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especially because earlier this month an endometriosis specialist in the area was on the morning news, sharing outdated knowledge.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