Today: “Ms. Rolfe, are you dying?” This isn’t the first time a student has asked me this after I had a coughing fit in class. In fact, I get asked this all the time. Too often. And I’m used to it. But today, I am hanging on by a thread. I have trouble walking up the stairs. Today, when I got to the top, I was so winded I was seeing stars, and for a minute everything inside me was hard, immovable, like the air was made of liquid steel. It’s only ten steps, but it’s fucking hard. Now my thighs ache, and my breath is shallow. I don’t feel well. I can’t go home sick because there’s a standardized test coming up, and my inattentive students need to do well. I want them to graduate. I want them to move beyond this class and learn how to actually think and be good citizens. I must power through. It’s important because I don’t want to look weak. I do not want to be a liability. But when one of my best students asks this question and another snickers and says under her breath, “Daaaamn, that doesn’t sound good. She might be,” I snap. I just snap. And I snap on a kid who really, really doesn’t deserve it. I say, “Yes, actually, I am dying.” And I don’t leave it at that. I continue, “Would you say that to someone who had cancer? I mean, have you ever really thought about how rude that question is? Like, what if the person is dying?” My student is stunned. He is stunned because I don’t often talk about the fact that I am, indeed, dying. That I’ve been dying for a decade. And that I might be dying for another decade.
2007: I have a fourth-period conference that runs into lunch. I have three office aides who are my best students. They edit the newspaper and yearbook. I love these girls. I see one of them four times a day. She stops by my classroom in the morning, eats lunch with me, and takes two of my classes. She has her aunt’s old Cure records, and I quickly realize a few months into the school year that we are cut from the same weirdo cloth. We watch Strong Bad videos together. She makes a video project for my photojournalism class to M.I.A.’s “Paper Planes,” and I think if I had a daughter, I would want her to be this kid. I’m in a bad, abusive relationship. I am sick and damaged and they miss their fun teacher. I feel like crap all the time. I am losing weight. I’m miserable and exhausted. The moping, scattered mess I’ve become is starting to scare my students and they assume it’s boyfriend trouble. They are teenagers and they always assume it’s a boy. I even think it’s about a boy. However, what I don’t know yet is that it isn’t just the boyfriend making me depressed and exhausted and sick. My boyfriend thinks I am faking being sick so he won’t leave me for the hairdresser who, I learn from a barely readable message she sends me, can’t even spell liar. He thinks I am exaggerating the seriousness of the situation. And the whole time, I am not focused on the fact that I might have a terminal illness. I am more concerned with being able to prove him wrong and make him feel like shit—because, you know, that’s what’s really important. Then one morning during that fourth-period conference, my pulmonologist calls to discuss the results of my genetic test. Before he gets into it, I mention that the lab called the day before and said that the sweat test was negative, but he responds by saying, “Well, it doesn’t matter because the genetic test turned up two different cystic fibrosis gene mutations.” He says that usually people have two copies of the same gene, but I have two different genes that cause CF, and one is extremely rare. He calls my CF atypical, and I cling to this word for years. I will think it means that the CF I have is somehow different than the CF that I’ve read about—the one that causes people to die by my age. For years, my CF will exist somewhere in the background. I begin treatment for an infection in my lungs that has been slowly destroying my health for the past few years. And for a long time, I feel better.
When I finally cut that abusive boyfriend loose for good, one of the last things he yells at me is, “Who’s going to love the dying girl?”
2008 or so: When I finally cut that abusive boyfriend loose for good, one of the last things he yells at me is, “Who’s going to love the dying girl?” But I don’t think of myself that way, or at least not yet. Years later, these words will bubble up again, and they will be more painful than they were at the time they were spoken. Now that I know I have CF, I do some research, and while what I learn should be scary, it’s not, because I realize I can’t possibly have the same disease as these people I’m reading about. I’m atypical. I don’t take hundreds of pills—just five or six. I have inhalers but not nebulizers. I have no idea what this vest contraption is that people keep talking about online, and when I read about doing hours of treatments a day, I have no concept of what that’s like because I don’t do any treatments. I take my antibiotics, and I use my inhaler, but other than that, life is pretty much the same as it always has been.
