I'm Ro. 

I’m a 30 year young woman with Crohn’s Disease. I have felt trapped by the burden of a chronic illness and the medical intervention it requires. This is my journey to taking back my life through dramatic change in lifestyle, location, and loving myself.

Austin, TX

Austin, TX

If New Orleans is your vibrant colored, tightly packed, old timey, best friend; Austin, Texas is her  burnt orange, sprawling, cowboy sister.

I sat in traffic in Houston, Texas around 5:30PM. The city towering business offices and huge strip malls on either side. I sliced an avocado with my pocket knife and dumped the green inside into my lidded oversized plastic rice container. I drove through Houston spooning rice and avocado into my mouth with abandon. I had intended to wait until I got into Austin, to eat something local, but with the traffic and my huge meal bag in the passenger seat, I decided to eat “dinner” in traffic, plastic jug between my knees.

I arrived in Austin late Friday night. I was staying with an ex-partner, T, the only ex I am to this day still friends with. A kind-hearted, quite, engineer, with jet black hair and big weepy blue eyes. T waved me into his parking space in the lot of his complex off South Congress St. In each city, I am trying to use my car as little as possible, if not at all. With my whole life squished into my car, I figure the less I am driving and parking on random street corners, the less likely I am to have my “home” broken into. T’s building is gated and he was nice enough to let me take his parking spot behind the wrought iron.

The next morning T dropped me off at a Bikram yoga class. I was pleased to learn that Austin has ClassPass so I could take yoga at different studios around the city at no additional cost. I’ve always liked Bikram yoga. Well, I’ll rephrase that, I’ve always liked the practice of Bikram, unfortunately as with most cultish practices, the founder of Bikram was abusing his power as gurur and was accused of sexual assault by various students. This certainly makes me weary of supporting a system he profits from, but he was never actually able to copyright a thousand year old practice, and honestly the pessimist in me thinks that most money making enterprises are run by the power abusive, so I pick my battles.

Bikram classes consist of the same series of 26 postures in a carpeted room heated to 104°F. Understandably, this is some peoples’ idea of hell. I find the overwhelming heat keeps me present in my body. My mind cannot wander and the heat makes me hyper aware of my form, every bead of sweat, every point of tension. Doing the same poses keeps me from thinking about the flow and it becomes muscle memory. Bikram reminds me of when I first started practicing yoga in college. Me, my Venezuelan friend and yoga instructor Charlotte, and three friends would ride out to the Sarasota bay, find a clear flat spot and practice in the 100 degree Florida sun. Baked and exhausted, we would usually conclude our hour and half long sessions by jumping into the clear blue water below, an ocean baptism. The greatest difference between yoga on the beach and yoga in the studio is the smell. Most Bikram studios I have practiced in have the pungent odor of a locker room. No matter how much incense you burn or air filters you run, the meaty fleshy smell of a carpeted yoga studio is real. I have found yoga to be imperative to my GI health and I try to practice at least three times a week.

After yoga, T and I went to get lunch. Aware of my diet and ever the considerate host, T suggested we visit Casa De Luz, a macrobiotic restaurant with all the leanings of a cult. In addition to a fantastic (and it is fantastic) restaurant on premises, Casa De Luz has a book/health food store, an alternative learning environment called the “Integrity Academy,” and event spaces. They seem to extol the leadership of George Ohsawa the founder of macrobiotic eating. T and I walked the beautifully wooded path around the courtyard to the restaurant. A lithe blond gentleman at the counter told us it was a fixed menu for $12. He took our cash and gave us a wide-eyed dopey smile. “Oh yeah, it’s a cult.” I whispered to T and he rolled his eyes at me. Our $12 got us, three house-made tea options, unlimited thin broth vegetable soup, almond dressed salad, and a stunning plate of basmati rice, green beans, pinto beans, kale with cashew butter, and pickled cabbage. The seasoning was perfectly balanced. Each item was flavored not too strongly, letting the produce do most of the work, the pickled cabbage creating a much needed bite and the basmati rice adding a subtle nutty flavor, nothing overpowering.

