Feeling Athletic & Chronically Ill: Not Polarized Feelings

Setting the scene: I’m propped up on the chaise section of the couch with a heating pad on my back, a cat snuggled on my shins, while I think about the Baltimore Running Festival 5k. I set a personal record by 30 seconds yesterday, running the 5k in 21:23. This post will recap the race, then I’ll explain what I did to prepare while managing endometriosis. I share my endometriosis journey not so you feel sympathy, but to share information and break down the isolation that comes with the alienating condition. I run for the endowarriors that can’t because their kidneys or diaphragm are compromised from the disease, or because a doctor has not referred them to excision surgery.

First, the easy part: the race recap. The weather was PERFECT. The course was mostly shaded by buildings in the 7:30am morning sun while the temperature was around 50 degrees. I wore a Team Baltimore Flowtank top and shorts because I know I overheat. 

Mile 1: 6:49 pace

The first mile felt easy. I started close to a 6 minute mile, so I pulled back. My virtual coach from Charm City Run sent positive affirmations throughout training to help me feel confident in controlling the first mile. I also saw Frugal Nutrition a bunch of times on her bike. Seeing her brought me so much joy!

Mile 2: 6:58 pace

            I worked on staying controlled and strong, repeating lines from “Polarize” in my head. It’s deciding where to die and deciding where to fight, deny, deny, denial. I find those lines comforting, anyway. The course layout also helped with staying strong. The turn-around was at the halfway point, which helped me chunk each half mile as a small goal to reach. 

Mile 3: 7:00 pace

            The race is billed as “completely flat”—not true!! Maybe compared to the traumatic hills in the half marathon and marathon, but NO. Most of the race is like running at a 1-3 elevation on the treadmill. The course is a common route for my training runs, so I paid careful attention to these changes in order to mentally prepare, and you know, not have unrealistic expectations. The stretch of Key Highway next to Rash Field tends to mess with me. To push through these soft elevation changes, I thought about all my 6:30-6:40 paced repeats in sprint runs workouts.

Last .1: 6:15 pace

            I turned the corner of Charles and Pratt to face my partner and his family screaming, seeing them gave me strength to push it with everything I had left. I had more speed than I expected. I feel more confident that mile 2 can be more aggressive, setting me up to also push harder on mile 3. My heart rate never crested 150. After multiple 5k bonks with a final mile slower than 8 minutes, I can finally see I’m capable of a consistent race pace. My coach planned quite a few runs at tempo pace for 30-40 minutes. They are physically and mentally challenging, but that made the 5k speed seem less daunting.

Will I ever have cute race photos?

I was in my ovulation phase the week before the race, which brings escalating pelvic pain and fatigue as I get closer to my menstrual cycle (yes, despite having excision surgery 16 months ago). I acknowledged my fear that it would be detrimental on race day, then did my best to let the feeling go. Wouldn’t it be great to one day run a race on the most energetic day of my cycle! Rest, despite three evening events at work, was a priority all week. Also: water, gentle stretching, and easy work at physical therapy for an unhappy hamstring. My partner and I partially prepped dinner to remove the dinner decision making after long work days.

How did I prepare in general? In addition to working with a virtual running coach, I have an incredible care team that includes pelvic floor physical therapy, acupuncture, and a gynecologist. I also take extra care to preserve my health by reading about the latest endometriosis research and hormonal cycles in training. If you are looking for a start in your endometriosis journey, join Nancy’s Nook on Facebook. The group has the latest research resources and doctor recommendations. The admins work tirelessly to remove misinformation.

An awful truth: most of my care is not covered by insurance. On top of endometriosis having a 7-10 year diagnostic window, most of the best care is still difficult to access. There are multiple reasons: dismissal of women’s pain (just read this essay by Tressie MacMillan Cottom), inadequate diagnostic procedures, or insurance companies deeming excision surgery medically unnecessary. When your body is experiencing pain for such a long time, it takes extra care after diagnosis to get close to a baseline of “normal,” which I like to think of as pain-free. I’m still not there. Working to balance my hormones and energy levels with everything listed above has been a start. I cycle syncto nourish my body, including easy activities at certain times, even when I’m working towards big running goals. 

More than the pain, I’m at a point where I can barely control my anger about inadequate care and access to resources. Writing to break the silence is my main advocacy now, though that will change as I meet more people working to create change.

Some books I was thinking about while writing this:

  • The Body Paper, Grace Talusan
  • Music for Wartime, Rebecca Makkai
  • Thick, Tressie MacMillan Cottom

Now, to take a week off from running to stretch, practice yoga, and learn new hamstring strengthening tools at physical therapy. 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

A Playlist For Every Pain

Legitimate endometriosis specialists and advocates will be on The Today Show next week. It feels like a change in awareness is coming. The air is less salty, even the ground has a spring. 

