the nitty gritty (part one: peace corps to portland)

Many people have no idea what Ulcerative Colitis is, or if they do, they know that it's a bad thing, similar to Crohn's Disease.

The clinical definition of Ulcerative Colitis is posted in the top right corner of my blog. It is there because we all need to be able to define things in a succinct manner. However, there is no easy way to briefly describe the disease that has ruled my life for years now.

I want to get down to the nitty gritty, to write out all of the embarrassing, terrifying and difficult experiences I've had, because Ulcerative Colitis does not live within the bounds of its neat little definition, "a bowel disease characterized by inflammation with ulcer formation in the lining of the colon." It is so much more than that.

Two years ago, I had just returned from the Peace Corps, when this "flare up" of Ulcerative Colitis (UC) started. Flare-up's are common for people who have UC, and while its cause is unknown, symptoms may be brought on by stress, changes in diet, or a course of antibiotics. At the time of this flare, I was experiencing stress and change in spades (and had taken a lot of antibiotics towards the end of my time in Madagascar).

It started with small streaks of blood in the stool. Then having to go to the bathroom more often. Then more bloody stools, and sometimes just blood clots or clumps with no stool. Then feeling like I had to go, but nothing was there but blood & mucus. 

I thought I could manage the flare well enough by putting myself on a short course of Prednisone, a steroid frequently used for treating inflammation. All this managed to do was provide me with the side effects of being on steroids: insomnia, accelerated heart beat, feelings of aggression and rage, and weight gain. It had no effect on my bowels whatsoever. I kept everything to myself mostly, as I didn't really want to worry anyone.

Next came a move to Washington, DC to start a new job doing trail work with urban teenagers. I was going to the bathroom upwards of 15-20 times a day, with loose, mucusy and/or bloody stools as well as experiencing "night sweats" and sometimes a low grade fever. My joints would ache, as though I had arthritis, which is a common sign of increasing inflammation brought on by disease. I was not on any medications (I'd run out of the spare Prednisone prescription I'd been taking) and hadn't told anyone how bad it had gotten.

There were a few times I couldn't make it to the bathroom, and would end up shitting myself. Luckily, I also worked outdoors, where I could run off at a moment's notice. Of all the symptoms one experiences with UC, the uncontrollable urge to evacuate the bowels at a moment's notice is among the most unbearable and agonizing.

I remember once pulling over on the side of the road just outside of our nation's capitol, in the van I drove for work, jumping into the backseat, and pooping on the only thing I could find in those few seconds remaining: a paper plate.

A month later, at a trail work training, I went to an Urgent Care clinic because I was feeling weak and feverish constantly. The doctor who saw me insisted I see a Gastrointestinal (GI) Specialist as soon as possible. I explained that without insurance, it would be difficult to pay for any treatment out of pocket. She was extremely concerned as I was having bloody stools 20-30 times a day. I brushed her off, though she begrudgingly prescribed another course of steroids and some UC-specific medication called Asacol.

The medications did nothing for me, and unbelievably, my symptoms worsened as the summer wore on. I was sweating through my sheets nightly and becoming increasingly aggressive from the steroids, all while working a very physically demanding job. The Prednisone would allow me to push wheelbarrow after wheelbarrow full of rocks during the day, and then in the afternoons I'd collapse in exhaustion as my body suffered from systemic inflammation. I wasn't used to this; I'd worked physically challenging jobs for years: wildland firefighter, Alaskan river guide, backpacking guide. I was supposed to be able to set my mind to anything and my body would obey.

One afternoon after work, I was laying on the couch, barely able to walk and had already gone to the bathroom 20 times that day. The inner dialogue of fear, anxiety and exhaustion was undeniable; I finally admitted to myself I was going to have to go to the Emergency Room. Tearfully, I called my friends and family: how was I going to pay for this out of pocket?!  But I had to go, and that was that.

