It’s easier to put on red lipstick and scream on the inside.
In November, I spent two days filming with a crew for WebMD. I share my endometriosis journey to help spread better information, to break down the isolation of the alienating condition. Because it’s chronic, I worry how it will affect my career. I worry that people will just look at me as sick and weak. I know those are fears, not facts, so I’m so glad WebMD has a three part series about endometriosis in which I am one of the features (and I talk about these fears).
I’m more than work and physical pain. There is movement and creativity—all experiences better when shared.
I’ve been looking back at my blog this year and notice how often I work to mention joy. I can’t deny the impact of Ross Gay’s The Book of Delights on my perspective. I think about his work, and many others I’ve read this year, while reflecting on what I’ve attempted to do in 2019. Which has turned out to be a lot. One of the difficult things I’ve learned in therapy, and well, all my fucking appointments, is how hard it is to undo thought patterns.
Much of my time this year has been spent at doctors: pelvic floor physical therapy, gynecologist, acupuncture, therapy, orthopedic physical therapy, general practitioner…I’m exhausted. In November, I was at multiple doctors a week. I burned out, cancelled a bunch to get back to some basics and have social time. Trying to pack all the appointments for my health ended up becoming more stressful than helpful.
I’ll echo what many have said about chronic illness: it’s isolating and exhausting. Managing your health feels like a full-time job. You’re always calculating your time. You look at other people and feel resentment that they haven’t been to a doctor weeks, or even years (that’s probably a bad move on the opposite side of the spectrum). Every social interaction and choice become loaded with the question will I make my symptoms worse? What will I have to do to undo this event?
Talia Hibbert puts the isolating feeling in perspective in Get A Life Chloe Brown, “Her body was vulnerable enough without her heart following suit.” Chloe Brown has fibromyalgia, and after her friends and fiancé have left her, she’s convinced herself she’s better alone. Que her writing a list to be more adventurous. Relationships are already vulnerable. Add constant pain, unpredictable energy levels, and a social life feels more like a let-down. But like Chloe, that’s not what I want. I’m more than work and physical pain. There is movement and creativity—all experiences better when shared.
The shift I’m feeling isn’t only from the books I’ve read. I can’t tell if it’s the annoying phrase, getting older, or the perspective change with time. Or therapy. After writing a book about not wanting to be vulnerable, maybe now it’s easier to see the importance of relationships. My partner is incredibly supportive, I’ve had a chance to collaborate with all sorts of creatives and change-makers at work, I can make time for friends, my family sticks around—maybe it all will be okay. I can change how I react to pain.
In order to intentionally find more joy and spend time with loved ones, I’ve decided 2020 will be The Year of the French Fry. I LOVE potatoes (ask friends that went to The Woods writing retreat about my 2018 potato poem). I also love exploring different parts of Baltimore with people. So in the comments, please suggest your favorite fries, from Royal Farms to upscale restaurant. French fries have diverse pleasures. Just like Baltimore.
The book I was thinking about while writing this (obviously, perhaps):
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:
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.
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.
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.
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.
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
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.
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.
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.”