I have good news and bad news. The good news list is short, and sadly much of the good news is being chaperoned by bad news. It’s as if, left to its own devices, the good news would somehow become too exuberant, too ecstatic, drunk on its own juiciness and start making out with wild abandon with the entire glee club and the whole swim team, at the same time. I’ll give you the bad news first. It gives the good news context.
I reflect back to where I was a year ago, heading out to my road trip, enthusiastic, open, fearless. I was in great shape, riding strong and my yoga practice was solid. I wanted to spend an extended period of time (longer than your usual vacation) near and with the things most important to me: trail access, winter activities, quiet home life, fresh air, community, good eating. I found it very unexpectedly in Bend, Oregon, along with an unmistakable sense of belonging. I broke up with Fruita when I fell in love with Bend.
Enter 2010: Illness. Injury. Chronic fatigue. Dizziness. Foggy thinking, crappy mood and virtually no exercise. Finally, after weeks of bleeding—hemorrhaging for weeks, actually—I got the right doctor and the right tests. Results: not only do I have endometriosis which I’ve managed to live with for over 20 years, I now have fibroids, polyps and adenomyosis. The combination rendered me incapable of much beyond my normal teaching schedule and an occasional bike ride here and there. In phenomenal pain, exhausted beyond comprehension, and anemic to boot, the solution was clear: hysterectomy. It’s radical, it’s invasive, it’s permanent. But what was far more disturbing to me was this:
I couldn’t even rally for a bike ride if I wanted to. And trust me, I wanted to.
I managed a ride maybe once a week, purely on willpower and the insistence of my dear friends. But they mostly felt like endurance competition. The 4 mile road ride up to the Sandy Ridge drop may as well have been the Leadville 100. Being so anemic for so long left me spent, wasted before I even swung a leg over the bike. I’m used to doing rides that hurt some of the time, but now most of the rides hurt most of the time. Often I cried my way up the hill. Determination was all I had, and even that was faltering.
My yoga practice became a restorative practice—basically rolling around on the floor desperately trying to ignore the pain. Meditation? Always a cornerstone of practice for me, but so much of my “meditation practice” comes on the bike, or rock climbing. Sitting alone in my living room, watching my breath move in and out, observing thoughts, feelings, sensations… Everything was tinged with suffering. This was not the radiant, luminescent yoga the glossy magazines would promise you. This was as real as it gets. This was the lowest of lows.
(This is where the good news starts.)
A uterus is a totally optional organ. (See? Good news!) Everyone—and I mean everyone— can live without a uterus. Millions of men do it every day! I’m not emotionally attached to it. It’s just a baby maker and I’ve never wanted children. I like to spend my time unemcumbered by that sort of responsibility, preferring to have time to ride bikes, practice yoga, dance, hike, eat at normal times, have sex without getting busted by the kids walking in and so on. I’m told by many parents that’s a selfish choice, but I say having kids without really wanting them or having lots of kids because you think it’s some sort of divinely ordained purpose is selfish. I’ve believed since I was a young girl that the world would get on just fine without my genetic contribution to the survival of the human race. After all, millions of women have bus loads of kids every day because of the Catholic church. So, at the tender age of 24 I had a tubal ligation, so certain was I that I was never going to want to have kids.
I kept my uterus even though I wasn’t going to have kids, even though I have endometriosis because I didn’t want to take synthetic hormones all throughout my 20s and 30s. I’m vehemently anti-pharmaceutical intervention. As a result I’ve managed a difficult but tolerable relationship with my uterus. Crippling pain is the main hallmark of endometriosis along with occasionally heavy bleeding in between cycles. All the usual problems that healthy women face with their monthly cycle are exaggerated with endo. But one of the biggest problems is when you live with something like endometriosis you get used to feeling terrible too much of the time. What becomes “normal” for you is anything but.
“Normal.” It’s a very subjective thing, really. What had become normal for me was pretty messed up. So I missed a lot of the signs last summer and fall—signs that would have told me I was slowly becoming anemic as a result of all these complications. One of the most poignant examples of how effed up my version of “normal” had become is just a few years back when I was so passionately into time trialing. I still held my goal of getting to Nationals to compete in the women’s TT champs. My first TT of the season I pulled a mediocre time at best. I’d raced “by the numbers” (on my heart rate monitor) and knew I’d held too much in reserve. I should have won the race. I was determined to improve my time the next week by chopping (not shaving) 3 minutes off my time. The next race was day two of my cycle. I forgot my heart rate monitor, bled through three tampons in less than three hours, had a horrible headache and the deep, gut-wrenching abdominal and back pains that are so severe I’d break out in a cold sweat. I could have wrung blood from my chamois and I was so distraught that I missed my start time. I started two minutes back, caught my minute-woman, passed a few more, and bested my previous time by 2:39, for a second place finish despite my late start. Had I not been penalized with the late start time added I’d have won the race. I had the satisfaction of knowing I was the fastest woman on the road, despite my infirmities.
