Story 21

How has Lyme Disease affected your life? What inspires you?

“How are you feeling?” Knitted brows narrow with what is probably genuine concern, but feels like pity. Exhausted. Hysterical. In pain all the time. Hopeless. Suicidal. “I’m okay.” The tension this familiar stranger expels is palpable, her anticipation that I might say something less than pretty draining like the air of a flyaway balloon; which in a matter of seconds is what she gets to do. Fly away, free from the woes of a chronically ill somebody.

Growing up in a quaint community coupled with a history in the nonprofit sector, has branded me with the infamy of big-time illness in a small time town. Should I emerge from my cave for an outing to the local natural foods store, an interaction such as described above will be inevitable. Feeling about as inconspicuous as a dog walking on her hind legs, I get through the interaction. If I were being honest, though, I would punctuate this conversation with unflattering grimaces, tears and the admission that this lady’s perfume is killing my liver. But I don’t. Why not?

From the most practical of standpoints, the answer is that I just don’t have the energy. A reassuring, if not plastered smile and nod, is often the easiest of uneasy methods to get through this. And that. I’m getting through my life, not living it. I’m existing in what feels like a parallel universe while those my age, my peers and forgotten friends are living. But I just don’t have the energy to live.

Societal and cultural expectations too play a significant role in my ironic attempts to soothe the healthy. The symbol of a gracious, beautifully broken tired but determined sick person is just that, a doctored fairytale. She does not exist in the real world of ugly that is chronic illness. Yet the mass population is unaware of this and therefore believes not only in her, but that I should be her; that I should sustain myself on Hallmark colloquialisms and spout pearls of wisdom in the face of adversity.

Don’t count on it. Being ill is a blemish society attempts to conceal on multiple layers. Political, industrial, medical, recreational and relational boundaries for how we may be sick are exclusionary and not to mention, ridiculous. A paradigm of denial, encapsulating not only Lyme disease, but also those of us with chronic illness as a population, makes us wrong. Demonstrate anger about the injustice of it all, and you are not being sick in a socially appropriate way. If I were to bare the naked torment of my being, I would not be concealing my illness in a normative manner that protects the status quo and those who benefit from it. Yet, despite my sociological theorizing and righteous indignation, I won’t hesitate to apply a social Band-Aid for your comfort. Not even for a second. When a man with green eyes and the steady stroll of someone who knows how to savor offers a smile, I want so badly to be the unblemished woman of my imagination. A woman who thrives where she is, blooms by the simplest of moments and can coexist completely with another because the ever-present something by her side is not called pain. It’s called health.

But today, she’s not me. I long to reach out to Green Eyes, to wrap myself in the cloak of stability beckoning me forward; to ask him to ask me “how are you?” And to mean it. Mostly, I crave to wilt, be vulnerable, fall apart into a gazillion shards and without trepidation, for him to reply “Yes.” He would say yes to all things me.

To follow her journey, visit this Lyme warrior’s Facebook page.