Tag Archives: resilience

On Not Being Afraid

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.

Difficult Choices

As a younger person, I lived in terror of making the wrong decision. When my mother was still alive, we’d dissect every option in front of me before I had to decide. I’d call her a handful of times a day. Tell her my problem. She’d steer me in the direction she wanted.

You belong here not there. You should do this not that. Make a list. Evaluate.

Hearing her tell me what to do provided tremendous relief. She was my mother. She wouldn’t steer me wrong.

But she was just guessing too. She was relying on her instincts, her biases, her fears, her expectations of who I was and who I should be. She was not teaching me how to make choices on my own, or how to be confident in my ability to discern what’s best for me at a given time. This dynamic is 100 percent normal.

Becoming an adult means learning how to steer your own ship.

No one can predict the outcomes of a choice. Sometimes choices can feel like life or death. Sometimes they are life or death. And yet, we have to decide. We have to go left or right or backwards or forwards or nowhere. We have be uncertain. We have to not know. We have to wonder and guess. We have to Google and stop Googling.

Being human is hard.

A therapist I used to see told me there were “no wrong decisions, only choices.” There’s truth in that statement. It’s also a little bullshitty. There are wrong decisions. We usually know what they are, even if we rationalize them. I’ve made a handful of terrible decisions. Sometimes I regret them. Sometimes I don’t.

I’m being vague in this post because there’s a difficult choice I need to make by summer’s end.

I will not go into the details. I will only share that this decision involves treatment for an autoimmune disease I have developed either as a result of Lyme, or concurrently with Lyme.

Thank you for not asking me for more information. Thank you for not saying “Get well soon.” Thank you for not talking to me about “getting control of inflammation.” My bloodwork shows no inflammation. I have worked so hard at getting control of inflammation.

Thank you for not foisting miracle cures or supplements or prayers on me. I’ve read the studies, the latest books. I’m an expert researcher and a smart person. I can understand and negotiate complexity.

Thank you for respecting my right to process difficult experiences through writing and to make decisions regarding my own medical care. Even though I am overwhelmed by this news and the choice I must make, I trust my ability to steer my own ship.

I do not feel sick. I do not identify as ill. I run multiple times a week at 6:00 a.m. I ride my bike whenever I can. I lift weights and take long walks and marvel at beautiful birds whose names I don’t know.

I visit with friends and binge-watch historical dramas on Netflix. (This one’s so good!) I plan vacations and write syllabi and enroll in classes and work on my book, which I swear I will finish and publish.

If I seem a little bitchy or defensive today, it’s only because I want to share this news. It’s too much to hold on my own. But I also cannot hold how this information is received. I cannot manage other people’s ideas about chronic illness. Being an adult means holding your own junk without spilling it onto other people. Writing helps me keep a tight lid on my junk. Writing helps me remember I am strong.

The last night of her life, my mother and I talked by phone about a difficult decision I needed to make. We talked about her illness too, how she’d started dialysis at a new place.

“I’m going to be okay,” she’d said. That was the second-to-last thing she ever told me. It was one of her last gifts. Hope.

I’ve carried this gift when I’ve gone left or right or forwards or backwards or nowhere without her.

It’s the map I’ve read a thousand times.

It’s the lamp I turn on in the middle of the night when I can’t call her.

It’s the song I listen to when I’m deciding what to do.

It’s the silence between knowing.

And not knowing.