Demons In Your Foot

With an acute injury or illness, there isn’t the this is your fault judgement that comes with chronic illness. No one says there are demons in your foot if it’s broken. No one says you deserve this. No one says that maybe if you did more yoga, ate kale, or got pregnant, you’d be cured of a broken bone. Rather, the healthcare team sets out with the goal: how do we fix this?

Having a chronic illness is the difference between walking into a doctor’s office and showing that something is visibly broken, versus walking into a doctor’s office with a list of symptoms that are deemed invisible. I’d say the effects of brain fog and pain aren’t invisible, but what do I know, I just live with them.

I’ve talked with quite a few people over the last month about their own endometriosis diagnoses. We’ve talked about what it means, and what they can do, where to find resources. Knowing that I put my story out there for people as a resource, receiving those messages still brings a wave of emotions. I know because I did (do) this to other people in the community too. You reach out to people when the healthcare system fails to give you answers. We’re speaking up at the doctor and being dismissed, so we go to each other.

I had so little information about returning to running after a hysterectomy. If you believe Google, your spine shrinks, you can literally do nothing fun ever again, and you become extremely unattractive overnight. This kind of information is on gynecological websites!! Luckily, I have a knowledgeable pelvic floor physical therapist. She kept me in check—that it would be a long recovery road, but there is no reason I wouldn’t be able to come back stronger.

February running was rough. I was also getting into contortion training, and because I never know my limits, I ended up freaking out my psoas muscles on both sides from overstretching. Every step hurt for most of the month. Every. Single. Step. I was terrified at first, then after figuring out more of what I did to myself (woops) with my orthopedic physical therapist, I accepted that I overdid it and needed to rest. I ran a bit over 60 miles the month of February, going out for short runs to keep moving as I healed. I was told that as long as I felt better after running, this was okay to continue.

March looked much better. Taking it easy worked. I’m so used to never-ending chronic conditions, with little hope. I told a friend in February that I didn’t even know how to address acute injuries anymore after thinking I broke my toe by dropping a glass candle on it (I went to urgent care and it was just badly bruised). The snowiest days overlapped with the worst of the psoas and toe pain, and for a bit I felt like I would have this pain FOREVER. Thank goodness for time. Honestly, I was shocked that rest WORKED.

I felt well enough to time trial the Shamrock 5k on March 13. I had some strong workouts in the bank from January, and 10 months after surgery, I was itching to test myself. I see it as a big moment of personal growth to go out to “race,” knowing it wasn’t going to be a personal record. My run coach, Nick, and I met to warmup, then he paced me. My goal was to go out strong, then keep descending. I managed to do just that on a breezy day on the Carroll Park 800, splitting 7:22, 7:15, 6:57, and 7:11 for the last 0.1. The first 2 miles felt quite controlled, and I fought in the last mile. Having an extremely fast pacer does help, but I had to stay focused on the surprising windy loop without the adrenaline of a race situation.

The in-person Shamrock 5k is notoriously fast. In my age group, the top 3 are all usually under 20 minutes—a virtual prize was not on my mind. Monday after the time trial, I received an email from a colleague that also runs, congratulating me. In a virtual year, I finished third in my age group. I immediately stared minimizing it, saying things like “well this will be the only year I do well at the Shamrock!” Then I stepped back. We are in multiple pandemics. I had major surgery 10 months ago. No matter what, this is an achievement to celebrate during an extremely difficult year. Anyway—as long as I can, I’m working toward faster and consistent running.

Now I’m in the final month of preparing for a half marathon. Again, I am excited and terrified to see what happens, even though I’m thinking of this as a confidence booster before a fall buildup. As I can consistently train because I’m not losing buckets of blood and overcome with full body pain, I keep seeing small improvements every day in pace and recovery. My mindset has changed, therapy is working!

The timing of my last read was perfect too—Meb Keflezighi’s 26 Marathons. He focuses on the training, the process, and running a smart race for the conditions you are in. The joy he feels in running shines throughout the book, and he reminds the reader every page that what matters in running is what you learn about yourself. As races restart and I chase down new goals, I keep thinking about his words: “I learned that giving your best even when you’re not at your best can provide insight into what’s possible when you’re on top of your game.”

Books I’m thinking about/recently read:

  • 26 Marathons by Meb Keflezighi
  • The Vanishing Half by Brit Bennett

Stay sweaty and glittery. Black Lives Matter.

You Made Her Like That

I remember reading some passages in a book that did a hilarious bit about philosophers, but now I can’t remember the source. The source was supposed to be an analogy for things people thought they knew, but didn’t, and were instead clinging to a useless ideal. It might have been Taylor Swift related—she’s my age yet the queen of reinventing and new perspectives in her career. No. Now that I’ve been revising, it was in Jenny Offill’s Weather.

How about we start here. A few weeks ago, a friend posted about National Eating Disorder Awareness Month in a way that helped me articulate some feelings that have been brewing in my mind. She asked people to think about how they perceive eating disorders. Frustrations I have about chronic illness clicked. I am not looking for you to say that I’m a warrior, or that this journey has made me strong. Having a chronic illness isn’t a special superpower. There are other, less devastating, ways to build resilience. How about something that has an end date? Instead, I want you to listen and think about your world view.

I’m looking at you to reflect on how you understand chronic disability, chronic illness. Think about how it shows up in the workplace, your social life, your response to the pandemic. Read 17 Facts About Endometriosis That Show Just How Horrific This Disease Is and think about what a good day with a chronic condition is like.

I want simple things. I almost wrote girly things, but that’s a way to soften and gender the language. I’m not really interested in softening when women have had to do that for centuries. So I want these things: healthcare coverage. Job security. A step back from the toxicity of the grind culture. Will anyone log off their work email? Sympathy is useless without systemic change.

