"Sometimes all a person can do is describe. Or howl. Or write 'Howl'."
10 hours ago
11 min read
A while ago I began writing about the smoker’s lung that I’ve got in my pelvis; it started, years ago, with lists to bring to the doctor’s office. Now, it’s here, attempting to find language for my experience of a disease that is hard to explain.
I have Endometriosis: Stage II of IV. The first thing they tell you after they diagnose you is that the stage of your disease does not correlate with the amount of pain it causes. Your experience isn’t bound or defined by that number. Someone with Stage I could be in debilitating pain, while someone with Stage IV could experience no symptoms, only to discover that they have Endometriosis due to some other, residual issue down the line like infertility. It is chronic. It is incurable.
The smoker’s lung isn’t even mine, to be clear. No, it is. But it’s not from my smoke. No, actually, I guess it’s my smoke too, but it’s alien smoke in a place where it’s not supposed to be. God, I’ve been writing this paragraph for so long because I can’t get it right. It’s my lung, but it wasn’t my tobacco. “I didn't inhale.” A better way to frame this may be: lung (metaphor for endometrial tissue) → smoking habit (abnormal, not mine) → my pelvis (all mine) → smoker’s lung in my pelvis (mine, but from said smoking habit that was not my fault) → pain from smoker’s lung (mine and the smoker’s, but ultimately only my burden and my responsibility).
Maybe it’s like if I had a Slow Loris, or some other small, dangerous thing with lungs as a pet and it smoked a bunch of tobacco and blew up, and the only things that somehow landed in my body were its black, little infected lungs. That’s the smoker’s lung in my pelvis. It’s mine, but it’s also alien and invasive. That thing I just did doesn’t work for me because there’s too much distance and physical difference between me and the Slow Loris when all I really want to demonstrate is just a (half) lack of ownership. So, I tried to liken it to a relationship with a pet. (Doesn’t feel correct.) Or maybe it’s like State Governments existing under the Federal Government. Feds don’t have jurisdiction over state laws. (Maybe more correct.) Or maybe it’s like two independent parts of a whole marriage. Okay, so I’m Married to the Endo? (No, not correct.) I don’t know, in this moment, how to write the distance between me and something in my body that’s mine but not mine.
Maybe I should be thankful that I don’t feel like I know how to do that right now. Maybe, Olivia, you also could have picked a mammal in the same genus and that would have helped the problem too. But ultimately, I like the image of the Slow Loris blowing up with its tobacco bits everywhere. I like thinking about that cute little thing smoking a cigarette and then blowing up like my uterus.
Over the years, I have tried to find the language to describe the experience of living with this disease. I have found that it’s hard (as so thoroughly demonstrated above) for me to explain my thoughts and feelings toward it when it’s my body doing it to itself. I feel like on a normal day that assertion is pretty straight forward. It’s in there and there’s nothing I did to cause it and there’s nothing I can do to change it. But on a day when I feel it, when all I can do is pray that the pain subsides, the part that trips me up is that my body is my body is my body. The same body that I try to take care of, the me in that body who is begging for God to make the pain stop, is the same body that is causing the pain in the first place. I feel like there is a variation of this reality where I could have come to resent my body or, at the least, felt like I was to blame in some way. But I don’t. But I also don’t see it as something separate from me. I don’t even know if I am my body. I’m laughing. I don’t want to think about that right now. Moving On.
Before the Endo was capital E "Endo," when it was just tissue, it was doing what it was supposed to. At some point, it went somewhere it shouldn’t have (I’m making it sound like it’s sentient. It’s not.), and then it became a part of the problem. I don’t know how it gets to places it’s not supposed to be. Some women have dealt with it in places as far as their lungs. I imagine it floating around in some sort of primordial cavern in the middle of my body that I, God willing, will never see and therefore can only conceptualize as some sort of interstellar space where the stars are my organs and what happens in the middle is just the Beautiful (noun form). Upon getting to wherever it's going, (for me most ends up on the left side of my pelvis) it sticks. The nature of the tissue, being something that should have left my body during my period, presents this as a problem.
