excision – #poetsthatsweat

No brains, just vibes

I would like to be unremarkable. I received the results from an endoscopy this summer, and the results were unremarkable, which medically speaking, is the best news I can expect.

I say it’s the best news, but no results can be just as unsettling. Am I feeling the way I am because this is what mid-30s feels like? Is there something we haven’t tested for that will rear its ugly head? I talked about this for awhile with a friend recently. When you have medical history, it can be hard to trust the first read of results. Then, I talked about this with one of my doctors and we decided that we’ll stick with routine bloodwork, probably do another endoscopy in a year or two, and then I’ll be old enough for a colonoscopy. We laughed! It wasn’t patronizing, that’s my relationship with her at this point. She also sincerely reminded me that coming down from all the chronic pain and inflammation that comes with endometriosis takes time.

As you can see, I still grapple with anxiety that comes with chronic illness. There is some reality: I know future chronic illness is statistically more likely after an endometriosis diagnosis. Researchers are investigating why this could be.

There is also another reality: I was racing 50 minutes 10ks, 25 minute 5ks when I was physically suffering from endometriosis. Numbers are used as a benchmarks of health. At least when you’re an athlete and know what you are capable of, it’s hard to keep seeing yourself fall short. (Check out the Maintenance Phase podcast to learn how numbers and more can be used insidiously.)

Still—racing can say volumes about what your body is ready for. How different things are from the WebMD video. I ran the Baltimore Running Festival Pandora 10k earlier this month, finally taking down a 10k PR from 2012. I have been trying to tackle this PR for years, throwing myself at it randomly. Not a great plan.

When I ran up to Druid Hill Park and down to the Inner Harbor this month…I let go. To be cliché, I finally managed to get out of my own way. How different my energy is when approaching running these days: no brains, just vibes since going to therapy. Running brings me much joy and serotonin, but I don’t rely on running in the same way I did in my 20s to define my worth. Or even how I wrote about my identity in athletics since starting this blog. Despite being exhilarated about finally cracking a PR, all it really did was create an excuse for free shots with friends because the waitress trusted when they said she won her age group.

Approaching workouts with a no brains, just vibes energy has made them infinitely more relaxed. I’ve been chanting The Applicant by Sylvia Plath in my head (Now your head, excuse me, is empty. / I have the ticket for that.) while listening to my Ashnikko, Panic at the Disco, and Janelle Monáe mix. To be clear, the mix is called Gay & Tired, which maybe one day I’ll get into more, but for now, just know I was the red corvette from “Becky’s So Hot” at the last Version dance party.

Books I’m thinking about / recently read:

Into Every Generation a Slayer Is Born: How Buffy Staked Our Hearts by Evan Ross Katz
I’m So Fine: A List of Famous Men & What I Had On by Khadijah Queen

Stay sweaty and glittery. Black Lives Matter.

I am deceased

Nothing more unnerving than being a thing.
-Dorothea Lasky, Milk

My first attempt at a longer trail race…was an experience. Not quite unnerving, but felt very much like I didn’t want to be a body. I ran the Hyner Trail Half Marathon yesterday. Quite a few people gave me useful, practical advice beforehand about the course and the climbs, yet the real time experience left me feeling deceased by mile 5. It was a 14 mile race—those last 9 miles were straight guts / wondering if I was a ghost.

I had a little pity party on Strava, so I’d rather focus on additional pieces of the race that struck me in a positive way:

