I’m back home after my vacation in Iceland.
Just writing that sentence gives me a thrill. Not the “back home part,” but the “vacation in Iceland.”
I thought my traveling days were done—just like my hiking days, my cycling days, my having-another-baby days, my independent days, my life-as-it-once-was-before-sarcoidosis-came-and-changed-everything days.
A little over a year ago, I was lying as motionlessly as possible in a narrow bed in the hospital. Any movement—even breathing too deeply—caused the pain pooled in my head to well up and then crash down on me like a tidal wave. The pain came with vertigo that made it feel like the room was swirling around me. Opening my eyes brought on nausea akin to sea-sickness. Even worse, were the times I opened my eyes and saw nothing but a terrifying and total whiteness. Without warning or any discernable pattern, my vision blipped out, sometimes twenty times a day.
The doctors knew that neurosarcoidosis was causing the pain, vertigo, and periodic blindness. Since 2007, they’d been blasting my immune system with chemotherapy in the hope of chasing the disease out of my cranial nerves. I’d made it through a grueling year of getting chemo every other week by telling myself that I’d beat this disease if I was tough enough and wanted to be cured enough. I put all my energy into making it through chemo and vanquishing sarcoidosis.
By the time I was hospitalized last February, it was pretty clear that if anyone was getting vanquished in the battle of Rebecca versus Sarcoidosis, it wasn’t the disease. I had given it my all, but it wasn’t enough. I would never improve. I had lost. I’m not a quitter by nature, but I was exhausted, out of hope, out of juice, out of fighting spirit. And I was out of treatments. I’d swallowed or gotten injected or infused with Prednisone, Methotrexate, Enbrel, Remicade, Thalidomide, and Cytoxan. Not one of these immunosuppressants had been able to do much more than slow the onslaught of the disease.
And so I lay in the hospital bed waiting for the end. It probably sounds pretty clichéd, but there you have it. I was in so much pain, and so tired, that I was done. I didn’t feel particularly sad, as I lay there. I wasn’t thinking anything along the lines of, “Well, it’s been a good life, and I sure will miss Jay and Andrew. But you beat me, sarcoidosis.” I was beyond thought and beyond emotion. Sickness and pain will do that to you. They’ll strip away your feelings and leave you blank.
It took more than exhaustion and pain to bring me to that thoughtless, emotionless moment of quitting. Getting to that point of not caring if I kept on living happened only after years of sickness eroding my sense of myself. It’s hard to understand if you’re not in Chronic Town. Without quite realizing it, the illness devours all the parts of you that aren’t directly connected with fighting or succumbing to the sickness. Imagine your dreams, ambitions, and habits as deer or some other herd animal that have wandered down from the timber into a valley to graze. Then picture sarcoidosis or cancer or some other pestilence emerging from the forest, like a tiger or a mountain lion, hungry for fresh meat. The predator takes the outliers first. When you’re in a battle for your life, you’ll sacrifice the outliers—the aspects of your character that aren’t related to the fight for your life.
By the time I was huddled in that narrow hospital bed, I had sacrificed much of myself: I wasn’t a writer anymore. Or an avid hiker and cyclist. Or a mother to Andrew. I wasn’t Jay’s partner. I wasn’t a daughter or a sister or a friend. I wasn’t a traveler who had roamed through rural Thailand and climbed the steps of Angkor Wat. I wasn’t the woman who had lived overseas on a small island in the Pacific Ocean. I wasn’t dreaming of getting published the New Yorker. I wasn’t someone who loves reading noir mysteries and poetry. I wasn’t clever with words. I wasn’t funny. I wasn’t in love.
I was just a woman with a disease rampaging through my brain. I was in pain. I wanted nothing more than relief. I would have given up my son and my husband for the pain to stop for an hour.
Thankfully, I got a chance to reclaim myself. My doctors came up with another medicine called Rituxan for me to try. It’s not like I was suddenly cured, but I have improved slowly and steadily for a year. I’m not in remission. I refuse to even think in those terms anymore because getting well is a lot more complicated than the dichotomy of sickness/remission lets you accept. I still have days when pain, vertigo, and blindness knock me on my ass. I’m also awfully out of shape from so many months in bed, and my compromised immune system means that I catch every cold or flu Andrew brings home from school. But I’m doing much better than I would have dared to hope last year.
