Something to Know

One of these times, if I get the words in the correct order, if I retrace more precisely the lines of history, I am convinced I will learn something I need to know.
– Rebecca Makkai

There is no better time to write than during a two hour wait for my tires to be replaced, am I right? Eleven months into blogging about endometriosis, and I have more frustrations than answers. I’ve heard countless authors talk about this, read countless essays about this—there is an idea that you can write your way out of something. I should say something about obsession here.

What else don’t we know? The universe may be one billion years younger than projected. This is the ultimate I thought it was Friday, but it’s only Wednesdaymoment. I white knuckle through the day and feel the thrill of bronzer tricking people about my health. It’s the sinking thrill of the phrase you don’t look sick

Memories are a haunting. I feel the ache start to grow in my pelvis and panic, then try to breathe. What have I done wrong this month to trigger symptoms? Why did my surgeon say there was nothing else he could do? Is my mood at this point in the cycle because of medical trauma? Why can’t I deflect with some jokes right now?

Still, I’m not interested in the theory that endometriosis is caused by trauma. The theory allows doctors to dismiss pain as all in your head, or even with the best intentions, make the pain some part of an individual suffering narrative, rather than an illness to be treated with medical intervention. I’m interested in how we (general public, doctors, researchers) will cling to any vague theory that may provide a reason. Then I remember—I don’t want to shake from exhaustion and pain any more. I want a reason, or an answer.

Here’s something to know—the holidays are difficult. I think about limitations as I drive to visit friends and family, yet end up distracted and in pain during the visits from these drives. Yet I spoke up recently. My parents drove, and I slept under a blanket with the heat in the car blasting. Small steps.

Some books that explore trauma in different ways which I was thinking about while writing this:

  • The Nickel Boys, Colson Whitehead
  • Music for Wartime, Rebecca Makkai
  • Felon, Reginald Dwayne Betts
  • Queenie, Candice Carty-Williams

Stay sweaty and glittery.

Curious Potential

Beating Endo: How to Reclaim Your Life from Endometriosis and ROAR: How to Match Your Food and Fitness to Your Unique Female Physiology for Optimum Performance, Great Health, and a Strong, Lean Body for Life arrived earlier this month. As I continue to work toward a sub-20 minute 5k, I’m also working on taking to heart the advice from my acupuncturist and pelvic floor physical therapist: running easy (or not at all) while I have my cycle. I’ll write more about my experience with those books and a virtual running coach after the Baltimore Running Festival 5k. I’m so curious about potential.

Why is not running so hard? I spent a decade being told my pain was normal. I was treated as if I was lying, weak, or hysterical. I needed to take the pill or suck it up. The message was that it was my fault I couldn’t stomach the pain. I was already practicing this kind of self-talk anyway–I swam on a team where the coach said that you’re recovering while sitting in class in between morning practice and evening practice. Unlearning those beliefs will take time. I’ve been repeating the phrase that Sonya Renee Taylor created an organization around: the body is not an apology.

I’m curious to see how radical self-love and athletics interact as I face the unknown. I’d like to think they’re not mutually exclusive if the movement is about exploring the unknown and internalized expectations. Taylor recounts an encounter with a free-diver as description of the journey of radical self-love: “learning the difference between fear and danger.”

As I read Taylor, my thoughts wander to Leslie Heywood and Shari Dworkin’s Built to Win: The Female Athlete as Cultural Icon: “Serious athletic training paradoxically produces a profound (and only partially mistaken) sense of the self-authorship of one’s body. This sense is one of the benefits of sport—you get beyond a culturally mediated sense of your body…And you feel that, through your labor, you’ve made yourself.” Have I used athletics to make myself? As much as I want to PR at 31, I run for the endo warriors who can’t. The ones whose kidneys and diaphragms are compromised by the disease, the ones whose healthcare won’t cover excision surgery. I see your fight and this is where I am in mine.

I’ve run with two Baltimore running groups this month: Faster Bastards and Riot Squad Running. Both groups are open and supportive and use positive self-talk when talking about new races. I love this, and plan to continue running with them while remembering that ultra-marathons may not be for me, though I have the joy of spending a Saturday morning running around the waterfront for 10 miles. It’s not lazy that I prefer 5k and 10k races. As my health changes, I’m going to continue to explore potential. 

Some books I was thinking about while writing this:

  • The Body Is Not an Apology: The Power of Radical Self-Love, Sonya Renee Taylor
  • Built to Win: The Female Athlete as Cultural Icon byLeslie Heywood and Shari Dworkin

On Spontaneity

Unfun confession: I am not spontaneous.

