I am just back from a glorious four-day writing retreat in a desert landscape in central Oregon, where I went with my good friend Miriam. The time was special for so many reasons. The property, which has several cabins for writers and artists, is situated on the edge of a lakebed that is dry for much of the year, but fills partially with water during the winter from snow and rain, and at this time of year is on its way to drying again so it’s speckled with water pools and areas of mud and textured sand, rife with visual interest. On the other side of the road are mountains, still partially snow-covered at this time of year. I was hiking there in the summer once and found a rattling snake in the middle of the path, my first encounter with a rattlesnake in the wild. The place is a paradise for birds—water fowl and songbirds; the adjacent wildlife area boasts 280 species of birds—and they mostly ignore the presence of a few humans.
Light traveling through this landscape transforms it almost hourly. The drama is electric; everyone responds to its thrall. Sometimes wind roars through too, the sound indistinguishable from a train or proximate thunder, forceful enough to be dangerous. It is always dry there, but especially during the summer months when fire becomes an omnipresent danger. Drought and water shortages, fire, wind, rattlesnakes; this is not a place for the feint of heart. But it is the entwinement of danger and beauty that are part of its allure.
There is something else, perhaps to me most notable—the silence. When the wind isn’t roaring the quiet is shocking, almost unnerving at first, for someone who lives in even a small city. Little traffic, no sirens, ambulances, jackhammers, chainsaws, noisy neighbors, shouting kids. And, the biggest silence of all, the absence of internet in the places where we work, allowing us to hear our own thoughts, There is some imprint of human habitation, but far less than most of us visitors are accustomed to.
As one of the photographers in residence pointed out, deserts are traditionally where people go for contemplation and turning inward. Few of the artists and writers who come there would refute that. It is more than simply a place to work; it is a place that prompts a person to think about the universe and human existence. I definitely found that to be true. And, in the brief four days I was there, the solitude and quiet made it possible to find the focus to finish a draft of a new novel.
Another reason—beyond the beauty and solitude—that this time was special, was for the chance to take a road trip with my friend Miriam. She helped me transport my luggage and administer some of my medications through the feeding tube in my belly. When on the last day the residents shared work, she read an excerpt of one of my novels. During breaks from writing we gossiped and laughed.
She was helping me in critical ways, and I appreciated the help, but I also saw that I am mostly able to function independently. This was another gift of the trip. For the time being I have found workarounds for most of my weaknesses.
At one point Miriam joked about my being an invalid. I think she said she enjoyed it a bit, the task of ministering to me. I know she does not think of me as an invalid, so I wasn’t bothered. But I have been thinking about this word invalid for a while, what it means in general and what it means more specifically in relation to me. It is hard not to look at the word without separating its components. In-valid. Not valid.
When I was doing a lot of acting in high school and college, I had an image of the ideal role. It entailed playing a dying character so all I would have to do was lie in a bed on stage without saying a word. I have no idea what gave rise to this fantasy, perhaps the chance to play a role without having to memorize lines or blocking. But also, it was the desire to be the observer of the action—which is a lot of what being a writer is—and to be simultaneously seen by the audience. As for the dying part, I cannot speak to why I thought that would be desirable (that would require a lot of probing therapy), but I certainly don’t hold that view now.
The term invalid, as applied to someone who is sick, seems old-fashioned to me. It brings to mind terminal patients with tuberculosis or cancer, confined to bed, feverish and gasping. I don’t think of invalids going about the business of the day, fixing breakfast, paying bills, writing novels, taking meetings on Zoom. Because I do these things I do not feel like an invalid.
But the identity creeps in once in a while when I’m at the infusion center, attended by nurses who take my vital signs, bring me warm blankets, attach the bag of Radicava that goes into the port in my chest. There I am surrounded by other patients—invalids?—also getting infused, mostly cancer patients, I think, though recently there was a pregnant woman there who was having a one-off infusion of something. She was definitely not an invalid. When I return from the infusion center, I shake off the patient person and return to my healthy-person identity, but I am aware of how tenuous and short-lived that may be, despite the fact that I do not feel sick.
The words Merriam-Webster uses to define invalid—as an adjective and noun—include “being without foundation or force” (most referring to an argument), “affected by disease or disability,” “unsound,” and “weak.” Sometimes the word can be used as a transitive verb (I just learned this) meaning “to make sickly or disabled” or “to remove from active duty by reasons of sickness or disability.” As in, “I was invalided by ALS.”
These words are sobering for their truth in relation to me. Merriam-Webster does not presume that an invalid is gasping and confined to bed, as I have always thought an invalid was, only that they are affected by disease or disability which accurately describes me. Still, I resist being the invalid who is “removed from active duty,” which implies that one is no longer to be taken seriously. Actually, I am not sure what active duty is, except in relation to the military. Does it entail making some contribution to society? Active duty for me has always been engaging in the act of writing. Perhaps I will consider myself an invalid when that is no longer possible.
And yet, maybe some kind of active duty as a living creature is always possible as long as one is alive. I am thinking of the active duty of animals and trees and plants and fish and protozoa. Isn’t any creature who is in the business of receiving messages from the environment—watching, hearing, smelling, tasting, touching—on some kind of active duty? I like to think of myself, when I am more disabled, as still sentient in this way: sitting on my front porch, mute and unmoving, but using my eyes and ears to see the hummingbirds and hear the kids playing at the school up the hill, feeling the wind on my face, writing nothing, but still on active duty.
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