PA Trail Dogs put on such a fun race—from clear communication about how to get to the start in a remote area to delightful folks at the aid stations. I am keeping tabs of more races they host throughout the year. The group maintains Central PA trails, and at the adult races, they use proceeds to fund trail races for kids.
Pennsylvania trail runners absolutely crush descents. I was told to watch for this before the race, and then every time I saw it happen as I was passed, I would tell the runner they were incredible.
Bless the aid stations. I took a spill on a root of a flat section about a half mile before the mile 8 aid station. Correct, I didn’t fall on a technical section. I paused to try to decide if I should just call it an 8 mile training run. I had pickle juice, ginger ale, and then one of the volunteers looked at me while I was sipping coke and said “want some Fireball?” I added some in my soda. This is not a road race, kids.
It was not the final climb (so many steep climbs, I misunderstood the elevation chart and expected more rolling hills, my bad), but there was a climb again after the mile 11 aid station. As I stared at the ascent, the speaker at the station started playing “Come Out and Play.” The rage of The Offspring came when I needed it. I did not exactly charge up the hill in my state, but it was a decent effort.
A man was playing a banjo and drinking from a growler around mile 12— other runners acknowledged him so I know I wasn’t hallucinating. I told him he was doing it right, we had a brief laugh.
I have such a good time with my brother. I was talking about Wineglass and how I never want to hear a race is net downhill ever again, so after I finished Hyner he was like “Well, this race was net downhill. The finish is below the start line.” LOL I had a good laugh in my frustrated post-race mood.
Lighter shoes are not always better. I definitely wore the wrong shoes. No, a different shoe wouldn’t take me from a 14 minute-mile struggle descent on switchbacks to an 8 minute-mile send-it, but my toes were not protected enough in my beloved Adidas Terrex Speed Ultra. I thought “race” and brought them, but I should have brought my Altras (I don’t know the model because I bought them so long ago, they are basically Hummers for my feet). My toes were tenderized by all the slamming downhill early in the race. They needed more protection on the descents.

I’ve already debriefed a bit with my coach, and I’m excited to add more long trail efforts to my training and to hit more races. I love the controlled chaos of trail running, and the camaraderie after. I’ll take a few days off, then be back out there logging longer miles for bigger goals, and having a good time with the Faster Bastards Oberhills crew.

Books I’m thinking about / recently read:

Milk by Dorothea Lasky
The 2000s Made Me Gay by Grace Perry
I’m So Fine by Khadijah Queen

Stay sweaty and glittery. Black Lives Matter.

With Pizzazz

Define me in some glitter if I crash. I have a little more pizzazz in my step after an iron infusion, so why not quote Akintoye?

While I was waiting on multiple rounds of bloodwork—literally, I feel like a vampire’s pet over here—I sent in a question about iron to Fuel for the Sole. Meghann Featherstone shared some excellent nutrition advice. However, when you find out you have an autoimmune blood disorder, trends that need a little more than nutrition tweaks come into focus.

I read the bloodwork results on a Friday and spent the weekend panic googling, as one does even when they know they shouldn’t. After talking with my doctor early the next week, I have a better understanding of where I am now: B12 lozenges because my body doesn’t absorb it through my bloodstream as it should (hence the iron dropping as well), and a GI doctor visit scheduled for the end of July. This isn’t my first chronic illness rodeo. I have the hardest time before I have action items. Once I know what I need to do, I’m generally ready to adjust.

Like I mentioned, before these results, I had another iron infusion. My hematologist was keeping close watch on my iron for the past year. After a significant drop in less than 2 months and the other symptoms I was experiencing, he decided it was time for another infusion (I had two in April 2020, before my latest excision and hysterectomy). It was a long year, but it makes sense that we couldn’t rush a treatment. I also appreciated that he didn’t throw iron pills at me—they can be hard on your GI system (something we were sensitive about for me), and as it turns out, my body has trouble with absorption anyway.

While I’m waiting for my GI specialist appointment, I’ve been thinking about interactions with doctors old and new. Cramped Style Blog was posting in her stories about this recently. It’s bizarre to be going over your medical history, bloodwork, all things pointing to chronic illness—then hearing a doctor say you’re in perfect health. Bitch, I’m not here because I’m bored. Are you not looking at the list of symptoms that I painstakingly documented for you to better diagnose me?

Like many folks in the chronic illness community, variations of but you don’t looks sick send me into a rage. I would prefer not to have a rolodex of specialists. As I’ve gotten older, I do try to understand the possible why after the first wave of anger, so I can explain to the doctor how dismissive the language is. Is it thin privilege? Doctors often react this way if you have a BMI under 25 (which is trash science btw). They can’t fathom how you could be ill if it’s not because of your weight. Or is it because if you’re an active person, they can’t fathom how you can train for half marathons, attempt to enjoy your life, while in significant chronic pain? My philosophy is that if I’m going to be in pain, I might as well be having some fun. Or as John Steinbeck recounts in Travels with Charley, “If it’s rotting you want, you can do it any place.”

