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.