I was hospitalized for two days, in which they put me on an extremely high dose of IV steroids; I started another round of UC medication, as well as a medicated enema I was supposed to insert nightly. None of these did anything for me, but I was feeling on high from being so jacked up on steroids. I went to a GI specialist, who looked at my colon by performing a Flexible Sigmoidoscopy (read: sticking a camera up your ass in the most excruciatingly painful procedure you can ever imagine). He said I should immediately start on a treatment plan, but I countered that I was moving to Oregon in a couple months and would deal with it then.

But first, I took a month-long job doing trail work in the Grand Canyon. Pooping 15 times a day in a discreet manner while working in an exposed, rocky canyon: now that takes some doing. At night, under an endless canopy of desert stars, I would wake up in my tent and rush to dig a hole as quickly as humanly possible. During the days, while doing some of the most exhausting physical work I have ever done, I would try to hold it in as best as I could, before desperately running off behind a boulder to relieve myself. Nothing but mucus and blood clots.

Still, I was quiet about it all, putting on a strong front and still, I kept on moving. I kept on pushing. I kept on thinking I could somehow will myself to get better. Traveling around the country, going to friends' weddings, fearful of when it would hit me, where I'd run to; going on road trips and frantically pulling off the side of the highway to poop on the side of the road; starting to realize my body was breaking down and I couldn't make it stop. I didn't know what to do.

I landed in Portland, Oregon with a couple hundred bucks and no job, no insurance. I went to another GI specialist, who urged me to come into their clinic for a colonoscopy, and get some treatment. I was still on Prednisone (my body had become both dependent and resistant to the steroid- I couldn't get off it without symptoms worsening, but it wasn't getting the inflammation down at all). Riding a roller coaster ride of side effects and spending my nights in a feverish world of bloody, endless poop, I knew it was time to make a change.

naming shame: how ordinary courage was born.

I have been sick with Ulcerative Colitis for almost two years. And nearly two years ago, I returned from the Peace Corps, where I lived in a tiny fishing village on the island nation of Madagascar. This blog originally followed my travels, trials & tribulations throughout my sojourn there.

When deciding whether or not to continue on where the sojourn left off, I realized that it felt most authentic to transition from the years I spent writing in Madagascar to the experiences I am having right now. Life is not compartmentalized into neat little boxes and blogs. I want it all to be here, in one space.

The name of this blog, "ordinary courage," came out of recent work I have been doing exploring shame, based on curriculum developed by Brene Brown, a shame researcher. Several lines she wrote in her book, "I Thought It Was Just Me (But It Isn't)," struck me with such poignancy that I knew I needed to return to writing: "Three items are critical to the healing of shame: ordinary courage, compassion and connection. Ordinary courage is to speak your mind with your heart- to tell your story. It is hard to practice courage in a culture where we fear not belonging. Yet the only way to get out of shame is to share our stories."

My intention is to share the shame I experience daily while living with Ulcerative Colitis, and in doing so, let go of some of the embarrassment, humiliation and self-hatred I have because of it. I want to deepen compassion and empathy with those in my life, who have either seen me through these difficulties or have never known about them before, and also with strangers who stumble across this blog but are struggling in much the same way I do.

Having UC means a lot of things, and most of them are not pretty or easy to talk about. Some of them are downright disgusting. The very nature of this disease is the perfect breeding ground for things hidden and unseen.

My task here is to write with courage, and explore those ugly parts of myself I have never cast into the light.

what 4/20 means to me.

For many people, April 20th has a certain connotation: the date is synonymous with the consumption of cannabis. Thanks to this counterculture holiday, a vast cross-sector of our society are afforded an annual excuse to spend the entire day solely devoted to getting stoned. Even beyond that, every day at 4:19 pm, scores of college students and young professionals ask if you've "got a minute" to light up and get high. No matter your personal beliefs about marijuana, there's no denying the long-standing association of 4/20 with giddiness and euphoria.

But for me, April 20th holds a much different meaning, and has for the past eleven years. It marks the anniversary of the night I was raped. Unfortunately, the date of such an event happens to fall upon an oft-mentioned holiday of sorts, and one that is usually brought up with a cheeky smirk.