Since you made it to here, I’ll do some flash recaps of races over the past few months:

BRRC PrettyBoy Trail Race (May 15)
So fun!!! It was mostly on fire roads, so the course was pretty speedy until the last mile uphill. I booped my toe pretty significantly before the race, but thought nothing of it. I took my shoes off after the race and saw how swollen and purple and angry it was. A trip to urgent care confirmed it wasn’t broken, but my toe does not look normal 2 months later. Oh well! I had the best time out there, wearing my Adidas Terrex Speed Ultra. I picked them up in January after reading the Believe in the Run review, and I love love love them. They are light-weight, yet I do not feel the rocks under my feet. They are pink and teal, though mine are covered in mud and I’m too lazy to clean them. 10/10 from my wide feet.

DC Frontrunners Pride 5k (June 10)
This was a first run back after a week of being quite ill with (not?) covid to kick off Pride Month. I was running it with some of my favorite library gays and my girlfriend, so the only goal was to have fun. I accidentally rubbed against someone at packet pickup and was immediately covered in glitter for the evening. 10/10 will be back every year, and will try and stay awake for the evening dance party next time.

Arbutus Firecracker 10k (July 4)
This is the first race I’ve enjoyed the effects of the late May iron infusion. Now I know that during the horrific B&A Trail Race that the vibes were bad inside my body. So! After a spring/early summer of consistent trail running, and my body adequately carrying oxygen, I ate those hills for breakfast. I felt so strong on the hot and hilly course, and closed the last .2 downhill with pizazz. I was only 20 seconds off my old has heck 10k PR. I’m not sure if that says I am stronger on challenging courses, or if a big breakthrough is finally coming. I’ll keep running up that hill to find out.

Books I’m thinking about / recently read:

Black Boy Smile by D. Watkins
Girlhood by Melissa Febos
The Octopus Museum by Brenda Shaughnessy

In between runs, go support your local abortion fund. The organizations have been preparing for years. To quote the indominatable Sherrilyn Ifill, “Remember that we have never seen the America we’ve been fighting for. So no need to be nostalgic. Right on the other side of this unraveling is opportunity. If we keep fighting no matter what, take care of ourselves & each other, stay strategic & principled, & use all our power.”

Stay sweaty and glittery. Black Lives Matter.

Not To Be Dramatic

Have you ever been so sure you’ve done something, that when you come to the realization you did not do it, your world rattles?

I had planned a long weekend in Philadelphia with my favorite communities: writers and runners. AWP was back, and Sunday the Love Run had a celebratory half marathon through the city. Everything I could dream of, right?

The first few days in Philadelphia filled my soul: connecting with new and old writer friends, finally experiencing the punk-rock Tirefire Reading series, writing in the garden of the Rodin museum.

Things started to fall apart at packet pickup Friday afternoon. I was so excited to show my girlfriend the running community, to show her the ridiculous things we do to get hyped. As I tried to locate my bib number, my name was not showing up. So weird, I thought. It must be a glitch, I thought.

Then I considered—I was receiving promotional emails, but did I get a bib number reminder email? As the realization washed over me, I searched my email receipts for registration. I generally register when it first opens (can’t miss those discounts), so it had to be there. Right? It wasn’t. I ask Athlete Information if they have registration today. Nope. It completely closed on Wednesday.

Fighting tears in the convention center hallway (is it even a writing conference if you don’t cry in the convention center?), I’m panic texting my coach and another run friend. What should I do? What are the options? Extremely stubborn, I didn’t want to miss out on a race weekend I prepared for. We find that the B&A Trail Half Marathon still has spots. I text the AWP 2 Hype 2 House 2 Queer chat that I’m leaving that night. I get home, try to calm down and relax with my cats. I’m prepared physically, why should a little stress derail me? I started infusing humor as fast as I could, texting my coach, I should have opened this with I’ve made a huge mistake.

Not to brag or be dramatic, but the half marathon was the worst I have ever felt in a race. Perhaps because of the stress of the previous 48 hours, perhaps because I’ve been struggling with my ferritin and thyroid levels, perhaps because imbalances from years of chronic pain decided to flare in my back—everything was NOT GOOD.

The race didn’t begin that way. I started cruising around 7:45 pace. I was going for it, knowing all my workouts and long runs indicated this would be an easy start to push from there. My plan was to start pushing to bring it down to the 7:30s after the first third. I took my first gel around mile 4.5 and said bye to my friend, she was folding a workout into the race.

