Tag: chronic illness

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especially because earlier this month an endometriosis specialist in the area was on the morning news, sharing outdated knowledge.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.

Joy in the Process

@friendwithendo posted a meme in the beginning of April that brought vague thoughts to the forefront of my mind. I’m embarrassed when I start sounding like I’m saying like back in the day, when I was a collegiate athlete. But my teen years were dedicated to the goal, then I was a Division I student athlete until 22. Shaking the mentality, or more specifically, the mentality that it’s not hard work if you’re not in pain, has been something I’ve grappled with while implementing the lifestyle changes that come with endometriosis.

Credit: Andrea Bell, Chicago, IL

How beautiful is that? Allow discovery and joy in your movement. In the momement. Despite pushing through daily pain with a smile, and doing things like causing a tibia stress fracture, I try to prove to myself that I’m not *weak* and have a high pain tolerance. Wuht?

I think of the line in Michael Downs’s The Greatest Show, “If people understood the full weight of the show they watched, they would be crushed.” Each day is a show I feel like I barely remember the lines to. I do not judge anyone else this harshly, I do not hold anyone else to this impossible, illogical standard. I don’t approach creating this way either. I consider myself a writer, exploring multiple genres, moving between fluid boundaries. Art isn’t limited to the page either. I look to multidiscliplinary artists like Lynne Price, Stephanie Barber, Jordannah Elizabeth, Amanda McCormick, and so many other incredible talents that transcend genre. Why am I not living like this when I’m moving? Is this impossible in running?

I tried something different when I ran the Charm City Run’s Sole of the City 10k earlier this month. A rigid personal best wasn’t on my mind. Since February, I had been on hormonal birth control and physically and mentally spiraling (I have stopped taking it and would like to say, if birth control helps you live the life you want, GOOD! Do you and you should not be limited in your access! It is not something I can tolerate. Yes, I am hard eye-rolling to all past and future individuals that say I should just get on birth control to make endometriosis go away. Read more here about how it is only a band-aid and not a long-term solution).

Even while struggling each day, I wanted to learn from the race. The course has a challenging hill during the final mile that broke me the previous year like the Baltimore Half Marathon broke my spirit in 2011. I’m looking at you, never-ending mile around Lake Montebello. I decided I wanted to negative split the Sole of the City, starting at an 8-minute mile pace that would be an effort but relaxed.

Dare I say the race was joyful? Despite the early spring humidity, the kind special to Baltimore where even your eyeballs are sweating, I was in relatively good spirits. It was probably the last time I wasn’t holding back tears or sobbing all weekend (I’m still looking at you, hormonal birth control). Reading Partners volunteers cheered at 26 points—one for each letter, yay, literacy!—an officer was singing for everyone at mile 2.5, which carried me to Charm City Run Fells Point blasting Kesha’s Timber around mile 3.5. Then I targeted someone a few paces in front that I had seen earlier in the race to bring me to the finish. 

Screenshot from my Garmin 235

My ability to hold pace was a pleasant surprise. As reference, when I’m not doubled-over from endometriosis and related symptoms, my tempo run pace is comfortably at a 7:20 per mile pace. Keeping a relaxed mind helped me hold the sustained moderate effort. I sort of approached the Charles Street 12 this way in September 2018, but if I’m being honest, I thought it was going to be a rare approach. I had excision surgery in April 2018 and I was cured, right? RIGHT?! Cue the reality of chronic illness.

I’m learning from the Baltimore Flow and incredible healthcare providers—shouts to Sustainability Wellness and Indigo Physiotherapy—to listen to my body. To look at it as more than something broken. To approach athletics how I approach creativity—with an eye for discovery. I have to be creative as I continue to chase a sub-20 minute 5k goal. I have to trust that when I feel well, the work will fall into place. While I’m not, there is a process and joy can exist in discovery.

Stay sweaty and glittery.

An Element of Control

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

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

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

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

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

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

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

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

Thanks for reading. Stay sweaty and glittery.

What is endometriosis?

I have been reading Ross Gay’s The Book of Delights, enjoying the energetic weaving path of his mind. How he sees the world and translates that on the page invigorates my love of the short essay. So does another book I loved in 2018, The Baltimore Book of the Dead by Marion Winik. The essayettes read like poems, therefore I was not surprised (rather, delighted) when I learned that Winik started the project as poems. Our boundaries are not as tight as we think.

In the spirit of boundary-less writing, I have been writing flash essays (paragraphs?) about endometriosis, meant to distill the daily struggles. Reading a symptom list has never been enough to explain living with a chronic illness. For a medical definition, read conflicting explanations of endometriosis online (because there is no cure and the cause is unknown). I’m here to share a piece of what it’s like to live with endometriosis.

So what is endometriosis? It is a disease that can be treated with watchful waiting. It is endometrial tissue ignoring boundaries and doctors unable to explain the migration. I am being a poet over here. This is a current definition from one of the top surgeons in the United States. The problem is, very little is known because there has been little listening and study. You’re told symptoms will go away with menopause. You’re told take the pill to pause your symptoms. You’re told try Lupron to shut down your hormones. You’re told take an antidepressant to shut up.

Endometriosis is rethinking simple pleasures. No conferring with friends until 2a.m., eating pumpkin muffins, going to a restaurant without meticulously studying the menu and looking up ingredients without fear of bodily revolt.

Endometriosis is taking four Advil before work telling yourself this is fine. You’ve been prescribed 800 milligrams of Motrin to survive these days in the past.

Endometriosis is pulling over sobbing in the middle of a 12 hour car ride because your worst period day fell during planned travel. It was already three days delayed from travel stress. You need to change your tampon every hour and a half and you’re in so much pain radiating from your pelvis through your legs that you can’t concentrate. Every bathroom in North Carolina has been filthy, lacked toilet paper to clean up the bloody mess, and you feel like you failed your partner because you cannot contribute to the driving.

Endometriosis is journaling as much as possible because on many days you’re in too much pain to think past clichés. You’re afraid the energy you trying to smile through small talk will take away from your ability to remember.

Endometriosis is taking up circus arts. The callouses on your hands, bruises in your elbows, and hardened bumps on the top of your feet are leading to something. That physical pain means you’ll do something dazzling, like hang upside down from the tops of your feet with a serene smile. As Zadie Smith says in Swing Time, “But elegance attracted me. I liked the way it hid pain.”

Endometriosis is wondering why there is so little research unrelated to fertility. How can you think about fertility when you can barely make it through the day? Why do women’s bodies only matter if the concern is about children? Cut to every horror movie where a woman finds her strength because she is pregnant. What about the rest of us? Watch I Spit On Your Grave (1978) and A Girl Walks Home Alone at Night (2014) again.

Endometriosis is trying anti-inflammatory diets, then eating dairy and gluten for a week because it’s the holidays. You have the worst pain since before excision surgery and decide to recommit to following the diet. You add weekly acupuncture, hip stretches, and syncing your running cycle with your pain cycle because despite all this exhaustion, you are still an intensely competitive athlete looking for a thrill.

Endometriosis is longing for quiet time in the morning. Let me rephrase. It is longing to not have to think about rationing time throughout the day. Karen Lord wrote an incredible long essay about the day to day pain, stress, and impact as someone working in the health & fitness field. She digs into the frustration, “I’m lucky that after all the tests are run in the ER they tell me I’m the healthiest person they’ve ever seen. I mean except for this, right? Right.” Like the endometrial tissue, your symptoms continue to color every moment.

I hope this gives you some insight into the day-to-day of living with endometriosis. Stay sweaty and glittery.

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.