I never was—as a kid, the next swim practice was always on my mind. Lists were necessary for everything: swim-meets, vacations, reading, goals, my future house. I was creating vision boards before they were trendy. Every Sunday, I’d cut out my favorite furniture from weekly newspaper circulars for my future house. Could it have been the naming? Or was it having something to look at in the uncertain fog of childhood? Endometriosis has been part of my vocabulary, my identity, for over a year. I have a name for the cloud, but what can I do with it?

I’m still a list-maker and planner. It’s also all about tracking workouts, moods (I am always a mood), self-care, physical therapy, and sleep. Why? I have still been experiencing significant chronic pain and fatigue after excision surgery. Tracking symptoms is a way to see patterns and identify triggers. The scientific collection of statistics is a ritualistic calming. 

As I write this, I still think I should be more spontaneous. Instead, I plan my life around pain. My period is usually regular, so I plan everything—rest, social time, dates, workouts, events—around how I may be feeling. Otherwise, what if I’m caught in public without an arsenal of tampons? What if I’m stuck in a crowded event, in pain and unable to get to a seat? What if I have to cancel on someone because I didn’t anticipate how ghostly my body would feel? What if I’m so overwhelmed by symptoms I’m being a neglectful partner? Some days, I think a cane for high pain days would be a good investment. Yesterday, I barely made it up a flight of stairs before ceding to the elevator the rest of the day. This may be surprising when you look through my Instagram feed. That’s curation. I prefer to celebrate what feeds my soul online, especially when I need something positive to get through the hard days. I’m the master of the lean with the hip-cock. 

I have been turning the phrase by Rio Cortez in my head for what feels like years: “I have learned to define a field as a space between mountains.” Time and space have a different meaning when you’re racing your limits. Energy is collected in an attempt to maintain inertia. That’s not what her incredible chapbook is about, but the title has taken on a meditative role in my life. I will repeat from my Goodreads review: “if we can communicate how history has made us, there may be space to move forward.”

Tracking, naming, and identifying will probably always be part of the process. I’m an amateur adventurer in all of this. At least until there is some sort of cure for endometriosis.

Some books I was thinking about while writing this:

  • Laurel, Tyler Mendelsohn
  • I have learned to define a field as a space between mountains, Rio Cortez

Stay sweaty and glittery.

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.

An Element of Control

In the spirit of crampedstyleblog’s #selfcarefebruary on Instagram, I’ve been looking closely at what I’m doing when my body starts to shut down. Last month, so many things were missing from daily routine: multiple rest days, dedicated stretching time to keep (my) hips open, allocated time to indulge in pleasurable reading. My body starts to rebel with pain and sour moods when I try to consistently crest 25 miles in a week, at least from what I’ve gathered through tracking my runs over the past couple of years. To try and do better, I’ve added a “self-care” column to my training log.

See! It’s real. I add text or glyphs to spice it up, like executing my glute and core physical therapy exercises are MONEY. Workouts I haven’t done yet are in pink. An aside—can we have a moment for the improvement in technology, from the inaccurate Nike running chips in vogue a decade ago to the relatively accurate Garmin technology of today?

Mileage and workouts might not seem important to everyone, but testing the limits of my body has been a lifelong habit. Swimming for hours a week, sucking in chlorinated air hoping that millions of strokes will lead to some sort of momentary glory. Racking the weight at incrementally higher amounts on the squat rack, knowing that my secret weapon was kicking underwater like a dolphin for fifteen meters at a speed faster than most of my peers. Tenacity is a piece of identity I’m not willing to forgo. Chronic illness changes this perception of invincibility.

I think of this quote from Sick when the attempts to feel alive, to feel healthy, seem out of reach:

“If you know a part of you is always dying, taking charge of that dying has a feeling of empowerment.”

There is something in pushing the limits, in feeling a rush, however it is found. There is an element of control, a belief that there is a choice.

I see overlapping threads in recovery memoir, illness accounts, and athletic feminist theory, like Leslie Heywood. My curiosity piques when the author pushes against the perfect story, the perfect feminist character, the story of what is supposed to be best for your health. These accounts, these protagonists, these people are not perfect plaintiffs. I’m looking at the complex stories broadly to identify threads, like The Recovering by Leslie Jamison, Pretty Good for a Girl by Leslie Heywood, Sick by Porochista Khakpour, Don’t Let Me Be Lonely by Claudia Rankine, and Annie’s Ghosts by Steve Luxenberg. There are more, but I think that brief list gives a smattering of the different approaches–in form and content.

I’m looking to expand my list, so please comment with recommendations. A few books I’ve been meaning to read: The Amputees Guide to Sex by Jillian Weise, The Carrying by Ada Limón, The Collected Schizophrenias by Esmé Weijun Wang, and Crumb-Sized by Marlena Chertock.

Thanks for reading. Stay sweaty and glittery.

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.