Byron making coffee in a hotel bathroom, somewhere on the west coast.
You might wonder how I manage to travel so much given that I cannot eat in normal human restaurants or houses.
The answer is simple: planning!
I travel with food and the gear to prepare and eat it. My standard kit includes an espresso maker, kettle, cups, colander, plates, utensils, with sufficient basic provisions to eat even if I can’t find a store. And I make it all fit in a standard carry-on.
Along the way I buy vegetables, fruit, and whatever “safe” products exist in each region. Celiac disease is uncommon but distributed evenly across the population, so wherever I go (no matter how urban or rural) there is almost always a store or cafe with certified products.
There can be some anxiety if I don’t speak the language, but packaged foods have standardized labeling in each country. Organizations like Find Me Gluten Free have updated user reviews so it is possible to double check whether a particular venue is being truthful about their offerings. Other people with the disease lead the way, sharing their tips and preferences on blogs and message boards.
The greatest challenge while traveling is the prevalence of products or companies aimed at people who avoid gluten as a lifestyle choice. Why? Because those people do not suffer any ill effect if they are exposed. Gluten is not actually a toxic threat to the larger population, though avoiding it is trendy right now. Every city I visit has beautifully designed, popular establishments with #glutenfree signs in the window. Only a small percentage of these places are safe for me.
People with celiac disease get sick if they are exposed to even tiny crumbs of gluten; some of us get sick at trace levels. The legal standard is expressed as parts per million, which gives some sense of how little it takes to trigger an immune reaction.
I am extremely cautious about establishments that cook without gluten, but do not buy their supplies from certified sources. I am even more suspicious of places that do use safe supplies, but cook in a shared kitchen and serve on the same dishes. Have you ever had to ask for a clean fork, or noticed smears on your water glass? That is above the level of accidental contamination that can put a celiac patient in bed for weeks.
When someone suggests a great new place they know, leads me toward a paleo or vegan or keto cafe because they think it will be perfect, or tells me that a chef can make something special in the back, I shrug. I’ll go along to whatever faddish destination is suggested. I’ll admire the tile on the floor, and ponder how the cement counters were poured, and have a great time hanging out with friends and colleagues. But I won’t eat.
I grew up in a family and community where potluck was the most common type of social gathering, and you certainly never asked what was in the dishes on the table. If you went to see an elderly relative you took a coffee cake; if someone was in need, you delivered a casserole and shared the meal. People were not fussy or inquisitive about ingredients.
In my life in England, the usual place to meet was cheap and cheerful restaurants on Brick Lane, or riverside pubs. Losing the ability to share casual, uncomplicated, random food does feel strange. It also feels discourteous: I was raised to believe that declining food is insulting to the host. There have been many awkward moments when I have to turn down treats baked especially for me by a well-meaning friend, or sit in front of an untouched plate at a wedding dinner. I do it anyway, because the alternative is worse; eating contaminated food is a fast pass to serious illness. But I do miss both my childhood habits, and the convenience of my peripatetic adult life.
There is an unexpected benefit to the disease: it is a great leveler. People with celiac have only one thing in common – a life-threatening immune disorder. Those who persist in traveling after diagnosis have no automatic cultural affiliations. We don’t share political beliefs, sartorial styles, socio-economic backgrounds. We just want to find a sandwich that won’t kill us. I meet the most diverse and interesting people standing in line for gluten free cupcakes.
From Berlin to Bennington, Los Angeles to Lisbon, when celiac people order food we have the same basic question, expressed in many languages but a similar expressive wave of the hand. We ask it everywhere, even in certified gluten free facilities: you’re sure there is no gluten here, right?
Sometimes I find amazing things – a restaurant in Vienna that serves traditional (safe and good) Austrian food. Bakeries in rural Vermont or urban Portland making bread that rivals traditional competitors. Sometimes I find nothing at all, and I sit in my hotel, eating a cucumber and feeling fretful. But I keep traveling.
I’m a pragmatist (and I had cancer as a child) so I skipped a lot of the grief and anger people feel about this disease. Yes, it is annoying, and inconvenient, but it isn’t the end of the road.
Every year when I start Thanksgiving preparations these are the two key elements: a cookbook Stella gave me at some point in the late 90’s, and a turkey recipe Marisa scribbled down after calling her dad in a moment of culinary crisis in November of 2002.
The book and the recipe have travelled with me from country to country, suffering splatters and hand notations as I converted units of measure and heat. When I started cooking I needed both of them, but over the years I have progressed to the point where they are more like props, or pep talks. I know how to cook a turkey now, but I still consult the directions from Marisa’s dad (RIP). When Stella isn’t here, the book acts as her surrogate, encouraging me to follow my instincts.