I could have come in DFL and it wouldn’t have mattered. Just showing up was the victory. I’ve never been one of those people who could stand on the able-bodied side of the fence and laugh at the poor suckers who show up to sporting events with bumper stickered cars and tee-shirts proclaiming that JUST SHOWING UP IS HALF THE BATTLE. Sometimes it’s the whole battle. Normal for me had become feeling like bloody hell on a fairly constant basis, bleeding half to death, and still showing up to do my thing.
: For the past few months I have been at an all time low, physically, mentally, emotionally. I’ve doubted my faith in yoga’s healing powers (of course I didn’t know exactly what I was dealing with). Additionally I had a book to finish, the stress of which was compounded by the total loss of the contents of one entire hard drive–ironically–during backup! A book on how yoga can improve your health! Haha hee hee ho ho! Oh, oh… it’s making my sides hurt! Make it stop!
Not only did I finish the first book, Essential Yoga: A Simple Practice For A Busy Life, but I went on to produce a second title. BikeYoga: A Simple Practice to Tune-Up Your Mind, Body, and Spirit was ready in ti
I guess that’s the good news in a nutshell. Soon I’ll be rid of this ridiculous problem organ of mine and back on a path to health and vitality. I’ve discovered my dreams and goals of integrating my passions for yoga and mountain biking haven’t truly been derailed as much as they’ve just been shuttled to a maintenance yard for a bit.
Those of us with endometriosis shorten it to “endo” for expediency’s sake. It strikes me as funny because in mountain biking there’s a type of crash that’s referred to as an “endo”. This young lad had the grace to show us firsthand and in slow motion, how to execute a proper endo:
While I will attest that there is nothing funny about having a janky uterus and the problems that go with endometriosis, I think perhaps the best way to deal with it is the same way Endo Dude did: you laugh at the fact that life handed you a difficult body, a proverbial wall o’ rock to deal with instead of a healthy body, and then your brush yourself off and get back on your bike or whatever floats your boat.
I know many women suffering from the awfulness of endometriosis and other complicated “female health issues”. Mostly, we suffer in silence. Suffering in silence is awful. I have found it especially hard to suffer in silence as a “health professional” because in addition to being betrayed by your body—even though you take damn good care of it—because your work is public the expectation is your should be somehow above it, always cheerful and positive and upbeat. Well, that’s bullshit. As one of my teachers says, sometimes ecstacy is your practice, sometimes suffering is, either way the work of yoga is to be present with what is. Yoga is about being really present, not abut being really perfect.
Patanjali, the first yoga teacher to codify yoga and give us our very first written instruction on skillfull living through yoga, was very clear about being real, so I’m just following the lead of thousands of years of tradition. To look at what’s really happening: This is the heart of yoga’s teachings. The sanskrit term for it is vidya. It means clear, undistorted vision. So while I agree it is important not to wallow in self-pity and sorrow, it is far more harmful to bottle up genuine feelings of sadness, shame, fear, doubt, an the inevitable blows to self worth that come from long-term illness or disability.
I don’t know if anyone is reading this blog anymore (especially since I’m barely writing it anymore) or even how many women ever did, but as always, I welcome your comments and even better–invite you to share your story with others. Especially women riders who have had similar health challenges. We shouldn’t suffer alone, in silence. And no man is going to understand our plight. Hell, you mention the word “hysterectomy” to a guy and their eyes glaze over while mumbling something about “not really sure… what?… something… women’s stuff…” (Pssst… guys! It’s not contagious, okay?)
After all, besides being a weapon of mass distraction, this internet thingy might just help us stay connected and sane when it feels like our lives are falling apart. Endometriosis and fibroids aren’t cancer—they won’t kill you. Not directly, anyway. They are considered “quality of life” diseases. I suspect the physicians who coined the term “quality of life disease” did not live in near constant or daily pain.They are difficult to manage diseases that slowly drain you of energy, passion, and ability, bringing one to a point where one just spins their wheels to stay awake, never mind riding bikes or whatever your passion is.
Oh! I nearly forgot. I suppose the best news is that I’m still here, still passionate (albeit incapable of expressing that very well), still marching forward, and still—and always—grateful for this thing we call “life”. Sometimes that gratitude is tinged with great suffering and an unladylike amount of swearing, but all in all, it’s been a good life, made better by sharing it with others. It’s my intention that sharing these somewhat gruesome details will help another who feels like they suffer alone to realize: you don’t.
Never, ever let go of your passion. You might have to put it in the maintenance yard for a spell, and focus on something else, but passion itself is reason enough to hold on… loosely.
If you have ACTUALLY READ THIS FAR, thanks! I’m not really feeling very self-promotional at the moment, but my business advisor (aka Boss Uma) says I should do it anyway because it really is a fine practice manual, so here goes:
Order my yoga book. Yo. It’s actually pretty good. At least that’s what the folks who have bought one are telling me. Who am I to argue? After all, I teach them that authentic expressions and vidya are part of the practice, so I’m pretty sure they’d tell me it sucked if it did.
Or at least leave a comment or drop me a note if you want to share your story with others. You know who you are.