I am thrilled, especially because earlier this month an endometriosis specialist in the area was on the morning news, sharing outdated knowledge. One of those statements was that it’s common for folks with endometriosis to have another surgery in two years. With true expert excision surgery, that’s incorrect. Let’s consider the monetary cost, without even mentioning the physical and emotion cost of surgery: the doctor expects someone to accept that every two years the patient will 1. take significant time off work and 2. pay for invasive $20,000 surgery? How is this acceptable care for something that has barely been researched?

I want to follow the light today. I don’t want to think about the doctor that told me I don’t look sick, when I went to her for help with a list of symptoms. Or the anxiety that comes with each ovulation. Or the depression that comes with a lack of change under a new treatment. I want to talk about music that keeps me going. The Warped-Tour-mixtape-generation has stuck with me through changes in media. I have all sorts of playlists, from running fast as an emo kid to getting to work and writing. Here are some highlights from my chronic pain playlist:

Ace of Base – The Sign
I know what you’re thinking. Ace of Base? Life is demanding without understanding. This is Swedish pop, right? I’m trying to write these without major research, more with gut reaction. The sticky-pop has existential lyrics, like the period of time right before diagnosis.

Janelle Monáe – Tightrope [feat. Big Boi] 
I first heard this song in a spin class with “Crazy Eddie.” I associate this song with sweat on the floor, triumph in my heart. Joy in the face of pain. Belief in my body. I keep on blaming the machine.The fine balance Monáe sings about is just PERFECT. Don’t @ me, I love this song.

Amanda Palmer – Runs In The Family
A friend gave me a collection of Amanda Palmer/Dresden Dolls songs in 2014 and my mind exploded. They blend performance, art, and theatrics beautifully. Runs In The Family captures the anxiety and rage that come with invisible chronic illness, and considers the question of intergenerational trauma. If wellness is this what in hell’s name is sickness. Want to say that I don’t look sick again? 

Migraine – twenty one pilots
I’ve agonized a bit over which twenty one pilots song to include. I was a late adaptor—coming to the band when Stressed Out was released. But of course, they were first signed to one of my favorite pop punk labels, Fueled By Ramen. I mean, they expemplifiy the dancy-pop-punk full of angst that I still can’t get enough of. I think I just like how sad and hopeful this song specifically is.

Panic! At The Disco – Nails For Breakfast, Tacks For Snacks 
Speaking of Fueled By Ramen, I have to be honest and include Panic at the Disco (no exclamation point right now, right?). A Fever You Can’t Sweat Out was inspired by Chuck Palahniuk’s books. Though I’m not Team Chuck since finding feminism, I can’t deny the sad-Vegas-pop-punk fusion I spent time with in high school. This song, and many of the early Panic songs, feel like when you’re trying to assert that you are in pain and deserve to be heard.

That’s an excerpt. The playlist will be constantly changing, like my levels of hope. Listen here.

Stay sweaty and glittery.

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.

#cheesememe

It’s the beginning of Endometriosis Awareness Month, and today, I want to talk about cheese. I may be influenced by Jenny Lawson. I finished Furiously Happy on audiobook in January and I’ve been thinking humor and chronic illness since then. As I change my daily habits, I will never forget all that cheese has done for my gastrointestinal system and my poetry career.

This post will begin with a confession: I watch The Today Show almost every day. I’ve had this morning ritual since moving to Baltimore in 2010. Despite changes in career and habits (early bird to night owl, then back to early bird), Al Roker has stayed with me. He’s the only staff member that hasn’t changed in the eight year period, right? But I was betrayed on January 31, 2019. The segment was on CHEESE.

Per nutritionist advice, I have mostly eliminated dairy (anything with casein, the main protein in dairy) from my diet since February 2018. Endometriosis is exacerbated by inflammation. Dairy is an inflammatory food. I grumbled my way through it, and continue to grumble to this day. Are we at Harris Teeter? Let’s walk by the cheese area to check on my favorites. Look, Satori Balsamic Bellavinto Cheese is on sale and in a sample pod! I’m going to smell it. Ordering food? Homeslyce still has my favorite four-cheese garlic. Let me linger my mouse over the item, remembering the surprise of tart blue cheese with sweeter mozzarella, then build-my-own-pizza with dairy-free cheese, pineapple, and basil.

If a poet can have a brand (debatable), I built the early part of my career on sad poems about loneliness and cheese. Spreadable cheese, block cheese, string cheese (which I bite into, by the way)—cheese was comfort. The soft taste on the tongue, the salty sting, was a hug from the inside. There was even a Baltimore flurry of #cheesememe posts after an MFA classmate made a book out of Kraft Singles (3-4 years ago, I think). How is that book doing, anyway? I saw it about a year ago and it still hadn’t started decomposing. Giving up cheese was probably a good idea.

Anyway, it’s day two of Endometriosis Awareness Month. Click here for facts—the disease affects an estimated 176 million people worldwide. The disease isn’t limited to gender. Or cheese preferences. I’ll be posting more on my Instagram and on the blog throughout the month.

Stay sweaty and glittery.