Lyme Diaries – The Only Thing to Fear is Fear Itself

Kathleen Bowman is a person who lives in our small community up here in Downeast Maine, and a few years ago, she saved my life.

A few weeks ago, she and her husband came into the gallery with some friends who were staying with them. I didn’t say hi at first as I was talking to one of the friends who was gazing out the back of the gallery at the garden; there is a beautiful, luscious garden of hostas and rhododendrons and a small pond out the back of the gallery, and it is mesmerizing. He said, “do you know my friend Kathleen?” I said and smiled, “Kathleen saved my life”. He looked at me, quizzically, and we walked to go and say hi.

Since Wednesday of last week, I have been experiencing crazy edema in my legs and an increasing sense of pain in my back and abdomen, coupled with digestive troubles. It feels as if my whole system has become locked up and like it is stopped. It is a disconcerting and painful feeling. The swelling of my legs is scarier still, and makes walking uncomfortable. It also reminds me of a very scary time in my life when this happened before, when I was 18 years old, during my senior year of high school. At the time, for months, I hid the edema under the baggie pants that were customary in the late 90s. I loosened the shoelaces in my Vans to accommodate swollen feet. In Creative Writing class, I sat on the couch under the classroom’s tiny windows. I loved that class, obviously. One day, my teacher crouched down near me to help me and friends with something, and she noticed my swollen ankles under my pants and she asked me about them and how long they had been like that. I said I didn’t know and she asked a friend to walk me to the nurse. The nurse asked me the same question, and I said a few months. (Why? I was asked a lot during that time. I was afraid I was dying, and I was a sad and lonely child, and thought maybe it was better if I just did that, quietly). My mom came to get me and I went to the doctor and they admitted me to the hospital with a blood count of 1.7 (normal is 7). I spent the next two or three days in the hospital, and it was one of the most lonely times of my whole life.

I know my mom dropped me off at the hospital; she must have. But I was alone at night, and the doctors were assholes because I was (probably) a teenage asshole to them. I watched “Boogie Nights” and didn’t sleep and wondered if I was going to die in there by myself. I was on oxygen, which was great because I could actually breathe for the first time in a while, but thought to myself, over and over, “this isn’t good”. Some friends came, but the best ones didn’t, as it was too scary. It was too scary.

When the edema showed up last week, immediately I became scared; scared of what was happening, scared of the lack of answers, scared of the fact that this entire month I have just progressed into feeling worse rather than better, and scared of having to go to the hospital. My doctor told me on Friday that she wants me to go to Bangor Hospital and not MDI because it is bigger and has more resources. Immediately I was sent into an emotional tailspin that lasted until tonight, when I caught the truth on the wind and spotted the rise of a crescent moon that I could wish upon. I wished for it to help me alleviate my own suffering; my fear of being alone in a hospital at night. At the moment when I realized it, I realized how scared my younger self was all the time, and I remembered when Kathleen saved my life.

Kathleen is an energy worker of a sort; I can’t really tell you what she does exactly. She “tunes in”, she says, and then pictures show up in your head and she asks you to describe them. Sometimes you lie on her massage table and she does something Reiki-like that isn’t Reiki, moving her hands above your body. Over time, I began to trust Kathleen, and then one day it all came clear; the young version of myself, trapped in a cold cave that was made of stone. After a while, she was coaxed to come out of the cave, and the older version of myself was standing there, tall as anything, with a cloak or wings on, or both, and wrapped her in a hug and told her she was safe and could stay out. Tonight, on the driveway, under the moon rise, I remembered that moment, and sighed and cried at my littler self, the one who was so scared and alone a lot of the time. She didn’t deserve it, and she was just a child, and also, she doesn’t need to drive the bus anymore.

All of a sudden, I knew I would be ok and I just have to figure out how to be. I smiled at the moon and thanked her for always being there, right where I need her to be. I felt relief and that a 100-lb weight had been lifted. Now, my stomach is still killing me and my legs are still swollen, but I know I won’t be swallowed up in fear.

I have been in family therapy for the last few months with my mother and brother, and I have learned to appreciate my mom a lot more than I ever have done, but I have also learned that things were more messed up than maybe I realized. I was, after all, only seeing it from my perspective. Now I see things from my brother’s and my mom’s perspective, too. So even though I felt alone and scared so much as a child, I don’t think it was anything intentional on the part of my parents. My dad was actively seeking to maintain a series of delusional stories that covered up hard truths, and my mom was running around behind him, cleaning up. Tonight our therapist asked her why she did that for so long, and my mom said she was in survival mode until she started her career as a realtor. Our therapist asked, then, a harder question, which was “do you think you were really in survival mode the whole time, up until the point when he died?”. Hard truths. How can you parent your children when you are just trying to survive yourself?

Deep thoughts on a dark night. Everyone has told me that Lyme teaches you lessons, and that part of the disease is figuring that out. I learned tonight that I don’t need to be afraid of being alone in a hospital, breathing oxygen, watching bad tv, and being afraid of dying. When we all took care of Mary Ann, we never left her alone. We watched stupid tv and put on makeup and played with Instagram filters and listened to Tupac at 5am when the morning nurses came in. We took copious notes about treatment and laughed as much as we could and made the couch look like a hospital bed so we could be close together and giggle. That’s how my hospital stay will be, if there is one. If I am to die, and we all will, I won’t be alone. I will be surrounded by people who I love and who love me.

What a gift, what lightness. Let’s not stress when there is so much beauty in the world.

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