Category 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.