Redefining Expectations

None of the beaten end up how we began.

A poem is a gesture toward home.

The two final lines from “Duplex” in Jericho Brown’s The Tradition hit my heart. Brown created the duplex to say what he couldn’t express in other forms. Or in his words, “I should remind everyone who knows me that I do not believe that poems are made of our beliefs. Instead, I believe poems lead us to and tell us what we really believe.” Poetry Foundation

I feel this way when redefining goals while living with chronic illness. Have you noticed that I don’t say overcomewhen speaking about chronic illness yet? Overcoming suggests an ending. You cannot fail without a set end. You cannot find out what you really believe without exploration.

Sylvia Plath published four books, despite dying at 30. I was obsessed with this before my 30thbirthday. “The Applicant” is one of my favorite poems because of the saltiness, the suits, the repetition. I mean, will you marry it, make it yours, take on the expectations built before you? Will you marry it? Don’t. The expectations are empty, there is no reason to follow them.

I’m about to turn 31 and have put aside this obsession with number of books as publishing success. I’m still chasing some time goals in running, but the minute details interest me at this point: the consistent tempo run, the amount of times I perform physical therapy in a week, or the amount of hours I sleep. In writing, it’s about the process: drafting, or reading and journaling my reaction to the work.

Recovery isn’t standardized. Neither is success. I see this deeply in Lily Hoang’s Bestiary: “The success of the true rat race is all veneer. It is a hot-boxed garbage and infidelity.” Hoang sends her piercing gaze on perfection, family, the immigrant experience, expectations, myth. There are so many ways to live, any one definitions of success is garbage. I hope you, reader, see this in your life and find joy in the process.

Stay sweaty and glittery.

Books I was thinking about while writing this: Jericho Brown’s The Tradition, Lily Hoang’s Bestiary, Candice Carty-Williams’s Queenie.

Avoiding Vulnerability

I’ve spent the majority of my life avoiding vulnerability. Talking about endometriosis with someone that doesn’t have it often becomes a judgment of how sick I seem. I’ve heard, variations of but you don’t look sickor but you’re so activemore times than I can count. 

Is a body yours when you step outside your house? I’ve spent most of my life feeling like my body isn’t mine. The first time a man told me to smile, I was 20, waiting for a Rutgers University bus to take me from Busch Campus to Livingston Campus. I still burn with anger remembering that I smiled back. I felt vulnerable to be told in public what to do with my body, I wanted it to end. Why would I want to live my life with vulnerability?

Frances, the main character in Sally Rooney’s Conversations with Friends, is diagnosed with endometriosis. She doesn’t tell anyone. Even before this, she spent her life concealing vulnerability in relationships. She decides not to tell her mother as they leave the doctor, thinking, “I had the sense that something in my life had ended, my image of myself as a whole or normal person maybe. I realized my life would be full of mundane physical suffering, and that there was nothing special about it.” 

To summarize the interaction: her doctor tells her there is no cure. He explains that endometriosis spreads but isn’t cancerous, and treatment is geared towards preventing pain debilitating to the point of disability. Frances’s detached and ironic personality throughout the book laid out one way to cope with the frustrations of endometriosis. The suffering has no end, so there isn’t much to do other than get on with it. Vulnerability feels like weakness when you’re in unmanageable pain.

There can be a way to manage. I found aerial arts in 2014, at the recommendation of a good friend. It wasn’t until climbing the aerials silks that I felt like I had some claim over my body in adulthood. I’d already been struggling with painful periods, which later became weeks of fatigue which later became vomiting with nearly every period. My body couldn’t withstand the distance running I enjoyed, so I changed my interaction with gravity. Gravity has more potential.

There is something special about aerial arts. When you commit to repetition, your body learns the language. Your body can tell a story with a toe point or flex, with the emphasis of a hair flip or outstretched hand or the point in your back that you arch. This is all without thinking about sexuality—it’s about the potential of movement. The aerial school I attend has opportunities for student showcase, so whenever I can, I jump to perform creatively.

This showcase season, I was with a group of warrior women that we came to call the Jedi coven. We danced on strappy loops to the Star Wars theme song. I began the session with trepidation—my strappy loops background was limited. Class started in February and I’d only taken a few months of strappy loops classes. Was I really going to be ready and capable of keeping up in 3 months? even though I’d been in lyra for a few years, I felt completely inadequate in strength and flexibility compared to my classmates.

