The first spot is an incidental finding. I have such stomach pain that the doctor orders a CT scan to check my appendix. The test shows it is fine, but there’s a spot in my lower right lung. We’ll watch it, the experts say, probably scar tissue. Probably, I think, remembering when I was twenty-one, with no health insurance and had walking pneumonia. The pea green and purple mucus that issued forth from my body was repulsive, putrid, fascinating.
My main doctor suggests a follow-up with a lung specialist, immediately. It takes me a couple of weeks, thinking, this isn’t anything any of us needed to get worked up over.
Pulmonologist. That’s his official name. Hard for me to say, but he’s super nice. When it comes to the breath test, I do poorly. Probably a fluke—the machine is old. We’ll have the new one the next time you come. I didn’t think there’d be a next time. What am I doing in this office where out in the waiting room, elderly people with a variety of coughs sit, some of them on oxygen, many exuding the fusty smell of cigarettes?
It’s probably scar tissue, the man with the kind eyes says. “But, we’ll follow this.” I don’t know then that “following” meant monitoring. I will have more CT scans, more breath tests where I won’t do well, that I’ll be spitting into lab cups so the mucus could be cultured.
“Worst case scenario,” says the pulmonologist, “you have a lung infection. Because of where the spot is in your lung, if it’s not a scar, it could be something known as MAI.”
I hear M.I.A.—and an image of the hard-hitting female rapper came into my head. The doctor leans forward on his rolling stool, placing his hands on his knees, “It’s an infection known as a colonizer. Some people can live with it fine, but other people have symptoms.”
I am not sure how I feel about this foreign presence in my delicate lungs—those wing-like bodies within my body—that oxygenate my blood and carry out carbon dioxide. It’s hard not to be taken by the symbolic, to the idea of something advancing inside me.
I’m not afraid. Not yet.
In my group were four aspiring women writers; two had brought short stories, two novels. We sat in wooden chairs under a gracious pine and discussed the drafts on land that was once part of the lives of the various California Native tribes. Now, around me, these adults were educated, worldly, thought themselves to be progressive and so far away from the country of ignorance. They’d read To Kill a Mockingbird, at least once.
In one story, a woman who is home alone hears the doorbell ring. A brown-skinned man asks if he might clean the gutters in exchange for a bit of money. Should she let him in?
The author took notes and the other three women discussed. I urged them to focus on craft—was the story believable? Were both characters rendered with full humanity?
In the distance, I could hear my daughter laugh, and then one of the readers said, “Everyone knows a black man at your front door means rape.”
It felt like one of those soundtracks where the needle scrapes across the record, and silence prevails.
I don’t remember what I said, but I do remember that it seemed I’d been kicked in the chest, my breath short. When I think about it now, I grieve for the numbers of black and brown men and women who have been killed in the name of protecting white womanhood, how the backbone of our republic depended and—maybe still depends—on the lives and deaths of people with more melanin, how the degradation and vilification of dark skin is an extant arm of colonization that we all live with today.
The day grew hotter with her toxic words, and I just wanted to be away from what I’ve come to think of as arm-chair liberals. I wanted to run from these women and breathe in the smell of my daughter and my husband’s skin. Instead, I sat there. I hope I said something to challenge her, but more likely than not, I didn’t. It is highly possible I participated in her dangerous premise via my own silence, by folding my shoulders in and taking shallow breaths.
Later, at dinner, while my husband walked with our daughter to retrieve some dessert, another weekend participant—from the poetry group—leaned over and whispered, “Where did you get your Jamaican nanny?”
Her question was like a multi-pointed knife in my craw.
“He’s my husband,” I said, tight-lipped.
The possibility of a spreading lung disease seemed laughable—especially something known as a colonizer. I joked that probably every American had a little bit of colonizer in them. Once we got home, ten minutes of Internet research revealed that usually, only immunocompromised people turned up with MAI, or Mycobacterium Avium-Intracellulare. It’s a pulmonary pathogen, spreading through the lungs, starting in the middle and lower right lobes. The Internet tells me it’s a pathogen carried in water and soil. Dirt and rivers. Earth and sea.
It’s related to TB but not contagious.
It had been harder to ascend a flight of stairs, to achieve enough sleep, to get away from the bouts of stomach pain. I had just thought I was out of shape. I had thought that everyone feels this way.
Nine months after the first finding, another scan revealed that the white spindly stuff present in my air pathways had expanded. “See here?” The specialist said, “See how it looks busy here? It shouldn’t.” We were staring at a sliced image of my lungs, as if I were lying down, and we stand at the foot of my body—the image is black and white with the dark islands of my lungs splayed out, my spine at the center—alongside my heart? There are white, enterprising networks of cobwebbed mottling on the lung bodies—and yes, when the doctor switches to the image from the first scan, my husband and I can both see there is a change. The colony is definitely more present.
“The surprising thing,” the doc says as he eases back on his gliding stool, “is that MAI only shows up in a specific demographic. Non-smoking, thin, middle-aged white women.”
