Keeping the focus on food that makes me happy

It's hard to believe that it's been just over two years since I heard that bombshell news - 'You have celiac disease' - a diagnosis that left me both elated that there was an answer to my persistent health problems and gutted at how my food-loving life would have to change. Two years felt like the magic bullet back then, the estimated time for a gut long-ravaged by unknown celiac to heal itself. Now that I'm here, I feel like I'm still wading in uncertain waters rather than crossing some imaginary finish line of recovery.

In all fairness, I am leaps and bounds better than I was then, no longer needing to receive my nutrition intravenously or requiring 12 hours of sleep a night. But my journey to better health is just that - a journey.

The realization in the last few years that my disease was not one with just one easy solution - 'eat gluten-free' - but that wellness is more evolving and fluctuating has been a helpful one in dealing with the frustrations of living with celiac. Often, I must keep my intake of inflammatories in check, like coffee, alcohol and sugar, as overdoing it sends my body and mind into a complete downward spiral. And I don't mean daily-hangovers-kind-of-overdoing, simply anything more than a couple times of week. This probably holds true for most people as well, but my autoimmune-ravaged body is pretty sensitive to anything that doesn't directly contribute to its strength.

Then there are the non-physical frustrations. Knowing I could never eat 100% at home - how would I travel? how would I eat out with friends? - means accepting that there is always the possibility of being glutened, even by the kindest of friends and restaurant workers who believe they have taken every precaution. And when I do get glutened, as I was back in August, there are emotional, as well as the physical fallouts: digestive issues, exhaustion, foggy brain, a bipolar-like roller coaster of emotions. It's infuriating to feel like something as simple as eating requires this constant tiptoeing around landmines, but such is the life of a celiac.

Sometimes wish I could walk around with this emblazoned on a t-shirt because Berlin. Doesn't. Get it.
(infographic via glutenfree.com)

Aside from accepting this ebb and flow of feeling good (which I'm not gonna lie, is still a challenge), perhaps the greatest progress for me was made when I jumped into athletics for the first time in my life. Sure, I joined a gym at the behest of my doctor over a year ago, but it wasn't until I started training for roller derby that I really began to feel fulfilled, physically and emotionally. When I discovered that one of my leaguemates-to-be, the one I had watched at the first scrimmages I attended, mouth agape at her abilities, also had celiac, it gave me even more hope. While she is clearly a more natural athlete than I, it meant a lot to see someone who struggles with many of the same things succeed at such a physical endeavor and showed me the path I am on is the right one. I am not about to let this silly disease get the better of me.

Mia Missile, fellow celiac and total derby inspiration (photo by Preflash Gordon)

That said... the struggle still gets me down sometimes, leaving my psyche to feel as if it's barely treading water, threatening to slip under at any moment. Our week in Barcelona showed me how good it could be in another European city, from the vast eating options to the superb awareness about cross-contamination - things that are practically non-existent in Berlin. To add further insult to injury, Barcelona was the other city we considered when moving almost three years ago - and ironically we chose the one that is more difficult to navigate with celiac.

Returning from skating in the sunshine and indulging at not just one, but two incredible gluten-free bakeries, I slipped into a bit of a funk. The self-indulgent pity parties started again, pouting any time a great event showed up in my Facebook feed, only to realize that I'm better off staying home because I won't be able to enjoy anything there. The voice in my head that whines: WHY can't it be as good here for gluten-free as it is in Portland? Or even Barcelona? Well, life isn't always fair and there is only one way to go: Forward.

This is what gluten-free eating looks like in Barcelona - and I ate it ALL

Back at derby training after a league break and our Mediterranean holiday, I'm working to regain not only that physical strength I acquired thus far in my newbie class, but also the mental wellness that came with it. Chronic illness or not, we all have good days and bad days, I just need rise above pointing my finger only at my celiac on the bad days and letting it overshadow all the progress I have made.

