He kissed me not unlike a sloth moving among the treetops. With mild indifference, his mouth greeted and bid farewell to mine as if to say maybe you, maybe somebody else. The casual possibility possessed him, juxtaposing the gripping fervor I infused into my everything. Dichotomy ran through me with petulant precision; I was either engrossed entirely with the task before me or blind to its existence.
So I kissed him back like I wrote my thesis, like I calibrated my words to children; with pensive integrity and unrelenting commitment. With every sentimental embrace. I was symbolically etching “yes! yes! yes!” across a chalkboard tentatively suggesting “maybe…”
Not impossible to imagine, then, given our mismatched tempos, that I was not the only name scrawled lazily in impermanence across his mind. Surprising though, was the malignant cruelty with which he yanked me like a plug from the wall of now, tomorrow or ever again.
When my own body was poised to pull the electricity to my pulse, he changed his casual ambiguity to “NO!” He had hummed along to my tune of love, but when death, my demise loomed ever closer, his absence sang “No!” with haunting clarity. Asking someone to come to you as you prepare to die somehow blatantly misses the point.
That woman hellbent to pay homage to her proclamations but privy to mediocre, static respect, did in fact perish. The person amenable to taking whatever “love” a man could be troubled to pass out like charity is gone. In her place, breathes a woman who is eager to accept (and give) love, nothing more nor nothing less.
“If only you saw how it really is. I wish there was some sort of a magic X-ray machine I could hold over my body to show the truth. The truth that my body is slowly killing itself.
You are supposed to be your own hero. You are the one person that you could always trust to go to bat for yourself. The one person that would always have your back. What happens when that one person is fighting itself? Yourself.
I wish you could see the real me. You see the ‘beautiful, strong, inspiring, admirable girl.’
If only you knew how desperately I wanted you to see the truth. See how badly I need you. See how badly I need your support. I’m desperate for it yet I will never tell you.
Little do you know, I cry myself to sleep every night. I can’t remember a night I didn’t. I can’t remember a night I didn’t wake up in tears because the pain is so unbearable. But I’ll never let you see that. I’ll keep being the, ‘beautiful, strong, inspiring, admirable girl’ because even if you saw the real me, you’d forget about her tomorrow. Because my illness isn’t always visible my suffering and cries become null and void.
‘If only our eyes saw souls instead of bodies. How very different our ideals of beauty would be.'”
With Chronic Lyme, everything can change on a dime. Plans- cancelled, life-halted… Heck, I’ve had a great week. Productive, for the most part. Productive for me. I shouldn’t complain because it has been so much worse. I’m sitting here, under my heating blankie just taking one breath at a time. One. Slow. Breath. At a time. I’m just sitting here trying to stop the crushing pain in my chest and the unrelenting shakes throughout my body. Please no seizures today, please? I just hope the kids can’t tell how bad I am.
“I’m sick of my heart being attacked by this disease and trying to balance and figure out all these medications; what will work and what doesn’t work. I don’t care if I’m poor the rest of my life, I don’t care if I have any materialistic things anymore…. I just want my health back and to be treated properly as a real patient.”
Survival demands a degree of self-involvement unlike other preening. The warning dialogue transfixes its audience of one with unyielding ferocity. Personality and warbling sing song of mind are snapped like feeble saplings. Stay. Alive. The voice of body bleats, admonishing me against joyful sustenance. Another sunrise. Another moon. The broken body takes no victory in years passed, pulse intact. Because the threat stalks on. Here. Now. I exist to be hunted.
“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.