Yesterday morning when I woke up, the first thing I did was look in the mirror. Over the years, this is how I have measured my level of wellbeing; the color of the underbelly of my eyes directly correlates to how sick I feel on any given day. It’s my body’s way of physically manifesting illness, and I do everything I can to combat this. Yesterday morning my eyes were surrounded by dark navy lines and purple black splotches, like someone had snuck into my apartment at night with brushes and painted my face for a circus show. I cried when I saw my reflection. Not flowing tears, just enough to let me know that I couldn’t hide the pain or the way it chooses to show up.
I have Lymes Disease. To be more specific, I have late-stage Neuroborreliosis, which is a fancy way of saying Chronic Lymes. I was diagnosed before I reached double digits, which means I’ve been living with Lymes for over thirty years. Since as far back as I can remember, I’ve spent the majority of my life angry with my body. When my Lymes was discovered in my spinal fluid at the age of eight, doctors put me on high dose IV antibiotics. Visiting nurses stopped by our house to change needles; migraines and joint pain became my new normal. The medicine was “at war with my body,” and this terminology never left me. My body was something I needed to fight in order to feel good.
At the time, I was too young to understand much of anything about the disease, and once treatment ended, the ordeal became a faded memory. In the 1980s Lymes Disease was just showing up and “Chronic Lymes” was unheard of (and still extremely controversial). The topic of Lymes rarely came up for me in the years that followed, but what did stick with me from my childhood was my relationship to my body – a place where no love lived. As I grew older I continued to have health problems. Chronic illness has an uncanny ability to re-shape itself into a very normal way of being. My new normal was an overall feeling of dis-ease. The feeling waxed and waned over twenty years, with an underlying malaise and exhaustion, coupled by heavy darkness under my eyes and oftentimes, intolerable amounts of lethargy.
My dark circles started plaguing me in college, only to become fully blown upon my return from the Peace Corps in 2006. The trauma I had experienced abroad was like a hurricane – the eye of the storm focused on my immune system – and it offered my sedated disease the space it needed to reawaken. Lymes bacteria (known as spirocites) become intractable, going into hiding until the immune system weakens, opening the dam to illness. Malnutrition and PTSD were just what the Lymes had been waiting for, and upon my return to NYC, I fell ill.
At first, I didn’t know it was Lymes. I had been told I was cured over fifteen years ago, so whatever was plaguing me was mysterious, and seemed to plague the doctors as well. “All your tests look normal,” the doctors would tell me. “It’s all in your head, try anti-depressants,” they would say. There was no doubt that I was depressed during that time, but I knew something else was wrong, and day by day the doctors tried to convince me it was all in my head. I began to doubt myself; I began to doubt my relationship with my body. I also began to shame my body. Not only did I shame it, but I aggressively shouted and cursed at it for failing me, isolating me, slowing me down instead of speeding me up. It was the quintessential “why me,” and there were no answers. Maybe that’s why I kept asking questions. I think answers were what I’d been running away from all along.
It was only in 2008 that I was re-diagnosed with Lymes Disease. Since that time it’s been an awfully difficult journey. In fact, since I’m being brutally honest about this for the first time in public, there were times where I never felt more alone, times when I’ve wanted to give up, times when I went to bed crying and woke up crying, times when I was embarrassed to leave my apartment, and times when the word hope was not in my vocabulary. The ups and downs of Lymes Disease crushed my morale for years. But that is not where this story ends.
My journey back to my body began the day I was re-diagnosed; I am sure that if someone at the time had warned me of the difficulties that lay ahead, I would have given up. The re-diagnosis wasn’t my crying on the bathroom floor moment – frankly there were many more of those to come. It was a blank invitation. I was invited to a party without knowing what the dress code was, and for years I would wear all the wrong things.
It’s been an arduous eight years. My pendulum of health is constantly in motion leaving me often on the precipice of illness, waiting for it to strike again. During this time, I’ve learned to retreat, to hermit, to hide away, to never ask for support because I can do this alone – can’t I? I made up a grand story that I had to stay positive, otherwise I’d begin to lose the people around me. Who wants to spend time with someone who always feels sick, tired, and achy? Certainly not me.
It took me years to realize I had a breaking point. I had been at war with my body for so long, that I couldn’t stand being in it. I had become so used to outsourcing wellness that I never had to take responsibility for my health and happiness. The habit of continually searching for doctors, cures, and answers, became a part-time job until I realized that it’s much easier to stay searching for something than it is to find the thing you’re searching for. When you find that thing, the obvious next step is action, and the thing I had feared all along was taking action and responsibility for a body I had shamed all my life.
From this point on, things slowly began to illuminate. I became aware of so many fears that surrounded my dis-ease, and over time, I started to accept that the only way to process my fear was to move towards it. Today I move towards my fear of admitting this story. Today I move towards the fear of admitting out loud how hard this has been. Today I move towards what my body has been longing for – an outlet.
Lymes has been my great teacher, and I know the lessons will continue for the remainder of my life. I no longer spend my days dreaming of a cure. Instead, I try to accept where I am and how I feel in each moment. Instead, I’m learning (not without difficulty) to reach out for support and not retreat. Now, when I come to presence, during moments of pain and sadness, or hope and gratitude, I can actually hear my body speaking.
We all have a story. What’s your body saying to you?
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This morning when I woke up, I leaned in close to the mirror and examined the darkness under my eyes. Up close it looked pixelated, like a Seurat painting, thousands of little particles making up something that could be beautiful if you stand back far enough. This morning the story felt different – present and spacious, like a watercolor as opposed to a painting. Watercolor feels less invasive and lighter in spirit. Maybe that’s what presence offers me as well. The big picture doesn’t feel so heavy when I’m looking at it one moment at a time.
