Tag Archives: Lyme Disease

Waiting

My mother waited more than 1,000 days for her organ transplant. She went from 39 to 40 to 41 while she waited. On her hip, she wore a black pager that would beep when her organs “were ready.” This was the expression she used, as if her organs were a steak sitting in the oven, not quite pink enough to eat. I realize that’s a gross image, but it’s what occurs to me when I remember the absurdity that was, at the time, so very normal for all of us.

Her organs were ready on June 6, 1994, the tail-end of my seventh grade year. That summer, I listened to Nirvana nonstop and wore a flannel that belonged to my best male friend. I wore the flannel as we drove to the hospital – no school for me that day! – and the chorus of “Heart-Shaped Box” rattled around inside my head. Hey! Wait!

I barely understood the song. What was the “broken hymen of your Highness?” But Hey! Wait! I got that. Those two words meant exactly what I felt as we raced toward Baltimore.

They meant a thing and its opposite could be true at the same time. Hey! Wait! And I was stuck between a thing I wanted, which was also the very thing I didn’t want.

Hey! I did want my mother to have an organ transplant because she’d die without one.

Wait! What if she died in surgery or right after?

I’d seen “Steel Magnolias.” I knew the organ rejection drill. My mother’s match wasn’t perfect. Anything could happen. I could have a mother in the morning and be motherless by nightfall. This knowledge was the one true fact of my girlhood.

Hey! Wait! Don’t feel bad for me. I don’t feel bad for me.

________

A few weeks ago, I drove past the hospital where my mother had (and survived) her organ transplant. Each time I drive past this hospital, I go back to June 6, 1994, to Nirvana, to the flannel scented with Polo cologne, to the wild ambivalence of those moments.

Ambivalence. I used that word incorrectly for years. I used to think ambivalence meant not caring enough. Do you know most people use ambivalence incorrectly?

But “ambivalence” comes from two Latin words. The first, ambi, means “both or on both sides.” The second, valentia, means “strength.”

Put those words together and you have ambivalence. It means caring too much on either side of an issue, and being unable to choose because feelings are equal on both sides. You want and don’t want the same thing.

That’s where I was on the day of my mother’s organ transplant. That’s where I am now, nearly a year after my miscarriage and seven months into antibiotic treatment for late-stage Lyme disease.

If you asked me last summer whether I wanted a baby, I’d have screamed YES. I was so ready, so certain, so sure by the time I got pregnant, incidentally the first time I tried. At 36.

What great luck I had! How dumb my doctors had been! So glad I’d used birth control pills and insisted on condoms all those years! Phew.

The gynecologist who did my first ultrasound raved about my uterus. She used the word luscious. I did everything I could in that moment not to laugh until I peed the pants I was not wearing. But I also took pride in her comment. Despite how mysteriously ill I had been, despite the sudden autoimmune thyroid disease that depleted my once boundless energy, my body could do something right.

Until it couldn’t.

________

I did three things when I realized I was miscarrying. I apologized profusely to my husband, who was asleep because it was 1:19 a.m. He did not think I had anything to apologize for and did his best to console me in his half-sleep, half-shock state.

But my body had failed in the worst way it could fail. And I was guilty, because it was my uncontrollable body that had rejected a pregnancy we both wanted. So I said I’m sorry over and over again, until I finally went downstairs and did the second thing. I made myself a cup of peppermint tea because that was all I could do to keep myself from screaming.

The third thing I did was call my mother-in-law once the sun came up. I told her my miscarriage made me realize how very much I wanted to be a mother. No more second guessing. No more doubt.

Why wouldn’t I want a child? I had an incredible mother who mothered me in lasting ways that allow me to be generous and patient and kind. My students even tell me I’d be a great mother. I know I should hear that comment as sexist, but I take it as a compliment. Because they’re right. I have all the qualities needed for masterful mothering. Anyone can see it.

And yet, there’s another side of the choice.

There’s the body that doesn’t seem to work the way it used to.

There’s seven months of antibiotics and no end in sight and arthritis in my hands.

There’s relapse.

There’s the 30 pills I take per day.

There’s my thirty-seventh birthday that passed in February.

There’s thirty-eight on the horizon.

There’s the choice to wait.

The thing about waiting is that it’s the closest thing we have to purgatory on earth. Torture, and not quite torture. When we’re waiting, we want the waiting to be over, and we focus our attention on an end. We believe the end will be better than the waiting. But after an end is reached, another waiting will come, and the next waiting after that. And on and on.

Our lives are thousands of days of waitings.

And yet, I’ve chosen to wait. I’ve chosen to be ambivalent. I’ve chosen to say the word I now understand at the core of my heart: ambivalence.

I take the word the apart.  Let it enter me. Leave me.

________

I’ve told all my doctors not to discuss pregnancy with me, and I’ve found an endocrinologist who will treat me during pregnancy with the medications I need, but that no other endocrinologist will prescribe in pregnancy. Incidentally, he is the endocrinologist who treated my mother and recommended her for an organ transplant.

The day I sat across from him at his desk, I was all grown up. A college professor. A woman with health insurance and a home of her own. He didn’t remember me as the little girl who used to wait in his lobby or run down the hallways.

He remembered my mother. Of course he did. How could anyone forget her? I saw him on June 6, 2018, a detail that was coincidence but felt like magic.

I am happy as a childless woman just as I could be happy as a mother. How fortunate I am that happiness awaits me on either side of my most difficult choice. Hey! Wait!  Two opposite things ring true. Like on the day of my mother’s organ transplant. Like right this minute.