I wasn’t feeling bouncy or fresh, but I still felt like I could hold strong for the second half as I approached the turnaround. From years as a swimmer and past races, I knew I didn’t have to feel perfect to be able to dig deep. Around mile 8, my body started to rebel in all the ways: nausea, tightness in my back to the point that I could not drive my legs. All in all, NOT GOOD. Still, I know these things can pass.

I took my last gel around mile 8.5. I gave myself another pep talk. One bad mile wasn’t going to stop me. As I continued, things got worse. Total body pain. Nausea. Heaving. Why couldn’t I at least vomit and get it over with? That’s when I started to panic. The last time I felt this terrible in a race, it was before my first surgery in 2018. This was not a time to relive medical trauma! I turned up my music, asked Ashnikko to give me strength.

I was either slowing down to heave as I ran, or I was stopping to heave along the side of the B&A Trail. With only a few miles to go, I passed some of the Faster Bastards cheering. I told myself to dig deep and felt a surge of adrenaline as I passed them. I can salvage this, I thought.

Shortly after I was off the trail again. They jogged by and asked if I was okay. I said, no, but I’m going to finish. I heave-run-walked my way to the finish, keeping it together enough to cheer on runners passing me, to say hi to people I have only interacted with online.

My final time was around an 8:30 pace, despite some 10 minute miles in there. While I am frustrated, I am so proud of this consistent training block. I stayed mentally strong in workouts. I felt relaxed in long runs. Despite dabbling in running for over a decade, I keep reminding myself that I haven’t truly been able to consistently run until being cleared for sport in August 2020 after my hysterectomy and second excision surgery. I’ve finally had a chance to build. After some rest, I’ll spend the spring and summer finding new limits on the roads and trails with the community. This is a hobby I love, even when it sucks. There are going to be challenging races along the way. Yesterday, I loved seeing friends reach their goals, knowing I will be in that place again.

A note because the pandemic isn’t over: I took a rapid test last night, I’ll take one later in the week, and I’ll wear my mask if there are places I must go.

Books I’m thinking about / recently read:

Other Girls to Burn by Caroline Crew
Unprotected by Billy Porter
My Life as a Villainess by Laura Lippman

Stay sweaty and glittery. Black Lives Matter.

What’s your fantasy?

One of the few things that got me through Wednesday’s workout was fantasizing that I was Molly Seidel in the Olympic marathon. However, I was nowhere near her pace as I jammed out to Ludacris. I was a sight to see. Shoes squishing, wet shorts flapping, and neither from rain. Couldn’t it at least start raining for some relief?

My one year anniversary of back to running happened this week. Other than excitedly texting my coach, I gave it little fanfare. Well, I guess writing about it on the blog is some fanfare.

Pushing through the weather was a test of mindset change. I adjusted my goals and carried on. I checked in with my body—was I feeling faint? No. Was anything hurting? No. Keep going. The workout was not be speedy, but it was work on my feet. My coach reminded me to use the humidity and heat pace chart next time, but I did not dwell on pace in a training cycle where I’ve had so many on point runs. I 100% contribute this to the hysterectomy. Sure, I didn’t test positive for adenomyosis, but something was real fucked up in there. For anyone new to this blog, I had maybe 1 week a month that I wasn’t in crippling pain due to endometriosis and potentially adenomyosis. I quote a common refrain in the endometriosis community: We’re not faking being sick. We’re faking being well.

Since restarting seed cycling in earnest again a few months ago, I didn’t even notice mood swings this luteal phase. I’ve also learned so much about hydration and fueling from the Fuel for the Sole podcast by Believe in the Run with Meghann Featherstun. I started learning about nutrition in earnest from Caitlin Self in 2018. She taught me so much about inflammation and chronic conditions. Now, I’m at a place with limited symptoms, therefore can think more about small tweaks that can substantially improve my running.

All of these things—being able to focus on small bits of health, being very at peace with being uterless—come from the mindset change that exhibited in this week’s workout. In such an uncertain, traumatic year (let me count the ways), I am preparing myself for fall race cancellations. It’s not pessimistic to be realistic. The delta variant is raging. I’m mentally prepared to test my training cycle in a time trial and to pivot to more trail time.