Mentioning the date of a traumatic life event can be troubling enough for any of us. The anniversary of a parent's death, for example, might prompt us to pour over old photos, solemnly visit a tombstone or write in a well-worn journal. Every year the pain returns, that old, brilliant ache, and what we choose to do with it ultimately shapes and defines our lives.

As such, April 20th's meaning has evolved over time for me. Initially, it simply marked a seemingly insurmountable feat: I had survived. After that, I went through a number of years where 4/20 was spent vacillating between two extremes, either completely numbing myself or languishing in a hyper-emotional state of remembrance. And finally, in more recent years, I came to see 4/20 as an opportunity, not to be mired down with sadness or heaviness, but to consciously and with grace, make the day about the resiliency of the human spirit. To even celebrate myself, as cliche as that may seem.

It was quite a subtle joy then that one year ago today, by sheer happenstance, April 20th became the day I officially completed my Peace Corps service.

But what does that even mean anyway- for someone to "complete Peace Corps service?" The phrase makes it sound so pretty and perfect, like closing the cellar door or unlacing your shoes. It is none of those things. It is messy, confusing, scary, exciting, heartbreaking, absurd. It is squeezing your best friend's hand in the dark one last time, under stars and mango trees, and turning away silently, without words, because there are none. It is a final trip to the water pump, and children still staring in awe. It is the last cup of coffee in the smoky seaside shack, and the final soft conversation with your big, beautiful mama, the one who fed you day after day for years.

April 20th is being so excited to leave, to begin, to see all the loved ones again, and then not knowing how. It is not being here, not being there.

Last year on this date, I longed to write about how April 20th had come to mean something much more empowering and expansive than it ever had over the past decade. Instead, I found myself so wrapped up in the experience of leaving, so overwhelmed by the process, that I struggled to articulate myself in any manner. Not only that, but after more than two years in Madagascar, my English was not so good.

Here's an excerpt from my journal, written on one of the last nights in my village, which illustrates where my mind was at and how impeccable my writing skills had become:

"Looks to be threatening rain. And my sandal's broken. And last night was so strange. After Sophia came over, we tried to get happy but as she said, a fety [party] bye-bye cannot make someone happy."

The past few weeks leading up to April 20, 2013 have been spent re-visiting the life I left behind in Madagascar: closely examining photos, ruminating over old blog posts, watching videos of sorely-missed loved ones, listening repeatedly to my favorite Malagasy music, reading journal entries written in broken scribble, even speaking Malagasy to myself or to anyone that will listen.

With all the memories has come a renewed sense of the things I gained from my life there: quiet, equanimity, slowing down for the sake of slowing down. I am grateful that April 20th now means these things to me, and so much more.

the end of summer.

As the end of summer approaches and I begin a new chapter of my post-Peace Corps experience (returning briefly to work at the Grand Canyon in Arizona), all I can say is: this has been the best summer of my life.

Every day, every year gets better, filled with more opportunities to be grateful for all of life's goodnesses.  Maybe this is just my perspective after living in one of the poorest countries on earth for two years, but I can't help it; I am still in awe at how great we have it in America. When I first returned to the US, my father & I used to joke about my newfound sense of wonder: every few minutes it seemed, you could hear me exclaim, "This place has EVERYthing!!!" That feeling, though starting to wane under complacency, is still strong in me.

This summer, I worked with inner-city teenagers from Washington, DC. It was a very hard job, not so much because it was physically challenging or difficult to work with that rebellious age group, but because personally, I struggled with the sense of entitlement that many young people here have about almost everything. We'd buy them treats at the store and they'd complain it was the wrong flavor. They couldn't drink the water because it didn't have ice in it. The van was hot because the air conditioning had only just been turned on. I didn't want to sound like the old hag on her soapbox whose every sentence starts with, "Well, in Africa kids don't have..." or "If we were in Africa right now..." So most of the time, I'd grin and bear it... and try to take in the lesson of appreciation for all the things we've been blessed to have in this country. This place has everything!