Next up is my biennial endoscopy, the first since my recovery began, to ensure the damage has indeed repaired itself and I haven't gotten the lovely cancer that we celiacs are more prone to developing. With that, cutting back on the inflammatories (buh-bye, beloved coffee and alcohol), getting my ass back to the gym (so, so hard on top of my derby training schedule) and keeping my head clear of all those nagging negatives about living gluten-free in Berlin, I know I can keep moving forward in a way that is positive for my overall well-being. Ultimately, I have to listen to my body, something that I can thank celiac for teaching me to do.


I wrote specifically about my road to roller derby for the new online magazine Do It Well Co. Read it here and be sure to check out the rest of the great contributors to the issue!

We always had cats. Those independent creatures that come and go as they please, really only caring that you feed them, and pet them (but only when they feel like being petted). To make matters worse, we moved so much, all our cats ran away, eventually discovering new, stable homes nearby, homes with people less nomadic than we were. Bonds with those pets were easily broken, or so they taught the much younger version of myself. With those finicky felines and one brief stint with a family dog that lasted about a week of barking all through the night before my mother relegated her to my father's business as a shop dog, I never got attached, really attached to an animal - until Bailey.





Wanting that connection to a family pet I saw on sitcoms, I kept regular tabs on the new dogs taken in by a Boxer rescue organization, as I grew up with my grandparents' Boxers and they were what I knew. They were sweet, playful and good with families (there is a photo of a one-year-old me 'riding' my grandparent's ever-patient Amber), and I felt this was the four-legged friend I was meant to have. After meeting my now-husband, he too kept tabs on the rescues taken in by the group, until one day he sent me a photo of a pup born of one of the pregnant dogs surrendered there. So small in the photo, the shiny black coat of her rolling stone, black lab father and trademark Boxer splashes of white on her nose and toes, with hints of pink puppy skin peeking through... and I fell in love. We decided to jump into dog ownership mere months into our relationship.





Bailey grew up a master of her backyard domain while we worked long, American work hours and spent most of our time together curled up on the couch, with us too exhausted after long commutes and countless hours at our respective offices for much more. Sure, we took weekend trips to the dog park, the beach and to swim in my mother's pool, but it wasn't until we made the seemingly crazy decision to move overseas that her doggy life really blossomed. With me at home to walk her multiple times a day, nearby forest and mountain trails to explore and a generally slower pace of life meant we could all spend more quality time together. While she never quite mastered the art of being a good German dog - laying quietly under the table while we all enjoyed a meal out or proudly carrying her own bag home from a morning run to the nearby Bäckerei - she had a zest for life that none of those well-mannered pooches could touch. Even after being attacked by a neighborhood dog, she never feared other animals - only worrying over my resulting tension every time we passed another dog while on a walk.





Four years of forest hikes and vineyard strolls became urban exploring and warm-weather swims in the many lakes once we moved to Berlin. Slowly, Bailey's fear of the street cars turned into reluctant ambivalence, accepting that they would never jump to curb to attack her, as she seemed to fear. While she never took to riding the U-Bahn, we took countless car trips out to parks, canals and lakes all over Berlin, a city we chose in part for how green and canine-friendly it is. By now, we both worked at home, so we enjoyed more time together, and she was even more a part of our daily life than ever.

But everything came to a screeching halt late last summer when some simple warning signs turned into the diagnosis that would change everything: Cancer. I'd been here before, with many friends and family members, and the end result was always the same. Worse yet, basic internet searches told us that Bailey's cancer, adenocarcinoma, was 'aggressive', really the last word you want linked to an already damning diagnosis. We moved forward with surgery to remove the tumor and then chemo to make sure whatever was left was destroyed. Only, after just one treatment, the cancer was still spreading. When the more aggressive treatment options left were beyond our budget - or required temporary relocation across the country - we instead stretched our bank account for a concoction of pills that did all they could to make things easier for her. And for a while, they did.

