There are times when we have all very publicly declared that we are going to do a Thing, and after The Thing friends and family want to know how The Thing went. But what if The Thing did not go as planned? What if the details on how The Thing went sideways just sounds like an elaborate excuse for bad planning and execution?
How did The Thing go...? Good.....ish...? Sometimes the details about how The Thing went are kind of gruesome, and you need to give so much backstory that an inattentive listener might think you're making excuses for being a deadbeat and not following through on The Thing you were such a braggart about on social media. Hashtag: ThisDamnThing.
April 2018 my husband and I took a trip to Arizona with the sole purpose of hiking the Grand Canyon from Rim to Rim to Rim, 51 miles, all in one go. It was our Thing. For weeks after our Rim to Rim to Rim hike I was hounded by questions. How did it go? Was it hot? Did you make it? How long did it take? Did you get heat stroke? Was it worth it? How much water did you drink? You got heat stroke didn't you? Why would you do this? Example:
Friend: How was the CANYON?!!
Me: Well, we made it. We didn't need a helicopter.
Friend: Feet got sore, huh?! Did you need to train more? Got heat sick didn't you? DID YOU TAKE PICTURES?
Me: No, my uterus tried to kill me.
Friend: *Confused face*
Me: Anyway.... how are you?
How do you summarize what it's like to train for years for a goal, to then have your body completely fail you because of a chronic disease? And not one of those cool boutiquey chronic diseases that gets a hashtag and video challenge campaign, or one of the mainstream diseases that gets research funding and a signature color, but one that folks don't really want to hear about because it deals with lady parts. So yeah. Sure. My feet got sore, the Canyon was great, I'd love to go back, and it took longer than expected. I also got a total hysterectomy one month after the Canyon because of what happened there- info like that tends to be a record scratcher.
The Grand Canyon and I have a delightful, and painful history. I've done hikes all the way to the Colorado river, rafted down the Colorado, got married on the south rim, and hiked from the North Rim down to the river, and back up the South Rim in one day (known as a Rim to Rim). This time, my husband and I wanted to do a Rim to Rim to Rim hike (R3) in under 24 hours; because why not. Hiking continuously for 45-50 miles (depending on your routing and GPS accuracy) is just a walk in the park, and it's not like you can take your cartilage with you when you die. Use it while you've got it, and use it doing epic shit.
My husband and I have gotten ourselves mentally and physically prepared for this hike on three different occasions. First time we got about two months into training and I got a new job and felt it wouldn't be the best idea to take off for a couple weeks just after starting, so we canceled. Second time we got about two months into training then Damion got hurt on the job and needed knee surgery; so that time was clearly canceled. This third time we trained solidly for three months. Preparation began in earnest.
Workouts at home doing laps on the stairs
Hikes every weekend at a local park with the most topography, ramping up our distances every week in 5 mile loop increments until we reached 26 miles
Average hiking pace and calorie burn per mile calculated
Spreadsheets were generated based on our average pacing so we could estimate waypoint arrival time. Spreadsheets, people.
Appointments were made with various doctors to mitigate our various accumulated aches and pains—> for me I specifically went to my doctor to try and work up a plan to mitigate my endo
Tickets purchased, hotel reserved, vacation scheduled
Family was notified on timing and when to expect to hear from us
It was go time.
Watch part one of our trek below:
See how red my face is around minute 7? I'm looking, rough. And it's only about mile 11/51 or so here. The weather was perfect, our timing was on the nose, our gear was behaving as tested, and I felt like complete garbage. Something was decidedly wrong in my body and I was being hit by waves of nausea and panic- how in the hell was I supposed to get through this if I was falling apart at the easiest part? Existential life crisis crying at various rocks followed, where my poor husband was left dumbstruck as to what the fuck was going on with me. By the mileage, we were still in our normal hiking warm up miles. This was cake, yet there I was, doubled over and dry heaving every half mile or so.
Then he put it together because I couldn't think clearly- I was in the middle of an endometriosis flare up in the middle of the Grand Canyon.
1 in 10
Do you know 10 women? Sure you do, unless your level of introversion is more on the creepy bunker dweller side of the scale, you're probably even seen 10 whole women today. Well, at least one of those 10 women you interacted with has endometriosis. Haven't heard about it? I know, apparently my doctors I've had in the past haven't either. This is a debilitating disease... in the inside lady parts- which is why we women folk have had some social shame talking about it, and that's bullshit. I'm outing it. Endometriosis is a painful, life ruiner.
More people have endometriosis than those with diabetes. Maybe we should get Wilford Brimley to do a commercial for us and raise awareness.
But I digress. The thing is, endometriosis has been trying to ruin my life, and thus my outdoor life, ever since I was a young adolescent. I remember being 12 years old and at a summer camp for junior naturalists (Was my hair in a scrunchie? Yes. Was I a know it all about fossil identification? Yes. Did I wear tennis shoes with heavy hiking socks? Yes. Leave me alone.) and feeling totally broken while on a hike; waves of nausea, back aches, pulsing cramps radiating down my legs. I loved hikes! Why was I feeling so sick? Oh yeah. Period time. Time to quietly panic about not walking all hunched over with cramps and getting to a bathroom to mitigate the situation. For years I thought this was normal, and all the women in my family suffered similarly.
Rinse. Lather. Cry. Bloat. Ache. Repeat. For fucking years.