Macrobiotic eating promotes simple staples, limited meat eating, balanced spicing, and eating locally. There was a bit about mindful eating, a pamphlet on each table extolling the benefits of this diet (CULT?!) and listing the 30 principles of macrobiotics. They range from the philosophical, “Everything changes,” to the practical, “Chew your food, 30 bites each time.” There was also language around mindfulness and abstemiousness, touting the benefits of monk like hunger.

After the delicious lunch, we treated ourselves to a $4 vegan gluten-free strawberry pie. I typically skip dessert since sugar makes me feel terrible. I am usually watching longingly as my dining companions dip their spoons into lush cakes and ice creams, while I look on lustily. I appreciated that at Casa De Luz I could enjoy the perfect pie, guilt free. And it was perfect.

One thing that did give me pause was a quote printed in vinyl lettering above the entry doorway. It read:

When diet is wrong, medicine is of no use.
When diet is correct, medicine is of no need.
-Ayurvedic Proverb

I agree with this sentiment in some respects, but something about this phrase looming above the restaurant customers heads as they stood in the buffet line, seemed overzealous to me. I am in the process of controlling a chronic illness with my diet. I should have identified with this, but I have never been that didactic. While I have altered my diet and lifestyle, I never suggested that I would not consider western medicine should my symptoms return. Part of managing a chronic illness is the understanding that the body changes. We are not fixed beings and sometimes that requires infusions every 8 weeks, sometimes that requires taking lots of pills, sometimes that requires skipping the damn sugar dessert. I believe diet is an integral part of the puzzle, but certainly not the whole game.

T and I went to meet an old high school friend of mine who also lives in Austin, Lauren. Lauren and I became friends my freshman year of high school, when at lunch one day my friend and I noticed Lauren a few seats down, decked out in emo black mini plugs and puffy skater shoes, we invited her to come sit with us. Lauren went to University of Texas and now has a boss job working for Facebook. T, Lauren, and I went to the Blue Genie Art Bizzare, an indie craft market, an etsy board come to life. Here, I bought my second road trip talisman, the first being my voodoo stick from Dr. Bob, a sweet little gold caste long horn bull skull by Stitch and Stone. I debated getting a David Bowie embroidered pearl snap vintage shirt from the Triple Z Threadz, but it cost $50 and I had only traveled 1,200 miles so far. Chotckes in hand we moseyed, as one does in Texas, over to Weather Upthe sort of bar where they serve martinis in old timey champagne flutes, and all of the bartenders have handsome facial hair. We were not disappointed. I drank two gin martinis with what I believe were the best olives I have ever had.

We moved on to dinner at a vegan restaurant called “Counter Culture(we get it Austin! You’re hip!). I ordered a gluten free Beet Mushroom Walnut Burger and a dairy free Caesar Salad on the side. I was practically giddy with excitement, ordering my hearty comfort staples of caesar salad and a burger. Of course this was an abridged version, but when I munched into that first bite of beet burger, I could not have tasted a difference. Drunk on reckless abandon (and two martinis..oops), I ate the whole plate almost as quickly as it came.

We moved on to a bar down the road and eventually The White Horse to watch beautiful young girls in leather boots and boys in jean shirts line dance with real cowboys. Lauren, T, and I stood at the edge of the dance floor watching smiling couples spin each other around in a perfectly timed box step. I was amazed that everyone seemed to know this dance and how overjoyed they seemed to be doing it. Watching their faces made me a little melancholy in that moment. I had been to The White Horse once before, a few years back for a girlfriend’s bachelorette party. The trip took place right about the time I was diagnosed with Crohn’s. I still went and managed to successfully drink most everyone under the table. At The White Horse my girlfriends and I had gotten right into the dancing mix, getting swept in the contra, spun around by dow eyed mustachios in jeans.

T noticed my stern looking face, “hey, let’s go outside Ro,” he said sweetly.

Laurent, T, and I stood around the outside pool table. A hulking, older, bald man sat down at the piano adjacent to where we stood.

He started playing.