My kitchen was built in 1890 and updated no later than 1938. I use old equipment with signs of both love and abuse, much of it from the family homestead in Poulsbo. This year I’m cooking on a table we bought at a thrift store in Tacoma in 1995, when we lived in a shotgun shack with James. I’m serving on plates my Grandma Vi collected with grocery coupons in the 1960’s. When the guests arrive I’ll pull out the pickle dishes Grandma Lavender used, though I’ll probably fill them with olives.
Byron will pour wine for guests in glasses once owned by a beloved friend he knew growing up in a church in Denver in the 1970’s. When Ann died we inherited her wine glasses and a set of blue glass dessert plates, now in regular rotation in my dining room. They are stored in a Jackson Press, a family heirloom from Tennessee, in a room filled with photographs of my dead grandmothers.
Everything in this house holds a memory, and touching each item brings back lost time — and lost people.
It has been three years since my mother died. This is what I wrote when I picked up her ashes:
I miss her, every minute of every day, but the grief is more diffuse, shot through with flashes of regret and bewilderment. I don’t know why she died, but she would say: why do you care? Knowing won’t change anything.
Nevertheless, I wish she had remained alive long enough to visit Ireland, even if she resented my efforts to make her dreams come true. I wish she could see my kids graduate from college, although she officially did not approve of higher education. I wish that she could be here for even just a little while, making fun of me, telling scary stories and drinking Diet Coke.
More than anything, I wish that I could hear her voice again. But although she had a towering personality, she was shy of the camera. There are no film or video recordings, and only a few snapshots of us together.
On her last visit to New York she wanted to go through the box of family photographs. She wanted to tell me the names and stories, promised that I could write it all down. But we ran out of time. Now she is just another face in that box. The people in the photographs are all gone.
I’m the only living person who remembers this day at Point Defiance:
Helpful hotel amenities guide.
Intriguing! But instead of spiritual illumination, it actually translates as “variations on bottled tea and juice.”
Campus Family Weekend has arrived once again! We rented a minivan and filled it with Sonja (one of the youngsters who lived in our house during the college field work term, who has a freshman sister to visit), and Sara and Allan, friends from Portland by way of London. They, miraculously, have a freshman daughter living in the dorm room across from our senior son.
It is my lifelong assigned job to entertain the driver with stories, which are of course entertaining, albeit sometimes problematic. Car rides, especially long tours down country roads, tend to bring out my more macabre reminiscences. All of these people have known me for years, but I doubt they are ready for the words that will tumble out of my mouth. I’m never talkative at dinner parties, but put me in a rattling metal death pod and gosh, do I have a lot to say.
Road trip – buckle up!
The thirtieth anniversary of the car accident happened in August and, for the first time, I didn’t notice.
When I realized that my internal calendar had not prompted the usual torrent of memories, I didn’t feel relieved, better, healed. I just felt a different kind of confused bereavement: experiencing the anniversary was painful, but losing the anniversary is a different kind of grief. I don’t want to forget that day. It is too important, I’m the only witness, and the anniversary was the only time I allowed myself to remember.
If I concentrate, the facts are still there to be recited, and I still have panic attacks. But I rarely allow myself to talk about it, think about it, dream about it. This causes practical problems: during a recent oncology appointment a new doctor wanted to know why the scans showed historic evidence of five broken ribs, and I just stared at her, perplexed.
Though I guess I didn’t know that five ribs were broken. Some ribs, obviously, since my heart was damaged, but an indeterminate number. In 1988 I didn’t care about the broken bones, the smashed joints, the eyelid slashed open. I didn’t even understand that a fractured pelvis was significant until the fact complicated my first pregnancy.
The photographs of the accident site and our broken bodies are grotesque but not detailed, the immediate aftermath was too chaotic to keep track of all the injuries, and mine were trivial compared to the other people hurt that day.
The physical injuries were in fact minor compared to the rest of it. The accident took away our health, but also our youth, our optimism, our futures. We all survived, but thirty years ago that was not much solace.
Looking back I can see that I was one person before August 1, 1988, and an entirely different person after. Without the accident I might never have had the rage to leave home, the practical knowledge required to navigate the larger world, or the money to pay for the journey. The accident took away everything I cared about, but it also catapulted me into the life I have now.
Time might not heal all wounds: some will get worse. But the edges of this trauma are eroding. I can feel the fuzz in my brain, taking over the places where I used to store the metallic smells and sounds from that day.
Thirty years is a long time to carry the memory of broken glass and blood.