I've been away from Madagascar for four months. Some things that still amaze me:

- we can eat anything we want at virtually any time of day or year
- we try to take in fewer calories than we consume, and often fail at that because there is SO much food being sold to us everywhere
- we have hot water, refrigeration and ice inside our homes
- no one stares at me, cares that I'm white, or feels compelled to talk about what I'm wearing, how my body looks or what I bought at the store that day
- lines at the store make sense; there is order versus chaos in public settings, on the road, at the post office, in the bank and at the market
- people have manners: no more picking noses, blowing snot rockets, or popping out a boob to breastfeed at any given time; personal space is respected and people apologize if they bump into you
- we have operational, efficient modes of public transportation
- everyone speaks English (this has been a puzzling surprise for me... I never expected to still be amazed after all this time when hearing English being spoken. I often turn my head in shock while walking down the sidewalk or sitting at a restaurant, thinking: they're speaking English!)

All I can say is, life is good. And it's good to recognize that.

I have just returned to Arizona after a five-year hiatus, having lived here off and on for over seven years. This morning, in my friend's backyard, which sits against the red rocks spires of Sedona and is surrounded by Sycamore trees, I wrote in my journal:

"Though the struggles of always packing and moving and being uprooted are surely tiresome, I wouldn't trade the sense of renewed awe I have right now at smelling the Juniper-scented air and seeing Oak Creek Canyon's rippling waters this morning at sunrise for anything.

So many memories come flooding back in just from the smell of the air alone. I forgot about this place, forgot about what it's like to be inspired by landscape, to go play for the sake of playing, to use legs-arms-back to catapult heart-mind-spirit to a freer, more loosely-tangled space.

I forgot about biscuits & gravy at Macy's Coffee Shop while the train clangs by, forgot about the round curving earth endlessly expanding all around you on that night drive up from the desert floor, with Saguaro cactus and rocky crags of mountains and multi-layered red rock formations jutting out here & there, forgot how the air smells like pine & sand & water & Creosote bush..."

on being back, in 5 short paragraphs.

As my third month back in America rolls past, I am still amazed at some of my daily struggles, challenges, perspectives and feelings of gratitude (and sometimes shock!) for all the things we have in this country. While I search for the best way to articulate my experiences, I keep stumbling across wonderful posts from other Returned Peace Corps Volunteers, which I find incredibly comforting. Was it a wise decision for me to move to a big, unfamiliar city just a month after my return? Would some of my experiences differ had I moved to a small, laid-back town, like Missoula, Montana? I'm not sure...

But, one thing I do know is that it's nice to read articles like the one excerpted below, and remember that I'm not alone in my feelings of uncertainty and wonderment, of belonging and disconnection, of missing a place that I never really belonged to, but somehow now lives inside of me.

The list to follow is from a Huffington Post blog by Ross Szabo, entitled "The Hardest Adjustment in Peace Corps is Coming Home." In the article, he interviews Erica Burman, Director of Communications for the National Peace Corps Association, of which I am now a member. Below he identifies five issues facing Returned Peace Corps Volunteers. I currently experience them all in any number of combinations, daily, and couldn't have made a better list myself.

1. You have changed, but other things stayed the same. In talking about volunteers' adjustment Erica said, "Most people just can't understand that the past 27 months have been a transformative life experience. You've seen and done and survived things most Americans can't imagine. Things that you couldn't have imagined before Peace Corps. You've witnessed exquisite beauty and the most squalid ugliness. Had your values and assumptions fundamentally tested, and your priorities shifted. So you may no longer be your sister's best shopping buddy, or your dad's sports guy. But many friends and loved ones expect you to be, more or less, the same person you were before and you're just not. That can really be painful for everyone."

2. It's great that you volunteered, but have you heard about the Kardashians? Erica stated, "Sadly, most people aren't that interested in what you've done for the past 27 months. Their tolerance for stories about your Peace Corps experience is generally pretty low. They might ask, "So how was Africa?" Not your country, but the entire continent. "Was it hot? Did you see animals?" [Or in my case, when hearing I was in Madagascar, people can think of nothing more intelligent to say than, "I like to move it move it!" and laugh at what they think is a clever, original comment.] After a few minutes the conversation changes to pop culture or some other topic. Meanwhile you have days, weeks, months worth of stories and anecdotes and impressions and comparisons bursting to get out and be shared."

