It Happened To Me: I Have Lyme Disease

I was 12 years old when I noticed a redness on my hand. I grew up on a farm so no one thought anything of it.

Sep 24, 2012 at 11:00am | Leave a comment

I have Lyme disease. Thing is, if you get Lyme disease and don't know that's what you have, you don't get treated. If you don't get treated, then it disseminates. While you're Googling that word, let me help you out: in my case, Lyme has gotten into my brain, joints, organs, tissues, and wherever else it wants. It's like the honey badger of diseases -- it does not give one fuck.

I was 12 years old when I noticed a redness on my hand. I grew up on a farm so no one thought anything of it. I was sent away to “go rub some dirt in it.” This symptom was forgotten, but, in retrospect, was likely the “bull's eye” rash specific to Lyme disease.

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This is my freshman year in high school, just before my facial paralysis AND bad haircut (I'm in the middle). Not my best year.

One year later, I started high school. I felt outside and strange, and like all teens, super awkward. What didn't help was that in my thirteenth year I had the first of three incidents of facial paralysis. My doctor ran some tests (including two Lyme tests), but, after finding nothing, told me that these things happen, and it would likely go away on its own. I thought that was some bizarre shit, but what did I know, I was a kid. This paralysis lasted for a whole year and left permanent weakness on one side of my face. That year, a popular girl who never spoke two words to me walked right up and asked with impunity, “What's wrong with your FACE?” Too horrified for the best comeback ever (what's wrong with YOURS?), I said nothing.

Naturally, I became lonely; I chose to deal with that in two ways: reading and running. I didn't run for my stupid school, for a team, or a coach. I ran for a simple reason -- I wanted to see how far I could get. This would reveal my next symptom, joint pain. It was bad enough that I had to stop running completely. I was given another set of tests (one or two Lyme tests among them) with nothing found. My pain persisted but I managed it by avoiding anything that made it worse. 

In my rush to get the fuck out of that school, I applied to college early. I was accepted, and my first semester was shaping up to be what I've always wanted out of school. Engaged teachers, genius kids, and a freedom I had not known growing up in a sheltered family.

The monster under the surface grew. I struggled with walking. When health services dismissed my situation (after more tests including x-rays and Lyme tests), I just tried to manage it on my own. I used a cane constantly, it took me longer to get around, and  some of my new college friends were such badasses they'd carry me to class on their backs. 

This difficult but manageable phase of my life would not last long. I remember the exact moment everything changed. I was watching this new movie, “Something About Mary.” I felt dizzy, but I had to use the restroom on the second floor. One of my friends offered to lug me up the stairs, as had become the custom, and I gratefully accepted. The dizziness worsened, and while on the stairs, I fainted. I was miraculously caught, and when I was settled down, I was feeling positively defective. I was unable to continue at my dream school. 

Still early in my illness, I decided that all I needed to do to get better was exercise. I made myself strong before as a runner, I knew how to get strong again. I began with a yoga program for the elderly that I found on television. Day one: I stopped from fatigue 15 minutes in. Day two: I stopped from fatigue 5 minutes in. Day three: I woke up too weak to move. I'd never been that helpless in my life. From then on, I trained like a master to learn to manage the little bit of energy I had to prevent that from happening again. 

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A typical day where everyone is having fun around me and I'm lying on the ground too weak to move. Notice how it's not strange to anyone in my life?

Years went by. I could no longer rely on my mind. I recall my partner at the time telling me about being hit by a car in the past. Shocked, I said “Oh my GOD! You were hit by a car?” and he replied, “Babe, I know you don't remember this, but this is the third time I've told you this story.” Incredulous I insisted that I'd CERTAINLY have remembered it. How could anyone forget that! But he sighed and simply said, “I thought you would too, but you react the same way every time. I just hope you'll remember this time.” I couldn't remember my life. In some ways, I felt like I was no longer a person.

I felt like this was death, but my disease wasn't finished with me yet. After pushing myself one week, I began having weird shaking, vibrating muscles. A day or so later, they began to jerk and spasm. These movements did not go away. I looked like I was seizing, but I was awake, aware, and feeling everything. It was so bad I decided to endure another round of useless testing and another army of dismissive doctors.

I was diagnosed with a rare movement disorder called “Myoclonus” and sent away with benzos. No known cause. No prognosis. Just more stasis. One of the neurologists who treated me decided that, “Some part of your deep inner psyche wants you to suffer, this is why you're sick.” What utter bullshit. After that I was done. I knew my disease would keep getting worse, as it had slowly been for years. New symptoms came, and never left. Because no one could help me, I knew this would kill me. The miracle was that I didn't die already. I decided I would see no more doctors.

I'd live that way for two more years before being diagnosed. A friend I had met in a “chronic fatigue syndrome/fibromyalgia” support group who was just like me told me she was positive for Lyme disease. Her news blew me away. None of “us” ever got diagnosed. We just got fed more pills, more shrugged shoulders from doctors, more pathetic explanations. I clawed at the hope that soon I might have an answer of my own.

My first appointment was thorough. The doctor revealed that despite having something like six negative Lyme tests it was still possible to consider Lyme. This person explained that many tests could not be used reliably, but on December 2, 2009, my first Lyme test from a special lab was positive for Lyme disease. I was told Lyme is treatable. Hope, real hope was allowed to fly through me without the wickedness of doubt. 

Of course, it wasn't that simple. In my country and state, a physician who treats Lyme beyond 30 days risks lawsuits from insurance companies. This doctor, out of mercy, endangered their practice to treat me. But after only 5 months of antibiotic treatment, I began to feel different. I noticed that I could walk around my building without being laid up in bed for two days. After only 8 months of antibiotics, I felt CURED.

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Shitty camera phone pic of me doing a contortion-y handstand during Sunday Acro Club.

I didn't waste one minute. First, I enrolled in college full time -- before now this had only been a fantasy. In my first semester, I pulled a 4.0. I took yoga a couple times a week, Tuesdays I had my ultimate Frisbee league. I organized an acrobatics class every Sunday. I learned to drive a car again. I bought a car! I dated! I took Argentine tango classes every Friday. In the summer, I got a job with a huge magazine and enrolled in circus school. I followed up in the fall with a fire performance retreat. Nothing held me back now. I was making up for a lifetime lost to disease, and I was doing it well.

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Glorious Portland with my good friend. He's not crazy or undead, just excited to have me visit.

Being so sick, I was terrible at relying on myself. I decided the solution would be to start taking trips, by myself. The first stop was Portland, OR. It was a fabulous new world, but it would also be where my first sign of trouble emerged. I was fresh out of circus school, in the best shape of my life, and yet I began to wear out from short walks. Resting restored less to my batteries. I felt the old specter return. I told my friends I was worried that I was relapsing. They insisted I was being paranoid, that maybe I was just doing too much and I needed to slow down. 

I hate being right. I felt dizzy, weak, and confused. My heart started disobeying. My movement disorder tiptoed back. My symptoms were all milder, but all accounted for. My old doctor was scared to risk their practice again. My best option was to see a new doctor out of state. This week, I begin my new round of antibiotics with my new doc.

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One of my last good days. My relapse had already begun. (I miss that pink hair.)

I'm scared that the treatment won't work and I'll have to live life in wheelchairs and beds, watching other people live. It'd be hard to sit around after having tasted life at last. How could I let the minutes tick by and live a dead life, not free to do what I want, trapped by fear, paralyzed by limits? I watch so many people do it to themselves who don't have to and that's hard for me too. So don't pity me. Even though I've only had one year to “live” I think it taught me a lot about being free, something many of us never learn.