By Torie Jean
Editor’s Note: The Endometriosis Foundation of Houston has invited guest bloggers to share their work, expert opinions, and thoughts with our endo community. Houston author Torie Jean contemplates the conflicting realities of living life with endometriosis.
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Anne of Green Gables and I are kindred spirits. Ever since I was little, I’ve lost myself in other
worlds, floating through life with a mind filled with fantastical stories. For me, that time before bed when my eyes shutter closed but I hadn’t quite made it to dreamland was hallowed ground ever since I learned about the magic of daydreams.
There, I’ve accepted more Oscars than Meryl Streep’s been nominated for. My acceptance
speech, of course, always eloquent, but humble. Surprised, but deserving—my portrayal of Audrey Hepburn? A classic. Though as a very tall blonde, hair and make-up probably got an
Oscar as well. I’ve made countless appearances on Late Night Talk Shows, mainly with Seth Meyers—because the Granite Stater in me is loyal to other Granite Staters even in my fantasies. We’d laugh and joke and I’d tell him how as a French-teacher in training his mother was actually my biggest role model.
Daydreams are my everything. I mean—as a fictional writer; I daydream as a living.
Which is why I found myself absolutely gutted in 2021, one year after my first surgery when I
was diagnosed with endo, that I closed my eyes and I directed my mind to the fantastical—and the “unbelievable never in a million years” thought I had was “I wake up and I’m not in pain.”
What would I do? My thoughts ran through so many mundane scenarios I had taken for granted earlier in my life. I’d go for a walk. I’d get my vertical back I had worked so hard for in high school as a volleyball player. I would eat as healthy as possible because I wouldn’t be in the grab what’s convenient so you can take your painkillers mode. I would go on a trip, with a miniscule amount of luggage, and even less anxiety about flaring as we went. I’d finally see what everyone was talking about regarding intimacy.
There was an entire world outside of the confines of my heating pad cable and I would go out and finally see it.
At the end of 2021 I was fortunate enough to have a second surgery, the kind where you’re
fingers crossed hopeful they find something disastrous to justify the my-body-is-a-torture-
chamber feeling, because you’re anxious after years of gaslighting that you are just a giant
weenie. But also, you want them to fix whatever it is. Surprise, much like everyone else who has gone before me, more shit was going down than they expected. My uterus had been trying to rupture. I navigated through an entire year with daily false labor pains. My mental reserves from just surviving were gone. And I had definitely lost my daydreams somewhere along the way.
Heck, it scared me to have any kind of goal or dream at all because I felt like endo had ripped away them all. (Hello master’s degree I’ve never used). Recovery went from a two-week thing to a six-week thing, and I lost myself in books, in Gene Kelly movies, in just life, hopeful that I’d finally have my life back after recovery.
During this time, I read a quote that changed how I navigated my “afterlife” completely.
“Don’t let the hard days win.”
It’s a quote from a fantasy novel by Sarah J. Maas called a Court of Mist and Fury. I keep it with me in my office, and it plays on repeat in my brain through the hard pain days, which still truthfully happen more than I hoped before surgery. I’ve had to learn to shift my expectations a bit, and accept perhaps, a reality in my own life, that I still fight to save others from.
Three years post-diagnosis, and two surgeries later, I’m in this new phase of my endo journey. One where I sometimes daydream that I wake up and there’s a cure for endo and I can say goodbye to it for good. But one where I never wish I didn’t have it at all, because the last three years (or the last 15 for that matter), for better or for worse, endo has shaped my life significantly. Some of my best friends have come into my life because of endo (one literally barreled into my DMs pre-first-surgery and was like “let’s talk about poop” and honestly, what’s a faster way to a girl’s heart than that?). I gave up my practical dream of being a French teacher, and traded it in for the impractical dream of being an author, because reading and writing under a heating pad in the comforts of my apartment were just about the only thing I had access to, and I’m so happy with large swaths of where I am.
But I still have days, well really one particular week, and a handful of surprise pain days, where endo likes, nay loves, to remind me I’m still chronically ill. And that transition the past few years has been big. I’ve had to accept that the disease has transformed my reality, I’ve had to accept that I got dealt a pretty nasty hand, and I’ve had to fight to make it a winning one. I don’t know. It’s weird, I guess, to have such a mix of feelings inside. To be thankful for where I am knowing where I’ve been, to be in love with life, and still angry at a medical system that let my body get this far, to mourn the millions of lives I could have lived but didn’t because of something outside of my control. But I’m learning that feeling all of those things, even at once, is valid.
Because life is messy and complicated even without a disease ravaging our body. Sometimes the worst things in our lives give us some of the best parts. But also—if it could not, and just chill TF out now, that’d be great, thanks.
And I’ve started closing my eyes and daydreaming again. Let myself have hope for the future. Because if the past few years have taught me anything, it’s that I’ve always got the fight in me (even if I’d rather be softly cocooned in the softest robe and fed chocolate chip cookies off a vine), it’s okay to admit something is hard, it’s okay to self-care and relent to the pain, to give my body grace, but the hard day will never defeat me completely. There’s still far too much beauty and love in the world for that. And I’m done letting it take more of me than it has to, I’m done letting it take my daydreams.
The new edition of Torie's book Finding Gene Kelly is out now.
Join us April 1 at Walking Stick Brewing Company for a discussion and book reading with Torie Jean and Tracey Lindeman, author of Bleed: Destroying Myths and Misogyny in Endometriosis Care. Books will be available for purchase at the event.
Bio
Torie Jean's favorite memory growing up is the way her Memere's fingers flew over the keys of her two-tier electric organ, playing songs like "Singin' in the Rain", "I've Got Rhythm", and "What a Wonderful World". Her undying love and affection for the magic and charm of Gene Kelly and Audrey Hepburn followed her from childhood, to a seventh grade book report on a Gene Kelly biography, to studying abroad in Paris and finding "the den of thinking men."
Photo courtesy of Torie Jean
Torie is married to her high school sweetheart and is blessed with the best gaggle of nieces and nephews she could ask for. She has had endometriosis for over half of her life now, and hopes to raise more awareness of the disease with her writing, while providing the happily ever afters people with endo deserve.