Tag Archives: Lyme Disease

To All the Attention Seeking Drama Queens

In January 2002, my mother learned her transplanted kidney had begun to fail. She began dialysis. We spoke on the phone each night, and I visited her as often as I could. The mother I had known, the jubilant mother, grew depressed and fearful.

I offered to undergo a test that would determine whether one of my kidneys could be transplanted into her body. I was 20-years-old. She begged me not to have this test. She didn’t want to do anything that could compromise my chances of becoming a mother.

That is how much motherhood meant to her. She was willing to die in order to prevent me from making this decision. And she had hope. She hoped someone else in her family would come forward.

To my knowledge, no one did.

I write those words with tremendous anxiety of how they will be read: No one did.

My mother’s story is complicated. Perhaps someone came forward and she never told me?

Even so, she could not survive another transplant. Her death was inevitable, and within months of undergoing dialysis my mother began to accept this reality. For the first time in her life, she rejected the false narratives of cure and recovery so often projected on the seriously ill.

But I still harbored delusions. I called delusion hope. I pleaded with members of her family to understand the seriousness of her situation. I wasn’t ready to give up, to let her go. I believed she could recover, as she had recovered so many other times before. Others did not believe my mother was actually sick.

A relative told me my mother was exaggerating.

She said, “Your mother is a drama queen.”

She said, “Your mother likes attention.”

My mother was not a drama queen. She lived with a debilitating chronic autoimmune disease from adolescence through middle age. She was beautiful. She was sick. Because she was beautiful and sick and female, she fell prey to cultural biases that fail to acknowledge serious illness in young women. When people looked at her they saw pretty. They saw young. They saw stylish.

As my mother’s health deteriorated, I ignored her pleas. I had the test done. It was a simple blood draw – I barely remember the needle prick. In the blur of her multiple hospitalizations, and my struggle to perform normalcy as our lives collapsed, the test was not a big deal. Just one more errand.

My results came back after she died: I was not a good match. My kidney would not have saved her.

I was off the hook. I’d tried. She’d known I’d had the test. She’d known I was willing to give her a vital organ, even if that choice compromised my ability to become a mother. She knew I believed her. I had not abandoned her.

I’ve been remembering this time in our lives recently because of my own experiences of not being believed about illness in the past few years. I have also felt abandoned by friends and family who do not communicate with me in meaningful ways about Lyme disease, for which I am still being treated  — and this treatment takes a physical and emotional toll. To many, it is as if I am not sick at all, as if my illness does not exist because I present as able-bodied.

Is my illness easy to erase because I am young and female? Or because I am capable of holding down a job and publishing writing, so I cannot have a serious illness at the same time? Or is it because I typically do not perform a sick identity on social media?

Or maybe, I’ve just needed too much, and my needs are exhausting. Autoimmune disease. A miscarriage. A broken foot.  And then, out of nowhere, Lyme disease?

Maybe I am now perceived as the attention seeking, drama queen.

But I am not an attention seeking drama queen. Attention gives me anxiety. And drama?  Who has time for that?

Fatigue from Lyme disease and my current treatment plan means a lot is changing in my life. I cannot engage in relationships in ways that are expected of young women. No late nights. No long drives. I have to say, “No” a lot. Perhaps my “No” is heard as disinterest and not as self protection. Perhaps people think I don’t like them.

My mother gave me tools I would need to navigate chronic illness in my own young life.  She taught me I could say the word ill and the word did not have to be a negative, a reduction, something to resist or erase. Even now, she is present. She is parenting me when I need her the most, showing me the way.

Long ago, she told me illness would distill my relationships.

“You will know who your friends are,” she said. And she was right. I am figuring out who I can depend on and who I should let go. I am asking myself new questions.

Who will I become? How will illness change me?

That’s the keyword. Change. Lyme disease has remapped my body. I have no delusions of cure, of going back to who I was before. Healing is a complicated idea, not a portal to our past selves.

As Cheryl Strayed has written, “Healing is a small and ordinary and very burnt thing. And it’s one thing and one thing only: it’s doing what you have to do.”

What I have to do now is be honest. Be real. Set boundaries and hold tight to them.
Rearrange a life where I’d once felt comfortable. Advocate for what I need. And then, let go of stories, people, goals, relationships, identities, and expectations that no longer support the person I am becoming because I am ill.

This is not about needing attention or being a drama queen or even pessimism. It’s about surviving and reclaiming and persisting.