“Blue jean baby, L.A. lady, seamstress for the band
Pretty eyed, pirate smile, you'll marry a music man
Ballerina, you must have seen her dancing in the sand
And now she's in me, always with me, tiny dancer in my hand”

Lauren and I looked at each other wide eyed. In an odd coincidence, we just had our own Elton John sing-along in her car. A gaggle of yuppies in Christmas sweaters and reindeer antlers swarmed the piano, leaning expectantly around the playing man.

“Jesus freaks out in the street
Handing tickets out for God
Turning back she just laughs
The boulevard is not that bad”

The crowd undulated with excitement singing along where they knew the words. They threw their heads back drunkenly and sang out.

“Hold me closer tiny dancer
Count the headlights on the highway
Lay me down in sheets of linen
You had a busy day today”

The bar erupted and when the song was over, the piano man got up, shook a few hands, and refused an encore.

“Ready to go?” I asked. T nodded.  

“Sure thing,” said Lauren.

The next day I regretted my choice to have more than two drinks (my usual maximum) and my reckless comfort food (vegan or not). My stomach felt bloated and I was very uncomfortable. I signed up on Classpass for a spin class at Define, a studio I had been to in Atlanta so I was familiar with the set-up. T dropped me off in front of the studio and I went about sweating out the evening’s activities. I like Define cycling studios, although they make you rent the shoes for an additional $3. I like that they do not have a scoreboard with stats, just low light controlled by the instructor, and copyright-safe remixes of your favorite songs, set to unrecognizable beats.

T and I had a lazy afternoon visiting Book People, a large, locally owned bookstore with regular readings. A wonderful feature, they have their staff recommend hundreds of book titles in each section and write a little blurb about each one. It makes for great browsing and I ended up picking up, All We Ever Wanted Was Everything, a nice break from the heart heavy Wild by Cheryl Strayed. It’s a darkly funny story about a Stepford family falling apart, it felt good to read something that does not feel so closely related to my current journey. Although, there is a character in her early 30s who’s running away from debt, a failing business, and romantic life in Los Angeles which I am trying not to read as foreboding. We wondered through Waterloo Records across the street, but since I had gotten rid of my record player and given my entire collection to my friend Erin, I was not interested in looking for too long.

I made my standard stomach soothing fair when we got back to the apartment. Rice, shredded carrots, basil, tamari soy, scrambled eggs, and avocado. I ate that for the next few meals to soothe my bubbling belly.

The next morning I biked downtown to Black Swan Yoga. I got terribly lost getting there and was sure I would get locked out of the studio, a practice that drives me crazy. I’ve been locked out of my share of studios. Fortunately, Black Swan was open and I slithered in a few minutes late. The tiny gymnastic teacher did not bat an eye and I was able to jump right in. We practiced a strong Vinyasa flow series for 60 minutes.

I was biking up to Caffe Medici, a coffee shop recommended to me by a fellow yoga mate, when I came up to a steep hill. I was pumping my legs about to shift gears when the bike chain jumped off and I skidded to the side of the road. “Damn!” I wailed. I pulled off my sweatshirt baking in the Austin sun. I remembered that someone had mentioned a coffee shop/bike shop run by none other than cyclist star turned persona non grata, Lance Armstrong. I held my bike at the handle bars and walked towards 6th Street. It was a beautiful walk, the weather a comfortable 68 degrees, the big cloudless Texas sky above.

At Mellow Johnny's I rolled my bike up to the service counter where two men stood working. One of the men, young, probably in his very early twenties,  slight in stature and temperament, gave me a shy smile behind wire rimmed glasses, and let his coworker approach me. The approaching man was much older, somewhere in his forties, balding in the middle of his skull, surrounded by long brown dreadlocks down his backside. He graciously fixed my chain free of charge and I posted up in the corner coffee shop for a few hours to work on my previous post.

That night we all went to see Nocturnal Animals, a thriller starring Amy Adams as a tortured gallery owner, an aging red head, living in Los Angeles, and Jake Gyllenhaal as a weak willed cowboy, who’s family is brutally murdered by a bunch of Texas rednecks while driving to Marfa, although they looked more like handsome hipsters… seems to be a theme in Texas. As an aging redhead, moving to Los Angeles, by way of Marfa, I was a little unsettled. I am not sure if it is the nature of my trip, or the fact that my brother in law is Nathan Rabin and literally wrote the book on this, but it feels like every bit of pop culture I am ingesting is unsettlingly linked to my trip and anxiety… or maybe I am just being narcissistic and anxious, who can tell.