3. Daily life in the U.S. can be boring. Volunteers spend a lot of days talking about how boring life can be during service, but life in the U.S. can seem mundane. Erica shared, "You miss the daily challenges of figuring things out and overcoming obstacles. It can be tough and painful during service, but it's also immensely satisfying when you do persevere and succeed. Life in America is more routine, more predictable. There aren't those thrilling frissons of bewilderment and strangeness."

4. You are no longer a pseudo-celebrity. As I have started to adjust back to life out of Peace Corps it is a bit weird to not have every child yell to me and most people excited to see me walk by them. The novelty of volunteering disappears quickly. Erica says this is pretty common, "As much as volunteers complain about living their lives under a microscope, we can miss the fact that we're no longer special, that people don't really care about our every move. Truth be told, it can be kind of fun and ego boosting to be somewhat famous."

5. Going back to the material world. A lot of Peace Corps Volunteers leave developing countries with water, electricity and basic need shortages and enter America's first world problems like not getting all of the apps on the I-pad to work. Erica talked about this as well, "The superficiality, rush and materialness of much of American life can be hard to come to terms with. Overseas many of us learn to greet everyone, to take in and value each person we meet. We may sit for hours under a tree cracking peanuts with our host mother, just being. Often we become enmeshed in close-knit communities for the very first time. That's different than the hurried, "yeah, let's get together," that never happens. Also striking is the waste. We waste so much stuff. Water, heat, electricity, paper, plastic containers. You name it. Stuff that would be prized overseas is casually tossed here. It can be really disturbing."

RPCVs cope with all of these unique difficulties in different ways. Obviously not all of the adjustment is bad. We reconnect with family/friends, devour sorely missed foods, and bask in the land of washing machines and technology. We come home having missed weddings, births, funerals, divorces and a host of other life changes. We worry about what is next. It takes time to catch up with the people we are closest to. Some parts of the brain just click back on from the pause they had experienced and other parts take a little more time.

open letter to america.

Dear America,

I've written you a letter. I've been back here for one month, and have a few things to comment on.

America, I know why you're fat. You're sold more than you could possibly ever need, and made to believe, through media force-feeding, that what you need will never be what you actually have. America! Land of the free chips with your drink, unlimited bread and butter, 20% more for free if you order an "extra value" meal. You have to withstand at least four sales pitches for over-sized muffins, cookies or whipped cream to order a cup of coffee. I've ordered ice cream twice in this country since I've been back. Twice, I've asked for a "kid-size," and been presented with massive, double-scoops of ice cream, piled high inside my bowl. Should I complain? Do I have any obligation to feel guilty for the excess? I just wanted the littlest scoop... I don't really like ice cream, nor being obese. I asked if I could please just get a "kiddie" size, or if they could just take some out of the bowl before I take it, and both times was adamantly refused.  Well, nobody likes to say no to food. Especially not Americans.

Dear America, you're so sparkly and shiny. Your restaurants are lessons in efficiency and cleanliness beyond any sense of the imagination. Your gigantic grocery stores resemble hospitals. You never have to smell the meat or fish or chicken that you buy, nor see that it actually comes from a once-living animal, because all that blood and death happens behind closed doors and comes out in pristine, sterilized packages. You are never faced with humanity's grotesque scents, with the reality that we exist in a living, dying world. Your public toilets are cleaned hourly (and don't forget you can complain to management if there's a problem!) and are stocked with soap that squirts out automatically and paper that comes out with the magical wave of a hand. To have a fly in your restaurant is a disgrace. You are mortified by any potential for a public health hazard, while the rest of the developing world endures disease-carrying insects, filthy produce and questionable water as a daily part of life. Dirty dishes? Washed, sanitized and dried in minutes. Sometimes, I'd tell women in my village (who scrub dishes for hours everyday) about these miraculous machines called "dishwashers." They never believed me.