Getting “Closer to Fine”

My friend Anne and I saw the Indigo Girls at Wolf Trap in 2015. I could barely move that summer, and going to the concert was a big deal. Before we went, Anne told me she’d ridden her bike to a pool, swum laps, and read a book that day. I couldn’t believe it – like, she could sustain concentration long enough to read a book? When was the last time I’d read a book? Swimming and biking were beyond me, so I didn’t even think about them. The book, I fixated on that. Reading seemed like something I should be able to attain – I have a master’s degree in English Lit. I’m a professional reader. And yet, when Anne spoke to me, reading a book from start to finish seemed as impossible as climbing Mount Everest.

The month of the concert, a weird rash had erupted on my legs. Before the rash appeared, I’d been following my father around Cleveland Metroparks, climbing railroad bridges and doing other outdoorsy things that would have made my mother panic, if she were still alive. I didn’t think to check myself for ticks – I don’t know why. I just didn’t. I was caught up in trying to understand my father’s boyhood, the events that made him the man he became. I was writing my way closer to him, and I did not think about myself. (This is a pattern.)

A few weeks later, I wore shorts and sandals and hiked around Multnomah Falls with Carl. I didn’t check myself for ticks there either. I was having a spiritual experience, completely blissed out on the woods and Portland. Why on earth would I stop and look for ticks?

And then, the rash appeared. Weird pinprick splotches on both calves, just below the knees. It looked like I was bleeding under the skin. And my GP tested me for Lyme and told me I didn’t have Lyme, even though I was too early in the testing window to know. And I didn’t know enough at the time to even know that detail I have just written. My doctor alluded to chronic Lyme as being a completely made up thing, the medical equivalent of a unicorn. Only crazy people had chronic Lyme disease.

I tape recorded him as he spoke because I didn’t trust him. Or I didn’t trust myself.

On the recording, I sound so smart and confident, completely opposite of how I felt in the moment. I do not sound like a person who tape records a doctor because she’s afraid he’s gaslighting her, because gaslighting is what she expects from men in authority. I sound like a person who is relieved because the doctor tells her what she wants to hear –– she’s healthy.  So she ignores all the terrible symptoms that wax and wane and escalate. They are all in her head. They are hormones or hysteria. They are something else and something else and something else. She accepts his version of reality at the expense of her own. (This is a pattern I’m learning to break.)

Anne came with me to a follow up appointment because I needed someone else in the room, and that night we saw Indigo Girls.

We sat outside, our feet touching the grass. We drank wine and ate chocolate and sang “Shame on You” and “Closer to Fine” and “Galileo,” and so many songs that spoke to us when we were younger and had no clue how our lives would unfold. When I think about that summer, I don’t think about all the hours I spent in bed, confused and scared. I think about that concert, about the songs of my past that held such promise for my future.

I’m writing a spiritual memoir and am getting closer to finishing — or “Closer to Fine” – as Anne wrote on Twitter the other day. My treatment for chronic Lyme disease is working, even if my symptoms are still scary and still make me feel like I’m losing my grip on reality. Chronic disease can also feel like gaslighting. I don’t trust my perception of reality. My perception of reality is distorted by a disease that impacts my senses and central nervous system.

This week, to calm myself, I watched Indigo Girls performances from the 1990s, and I rewrote the first chapter of my book, which is about what it means to trust in the multiple paths that carry us forward.

At the end of the 2015 Wolf Trap concert, Indigo Girls sang “Closer to Fine,” a song from their second album, a song that has defined their career. This song is also about what it means to seek, to trust, to take refuge. There’s more than one answer to these questions. 

The chorus of “Closer to Fine” inclines toward the mountain top, the “look out,” but my spiritual awakenings have always begun on the ground. That’s where I go to meditate, or where I lay when I’m too tired to stand. On the ground, I let go of ego and expectation.

This week, I was so tired, I fell asleep on my meditation cushion. I found myself thinking of that song title, the words Anne tweeted –– Closer to Fine –– about how writing and spirituality can be a movement toward something, but not a finish line. This isn’t the answer I – or my students – want to hear, but it’s a liberating truth I need to hear. In this confusion, or darkness, my friends light the way on the journey. They remind me that wandering isn’t the same as being lost.