Photo by the talented and generous Zoë Noble for our New Year's card

After one last great Christmas together, there was a notable shift in Bailey's well-being. It was a swift decline that we could not ignore, that told us her quality of life was dwindling. Her body was giving up on her and her spirit was finally showing signs of the struggle she had hid behind her happy disposition and unending curiosity for so many months. When things came to head around her 10th birthday in mid-February, a tearful visit to the vet was met with a gentle prompting that it might be time to let her go. So we took the week off and traveled up to the coast to take her for one last trip to the sea, a place she had always loved. Even the restorative effects of being seaside were no match for the agonizing realization that these were our final days together.





There is both a comfort in being able to plan for the end and a desperation that permeates those last days and hours. Though knowing the day was approaching didn't make it any easier. After all, how do you prepare yourself to say goodbye to someone who was a constant companion, confidant and family member for nearly a decade? On her final day, she got spoiled with a meatloaf cake - complete with mashed potato frosting, bacon crumbles and strips of her favorite thing: red bell pepper - to belatedly celebrate her birthday, when she had been too sick to eat anything. We finally got ourselves into a photobooth for some family photos. She finished off the last of her bags of treats and we took our final walk in Mauerpark. We tried to keep the mood light for her sake, and while she could never comprehend what was to come, I'm sure she felt the heaviness in our hearts. Walking to the vet, every cell in my body wanted to scream and run the other way, but knowing that selfishness would do nothing for her pain and deteriorating spirit was the only thing propelling me forward. It was over so quickly, proof that her body was even closer to the end than we had thought, the weight of her collapsing onto me once the drugs took over a sensation that will remain forever burned into my memory.





Walking home with our bag of her things, without her, was a numbing experience that continued for many days afterwards. I couldn't eat much of anything and I was haunted by the decision we had to make, wavering back and forth whether it was the right one, whether we really did all that we could. Some days I'm grateful the cancer moved quickly and that she didn't have to suffer through years of pain and slowness, or have that ever-present youthful exuberance fade. Other days, I'm just so angry that she was taken from us at what could have been only the halfway point in her life. But as with any loss, there are only so many days of regret and anger before you have to just let go.

We took our time cleaning up her things, a few final items that are still sitting in bags or boxes, waiting for the heart to throw them out. It is true what they say, it does get easier. Expecting to hear the jangle of her tags and click-clack her toenails on the hardwood, or waiting for the barks that don't come when there is a troubling noise in the stairwell or on the street below has faded, replaced instead by a sadness at the quiet these absences now bring - and often a smile at how her arduous barking to alert us to a stranger outside our door would transform into an equally passionate session of tap-dancing and face-licking when it turned out to be friends. She was truly one of the sweetest and best dogs I have ever known.






Most days pass with only a few reminders, fond memories that bring a smile to my face, but there are others when a deeper sadness settles in, one I can't shake and usually requires a good cry to satisfy the greedy needs of grief. I'm also can't help but think of my negative feelings towards all the people I've watched swap out their departed pets of notable breed almost immediately with a cookie-cutter replacement, scoffing at how they could just bring in a new one as if the old had never even been there. But now I understand. I understand the hole these animals leave in our lives when they go, and how amazing that unlike people, pets are generally plentiful and new ones can be added into a family with minimal effort. After grieving Bailey, I feel that pull towards other animals stronger than ever before. But there will always be time, a time when I am perhaps more ready. For now, we will focus on the things we have missed during all these years of illness, first mine and then Bailey's, like travel plans repeatedly pushed off and budgets swallowed up by numerous treatments. We are reminded to live a life as happy and curious as Bailey's, one that is full of all the things and experiences that bring great joy. Her absolute love of life will be her greatest legacy, one that we can honor by living in the same way.

And so we will remember Bailey as the most perfectly imperfect dog we could have asked for. We are so grateful she was able to join our family for as long as she could. Thanks for being ours Bailey-dog, we love you!

Photo by Zoë Noble