 

My Body Doesn’t Lie

Living with late stage Lyme disease is like being on bad drugs. I hear phantom sounds, smell phantom scents, get paranoid: Everyone hates me. Everyone thinks I’m weird or stupid. People say words to me. I hear them. I don’t always understand.

It’s excruciating to be a writer and to hear words floating by, and to be unable to grasp them.

In a meeting this week I said, “I’m having trouble following the thread,” which is a poetic way of saying, “I have no clue what all of you are talking about.” And I thought I saw someone in the room make a suck-it-up-stop-complaining-face at me. I don’t know if I imagined this, or if it’s part of my Lyme paranoia, but I felt shamed and embarrassed. Like I was being weird again & weirding people out. Like I should minimize my own needs for the sake of other people’s comfort.

There is another story of who I am.

That other story goes like this: I am a good friend and a patient teacher. I am smart and strong. If you tell me something hard, I will listen to you. I will protect your confidence. I will help you. I will not judge you or manipulate you with fear or anger.

Even on my bad days, I get a ton done. I support my students because they are everything to me. I take pride in the fact that I’m an overachiever, even as I recognize the multiple problems in that sense of pride. I don’t want to tie my self worth to my achievements, and I have been conditioned to tie self worth to achievements.

Lyme disease took away friendships, child bearing years, energy, hope, trust.

But it didn’t take away my ambition.

Ambition kept me going. Ambition made me fight hard for myself.

________

In December, I started one course of long-term tetracycline antibiotics. My primary care physician added another antibiotic at the end of that month, and I improved drastically. My Lyme specialist added a third antibiotic in February, and this is standard: late stage Lyme disease requires treatment from separate classes of antibiotics. Nothing has helped me more than multiple antibiotics and eliminating gluten from my diet.

Seeing myself respond to treatment is reassuring and counters the effects of gaslighting I experienced in other medical settings, where doctors dismissed and disbelieved my symptoms.

And I can’t stop talking about this shift, which I suspect is starting to annoy to some of my friends. Because I was silenced for so long, I have become the person who can’t stop telling the same chaotic story over and over again. I can’t stop talking about myself.

My story goes something like this: When my symptoms first presented in July 2013. I went to the emergency room, and I was not seen that night even though I could not stop vomiting. I never vomit, like not even when I have a fever. I kept saying something was desperately wrong, but a nurse said I probably just had “a little virus” (in the middle of July).

Staff placed me in a hallway so I would not distress other patients. I fell asleep. I stopped vomiting. I went home, and felt like Hell for weeks. A blood test showed irregularly shaped red blood cells, which I now know is a telltale symptom of my most pervasive Lyme co-infection: Bartonella.

I took four lessons away from this experience.

Lesson 1: Women who vomit uncontrollably are not sexy. We must, therefore, be hidden, ignored.

Lesson 2: Authority figures who dismissed my illness made me question my sanity, my sense of reality. I believed them at my peril. I believed their myth of okayness because I wanted to be okay, and on the outside I looked okay.

Lesson 3: My body doesn’t lie. I’m learning to listen to what my body needs to tell me. My body can be trusted.

Lesson 4: There are excellent doctors & there are super shitty doctors. Do not excuse or minimize the behavior of a super shitty doctor. Believe you can do better. Believe you deserve better, and you will find better. Get out of that practice, and don’t look back.

________

When I wake up and run three miles, when I vacuum my house after working all day, I know a somatic shift has happened. I know I can trust my perceptions of reality. My narrative is valid.

Right now, I am having more good days than bad days. I can grade a big stack of essays, and I can focus my full attention on my students. They get my best energy. And this is why I meditate regularly. I need to bring attention and compassion into my classrooms. My students deserve my best energy. They deserve patience and compassion and generosity.

But, when classes are over, my brain is fried. I am frazzled.

If I rest, I bounce back.

If I don’t rest, my brain melts down.

Resting isn’t always an option. I work in the real-world, and I care about doing my job well.

So I’m learning how to “rest” inside the jumble. I’m learning how to bring my meditation practice into every area of my life. And this is another story that is true about me, a story of resilience and adaptation.

One of my friends is a Yoga instructor, and he has been kind enough to practice Yoga with me each week. He gives me instructions, and he knows I don’t always understand what he’s saying. He knows when I’m not following the thread, and he supports me until I figure it out. He never makes a mean face or rolls his eyes or mutters something rude. He doesn’t gossip about me.  Sometimes he has to stop his practice in order to help me, and each time he reassures me that it’s okay for me to not know what’s going on. He trusts that I’ll figure it out, and I figure it out.

This is what compassion looks like.

In order to have faith in ourselves, we need others to place faith in us.

________

This week, I had a terrible day. Most people around me did not know I was suffering. My friend Anne knew, and she helped me. I made it home, and Carl was there, and he helped me. And my amazing Mayo clinic trained Lyme doctor saw this coming. He had already shifted my meds, so that as soon as I needed them, I had them. Carl ordered dinner, and we ate. I took my meds. We watched Netflix. I fell asleep. And the next day, I was okay. I bounced back.

Writing those words terrifies me, and makes me uncomfortable. The image of a person “bouncing back” is inherently ableist. I am not cured or recovered. I will always have this disease, and it sucks. When I write, “I bounced back,” what I’m saying is that my treatment is working, and I am functional. What I’m saying is that setbacks are not permanent. What I’m saying is that recovery is also impermanent.

And there I go again, repeating the same story.

I’ll stop telling this story once medical communities, once society, starts listening to women, starts listening to the stories we tell about our bodies.

I’ll keep telling this story because it matters, because it needs to be told.

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.