My fantasy would not only to have fall races, but for everyone to get the vaccine. While we wait for those vaccinations to kick in, I dream that people would wear their masks because they care about their community.

Books I’m thinking about/recently read:

Postcolonial Love Poem, Natalie Diaz
Spirit Run, Noé Álvarez

Stay sweaty and glittery. Black Lives Matter.

Protect Your Mental Health

Nearly every time I feel like I’ve forgotten how to sit silently and read, I learn that all I need is an empty day. The simple time makes me so happy, I know it’s important for my mental health.

There wasn’t much talk about mental health when I swam competitively, over a decade ago. Performance mattered, but it didn’t feel like the person behind the performance did. At this meet, I should have been celebrating how much the team overcame together, but all I could really think about was what I hadn’t accomplished as my swimming career ended.

It’s commendable for Simone Biles to make the decision to protect her mental and physical health—we won’t know more unless she chooses to share. It’s hard enough for an athlete to speak up about struggling when they strive to be the best, to be seen as strong. She’s paving the way for young athletes. Coaches, take note.

Speaking of mental health, I talked about the intersection of mental health and chronic illness with Amatus Health. You can listen to podcast Episode 30 of Share here. Also listen in for the sarcasm I drip on words like *hysterical*.

Summer is supposed to be down time for me, but it hasn’t been. At Lyra Choreography last week, I let my entire body melt into the mat. For the first time in weeks, I felt like I slowed down. It was 9:30pm on a Thursday.

Running is moving along. Despite the level of business, I am happy with how half marathon training has progressed, especially in the extreme heat and humidity in Baltimore. To stay balanced in running, I lean on the creativity of circus arts.

Circus arts take incredible strength and endurance, separate from running. On lyra, my first movement love, you hold on, pretending to be graceful while using different points of pressure on your body to create gravity defying shapes. Add a spin, and no one can tell how hard it is as long as you control your face too. This is all while trying not to fall to the floor.

It’s a safe space for me to explore when my mind and the outside world feel like chaos. Recently, the choreography class was spent exploring emotion and shape. Our coach played a song and asked us to lead with our elbows, then picked another song and asked us to lead with our hips.

There is a foundation in all the movements, but after the foundation, possibilities are endless. As much as I love running, lyra and other circus arts allow more creativity. It’s not like a road race, where strategy still depends on speed.

Books I’m thinking about/recently read:

How Beautiful We Were, Imbolo Mbue
On Juneteenth, Annette Gordon-Reed

Stay sweaty and glittery. Black Lives Matter.

Consistent, Careful Mileage

I’d like every day to feel like this morning, or to feel like the thrill of new friendships budding. Those are moments I feel like I’ve discovered something about existence.

I knew there was a reason I bought a Koala Clip with Shalane Flanagan’s iconic quote—my first response to Nick after today’s workout was “what the fuck!!!”

In the unreasonable heat, I told myself to just give it a go today. I ended up cruising in a 3 x 8 minutes workout: 7:35, 7:33, 7:24 with 3 minutes easy running between each. I did walk a bit of each recovery rep to bring my heart rate down in the heat, but still. A year ago I was only allowed to walk. Seeing how consistent, careful mileage building pays off has been a real joy.

I struggled to run these paces in good weather before the Cambridge half. I should say something about that half marathon, shouldn’t I? I raced a half marathon in May. About two months ago at this point. I PRed, unofficially by 3 minutes, officially by 2 minutes. The course was .15 miles long for everyone I talked to—unofficial or official, I ran a strong race at a 7:59 per mile pace. Consistent splits and positive self talk are two things I am so pleased I maintained during the race.

However, I do not recommend crying while racing. Around mile 8, I started thinking about where I was a year ago. Desperate for another surgery. Struggling to sleep because of all-encompassing pain. Bleeding through at least 40 tampons a menstrual cycle (I recently learned 8 tampons is “normal”). Always planning an escape plan for unplanned bleeding or pain. Yet here I was, flying through a half marathon. I hyperventilated for a bit, but there were still 40 minutes of running to go. Taylor Swift’s “22” started playing and I pulled it together. Show me someone that doesn’t smile when that bouncy chord opening starts.

