There is nothing more terrifying than feeling Lyme symptoms creep back up. It’s like being thrown into the back of a police car not knowing what I did wrong, or how long it will take me to escape prison this time. And escaping prison is exhausting! It has taken all my energy and focus, all my resources. But the point is, I have escaped and I do have my own life back. There are the occasional relapses, but I have a treatment plan that works for me and I can get right back on track in a matter of days. It’s a lot different from a matter of months. And to even begin to understand what happened to me, to my body, I have to look differently at my history of illnesses and treatments (of which there aren’t that many because I’m in the prime of my life dammit). I have to think critically about sources of environmental toxins that may be present in food, air and water, and the way they may alter the function of my genes. I have to sift through massive amounts of information around Lyme, some grounded in personal experience, some grounded in academic research, some presented as cures by esteemed medical professionals, and some found in underground chat rooms and blogs (not mine) that read as pseudoscientific. I’m going to share my process of putting Lyme into remission, but it may not be the answer for anyone else’s unique struggle with Lyme. All I can hope to do is share what I went through in efforts that some part of it will be useful to others and this will mitigate suffering in some way, even if it’s to not feel alone in the confusion.
If I needed any more confirmation that my writing and sharing this part of my life is imperative- here are notes from last night’s dream written nearly one year ago in my phone. I must have reached over upon waking, moved by a feeling and typed: “Story of a girl who as soon as she comes into adulthood feels sadness within things. She is moved by certain symbols that go beyond words and travel from ancient cultures. Particularly images of owls. She doesn’t yet know that her sadness comes from old stories that haven’t yet become part of her current one. Only until she faces the past and tells these stories will she be broken from this sadness.” And so today I write.
The molotov cocktail of lyme and co-infection symptoms are different for everyone. There are over 200 different bacterial strains of lyme bacteria, and ticks pass on a different assortment of parasites, viruses and bacteria depending on what they, themselves have been exposed to. Over the course of a year and a half I experienced a range of symptoms: headaches, brain fog, forgetfulness, poor short term memory, poor verbal recall, difficulty thinking, night sweats, insomnia, anxiety, food and mold allergies, chronic fatigue, nightmares, swollen lymph glands, light sensitivity, pain with eye movement, vertigo, menstrual irregularity, and anemia. But I could always drive myself to the doctors and I never had any joint pain, seizures, or air hunger. For that I am grateful. Many with Lyme never had it as good as I did. The most challenging part through all of this was not knowing how long it would last, and when I would get my life back.
I think when we’re sick it’s a universal question to wonder, “Will I ever feel normal again?” Even if it’s just the run of the mill flu, I think, “Is this it for me?” But healing does come. I believe it comes for all of us. I feel my body wade through the dump of everyday pollutants, stresses, traumas and demands of modern life and feel humbled by it’s ability to carry on some days, but succeed in others. Eventually things come out of the blue, or slowly grow and creep up and take us down, but our bodies fail to stay fixed in the pressure chamber of illness. The saying goes, What doesn’t kill me makes me stronger. I think it’s more like, what doesn’t kill me changes me. We grow, adapt, morph, respond, learn, pivot if we are doing this whole thing right. We were never meant to be static, even if it feels like we’ve been one way for a long time-sick. Lyme came upon me, incubated me, and returned me to the river. I could go left, or I could go right down the river and I did. I turned. I don’t yet know which direction, or where it will lead, but I don’t think it matters because I trust that, together with my body, I can face the unexpected, the darkness, the adventure, the calling to open and share what hard-earned nuggets of wisdom life-altering moments brought me. And then see what I can build together with all of you.