His words cut into me as separate space/time units—much like the scanned images themselves, and I ride each one in a roller coaster of emotion:
Non-smoking: Damn straight. My mother smoked while pregnant with me. She puffed away during my earliest years—have you seen what an ashtray looks like?
Thin: OMG, I’m thin! Those ten pounds, well fifteen, that have crept onto my ass and middle—not fat by medical standards.
Middle-aged: Since when is forty-six middle-aged?
White: Well, I’m mostly white. Maybe. Maybe I’m all white. My father was part Cherokee, but we’ve never known how much. What we know more of is the instances of vitriol flung at him as a child (“the Mexicans are taking over”), the times he brawled in a bar fight because of racial slurs (“watch your temper, half-breed”), the time my mother’s mother vowed never to show my parents’ wedding pictures because someone remarked on my father’s features (“he looks like an Indian”).
Women: Yes, I am part of this group, emphatically. My early years taught me so much about being a girl in a man’s world—our rural, ranching life constantly asked me to be more like a traditional boy, and yet, my father made continual fun of his wife, his three daughters. And when a son was finally born? The mythic response included getting bucked off of a horse and drunkenly shooting a pistol in the fireplace to celebrate. I think about little me—sixteen months older than my newly arrived golden brother. I must’ve been in the same room as my sisters—I must’ve inhaled suddenly, sucking into myself in protection as the primer exploded the bullet into action.
This was as close to Atticus Finch as I was going to get.
I’m still thinking about the demographic this colony places me in when the doc orders lab tests. I’m to spit into a sample cup. I’m taking this route rather than the bronchoscopy where a camera would be threaded into the nose and down the throat. Very rare but potentially life-threatening risks of bronchoscopy include heart attack and lung collapse.
I understand that one has to get a clear view of things in order to create an effective plan to counter attack the colonizer.
I ask, “What if we don’t treat it?”
Again, the doctor leans into his knees with his palms. “The lungs will harden.”
In Idaho, driving along Highway 2 lined with a density of trees, we passed a brown-skinned man sitting on the south end of a narrow bridge that spanned a deep ravine. I thought about James Bird, dragged behind a truck by three white men until his death. I thought about how the headquarters for the Neo-Nazis were stationed in this state and how Klansmen claim they are the invisible empire, over one hundred and fifty years old. Spreading.
We drove in silence and a tremor built inside—maybe early symptoms? And I finally said, “We have to go back.” And my husband cast a skeptical eye—we didn’t know that guy, and was I assuming a connection between him and the other man in an act of patronizing generalizations?
We turned around and offered him a ride. I sat in the extended cab and we visited as the miles rolled underneath us. He told his name—Jim Bunnell—and that he’d been afraid to cross because of the ways the logging trucks blew past with force, affording him no room on the slender bridge. He was in his sixties and had been traveling for years. He said, “Holy Koledo” where others might say, “Holy Toledo.”
We asked where he wanted to be let off—I looked at the atlas, at those spidery networks of roads and rivers intersecting across the landscape—and named upcoming towns.
“Holy Koledo,” he said. “Too racist there.” And as we moved farther north, it slowly dawned that he was looking for that place where racism didn’t exist—he was looking for the town where he could just be and not be a representative of anyone’s fears or worries. We dropped him off at a gas station. He went inside and we waited. Within two minutes, Jim was back outside, alongside the passenger door. “No way. Not there. Not there.”
We eventually left him in a bigger town—Bonner’s Ferry, hoping that more people might offer shelter. We hoped in all that beauty of place there might be folks with an open-armed sense of who Jim could be. A town born on the gold rush boom, nestled up against the river, that bears the name of the Kootenai.
Within two weeks, one result returns. I have something known as pseudomonas—another pathogen found in soil, water, and plants. Usually healthy people do not get it. I am prescribed a ten-day antibiotic that might kick the infection, but also carries the risk of rupturing tendons, especially the Achilles. I call my sister—the one my father disciplined/beat, depending on your definitions and perspectives, the one who has a rare form of multiple sclerosis. I say, “These side effects…”
She laughs. “Listen, if it’s a ten percent chance, you’ll get it. That’s how things works for us.” It’s true, we’ve been health outliers for much of our lives, if mildly so until we hit our forties.
I take the first pill after dinner and I have a rough night. Everything aches and my thoughts race.
Each day on the antibiotic I feel worse, but something might be loosening—a clear, jelly-like phlegm presents itself in the mornings, like translucent salmon-roe. It’s so gross that I call my husband to the bathroom to look. It’s like the movie Alien but with fewer special effects, less drama—just the slime trail of the creature but not the thing itself. He examines it in the tissues. “That,” he points to the stuff, “is awesomely disgusting.”
The colony might be breaking up, but my heels burn, the inside of my shoulders ping with clarion pain. I rest on the couch when I should be sleeping, my body in flux, in torment, in some kind of epic battle. At four in the morning, on the sixth day, when I am contorted with insomnia, I decide I am having an allergic reaction to the medication. I call the pulmonologist’s office in the morning and yes, they concur, I need to stop. But do I feel better?
My sister Cindy gasped. “Who’s that Mexican in our car?”
Mom stared. We all did. She said, “That’s your father.”
