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Jesse Kuhn /

In early 2009my doctors forbade me to take any nourishment by mouth. My progressive neuromuscular disability had advanced to the point where my swallowing muscles were seriously impaired. Eating or drinking caused me to aspirate, with the consequent risk of fatal pneumonia. 

Now my nourishment consists of cans of a viscous, nondescript liquid that is pumped into my stomach tube. It is simply utilitarian, totally lacking in pleasure. And I run the pump at night, while I’m sleeping, so I don’t even have the sensation of becoming full. 

Until I stopped being able to eat, I had no idea what a complex role it plays in one’s life. There is the loss of that primitive rhythm of hunger and satiety that is so satisfying. There is the absence of the pure sensual pleasure of food–its taste, its aroma, its texture. There is the absence of meal-taking, which creates a rhythm for the day. I felt strangely adrift without it. And then there’s the social aspect of meal-taking, the sharing of friendship and conversation. My not eating was also a loss for my wife, who used to delight in cooking for us. It was a medium for her to express her love and nurturance. We both regret that loss. 

In early September my friend John visited, bringing the makings of a summer feast. My wife leapt at the chance to cook for someone she cared about. They ate wild salmon with a mustard yogurt sauce, garlic roasted potatoes, the last of the fresh summer sweet corn, and a sumptuous salad. I encourage people not to be self-conscious about eating in front of me. It would seem mean-spirited not to. Why should anyone else be deprived because I am? But their enjoyment of that meal, expressed in near-orgasmic moans, tested my generosity. 

Sometimes, when food is not in front of me, I fantasize about it. I feel nostalgic for outstanding meals I have enjoyed. Often these memories are tied to places, like the lavish buffet breakfast served at one of my favorite inns on Cape Cod, or the tart lemonade my wife and I sipped in the courtyard of an inn in the Berkshires. Those places will never be the same for me. 

I know that in time, such painful deprivations can become ordinary grief. I will assimilate it. I’ll recalibrate my sense of normality to include not eating as I have done with every other loss–being unable to walk, being unable to care for myself, being unable to breathe on my own. This is what we all do in times of crisis and change. We use our psychic energy to re-create ourselves, rather than wasting it on futilely trying to deny the parts we don’t like. 

But I’m not at that stage yet, and I don’t know how to shorten a process it seems too glib to call acceptance. Right now I’m at the weeping-and-wailing stage, and I have to consciously remind myself that there are still pleasures to be had from life. There is still my wife’s smile and touch. There is still the beauty of art. There is still a cheetah’s grace. Gradually these will come to occupy my consciousness, and the loss of eating will recede. 

But right now I am hungry. I am so, so hungry. 

Paul Kahn was a writer, editor, counselor, poet, and playwright. He died in January. Reprinted from New Mobility (Feb. 2010), a magazine about active-lifestyle wheelchair users and disability-related arts, media, advocacy, and

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