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especially because earlier this month an endometriosis specialist in the area was on the morning news, sharing outdated knowledge.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