My last morning in Austin, I got up early and biked toward downtown. I had moved to my friend Lauren’s house to give T and his roommate a break. I was getting the impression the presence of my food stuffs in the kitchen were outstaying their welcome. I biked from Lauren’s, intending to attend another Black Swan yoga class, but I found myself hopelessly lost. By the time I was twenty minutes late, I resigned myself to exploring the central area on bike, winding through the well maintained bike lanes and trails. Coming from Atlanta, my bike safety expectations are very low. I was thrilled to see that not only were there designated bike lanes almost everywhere, some even had safety medians to buffer between the vehicles and bikers. The drivers also, for the most part, seemed comfortable with bikers on the road. In Atlanta, drivers either come so close they are almost clipping you or circle widely around you, careening into the other lane of traffic, an exaggerated over-arch as if to tell you you are inconveniencing their drive. Listening to Formation, the whole way, I winded in and out of the bike lane rolling downhill. Boys on bikes whizzed past me, their bulging calf muscles covered in colorful tattoos, peeking out the bottom of their rolled up jeans. They seemed so prepared with their impeccable gear, dome like helmets, and waterproof satchels rolled up on their backs. I always feel intimidated by these boys. On a bike I could never catch up. I sit up tall instead of hunched forward butt in the air, my heavy leather backpack and sweater tide around my waist do not say speed-demon bike-babe. I stopped at the bottom of 6th street and hopped off my bike to walk. The lower part of 6th street or “dirty sixth” as it is referred to by the locals, is Austin’s version of Bourbon Street. Just a few days before, I had biked through Bourbon Street in the middle of the day. 6th street had the same slow awakening energy, not as gritty as New Orleans, it felt a little tamer, a little less wild, equally a tourist hellhole.

I headed to Facebook headquarters to meet Lauren for lunch. Apparently Facebook boasts a lunch buffet that would make Whole Foods weep. It did not disappoint. Security was quite strict and Lauren came to meet me, sign me in, and get me a visitor badge. I cannot say too much about the experience as I had to sign a non-disclosure, agreeing not to report anything I saw, but that is probably more focused on employees computer screens then me marveling at the free soft serve yogurt machine and fresh fruit smoothie bar (THAT’S RIGHT, I SAID FRESH FRUIT SMOOTHY BAR?!). I will say they had a vending machine that doled out free electronics to employees, things like keyboards and external hard drives, and the salad buffet was insane. I had perfectly roasted salmon fillets with every lettuce imaginable, beets, avocado, chickpeas, edamame, hard boiled eggs, sesame seeds, oil and vinegar.

Full of salmon and employment envy, I rode down to a coffee shop up the street called Halcyon Coffee. An old friend of mine, Arielle, whom I know from my time living in Brooklyn, saw my blog and recommended I get in touch with her brother. Arielle's brother Zach has suffered from Crohn’s Disease since he was just 6 years old. He has faced numerous surgeries, medications, and life altering physical breakdowns. Arielle showed him my blog and I was flattered to hear that he appreciated the story telling and liked my illustrations. He lives and works as a graphic designer in Austin. We set-up a coffee date.

Zach and I hugged upon meeting and sat in the corner table at Halcyon. He had a warm open energy and I liked him immediately. He was about my height, solid stature, with a band of beard around his chin, and a friendly smile. He certainly did not look like someone who had been sick since he was a child. It was refreshing to meet someone my age, who has total ownership of their illness and subsequent identity. Something, I realize, is part of coming to terms with a chronic illness, something I realize I am trying to do with this blog.

Zach has no colon and sports a black line tattoo on his forearm that says as much. It looks almost like a straightened yin yang sign and it made me think how balanced he seemed, despite experiencing the type of symptoms I had only read out about. My Crohn’s symptoms have all been GI related, directly linked to my gut or backside, they are mostly localized. Zach has experienced symptoms all over the body, ranging from the detrimental and debilitating, like severe migraines or bizarre, like inflammation in his calf muscles. He has been on Remicade infusions for over fifteen years and was among the first patients to utilize this, at the time, experimental drug.