The second test is slightly improved. “Let’s show this to the doc,” she says, and we do, and he’s concerned. Yes, the infection could impact breath capacity.
I decide to name my deepest fear: could this be lung cancer? Are we circling the big C word that took my father via his colon, then my mother’s breasts and much of her strength?
The doctor shakes his trustworthy head. “We’re thinking this is an infection.” And he says it again, “One that strangely impacts a very specific demographic.” Even as he says it, the words ring in my mind so it’s like a strange after-effect echoing in my psyche. “Non-smoking, thin, middle-aged white women.” No one has mentioned income bracket yet.
“While the cultures came back positive for pseudomonas, and you took six days of the antibiotics with no real improvement, we’re thinking that you’re still a candidate for MAI.”
The word candidate now crowds out the other thoughts. The doctor shifts on his swivel chair, and I come back to the conversation.
“Wait,” I said. “Would the pseudomonas show up on the CAT scan?”
He squeezes his knees. “Not likely.”
Our next options: wait and see if my symptoms worsen, do more sputum tests, or go for the bronchoscopy.
“Think over your action plan,” we’re told.
An inhaler is prescribed: one to two puffs as needed to help address the breath-way obstruction.
Onsite mine ‘Participants’: miners, millers, and ore transporters ($100,000);
Onsite participants at atmospheric nuclear weapons tests ($75,000) and “Downwinders”—individuals who lived downwind of the Nevada Test Site ($50,000).
My brother-in-law’s family was paid the maximum amount in the late 90s—decades after.
I once looked on the Center for Disease Control’s website to better understand this:
From the start, radioactive radon gas and radon ‘daughters’ in the air were suspected as the cause of the lung cancer. Radiation can be thought of like invisible radio waves (only radio waves are harmless) or like specks of dust so tiny they are invisible . . .” There was an exposure-response relationship with exposure to radon daughters in the mines. When radon daughters are breathed in, they decay radioactively in the lung. This can cause lung cancer.
My brother-in-law was twelve when his father died.
Aren’t we all downwind?
In the morning, I look at the news and see maps and graphs and charts. I see people trying to explain. I try to take a deep breath. Inside my body, the likely candidate has a grip.
We decide to schedule the bronchoscopy for the first week of December. Because of the Thanksgiving holiday, I play phone tag with the insurance representative about my share of cost and never talk to anyone. We drop our twelve-year-old off at school, and I kiss her amazing brown face as many times as she will let me. On the way to the hospital, I’m scared about the anesthesia. I’ve had it before, but for whatever reason, this time, I’m more nervous. I ask my husband if he could handle things if I died. From the driver’s seat, he casts a skeptical eye my way. “I’m pretty sure, that yes, I could.”
I grab a scrap of paper from the floor and write down my computer password which has the document with all of our account info on it. “Just in case.” I shove it at him.
Once in the registration cubicle, I chat with the woman, asking what’s best the thing about her day, which is one I have been doing with all service industry people since the election. She tells us it’s that she’s transferred to this office. “It’s a different kind of interaction with people.” Before I ask what she means, she informs us that my share of cost for today’s procedure will be two thousand dollars.
The tears are down my cheeks before I can take two breaths. “What?”
She states it again. “The cost is ten thousand and your share is two thousand.”
“And that’s just for the hospital, right?” I point at small sign on the wall—the legal disclaimer that every patient should expect separate bills from the doctor, from the anesthesiologist, and the lab.
The woman nods. I can’t stop crying. I’m an idiot, so stupid for not thinking smartly about deductibles and timing, for being sick in the first place.
I call the pulmonologist’s office and speak with the receptionist. After I tell her I want to cancel, she asks, “Why?”
“Cost.” I let the single word hang, fighting my urge to explain, to defend, to offer context.
“I understand,” and it sounds like she really does. Later in the day, she will call to tell me that the doctor wants more sputum. They want to see me in four weeks.
This was the same town where I asked a friend and her teenage daughter to stop using the n-word around me, and they had asked, “Are you anti-racist or what?” Heavy emphasis on the what.
When I arrived, my friend and her mother sat on the couch, faces tight, their blonde hair cut in a familiar bob. “Did you see?” my friend asked. I shook my head.
“There’s been some graffiti on the bridge on the way to Mom’s house.”
They explained that during the night, someone had spray-painted the bridge with a swastika and the words: Hang the N****r; Fuck the N****r. They hadn’t wanted my boyfriend to come with me because they didn’t want him to see it.
“I’ve called the sheriff,” my friend’s mother said, adjusting the pillow on her couch. “It needs to be cleaned up right away.” She looked away. “He said it was just boys acting out, using the language of hate, but whoever did it isn’t really hateful.”
I appreciated that they called me, that they tried to advocate for action and investigation. But would they have done the same if I hadn’t been in a relationship with a person who happens to have dark skin? Would any of us? Would my own chest constrict with fear if I hadn’t been dating a person of color?
The Journal of Thoracic Disease tells me: “Unfortunately, recurrent infection with new strains of mycobacteria or a relapse of infection caused by the original organism is not uncommon.”
Rumpus original art by Elizabeth Schmuhl.