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Lyme Recovery, Seven Years In

When I first got my Lyme diagnosis, I went to the library and borrowed all the books on Lyme disease I could find (there were only three, if I recall correctly). One book was the personal account of a woman whose undiagnosed Lyme crossed her placenta and infected her unborn son, who later died in childhood after horrific symptoms. That book and a second featured images of magnified ticks, and I would peek through the pages taking care not to accidentally touch the photographs. I realized I might never have children. I returned the books to the library.

The third book was Biography of a Germ by Arno Karlen, a scientific essay on the Lyme spirochete. I didn't finish it because I took it back to the library as part of my stop-scaring-myself-silly dragnet. But I remembered it fondly. The author methodically explored the Lyme bacteria, Borrelia burdorferi, as an organism in its own right, a marvel of evolutionary survival that relies on a complex chain of ticks, small animals, and finally large ones (including humans) to complete its life cycle, and whose ability to constantly shape-shift protects it from antibiotics and immune systems. I preferred to think of Lyme as this tiny, noble enemy, trying to survive just like me and all living things.

It's been over seven years since my diagnosis, and I've come a long way. A succession of treatments has resulted in steady, if slow, improvement in my symptoms. I've been through therapy to deal with the emotional fallout that my illness led to in my closest relationships. I returned to full-time work, then started my own freelance business, and finally moved to the other side of the country, where I have my own apartment.

So this fall I looked up Arno Karlen's book again, and this time I read it through. I enjoyed it just as much the second time around, even though it made me cry.

Lyme is one of the worst and one of the best things that's ever happened to me. I can't say it's the worst because, sadly, I've experienced worse things. And I won't say it's the best, on principle. No matter how much good has come out of my illness, it will never be okay that I have it.

I feel much better than I did seven years ago, but I am still sick, tired, or in pain most of the time.

I hate it that most of the time, my answer to the question How are you? is I'm tired or I just got over a flare or I don't even know because my brain isn't working. I don't always say those things. But I always agonize internally about how to answer. I want to be honest about where I'm at, but I feel like a broken record.

When I got my Lyme diagnosis, I had been sick with the illness (and probably another tick-borne disease, too) since the summer before my freshman year in college. There's a strong possibility that I've had the disease since childhood. So at the point when my doctor started treating my Lyme, I'd had it for at least eight years and possibly two decades. It had had plenty of time to wend its way into my joints, digestive tract, brain, and other body systems. I was so unbelievably sick at the time that there's an entire year I almost don't remember. Treating an illness like that is a very tall order.

The good news is that, once I started treatment, my symptoms started improving bit by tiny bit, and never once have I regressed. Every few months I realize another symptom is gone, or significantly decreased. The very first symptom to start clearing was my severe brain fog; most recently, my stomach problems have all but disappeared. But imagine that you have to walk twenty thousand miles. Each step takes you farther down the road, but there are still a few decades left in your journey.

I'm so grateful for how far I've come. But the truth is, almost every moment is a battle to be awake, to function, to make decisions, to take care of myself, to work, to be social, to do all the things healthy people do without a second thought.

Lyme is part of my identity now.

I've been struggling to come to terms with that fact ever since moving to a new city in a new state in a new part of the world. When I first started meeting people here, I kept wanting to volunteer the information that I have Lyme. Hi, I'm Lee Ann! I have a chronic illness! I think maybe I wanted people to know, in advance, that I'm going to disappear for weeks at a time or be pretty poor company when we do get together. But also, it was a question of identity. At one and the same time I wanted to say This isn't the real me and Who am I without this illness?

Lyme hasn't only affected me physically; it has impacted my thoughts and my emotions due to pain, fatigue, brain fog, and Lyme-triggered depression. It has drastically changed the course of my life, from being unable to finish college to putting on hold (perhaps permanently) any dreams of having a family of my own. It has guided my choices of homes, jobs, social groups, and hobbies.

In a way, this altered identity simply reflects the biology of disease. My body doesn't consist only of my own cells; it also includes a colony of little invaders who have made me their home. We have to coexist somehow. Maybe one day I'll oust the Lyme entirely, but until then I have to accept it and live with it and manage it or I'll go crazy.

At the same time, Lyme has jolted me into a life that is more me than ever before.

I used to be a "good girl," thinking that if I was "nice" and took care of others at the expense of myself, people would accept me. But as my illness worsened, I found that my pain and sorrow were ignored or treated as inconveniences. I realized that if I wanted to recover physically and mentally from Lyme disease, I would need to start saying no to unreasonable expectations. I would need to build relationships with people who could demonstrate true compassion for my situation. I would need to be honest about what I wanted out of life, set goals, and take risks.

Lyme got me into therapy and the 12-step community. Lyme taught me to set boundaries and be savvier in relationships. It taught me to be my own rescuer. Lyme drove me to get serious about my dreams, and that's why I'm finally a freelance editor living on the West Coast. Lyme has reshaped my understanding of Christianity, family, and suffering. It has taught me much about love, gentleness, and compassion. It has cleared space for me to find peace, quietness, meaning, and genuine self-expression.

But despite all the good, a part of me will always grieve that I have this disease, and a part of me will always be angry.

I like to imagine getting to heaven and telling God all these things. I want to know why a tiny tick from His beautiful world got to mess up my life like this, whereas other people got normal, comfortable lives. I imagine He'll say, The spirochetes were just trying to survive, like everything I created.

"But I wanted a chance to do more than survive," I'll say.

And then I'll realize that I did.


Ceste S said…
so proud of u, Honey! Let me know what else I can do to help you...You are a ROCK star!

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