2013: I began my teaching career at a Title I school where sixty-five percent of the students are classified as economically disadvantaged or “at risk.” Most of my students do not speak English as their native language, and since I teach English, this makes my job a challenge. My last year at this school, eighty-nine out of my 120 students do not pass their standardized test, and now I’ll have to prepare them for not only their ninth-grade test but their tenth-grade test as well. What they want me to do is impossible, but I try anyway because I love my students. I want them to graduate and have opportunities. But I am tired, and I am starting to realize that I am sicker than I used to be. One day after school, one of my coworkers, who confuses my thick-skin and blunt manner for a lack of feelings, says to me, “My students keep asking me who’s going to die first, you or McDonald,” meaning a coworker who is planning on retiring at the end of the year because of prolonged illness. And in that moment, I understand that perhaps I look as run-down as I feel and that maybe my coughing, though normal and routine for me, is jarring for others. Two days later, my school district announces that it is switching to some state-sponsored health insurance and that if I want actual coverage, it will cost me $425 a month out of my own pocket. The union has plans to protest, but I am scared shitless. A week later, I go to see my pulmonologist, and he says that he wants me to get established at the transplant center in San Antonio. My pulmonary function tests are showing a decline. And after requesting these test results for the past few years and doing more online research, I realize that my rate of decline is concerning. I’m getting close to the transplant range. I make the appointment. I start looking for a job in a district with better health insurance. And then I join a CF forum because the only person I know who has had a lung transplant is dead.
Thoughts that regularly occurred between 2013 and 2015: A lung transplant is considered a success if the patient lives one year post-transplant. I know this from Gregory. His transplant went down in the books as a success. But he died one year and one month later, and in my mind, it was not a success because my friend is dead, and I need him now. Most CF patients live five years post-transplant.
At first, at my new job, I do not tell anyone that I have cystic fibrosis. Mentioning this while applying for a teaching position would’ve hurt my chances of getting a job.
2014: At first, at my new job, I do not tell anyone that I have cystic fibrosis. Mentioning this while applying for a teaching position would’ve hurt my chances of getting a job. Later, I tell a few coworkers, but I still don’t want to tell my boss until I’ve proven myself. One day during my first year at this new school, a man approaches me in the copy room and pulls me aside to talk to in confidence. He says, “I know this is a weird question, but do you have cystic fibrosis?” He explains that he heard there was a new English teacher with CF and that his daughter has it. We talk for a while. He suggests I contact the CF clinic at Dell Children’s Hospital, where his daughter is a patient. I realize at the end of the conversation that this man looked at me and recognized that I had CF. I look like I have CF.
2014: I’m in the hospital for IV meds. The infection I had for years is gone, but now I have pseudomonas. I know from my CF forum that this is common, and while not the worst bug you can get, it’s hard to shake. I’ve been quietly lurking on the CF forum for a while now, and I’m starting to realize that I am indeed atypical, but perhaps not in the ways I thought. I slowly begin to understand from stalking profiles and gleaning information from posts that there is no such thing as atypical CF, or rather there is, but in general all CF is different. It’s a disease that affects no two people exactly the same. Some die at thirty, and some live into their seventies, and no doctor can tell you what will happen. They can’t tell you how long you will live or how you will respond to a transplant, if you can have children or not, or even how long you’ll be able to work with the disease. One study I find on the internet says that atypical CF, while once believed to be a milder form of the disease, can actually just be a later onset of the disease that affects mostly one organ, and unfortunately for you, it’s the lung. The one you need to breathe—the most basic life-sustaining function. When my coworkers come to visit me at the hospital, I take them to the mini-kitchen for ice cream. I get to order hospital food like it’s room service, and so I don’t mind being here. I keep saying that it’s like a very boring all-inclusive resort.