The old, trapped blood and tissue then sits in odd parts of my body where it never should have been in the first place. Pooling. Hardening. Swelling. Bleeding all over again. The pigment from the iron is, over time, what makes it black, at least that’s what Google is telling me. That’s why I think of it as a smoker’s lung. It got pretty bad for a while. And then it got better. And now, it’s gotten bad again. When I was writing about this a while ago, I was reminded of something I wrote in high school. Completely unaware at that time from any soon-to-be-diagnosis of my smoker’s lung, it was about a cloud I saw. Maybe I can still find the picture. I captioned it something like: “It looks like someone dripped black ink all inside her and now it's infecting her insides.” I don’t think that’s verbatim, but it’s pretty close. Years later, it’s that picture that the Endo reminds me of. It's dripping all inside of me, swelling, bleeding, hardening, stabbing, and I don’t know if it’s ever going to stop.
The French word for pain, douleur, is feminine.
I felt weak for a really long time, as if this was a universal douleur féminine, some grueling part of womanhood that I was just too weak to participate in quietly and correctly. I berated myself for years after hearing from multiple doctors that it was just a bad period. I was weak. Mentally, I was weak because I couldn’t block it out. Physically, I was weak because I couldn’t function normally. I was pathetic because I needed to talk about it. I was annoying for complaining about something that I was told every woman’s body went through. I resigned myself to shamefully self-admitting that I must just have a really low pain threshold, and existed, keeled over on the bathroom floor half of the time, in a perpetual state of moaning, wondering why I rarely heard other women describe their pain this way. Why couldn’t I hear them screaming? I didn’t know how on Earth they got through it silently.
The nature of the disease, feminine and reproductive, makes it invisible, both outside of your body and to the world. I think that’s why my sound, in that invisible, interstellar chasm filled with silence and black, seemed so feeble and inappropriate.
Almost 2 years ago now, when I woke up from anesthesia after having surgery, the first thing I asked my mom was if the doctor found anything. Unless they’re inside of you, they can’t actually know if it’s There. When she said yes, I cried. I cried from relief. I was scared, sure, and understood that this meant that the surgery I underwent would only be a temporary fix. I wasn’t particularly ecstatic, but I felt affirmed. I felt two parts of myself that had been fighting for so long reconcile: the self-critical, hostile part of myself that condemned the part of me that was “weak,” and the soft, pleading, intuitive part of myself that knew something was wrong and sought help. I didn’t need to keep shaming myself for reacting so visibly and loudly to something that wasn’t supposed to be occurring in the first place. I had permission to acknowledge that this pain is as bad as it feels. I don’t want Endometriosis, but if I’m going to be subject to putting my life on pause, laying in the shower, and praying for days to pass for the rest of my bleeding career, at least now I have something to show for myself.
Endometriosis effects around 10% of women. If you feel like something isn’t right, it probably isn’t. Find a doctor who will take you seriously. It took me 6 years. It takes women, on average, between 4 and 12 (WHO).
I worried, before this year started, about how I was going to navigate my teaching responsibilities whenever I got my period. I knew it wouldn’t be a one off thing; ergo cancelling class was never an option. I didn’t know how I was going to stand, walk to class, have energy… any of it. Right now, it feels like there are razor blades along the left side of my pelvis and my stomach is making audible noises. Earlier this afternoon, I still managed to put together a reference sheet for my students and prepare for class tomorrow. I’m going. And, over the semester, I haven’t once cancelled class because of it! I skipped a seminar once, maybe in Week 4, but that absence only affected me. I’m taking it as a win. I am proud of myself. One month at a time. I did wake up this morning to yet another iteration of the “Carrie” movie that I first saw and experienced when I was in high school. The "spaghetti incident" for anyone who knows me like that. It will be over soon.
I haven’t written like this for a while. It's been all, "Students will be able to..." and "This meets Learning Objective X...". Things have been so strenuous that I feel guilt for any time I spend not doing or thinking about my school responsibilities. Right now, I am in my home. I’m largely comfortable outside of my uterus. My crockpot smells how my grandparent’s house used to smell when I was small and it was winter. I am rounding up, due to my own personal and academic circumstances, and telling myself that there are only 5 weeks left in the semester. I can do that. I can make that. I am working a wedding this weekend for Burton’s. That will be fun. I am tired. The type of tired where I keep thinking that I see things move in my peripheral vision. Or, you know, maybe it’s just that I need my eyes checked. It’s probably both. But I worry about my sleep; I worry about keeping this old iron horse chugging along.
