Changing Pain

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 worseWhat 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):

Stay sweaty and glittery.

Something to Know

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:

  • The Nickel Boys, Colson Whitehead
  • Music for Wartime, Rebecca Makkai
  • Felon, Reginald Dwayne Betts
  • Queenie, Candice Carty-Williams

Stay sweaty and glittery.