The fear stopped meaning anything in the safe and open environment we fostered. Even as I had a horrible reaction hormonal birth control, I was thinking about making it to class. At one point during a Saturday warm-up I said, I’ve had my period for 20 days. If I start crying on the strappy loops, it’s not personal.

We performed in a show with forty other classmates on May 18 and 19. Our last performance had a vibrating, joyful energy. The six of us ran offstage, laughing and smiling, emotionally open and alive—dare I say, vulnerable. One remarked that we should have had that attitude every class. Probably. I’m holding on to the feeling so I can take it with me each day.

Jedi coven, May 19, 2019

Stay sweaty and glittery.

Books I was thinking about while writing this: Thick, Tressie MacMillan Cottom; Bestiary, Lily Hoang; Sex Object, Jessica Valenti.

What is endometriosis?

I have been reading Ross Gay’s The Book of Delights, enjoying the energetic weaving path of his mind. How he sees the world and translates that on the page invigorates my love of the short essay. So does another book I loved in 2018, The Baltimore Book of the Dead by Marion Winik. The essayettes read like poems, therefore I was not surprised (rather, delighted) when I learned that Winik started the project as poems. Our boundaries are not as tight as we think.

In the spirit of boundary-less writing, I have been writing flash essays (paragraphs?) about endometriosis, meant to distill the daily struggles. Reading a symptom list has never been enough to explain living with a chronic illness. For a medical definition, read conflicting explanations of endometriosis online (because there is no cure and the cause is unknown). I’m here to share a piece of what it’s like to live with endometriosis.

So what is endometriosis? It is a disease that can be treated with watchful waiting. It is endometrial tissue ignoring boundaries and doctors unable to explain the migration. I am being a poet over here. This is a current definition from one of the top surgeons in the United States. The problem is, very little is known because there has been little listening and study. You’re told symptoms will go away with menopause. You’re told take the pill to pause your symptoms. You’re told try Lupron to shut down your hormones. You’re told take an antidepressant to shut up.

Endometriosis is rethinking simple pleasures. No conferring with friends until 2a.m., eating pumpkin muffins, going to a restaurant without meticulously studying the menu and looking up ingredients without fear of bodily revolt.

Endometriosis is taking four Advil before work telling yourself this is fine. You’ve been prescribed 800 milligrams of Motrin to survive these days in the past.

Endometriosis is pulling over sobbing in the middle of a 12 hour car ride because your worst period day fell during planned travel. It was already three days delayed from travel stress. You need to change your tampon every hour and a half and you’re in so much pain radiating from your pelvis through your legs that you can’t concentrate. Every bathroom in North Carolina has been filthy, lacked toilet paper to clean up the bloody mess, and you feel like you failed your partner because you cannot contribute to the driving.

Endometriosis is journaling as much as possible because on many days you’re in too much pain to think past clichés. You’re afraid the energy you trying to smile through small talk will take away from your ability to remember.

Endometriosis is taking up circus arts. The callouses on your hands, bruises in your elbows, and hardened bumps on the top of your feet are leading to something. That physical pain means you’ll do something dazzling, like hang upside down from the tops of your feet with a serene smile. As Zadie Smith says in Swing Time, “But elegance attracted me. I liked the way it hid pain.”

Endometriosis is wondering why there is so little research unrelated to fertility. How can you think about fertility when you can barely make it through the day? Why do women’s bodies only matter if the concern is about children? Cut to every horror movie where a woman finds her strength because she is pregnant. What about the rest of us? Watch I Spit On Your Grave (1978) and A Girl Walks Home Alone at Night (2014) again.

Endometriosis is trying anti-inflammatory diets, then eating dairy and gluten for a week because it’s the holidays. You have the worst pain since before excision surgery and decide to recommit to following the diet. You add weekly acupuncture, hip stretches, and syncing your running cycle with your pain cycle because despite all this exhaustion, you are still an intensely competitive athlete looking for a thrill.

Endometriosis is longing for quiet time in the morning. Let me rephrase. It is longing to not have to think about rationing time throughout the day. Karen Lord wrote an incredible long essay about the day to day pain, stress, and impact as someone working in the health & fitness field. She digs into the frustration, “I’m lucky that after all the tests are run in the ER they tell me I’m the healthiest person they’ve ever seen. I mean except for this, right? Right.” Like the endometrial tissue, your symptoms continue to color every moment.

I hope this gives you some insight into the day-to-day of living with endometriosis. Stay sweaty and glittery.