A few weeks ago a friend asked if I was afraid to go to Scotland this summer, given Lyme disease and all. Before she asked the question, it had never occurred to me to be afraid.
“No,” I said. “I’m not afraid.” And it was true.
But then I wondered. Should I be afraid? Am I stupid for thinking I can travel with one carryon and a backpack holding a few meds and a lot of supplements? What if something happens? What will I do?
I second guessed myself because that’s what we do when we are afraid.
We think X is worse than Y or better than Z or whatever. I remembered how I boarded a plane to Glasgow six weeks after my mother died. I’d called my friend Cori in the Newark airport because I didn’t know how to sit still or sit alone with my thoughts back then. I needed chatter and to be heard. I was terrified to board the plane to Glasgow, but I wouldn’t admit it. When the plane came, I got on it and sat next to a Scottish man who looked like Father Time and slept from take-off to touch down. Then I got off the plane and walked into the scariest and best summer of my life.
I didn’t take supplements back then either, but I was on birth control. Since 19, I’d been taking those little pills with me everywhere and swallowing them every morning. I have rarely not traveled with meds. I know how to travel with meds. I won’t be a person who believes a diagnosis means she can’t do something she wants to do. I do what I want. (Someone, buy me this T-shirt).
And then, in June, two rheumatologists couldn’t agree on what was causing the pain in my left hand, my left elbow, one joint on one foot. One thought I had nonserologic rheumatoid arthritis, but couldn’t understand why I had no inflammation and no other evidence of this disease in my bloodstream. The other said I had spondyloarthropathy, which I had all the symptoms for, and the genetic markers, and which also runs in my family.
The first doctor was cruel and condescending spoke loud and slow and said “don’t ignore this,” as if I ignore everything that scares me. The first doctor wanted to put me on drugs that cause cancer and blood clots and hair loss and said if I wanted to get pregnant I couldn’t be on meds and “would have to suffer.”
The second doctor immediately suggested the most gentle, pregnancy-safe treatment option and was okay with me adding a promising alternative medication at the end of the summer, prescribed by another doctor. The second doctor didn’t want to take away my chance to try again for a baby. The second doctor said, “You’re the boss.” So I went with the second doctor. I started taking sulfasalazine. I started feeling better. I started feeling like my whole body was cooling down from the inside.
This is not to say I didn’t spend weeks second guessing myself, googling everything there is to google about spondyloarthropathy, sulfasalazine, low dose naltrexone, Lyme disease and autoimmunity, etc., etc., etc. This is not to say I haven’t vented nonstop to Carl or my friend Aaron (who remembers my doctor’s appointments), or haven’t lost sleep, or haven’t messy cried, or haven’t gone to therapy.
I’ve also awakened at 6 a.m., laced up my sneakers and run for an hour, or biked for an hour, or lifted weights, or walked and walked until I remembered: I am strong. I am not afraid. I will not be afraid.
In 2012 I read Cheryl Strayed’s memoir Wild the day it came it out. I was so excited to get my hands on this book. For the first time in my life, I saw someone like me on the page. Someone who’d lost her parents in different ways, who’d lost her home, who’d seen the words family and trust disintegrate around the same time I did. I saw someone who was fierce and relentless and who carried her dead mother inside of her always and forever. In Wild, she writes:
I knew that if I allowed fear to overtake me, my journey was doomed. Fear, to a great extent, is born of a story we tell ourselves, and so I chose to tell myself a different story from the one women are told. I decided I was safe. I was strong. I was brave. Nothing could vanquish me.
I made this my e-mail signature. It’s still the most true thing about me. Sometimes I want to tattoo “Nothing could vanquish me” on my arthritis arm. Maybe I will.
I don’t know what will happen when I board a plane to Dublin a week from today, then another plane to Glasgow. I know I still carry the scared and do-it-even-if-you’re-scared 21-year-old with me, and part of this trip is about her, about going back to the places she walked and saying: You were so brave. You did the best you could. You didn’t fail your mother or yourself.
And part of the trip is about making new memories, about showing Carl more about the life I lived before him, about showing myself adventures and travel aren’t over just because of a diagnosis.
The 21-year-old, the 22-year-old, the 23-year-old didn’t know a thing about forgiveness or humility or trauma. But the 38-year-old has made understanding these things her life’s work. She’s got this. Trust her.