe. When my diaphragm surrenders, my lung mucus may have to be suctioned out through a trach.

My swallowing muscles may lose their bounce and I'll have to be fed through a stomach tube. No longer will I experience the joy of lasagna.

And what if I lose my agility of mind? What will I be left with then? What if the cacophony of dementia drowns out all my self-awareness and memory of those I love? What if I'm in a coma or worse yet, "minimally conscious" like Schiavo, unable to speak, like being buried alive?

I repeat, in case there is any lingering ambiguity, that my demand is to be kept alive. Do whatever it takes. If my tongue rots off, fetch me a prosthesis. If my sphincter fuses shut, drill me another.

Because even if I'm nothing but a moaning mummy, my life will still have value. The one thing that no trauma or disease can ever take away from me is my ability to be a political pain in the ass. In fact, the more of a gasping lump I am, the greater a pain in the ass I become. That's the beauty of it all.

Maybe I'll even start a great liberation movement. All ye burdens to society, rise up! All ye minimally conscious, stand and be heard! By refusing to get with the program and go away, you pose the greatest threat to the supremacy of the dehumanists. Each time you are suctioned, each time you are rolled over in bed, you strike a blow for justice. Those of you with private insurance coverage have the greatest power of all. I envy you. Each breath you take blasphemes the god of quarterly profits. Isn't that alone worth life's price of admission?

Be proud, my fellow albatrosses, my deadweight brothers and sisters.  United we can save the frazzled members of the species Homo sapiens. By making them meet our demands, we may force them to slow down enough to finally figure out how to genuinely take care of each other.

I'm sorry, dear medical professional. I digressed. I guess I got intoxicated by the revelation that I can still be an activist as long as I still have a pulse. And so I intend to keep that pulse pumping.

(A note to all readers: If you do not yet have an advance directive and find the prospect of the time and expense it takes to prepare one daunting, don't worry. You can just clip and save this one and adapt it to suit your own purposes. For instance, you can cross out my name and write your own, substitute your disability for mine and remove that stuff about my sphincter. But be sure to post your advance directive in a place where you'll have enough witnesses to defuse any dispute that may arise as to the authenticity of your wishes. A simple Queen Mary-sized billboard along any busy interstate should be sufficient.)

Mike Ervin is a Chicago-area writer, disability activist and co-founder of Jerry's Orphans.

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