Indigo Girls 2015
Anne & me seeing Indigo Girls in 2015

 

 

A Year of Revelation

My mother’s mother, my Bubbie Fran, watched me frequently when I was a child. Once, while eating scrambled eggs, I reached for the salt shaker on her kitchen table. My grandmother swatted my hand. I looked up at her furrowed face, and my own face contorted in confusion.

“Why did you do that?” I asked.

“Salt is poison,” she told me, while stirring two fizzy saccharine pills into her otherwise black Folgers.

There were other poisons in her apartment, too. Sugar. Fat. Cholesterol. From my grandmother, and ultimately my mother, I learned that food could be dangerous and even deadly. My mother reinforced a contradictory food message each time she had an insulin reaction, when only sugary foods could save her. In ordinary time, these foods were forbidden: cookies, candy, sodas. But they held the power of God each time her blood sugar dropped.

We both internalized the belief that the worst thing a woman could be was fat. Our bodies were our currency, and thin bodies made us visible, gave us back the sense of control we lacked in our lives. For years, I was thin, and I took my thinness for granted. I believed being thin made me better, made me good, made me worthy. I think differently now. After years of food restrictions, I refuse to deny myself pleasure. I refuse to limit what brings me joy. I’m at the top end of my weight range right now because I take pleasure in eating. I cannot control whether I get sick, even while eating foods I used to fear. That has been the hardest and most poignant lesson of 2017. I am not at fault for my illnesses. Neither are you.

________

Here’s a list of all the foods I’ve eliminated over the years:

  • Sugar
  • Salt
  • Dairy
  • Soy
  • Alcohol
  • Caffeine
  • Grains
  • Raw cruciferous vegetables
  • Fruit

________

Restricting my diet escalated my anxiety. I could rarely eat with other people. I missed family holiday dinners because I feared not having control over the menu. Once, on a meditation retreat, I awakened in the middle of the night in a sweaty panic about quinoa. By restricting my diet, I thought I could cure myself from an autoimmune disease and other mysterious medical symptoms. This line of thinking, while quite common in our culture, is also a form of victim blaming. I believed what I ate made me sick, and I believed what I didn’t eat could make me well. I believed I had power, and I believed I didn’t have power. If I ate the wrong foods, I deserved whatever ills befell me. Food could be a miracle cure, and food could be poison.

I am not alone in my beliefs. Morality and magical thinking have long been associated with eating ––  take it all the way back to Genesis ––  and many women are taught to reduce food intake, to deny ourselves the pleasure of eating in a culture that denies or seeks to limit our power. Also, our oldest stories, our fairytales, imbue food with danger and magic. We are taught to feel shame when we indulge in the pleasure of eating. And when we do not feel worthy of food, we do not feel worthy of pleasure or joy.

________

Earlier this month, a new female physician listened to my mysterious symptoms, viewed another rash spreading across my neck, and said, “I think you have Lyme Disease.”

I laughed. But it turns out she was right.

The last time I pulled a tick off my body was in 2011. I’ve had a handful of bizarre rashes, but never a bull’s eye. And my former GP tested me for Lyme in 2015. Although my labs showed some abnormalities consistent with Lyme, he dismissed my symptoms and the results. In retrospect, he should have ordered repeat tests, as my abnormalities and symptoms were consistent with an early infection.

My new labs showed no autoimmunity, and no abnormalities associated with an autoimmune disease. Despite the fact that I’ve been eating all the foods on my forbidden list for months, my thyroid health is improving.

2017 has been a year of revelation.

Food did not make me sick.

Food could not make me well.

________

The other day, I saw a meme circulating Facebook. The meme pleaded with women not to make New Year’s resolutions to lose weight, and especially not to talk about weight loss goals in front of their daughters. The meme asked women to consider eating as a means to a nutritional end, a practice in body love.

If only our lives were so simple. I know many women who want to follow this logic, who’d love to follow this logic, and yet food and our bodies are so fraught with anxiety and contradictory messages, that we don’t know how to start to free ourselves. We have been given few tools for fighting back against a culture that frequently diminishes our bodies, our habits of eating.

I am by no means cured from my food obsessions, and I still fight against the desire to restrict food. I fear that my diet will be restricted once I begin long term treatment for Lyme Disease, but I hope I will advocate for myself in new ways in 2018. I will not follow a doctor’s advice without doing my own research or seeking a second opinion.

I want less resolutions, less restrictions.

I want more revelation.

We cannot control what happens to us. We can only surrender.