As I’m getting healthier, I’m coming alive again. I’m rediscovering the parts of my identity that I had to scuttle in order to survive. Now that I’m not marshalling all my resources into the fight against sarcoidosis, I can spend energy writing, reading, practicing piano, drawing with Andrew, cooking Thai food, taking slow walks with Jay. And traveling.
Thinking of myself as a traveler was an important part of my pre-sarcoidosis identity. Jay and I lived overseas and traveled extensively around southeast Asia before Andrew was born. We were able to take Andrew with us to Thailand when he was two, but then I became too sick to make any trips that weren’t to see sarcoidosis doctors. I can’t explain why traveling was important to me, any more than I could explain why I like writing or cooking, or why I prefer nectarines to peaches. I simply love arriving in a new place, finding my bearings, walking through crowded streets where I don’t know a soul or hiking on a trail through totally unfamiliar terrain. I love tasting new food and learning new customs. I love getting lost in a new city and then finding my way. I love how even light and air can look and feel different in new places.
Traveling can be addictive. It certainly got under my skin. I cried for three days in a row when we had to return to the US from Palau—the small archipelago of Pacific islands where we lived for 18 months. The only thought that kept me sane during the culture shock that came with re-entering life in the US was that we would do it again—we would move abroad again. I got pregnant with Andrew just a few weeks after we got back to the States. But having a child didn’t seem like an impediment to us traveling and eventually living overseas again. Rather, it would be doubly important and triply fun to show our child how vast the world is, how unique each little part is, and yet how alike we all are. Jay and I decided that by the time our as-yet-unborn child was in first grade, we would be living somewhere like China or Vietnam.
But except for that one trip to Thailand, the only traveling we’ve done as a family is to see sarcoidosis doctors. As with so much else that got lost to sarcoidosis, I intentionally didn’t think about not being able to travel. I pivoted my focus, tossed the dreams of hiking in Nepal or backpacking in Iceland overboard so that I could kick ass in my fight against my disease. I would not let myself be sad or even disappointed at what I had to give up.
When we first got the idea of going to Iceland (by discovering an extremely cheap airfare and hotel package), and I realized that I was probably well enough to make the trip, I didn’t get excited. I didn’t tell myself, “Finally! I can return to doing something that I love!” Instead, I was scared. What would happen if I caught something on the airplane? What if my sarcoidosis flared in a strange country? What if I needed to be hospitalized? What if my foot bones broke or ankle ligaments snapped again? What if the customs agents confiscated my medications? I worried about disappointing Jay and Andrew by needing to go slowly. I wouldn’t be able to charge up mountains on 20-mile hikes, like I did on our trip to New Zealand before Andrew was born. I would need extra rest and help, as well compassion and caring from Jay and Andrew.
I didn’t express to myself the source of these peripheral anxieties. But I was able to articulate it to myself once we’d made it to Iceland. What if I tried to travel again and failed? Wouldn’t it be far more devastating to try and reclaim a part of my life and discover that it was gone forever instead of staying home and keeping the possibility open that someday I’d travel again? It’s easier in some ways to live with past memories of how good things used to be before I got sick than to dive into the life I now have.
Reclaiming myself means figuring out ways to live with my disease, instead of giving everything I have to fighting it and then waiting for it to disappear.
I’ve said that living in Chronic Town means learning to live fully the life you have—not the life you want to have, or the life you think you should have, or the life you could have had. Of course, it’s always easier to proclaim lofty sentiments like this than to put them into action.
But I’m proud of myself for trying—for pushing aside my worries and perfectionism enough to make the trip. I had faith in myself, faith in Jay, and faith in Andrew. It was amazing. It was a wonderful trip. Certainly, it was also a new kind of trip. No scaling mountains or kayaking marathons. But we did have seven beautiful days exploring a place I quickly came to love. And I rediscovered how much I love traveling, no matter the limitations. I can’t wait to go back.
Making the trip was like finding a way back to who I am, or finding a new way into myself. It was leaving that led me home.