You smell damn good, America. We all wear deodorant; in fact, most of us wear something to prevent us from the horror of sweating at all. We have machines that wash our clothes with the click of a button. To have clean, fresh-smelling clothes takes the amount of effort it takes to carry your dirty clothes to the machine, which for most of us, is INSIDE our incredible, perfectly comfortable houses! Click: clean. Your public bathrooms are spritzed automatically with scented chemicals; floors and sinks cared for regularly. You can have your seat warmed, the air in your car, home or office at the exact temperature of your desiring; you can ask your server at the restaurant to turn the air conditioning up if you're feeling a little warm or ask your flight attendant for a blanket if your poor ankles are cold. America, you do not know discomfort. Trust me, you do not know discomfort.

America, your children complain too much. I recently heard 11-year old children here whining they had nothing to do!-- with more toys, games, music, computers, televisions, iphones, ipods, itouches, ipads, food, candy, movies, books and sports equipment to entertain them than any child in my village will ever see (or imagine) in their entire lifetime. I spent two years watching hundreds of children share a single broken bicycle- or play soccer in a dirt field with a makeshift ball made of random bits of plastic bags and rubber bands- with not a peep of complaining. In fact, the children there were more delighted and grateful than any I've seen in the US, with all its endless gadgets to occupy and placate our children.

Your adults are no better, America. You complain about leg room when there's more than enough space for at least five more people to sit in your aisle, two babies on your lap, ten chickens at your feet, a sack of potatoes under your bum and a few goats above your head. You whine about the price of gas while forgetting the absolute luxury of owning your own vehicle and the level of quality and perfection in the roads you get to drive. More importantly, you could SO easily carpool, take public transit or (heaven forbid you exercise), bike or walk to your destination. You complain about traffic but insist on driving yourself; you want bigger highways instead of focusing on improving public transportation or building light rail. You complain about the taste of your water, and insist on buying bottled water when you have some of the safest water in the world. While so many other people on the planet suffer through unimaginable lengths just for the basic human right for access to clean drinking water, you spend top dollar on something that truly, miraculously, comes flowing right to your own homes.

Dear America, your customer service rocks. Someone comes to your table, asks you what you want to eat and drink from an incredible plethora of food options, brings you what you want almost instantaneously and continuously checks on your every need & desire without (too much) prompting. I suggest you go to Africa if you'd like to spend an afternoon waving down a waitress who sulks at you, and a half an hour later, may decide to bring you a menu if she feels like it, only to tell you the kitchen closed a while ago, or that they're out of everything on the menu. You'll then be served warm beer, and be made to feel you're putting everyone out to ask for a glass, or at least a few stale peanuts. America, give your waitstaff the tips they deserve; they rock your world, and you know it.

America, the beautiful. Your streets are clean, your parks pristine, your landscapes vast and diverse. The complexity of flora & fauna that live in your mountains, rivers, deserts and glaciers are breathtaking, and the fact that so many of these animals and the places they call home are protected by people fighting to save them, is inspiring. You have so much beauty, so many open, wild spaces; a pride in your towns, cities, gardens and parks. People care about this country and it shows, no matter what your political or geographical persuasion.

But one last thing, America. This really bothers me: you just don't share. When a friend of mine & I sat down at a crowded pub a month ago, and had to sit at the only two empty seats in the place, the man eating at the table didn't give the obligatory karibo to welcome us! I was shocked. And then surprised by my shock. I couldn't believe how engrained this Malagasy cultural tradition has become in me, and how much I miss its absence in American culture. Why don't we invite people to join us? Why cultivate this "every-man-for-himself" mentality? I want to karibo everyone I see when I'm eating or drinking! -- and I feel people are rude when they don't do the same to me. Likeiwse, I saw a couple kids argue over who would get to eat an entire bag of cotton candy last week. This brought to mind innumerable moments in my village, when I saw small children splitting up the tiniest treats amongst themselves, such as a single peanut, or a half a mango. Karibo. I miss saying it, I miss meaning it, I miss hearing it. So, I welcome you anytime, America, and also thank you for taking me back into your big, albeit insane, arms.

where my head's at.

Or is it my heart?