“How do you feel about the infusion process?” I asked, “I had a difficult time with Remicade. I had two reactions, but even before that I just hated the whole thing.”

“Well,” he said smiling, “It’s worked for me for years. In my life I’ve tried so many things to control my Crohn’s. I went through a three year period in college where I tried the holistic route, reiki, and eliminations diets, and stuff, but ultimately it’s what has worked best for me. A few years ago, I ended up in the hospital because a nurse refused to give me my infusion, when I had a low grade fever. They even changed my diagnosis from just Crohn’s to Remicade infusion induced inflammation, I have never risked being off of it since then.”

“Wow,” I said feeling a little bashful, I had never experienced anything that severe. Even my symptoms at their worst had never rendered me completely incapacitated. I have never at this point required surgery, I have never even been hospitalized, thank god.

“It’s actually about empowering yourself,” he continued. “The first time I told a doctor ‘no’ I remember feeling so in control.”

I know the feeling. When I sheepishly told my doctor a few months back that I was moving and trying a more holistic approach to my healing, I felt more in control than I had since my diagnosis. Even though he smirked at me condescendingly and changed the subject to my living in Los Angeles, I somehow felt like I had taken a tiny bit of that power back.

“You can either let it define you or you don’t. I really had to learn how to identify with it, recognize that it is just another part, not the whole part of who I am. When I was young, I would do everything I could to hide it. I left summer camp one year two weeks early for a final surgery and told my friends I was going on a family trip. A counselor found out and was like ‘Oh my god are you ok?!’ and I was like ‘oh yea! I’m fine! No worries! Bye!!!!’ It took around college for me to really take control of it and identify with it. It’s just one of the things I am Jewish, gay, a designer, someone with Crohn’s. I had to take it back from my mother as well. She had been dealing with this since I was a kid, so there was a point of taking it back from her. Saying ‘it’s ok, I’m going to handle my body now’.”

I thought about laying in my parents bed three years ago, when I first experienced my harsh symptoms. Curled up in my mother’s bed while she and my father went about making appointments and treatment plans. I laid catatonic, as if I were watching the movie of my life from their bed, this flurry of doctors and appointments happening to someone else.

“Yea, I get that so much.” I said. “I am just at the point where I am doing that now. Do you ever feel self conscious about the way you look? I mean, not that you look sick, I just mean, I have found myself feeling self conscious about how I look naked. I’m not sure why exactly, as if my skin is different or something. Maybe it’s in my mind. I have to admit I like the small amount of weight loss.” We laughed.

“Well, I have a seven inch scar down my stomach from surgery so when I was younger, I was nervous about taking my shirt off at the pool or whatever I was like ‘how am I going to explain this?!’ But these days I don’t worry about it too much. Maybe this isn’t the best phrasing but I feel like dealing with something like this make you more…” he touched his chin looking for the right words, “Again maybe not the best words but more... woke. I don’t want to meet the person that’s never experienced any hardships, that level of privilege is terrible. People say the world needs more kindness, I feel like people need more empathy for humanity. Something like this gives you more empathy.”

I was floored. What an incredible positive outlook on a lifetime of pain.

Zach’s phone buzzed. “Oh damn,” he glanced at his phone. “My parking meter is up.” We hugged goodbye and I thanked him profusely for meeting with me. It made a profound impression to talk with someone who so fiercely owned himself, his illness, his treatment, his person. He promised to come visit the next time he was in Los Angeles and I promised to do the same the next time I was in Austin or New York. We hugged again and he walked out the door.

Thank you Austin for a mix of old friends and new ones, a town teeming with handsome cowboys, and well maintained bike lanes.



EATS: Casa-de-luzWeather UpCounter CultureMellow Johnny'sHalcyon Coffee

PLACES: Pure Bikram Yoga, Blue Genie Art Bazaar, Stitch and StoneTriple Z ThreadzThe White Horse DefineBook PeopleWaterloo Records, Black Swan Yoga

Navigating Covered California, While Navigating to Marfa

Navigating Covered California, While Navigating to Marfa