Six months later in 2014: At the transplant hospital, they forget about me for two hours. This is my third visit, and my lung function has dropped to thirty-five percent. The respiratory therapist, who is an asshole, grills me about why I don’t go to a CF clinic. He asks why I don’t do the usual treatments that most CF patients do, and then he gives me the hard sell on going to the CF clinic that’s opening in San Antonio. Later, when I see the transplant doctor, he also gives me the hard sell for a lung transplant. I can tell he wants me to get one because he thinks I’ll be good for their success rates. I’m young(ish) and healthy(ish). I still go to work. I still function like a relatively normal person, but my lung is indeed damaged and only getting worse. When I leave, I decide I’m never going back. I don’t want to be sold a transplant. I don’t give a fuck about their success rates. If I get a new lung, I will be out of work, and I’m not going to stop working unless I’m near death. Odds be damned. If I can’t teach, I don’t know who I am. But things are bad enough that I’m finally very afraid I’m going to die, and so I call the CF clinic. I also finally tell my boss. When I tell my pulmonologist I am leaving him for the CF clinic, it feels like a breakup. At the clinic, they give me the vest. I get the nebulizer, and I am put on the typical treatment regimen.
2015: I am going back into the hospital for the second summer in a row. I’ll be getting my first PICC line. And since I still have exactly zero friends with CF, I Google the process, and I’m freaked-the-fuck-out. Websites describe needles and long tubes that go into a peripheral vein and are then guided toward one of the central veins near the heart where blood flows more quickly. They mention the use of ultrasound machines to find the vein. The night before I go into the hospital, I get drunk with my coworkers. I’m facing two weeks of being connected to tubes and drugs and probably no booze. And this realization actually scares me more than the poking and prodding does.
Somewhere deep inside I can still feel a visceral denial coursing through me. Because this has always been my problem—dealing with the admission that I am dying, or seriously ill, in any real sort of way. It’s the denial that allows me to skip treatments in favor of watching the love arc of Naomi and Max on 90210. It’s the denial that never fills my inhaler prescriptions because I would rather spend twenty-five dollars on booze than on albuterol. And I am pretty sure that denial was in full force the night I decided to smoke a clove at a Queers concert despite knowing the probable consequences. (That night I coughed up so much blood that I texted a photo of it to my boyfriend for confirmation that it was, in fact, a disconcerting amount of blood.) The denial comes in waves, but it’s always there. Until something happens and my body forces me to reckon with the reality of its limitations.
Today: I am almost forty, and I’m standing in front of my students—all of them born since the turn of the century—losing my shit over a dumb “are you dying” joke. Which is stupid because I’ve never had trouble with the admission that I am dying when I need it for dramatic or comic effect—mostly when I return home for a visit and my family seems both unrecognizable and unaware that I am visiting for only a short time and forces me to do things I do not want to do, like a family gathering where I don’t actually know anyone they’ve invited. Sometimes I use it when I am pissed off at a friend or ex-boyfriend and I want to make him feel like shit for ignoring me for the last decade, or when a coworker is complaining about something petty and I want to be morbid to freak her out because I am bored of teacher talk. Sometimes I use it to segue into a particularly inappropriate comment or as an excuse for one. Sometimes I whip it out in lieu of an apology. More often than not, it’s the reason I give for canceling plans or being late to work.
But today, I can’t deal with jokes. I am too tired, and the walk up those ten steps felt like it was killing me
But today, I can’t deal with jokes. I am too tired, and the walk up those ten steps felt like it was killing me. I have told my students bits and pieces about my illness before. I have even said at times that I have cystic fibrosis, but they are fifteen, and they don’t know what it is, and even more important, they can’t fathom that the person who stands in front of them every day bitching at them to pay attention or proofread could actually die. But I am dying, and I spend a good portion of my life either trying to acknowledge that fact in some sort of authentic way so I don’t waste time—reminding myself that to do good in the world and make the most of life and all that shit—or trying to ignore it. And when I cough, and I do indeed feel like I’m fucking dying, and the chorus of apathetic teenagers keeps saying what I’m hearing in my head—“You’re dying”—I snap. And then I am sorry. I am sorry not only because I feel bad for making them feel bad but also because I have said over and over again to anyone who will listen that I would teach until my last dying breath, and right now I feel like a liar. I am an imposter. Most days, I don’t feel sick enough for that statement to be true without a qualifier. And, to be honest, I have more important shit to think about. Because fuck that. I’m not the dying girl. I’m Ms. Rolfe.