Many advocates are doing an incredible job educating about endometriosis this month. I am thankful for them. They are the people that taught me where to look for care. Advocates teach people how to speak in a doctor’s office, and to trust that you can fire a doctor if the doctor isn’t listening. Speaking of moxie, the only part of Moxie I loved was how Vivian’s nomination for “most likely to follow the rules” spurred a zine-lead revolution.

Solidarity in the endometriosis community felt forced early in my journey. Most of what I saw was about fertility, rather than quality of life. Years of pain led me to disassociate from my uterus. I don’t associate fertility with womanhood. I just—have a meat sack and I can do things with it when I’m relatively well, like running and circus arts. Long hair and cat eyes are fun too. If you spend some time thinking about your gender performance, you may notice biology and gender are not truly connected.

More people are getting behind the queer community, behind the fact that equitable access doesn’t exist until everyone is involved. More people are yelling that ever about a disease that takes on average 8 years for diagnosis. More people are yelling that bipoc patients face greater barriers from systemic racism in medicine. I am so grateful for Cori Smith, Lara Parker, @endoqueer, @crampedstyleblog, @beelynnnyc, @endo_black, @southasianwarriors, and more.

Books I’m thinking about/recently read:

  • Weather by Jenny Offill
  • Stunt by Saida Agostini
  • Fake Like Me by Barbara Bourland

Stay sweaty and glittery. Black Lives Matter.

Dandelion Vibes

I had a dream in which the walls of my house were literally on fire. In the dream, a neighbor, someone I knew but didn’t recognize, said flamethrowers were the hot new trend in creating the just right type of distress. Dumpster fire memes are rampant (and I have shared many), yet somehow, 2020 the worst year I’ve had. Yes, that’s a privilege: I still have a job, my house, so far everyone I know that has had COVID19 has survived.

I’m reading The Happiness Project by Gretchen Rubin for an event with Discover Charm City Gal Pal Book Club. One of principles is about revisiting joy. This week, I cleared out my phone photos and had a selection developed. I explored the outdoors, managed to run 900+ miles even though I took off three months to heal from surgery, protested, found quiet in the everyday. I even developed the screenshots from Zoom gatherings. How else will we remember what happened digitally? A tangible keepsake speaks.

I’ve done work reorganizing my space this year too: painting a door, setting up an office and handstand space. This also involved getting rid of things, but not everything. A few things have lingered. A dandelion has been growing in the crack outside my basement window. It started growing after deep freeze, after snow. I can’t bring myself to pull it. I think of “Dandelion Insomnia” by Ada Limón.

It’s vicious,
made for a time that requires tenacity, a way
of remaking the toughest self while everyone
else is asleep.

Another reason for the dandelion tattoo I have been contemplating. I drank up Dandelion Wine by Ray Bradbury when I read it a decade ago, and the poem from Limón’s book is getting almost more rotation in my mind than my other favorite of hers, Field Bling. I think about requiring tenacity. In 10th grade, I used “tenacious” as the one word to describe myself. Why shouldn’t it be the word of 2020? We’re also in it together in changing the systems we’ve seen fail in 2020.

Thinking about the weed flower brings me to my favorite quote from Dandelion Wine: “I mustn’t forget, I’m alive, I know I’m alive, I mustn’t forget it tonight or tomorrow or the day after that.” The alive-ness, the feeling that the world is still there—coupled with Limón’s ecstasy in spite of it all, dandelions are the real winners, aren’t they? I’m taking the vibe into 2021.

Books I’m thinking about/recently read:

  • The Carrying by Ada Limón
  • I Hold a Wolf by the Ears by Laura van den Berg
  • Buy Yourself the F*cking Lilies by Tara Schuster
  • The Understudy’s Handbook by Steven Leyva

Stay sweaty and glittery. Black Lives Matter.

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.

Welcome

Welcome to #poetsthatsweat.

On this blog, I’m bringing together my two loves: language and movement. I started using the hashtag, #poetsthatsweat, facetiously a few years ago to get over my embarrassment of being a jock and artist. I’m no longer concerned about being embarrassed.

I’ve also spent a long time pretending to be fine. Since officially diagnosed with stage IV endometriosis in April 2018 (after over a decade of pain, more in a later post), I’ve been looking for ways to express joy. Casual clothes, hard work, and coffee fuel me, but I’ve had to be more strategic if I’m being honest about the chronic fatigue that comes with endometriosis. I’m always thinking about how I will feel in the coming days, trying to ration my energy while still participating in things I love.

On this blog you’ll find my thoughts on running, circus arts (find a solo of me losing myself in a Kesha song here), writing, and reading in the context of health. All things that lead to joy in some way. Life, liberty, and the pursuit of happiness, right?

Most recent reading pleasure: I finished Station Eleven yesterday morning. What an intricate, masterfully written book. Emily St. John Mandel weaves multiple lives together in a society nearly decimated by the Georgia Flu. As you read, you find out how Station Eleven has touched each character. The world is so big, yet so small in the energies of lives that bind us. This line stuck with me:

“If nothing else, it’s pleasant to consider the possibility.”

I want possibilities to look better for future generations of women, womyn. Treatment in the healthcare system is a piece of equal opportunity. Endometriosis hasn’t been studied on a broad scale, only recently receiving major funding.  Medicine’s history is full of patriarchal treatment. I can look back at the rage in my poetry and say “I see why you feel that way.” I am not the first to say this either. Read Dora Malech’s The Kenyon Review blog post CLIFTON, PAIN, AND POETRY. There is finally federal funding to research endometriosis, which will hopefully mean something.

For now, here are some quick resources that have helped me:

Thanks for reading. Stay sweaty and glittery.