Tag Archives: storytelling

There Is No Hiatus

I put this blog on hiatus in November 2018. I hadn’t posted in two months. I was working on other things. I thought I was clearing space to finish my book. I thought this blog was a distraction. I thought I’d get back to my book once I finished a few essays I’d committed to writing. I thought my Lyme Disease was under control.

But I didn’t get back to my book.

I wrote book reviews. I wrote grant applications. I applied to graduate programs. I wrote essays.

These were essays I needed to write. Without them, I wouldn’t be able to finish my memoir. With each essay, I saw the memoir’s possibility expand. I uncovered truths this book needed. I have a complicated process. Essays are part of that process. I told myself to follow the process. I’d get back to the memoir by spring.

But I didn’t get back to the book. In late February, I developed arthritis in my hands, with the worst symptoms concentrated in my left hand, my writing hand. I wondered if this was my body’s way of trying to shut me up? Of saying, don’t tell?

 I knew those questions were nonsense, but they were also important. They triggered my rebellious spirit. They reminded me to keep going. Bad things don’t happen for a reason. They just happen. To everyone.

My arthritis was just one more thing in a series of unfortunate things. But I remembered how I’d traveled alone to New York City the week of my Lyme diagnosis. I had dinner plans that weekend. I had a ticket to see “Tiny Beautiful Things” with my friend, Elizabeth. I was not going to cancel. Still, there was a moment when I lugged my suitcase through fresh snow in downtown Brooklyn when I wondered if I’d made a mistake. My legs wobbled as I walked. I could barely feel them.

But that weekend was also glorious. Elizabeth and I laughed and sobbed through the play, then met our friend Erika for dinner at a restaurant with the most beautiful pink walls I have ever seen. My friend Lauren showed me how the Manhattan skyline sparkled from a particularly snowy corner of Brooklyn. I also ran into my friend Javier, who I hadn’t seen since my mother died. We met for coffee my last morning in town, when we reminisced about our long-ago time as interns in D.C., and what had happened to us since then. I don’t regret this trip. At all.

I called on this same rebellious  adventurous spirit one morning in March while I drove to a writing workshop. As I wove through rural New Jersey, my wrists burned. I had never experienced this kind of pain before. It felt like someone was snapping a rubber band against my skin over and over again. It felt like someone was holding a lit match to my wrists between each rubber band snap.

This is bad. I said to myself. And I still thought the pain would go away on its own. I am so good at denial. Or hope.

 That night, I stood in the workshop host’s kitchen and told her what was happening. She opened a prescription bottle and gave me one tablet of Meloxicam. After swallowing the butterfly shaped pill, I slept without pain. Until the Meloxicam, I hadn’t realized how much space pain took up. I didn’t understand how pain took up energy I needed to sit at a desk for hours and write. I didn’t know how consumed I’d been by pain until I had a break.

When I awakened, snow covered the farm where the workshop was held. I walked around the cottage where I was staying and took photos of the gleaming countryside. Without pain, I could appreciate the beauty in front of me, the sense that I’d fallen into an Andrew Wyeth painting. I am always hushed in the presence of snow.

Then I realized I had to do something to manage the pain. How else would I finish a book?

The next week, I sat in a doctor’s exam room. This doctor was the one who had said, “I think you have Lyme Disease,” the first time we’d met. She’d ordered my tests. She’d diagnosed me over the phone in December 2018.

The diagnosis came five months after a pregnancy loss. Before my diagnosis, I had hoped to start trying again for a baby in January 2019, when I was 36. Instead, I began my first tri-antibiotic Lyme protocol. This past February, when I turned 38, I was down to two antibiotics and more than a dozen supplements. I swallowed upwards of 40 pills per day. I’d started to wallow too. In the doctor’s office, I cried. I don’t know why, but Lyme makes me cry harder, messier. Once I start, I can’t stop for a long time.

“Do you think you’re depressed?” My doctor asked.

“Who wouldn’t be depressed?”

Who wouldn’t be depressed?

In my doctor’s warm exam room, beneath paintings of New Orleans’ Jackson Square, I repeated the story I tell about my Lyme descent. It starts with an ER visit in July 2013 when I was 32. It meanders through years of doctor’s offices, lab tests, blood draws, and so much mansplaining. It always ends with the same line: I lost my childbearing years.

What a convenient story. There are clear heroes and villains. There’s a linear structure, a rock-solid timeline for childbearing. It’s a story that says the most important thing I could have been doing in my thirties was childbearing, mothering.

The problem with this story is that it ignores the essential things I did in my thirties, the ways I birthed myself. In those years of decline, I established my career, finished a degree, bought a house, strengthened my marriage, published, taught hundreds of students. I fought hard for myself.

I am undeniably different because of Lyme. My life is different, changed irrevocably. Going off gluten, dairy, sugar, and alcohol is really hard. Last night, Carl ate one of my favorite candies in front of me and I wanted to claw him. But I didn’t. I love him!

I’ve struggled for a few days with the question of how much to share on this blog, whether I should begin again, whether a hiatus is a good thing for me. I wanted to look “hiatus” up in the Oxford English Dictionary and interrogate its etymology in a way that would support my fear that the only hiatus in life is death. I realized it’s okay for me to have this fear, and I don’t have to validate myself with the OED.

This morning, I woke up at 6:00 a.m., fed the dogs, then climbed onto a bike I bought years ago with money I earned from travel writing. I rode down empty, golden streets while this blog wrote itself in my head. I couldn’t stop it. Why should I stop it? I don’t believe I’m on a hero’s journey, or that my illness makes me stronger or weaker than the person I was before. But it is giving me more to say and a greater sense of urgency. I’ve never been good at holding back. Or performing a different life than the one I live. Words, like truth, find a way.

