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.