More than the time, I am SO HAPPY to have experienced the social aspect of a race again. The chats before, commiserating during, the exhausted but thrilled recaps together after. Saying to each other things like “looking strong” or “we got this” or “I’ve been pacing you”. Overall, the race was a delight. I even threw myself into a group that was from Baltimore and chatted for a bit after the race. It took everything to not say “could we be best friends?” after the year without races.

As Jessica Pan wrote in her book, Sorry I’m Late, I Didn’t Want to Come, “Why can’t confidence and optimism come with a lifetime guarantee?” I would pay for that that. She recommends walking into a room like a tall American man. Are men ever rattled? I’d like every day to feel like this morning, or to feel like the thrill of new friendships budding. Those are moments I feel like I’ve discovered something about existence.

I took more of Pan’s energy into the Baltimore 10-Miler. Dare I say I enjoyed the 900 feet of elevation more than the flat race? What’s this? The scenery changed, no—the scenery rolled in Baltimore County country. Seeing the landscape helped me understand the area a bit more. The greens and blues crackled in the morning light. As the second race of the year, I also felt less emotionally overwhelmed. I’ll probably hop in a few more races throughout the summer while preparing for the Wineglass Half Marathon.

Books I’m thinking about/recently read:

Sorry I’m Late, I Didn’t Want to Come: An Introvert’s Year of Living Dangerously by Jessica Pan
Chesapeake Requiem by Earl Swift
Detransition, Baby by Torrey Peters

Stay sweaty and glittery. Black Lives Matter.

Pre-Race Small Joys

This weekend, I will run my first half marathon since 2018. The last half marathon was 6 days before my first endometriosis surgery. While visiting friends to run the St. Luke’s Half, I spent as much of the day before the half marathon as I could curled up on the air mattress, in agony. I wasn’t sure if I would even be able to finish the race. I did, and the last few miles were full of scream-whispering “f***” and taking a beer from a spectator at mile 11, then immediately regretting it. Will I ever take a beer from a stranger again post-2020?!

A year ago I was prepping to virtually interview Ellen Bass after getting news that I would be able to have a surgery I desperately needed with 5 business days to prepare. I do not recommend such a short amount of time to prepare to be out of work for 4 weeks in a short span of time. Why was I having surgery last minute? The scheduled surgery was cancelled due to COVID-19. So many of us in the chronic illness community lost access to care and procedures during the pandemic. So many of us lost more than the ability to travel.

Here we are in 2021, in a different place. The race is very small, and I filled out the symptom questionnaire earlier today. I have A, B, and C goals for Sunday. No matter what, because as Nick reminded me, conditions always play a factor—I’ve come a long way from the pre-hysterectomy-and-second-excision-surgery crippling pain. I finished up mile repeats in my last big workout, cruising within 30 seconds of a mile time trial in December. As the greats say, LFG.

In honor of all the physical and emotional work I’ve done to live with endometriosis, here are some things I’m proud of in this training cycle:

I adjusted training runs as needed. I haven’t had pelvic pain since the excision and hysterectomy in May 2020, but I still follow my hormonal cues and adjust my intensity depending on if I am in my menstrual, follicular, ovulation, or luteal phase. Alissa Vitti and Dr. Stacey Sims can teach you a ton about exercise and your hormonal cycle. My acupuncturist, pelvic floor physical therapist, and orthopedic physical therapist have all been yelling at me about this for years.

I was able to note small joys in most workouts: the park blooming! Daffodil season! Feeling stronger in the recovery reps during speed workouts! So many doggos! There were definitely still runs with an “ughhhhhh”, so I put on Kesha/Lil Nas X/K Flay/etc. and just did it. Getting in some long runs with my friend Maura helped too.

Caring much less about how much faster other people are in easy paces. I generally run at the “high” end of my easy pace. Honestly, I still have concerns about fatigue and my hormonal balance, so I’ve accepted that I’m not going to crush my paces every time, especially on easy runs. The easy runs exist to build muscular endurance. I enjoyed them!

Books I’m thinking about/recently read:

One Life by Megan Rapinoe
Black Widow: A Sad-Funny Journey Through Grief for People Who Normally Avoid Books with Words Like “Journey” in the Title by Leslie Gray Streeter

Stay sweaty and glittery. Black Lives Matter.

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.