So the blog is back on. The book is back on. Thank you for caring enough to read.

 

 

A Course in Healing

1. No one wants to be here, and here we are. Exactly where we’re required to be. So welcome to an experience you never asked for. Welcome to an experience you did not choose. Welcome to “A Course in Healing.” I’m glad you’re here.

2. By the way, the word “glad” (above) is an example of the feigned positivity that will become a norm of your grief experience. Get excited. That was example No. 2.

3. There are no clear learning outcomes for this course, although learning will soon be projected onto your experience. “What have you learned?” People will ask in clipped, expectant tones.

4. “Misfortune is a great teacher,” they will say, and you will learn how to nod wordlessly.

5. It is considered bad form to respond, “I have learned that in the face of my discomfort, I am expected to comfort other people.”

6. It is equally bad form to say, “I have learned that when people ask me how I’m doing, I must say something like okay or fine because those are the only acceptable responses.

7. Do not say, “Sometimes I sit in a dark garage and weep.” Do not say, “I configure my day around ‘Growing Pains’ reruns.”

8. In short, during “A Course in Healing” you will learn how to be a good faker. Some people will even say faking is a key ingredient to your healing. We will cover this dynamic during our unit on Erasure.

9. It’s okay to wonder why the expression of vulnerability upsets the relationship non-grieving people have with permanence and/or the performance of happiness.

10. You may have figured out by now that “A Course in Healing,” should be renamed as “A Course in Lying.” I have brought this suggestion to the Curriculum Committee, and its chair reminds me that “lying” doesn’t resonate, but “healing” has cache. Healing is rainbows and holidays and sparkly love magic. Grief is blech.

11. Now you might be wondering: “Will there be any tests?”

12. Each moment of your life is a test, and there are no grades. Only choices and questions. You pass no matter what choices you make. You pass even if you choose to eat potato chips for every meal, even if you listen to that one Jeff Buckley song until the CD player skips.

13. There is no extra credit. At the end of this course, you will not be a better person. You will be a different person. You might be a person who can tangle with competing truths. You might be better at letting go of appearances, other people’s expectations, your own miscalculated dreams.

14. If I do my job well, I will impress upon you that there is no bright side where your pain fizzles out forever. There are black holes of sorrow. There is dark matter we live inside of and between. There are moments when we wish to disappear forever, if only to stop the pain.

15. There are the people we would have been without our losses, and there are the people we become because of everything we have lost.

16. There are the futures we claim.

17. There are the dreams we rewrite.

18. Take me as a case study: Before my mother died I kept a diary. My college roommate gave it to me one Hanukah. She wrote a quote from Oscar Wilde inside the front cover. “I never travel without my diary. One should always have something sensational to read on the train.”

19. And that is what I thought life was back then –– sensation for the taking. A nonstop adventure romp. The long weekend between adolescence and middle age.

20. I was twenty and twenty-one in the last years of my mother’s life, and I wrote sad poetry in that journal. And I wrote about boys I thought I loved, who maybe loved me, who didn’t love me as much as I wanted them to love me.

21. And I wasted my time with these boys. Wasted my worrying. And then my mother died, and I lost interest in boys. I ignored them, avoided them, until I fell hard for a man I never expected to meet. He lived an ocean away. But I wrote to him every day the way I’d once written to my mother. And he wrote back to me.

22. “Hi Sweetie,” his e-mails began. It was the same cheerful salutation my mother had used daily with me. In my first year without her, this man was sunshine pouring down after a night where I believed I’d never see light again.

23. He was the first proxy I made for my dead mother, and he would not be the last.

24. Even though it was not his job, he championed me the way my mother had. He made a big deal of my birthdays. He said, “I love you” without choking. He mailed me mix CDs with heart wrenching songs I’d never heard.

25. He knew where I was at night and in the morning.

26. When we were together, he held me until I fell asleep, the same way my mother had held me long ago.

27. But –– but –– a lover and a mother are not the same thing. A lover cannot be a mother. Such a burden will crush the most sincere loves.

28. One night we both cried, and I boarded a plane alone. I can still hear the sound of my suitcase scraping the pavement on the way to the airport. I thought I was leaving him temporarily. But it turned out that my leaving was permanent. I just didn’t know how to say that yet.

29. I didn’t want to leave this man, and I had to leave this man.

30. I’d never find my mother in another person. If I wasn’t careful, my search for her would destroy every chance at love that came my way.

31. I could never save her.

32. I could only save myself.

33. When I walked away from a man I loved, I walked toward a life I couldn’t imagine, a life he could not walk for me no matter how much he wanted to. I had to walk alone, toward a motherless future awaiting me.

34. My mother taught me there are no escapes.

35. My mother taught me I could withstand being sucked back into the long, lightless night.

36. Her wisdom lived beyond her, lived:

  • in the cat I rescued a few months later, a stray I didn’t want but took, lived
  • in the man I married, and a home where I made my own light, lived
  • in the stairwell of a college, where I sat one afternoon with a student who told me about a man who hurt her.

37. When the student finished her story, I told her a story about my mother.

38. I told her courage means walking toward our worst fears, walking toward the truths we don’t want to say.

39. Then we both walked toward the counseling center.

40. Each time I listen to another person’s hard story, each time I tell my own hard story, I carve another notch on the shrine I built for my mother, a shrine called memory, a shrine called love.

41. Healing is a word I avoid. I’d rather be changed, remade, reborn.

42. I’d rather hold a broken heart in my upturned palm, marvel at a heart that beats in spite of its cracks.

43. In this course, we will be who we are. We will be everything we are afraid to say. We will be the whole story of our pain.