Gradually the pain I experienced during my period started taking ownership of more days, more of my time was devoted to pain stress. I started aching and feeling fatigued a couple days before my cycle, during, then a couple more day after. Ok. Manageable I guess, according to my doctors this was all normal. I eventually got to the point where I didn't really have anymore pain free days in the month, no break. Meanwhile, I was dragging myself through graduate school and seeing my doctors at least once a month for one issue or another; and going completely undiagnosed. I went through various misdiagnosis that caused all sorts of physical and mental distress; maybe I had some chronic pain disorder? Lupus? Chronic fatigue? RA? None of those checked out in the end. Then one terrible student health clinic doctor decided that I must be riddled with STD's (despite having no other symptoms and repeatedly testing negative across the spectrum), and needed every strong antibiotic, which made me understandably, much sicker. Finally my doctor grew so exasperated with me that he just wrote me a script for a low dose antibiotic (seriously) and Oxycodone to take as needed for pain.
That turned out to be the semester I don't really remember, and what turned out to be the deciding semester to quit my PhD program and to work fulltime outside of academia. I would be lying if the thought of having better healthcare wasn't a consideration.
Before leaving for an internship where I would be around operating drilling rigs and up on high platforms, I knew I needed to get off the narcotics. I thankfully did not experience the addiction so many chronic pain sufferers do, and demanded to be sent to a "specialist" to find out what was wrong. I was almost immediately diagnosed (incorrectly) with Polycystic Ovarian Syndrome (PCOS) by my new doctor, sent home with a new script of birth control to help manage my symptoms. As I would soon discover- Birth Control would become the garbage can prescription for chronic pain and an ineffective band aid for my endo.
For those counting along, we are now on at least year 10 of not having a correct diagnosis.
It took a couple more years, ER visits, and useless prescriptions to finally get me to the right doctor that actually was able to properly diagnose me with endometriosis at 28 after a laparoscopy.
“You don’t die from Endometriosis, but you feel like you are” - Dr. John Dulemba
While suffering in the canyon I was now 32, 2 surgeries in to my endo struggle, and experiencing a flare up at a dangerous time. I couldn’t really go home and curl up with a heating pad and watch tv and wait for it to pass. What was already supposed to be a difficult hike turned into something to endure and survive. My wonderful husband did his best to keep me motivated and moving, and I was hiking at an absolute snails pace, each step jarring each ovary and radiating pain down my legs. I collapsed on the trail numerous times just trying to catch my breath while hikers that appeared far less prepared than me passed me by with looks of “what are you doing here, you newb?”. I felt so insulted and degraded being judged on the trail by others- when you have an invisible illness no one can see the real visible evidence of your illness. I just looked like an under prepared, out of shape, panicking hiker who bit off more than she could chew.
We arrived to the north rim hours behind schedule. There was serious talk of leaving me on the north rim with the emergency bivvy sack to stay warm, food, water, and medication until my husband could cross the canyon - alone- and then contact the NPS backcountry office and request assistance from the rangers, then drive three hours from the south rim to the north rim to collect me, and drive 3 more hours back to the south rim. Mind you, the north rim wasn’t open yet. The north rim roads are only seasonally open and we were there 2 weeks shy of the official opening day. I convinced my husband that what I really needed was to try and sleep for 30 minutes in the sun after eating some food. If I still felt too awful to move after that break, then I would stay.
I napped, puked, rallied, ate some more food, and set off again.
What followed what the most enjoyable part of the whole hike- the descent down the north rim was some of the easiest hiking I was able to get through. My medications were kicking in, I was keeping some food down, and I felt more like myself.
Night fell. It was beautiful and howling winds whipped through the canyon. A full moon reflected like spot lights on the inner canyon walls- then the wheels fell completely off during the ascent up Bright Angel Trail. Only 5 more miles to go until safety and rest, but this ascent left me hiking at a pace of 1/4-1/2 mile an hour at the worst, throwing up constantly. I shuffled at best. My husband took my pack for awhile, hoping it would help. I was hot, then cold, nauseous, then thirsty, but always the pain. The endo pain never stopped.
Finally sunrise and the final ascent. 51 miles in 24 hours. It was too many hours and well over our goal- and I had experienced a major nutritional flip-flop because of my endo nausea. I had drifted so far off my trail nutrition plan I had watered out my system, making me even sicker. Endo had, in my mind, robbed me of this victory dance of finishing the R3. I had made it, yes, but I survived it. I didn’t feel like I had won.
Watch me puke! Yay!
Now what indeed. It’s been almost a year since the canyon and this episode- and I’m not really sure where to go from here. I had a total hysterectomy 1 month after the canyon- and it has helped some with certain types of pain. Hysterectomies don’t cure endo. It can, and does, come back. It has. I slowly recovered from this surgery, and once I “got better” the endo had been spreading. I’m currently in the middle of a month of being in pain every day. This isn’t normal. I have one more bullet in the treatment chamber, but then that’s it. There’s nothing left for me if that surgery doesn’t help.
Tell me why 1 in 10 women have to deal with this. This is an absolute medical crisis and it’s not being discussed nearly enough. The stigma needs to go away and there should be no shame in talking about pain- no matter where it’s originating from.
I don’t know that this post has a tidy wrap up thought or comment, except that living with endo is a lot like my entire R3 experience. You’re just trying to get through, and things that should be joyous and exciting more often than not turn into things to endure and survive, and that’s no way to live.