I have been thinking a lot about a novel we read together in one of my seminars: There There by Tommy Orange. I’ll link the premise of the novel here. In said seminar, we’re all practicing teaching literature with the texts that we’re reading. I taught the first lesson over Orange’s novel and my friend Tim did the second. There were 4 in total. It’s been a few weeks ago now that we finished the book. Tim and I bounced ideas off of each other for the first half of the book since we were teaching over the same material.
For my lesson, our first day with the novel, we listened to and annotated “There There” by Radiohead through the lens of what we had read. Multimodal, baby. We discussed how and why the prologue introduces the story with graphic, visceral descriptions of dismemberment. We also considered the idea of thereness that is explicitly present in so many aspects of the book; also a reference and response to Gertrude Stein’s “there's no there there,” about Oakland, California. Here is a link to a “Here There” sculpture by artist Steve Gillman that sits on the border of Oakland and Berkeley present day.
Tim’s class was our second day dedicated the novel. We emailed about so much, but both only had 20ish minutes each to teach. During his lesson, our class talked about the novel itself being almost an anthology containing anthologies. We talked about Teddy Roosevelt, “Speak softly and carry a big stick,” a veiled, opportunistic delivery of “American mercy.” Here is "Teddy's Bear" eloquently summed up by an anthropomorphic teddy bear speaking to Opal, one of Orange's main characters:
“You’re not an Indian, TS. You’re a teddy bear.”
“You know, we’re not so different. Both of us got our names from pig-brained men.”
“Pig-brained?”
“Men with pigs for brains.”
“Oh. Meaning?”
“Columbus called you Indians, for us it was Teddy Roosevelt’s fault.”
“How?”
“He was hunting bear one time, but then found this real scraggly old hungry bear, and he refused to shoot it. Then in the newspapers, there was a comic about that hunting story that made it seem like Mr. Roosevelt was merciful, a real nature lover, that kinda thing. Then they made the little stuffed bear and named it Teddy’s Bear. Teddy’s Bear became teddy bear. What they didn’t say was that he slit that old bear’s throat. It’s that kind of mercy they don’t want you to know about.” Tommy Orange, There There
Tim also challenged us to continue to draw connections between the many different characters and stories in the novel. He used “Love Actually” as a model for what the “multi-track” (Nabokov I now know, thanks Tim) story was doing. "Love Actually" showed up in a lot of moments that week. When I flew back to VA after visiting Indiana for a wedding, at Dulles I saw the "Kiss & Fly." Airport and Love. That's "Love Actually." His lesson took us right up to the second half of the novel.
Novels, of course, good novels, are set up to involve the reader and make them anticipate the end of the story. Before class ended, we had just gotten done talking about whether you have to like a novel to want to read it (part of a larger conversation about student motivation), and we all sat and thought for a bit about how we felt up to that point, and how we anticipated the novel ending. For anyone who has not read the novel, I will tell you that it is one of those books that makes your stomach hollow out as you’re reading it. It carves away muscle from bone. You want to read it because the prose, the organization, the parallax (thanks, Joyce) is so beautifully done. But the bottoming out of the stomach happens in a very real way, a way that doesn’t go away by putting on a TV show after reading or going for a walk. It just sits with you. Maybe that’s what I’ve been seeing in my periphery.
After voicing her opinion, that she did not enjoy reading the novel but found it a valuable experience and therefore continues to teach it, our professor asked us what we thought was going to happen in the end. I won’t say the answer, but in class there was a pretty obvious one that we all agreed on. The room was heavy, I will put it that way, and all of us came to a consensus that the horrible thing that we were set up to fear and anticipate was going to happen. In that moment, I was reminded of a question Linda Charnes posed when I was back at IU studying Shakespeare’s tragedies: is there such a thing as a foregone conclusion? I didn't know then, and I don’t know now. But I do know that in that moment, amidst sarcastic jokes calling into question our dispositions as optimists, Tim said something that I carried with me through the end of the novel, even when I got to a point where I was reading my stomach into knots. He said:
“You know the ending, but you still hope for something different.”
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