I have decided that 2018 is going to be my year! Reclaiming a sense of purpose and connection with my identity has re-invigorated my commitment to finding a wonderful man to share my life with. I’m taking advantage of whatever avenues are available to help me pursue this adventure. Please take a tour of the Lymies Looking for Love Community even if you do not have a chronic illness! This is Facebook community I created, welcoming anybody and everybody with an inclusive, respectful and accommodating philosophy.
This interview with Mackay Rippey from Lyme Ninja Radio may have gathered a little dust, but the Lymies Looking for LOVE Community is gaining speed! Again, please do not let the title fool you, this is a unique community designed to make the pursuit of meaningful connection available to all! Cheers to love!
The beginning of a new year commemorates the second anniversary of Tick Talk! My endeavors to catalog the macabre malevolence circling my mind and body have nourished my life. Granting a voice to trauma has provided an emotional cleansing which has served as a literal lifeline. The transformation of my body, along with my mind has created pockets of opportunity and reinvigorated a sense of connection. Your presence, feedback and tender validation are treasured. I thank you dearly for every like, comment, re-blog and follow. The community we are creating symbolizes the inclusivity I strive to embody.
In honor of where I’ve been, where I am and where I’m going, I will be sharing the first ever post I penned here. Thank you for coming along with me for my journey.
There is no repellant quite like chronic illness. Acute crises may reel in those seeking heroism cloaked as compassion, but true efforts to deposit karmic pennies in the piggy bank will surface. When a decade of hospitals doesn’t yield magical cures and you continue to break, those who cushion your existence fade. Not unlike the lingering sticky footprint surrounding your IV, people leave you gradually. They fade away particle by particle until all traces of their adhesion to you are gone.
Then there’s the other kind of gone. The string you up on a flagpole by your PICC line, skip country as you wilt away to jagged angles kind of gone. If it’s not already apparent, I speak from experience. Being abandoned as you die is, well, intangibly visceral. I’ve collected troves of diction on said topic, most of which are of the four-letter variety; you know, the kind of language your mother eschews, but my mom blooms by. (Okay, so maybe her cornflower blue irises don’t exactly replenish beneath the rays of my f-bombs as they did the first fifty times I owned it.) But she still glitters by my passion, in all of its forms. I digress.
A reproachful harangue about those who have ditched me this is not. (Only.) In addition, I propose an inquiry to all of you reading this; at what point does chronic illness replace the human who has it?
It has been my experience that being reduced to a medical enigma, a perpetual failure to heal, sucks. Conveniently side-stepping the topic of chronic cruelty churning inside of me, others focus instead on how my illness burdens them. I am not alone in this; others I’ve connected with echo similar sentiments. The take away message playing through our heads is this: I am not lovable. I am disposable. My illness is all that I am. This is a fairly simplified excerpt of the dialogue me, myself and I exchange. Instead of blaming someone, my aim is to unearth beliefs that put those living with chronic illness in the wrong. Because we exist.
Betrayal by body may be inevitable. Betrayal by those I love doesn’t have to be. Stay.
Sometimes I tell myself all the beautiful words I wish somebody would say to me. This writing is dedicated to all of the women (and men) needing encouragement and recognition for the amazing task it is for you to exist. I honor where you’ve been, what you’ve had to give up to be here now, and where you are going.
A big thank you to my dear friend Patrick Plum for lending his voice to my words.
By the age of seven, I had my spiel committed to memory like a seasoned politician. At the beginning of each school year, I would politely educate my pupils about the nature of my disability. I was cognizant to provide only pertinent information, not an excess of fear- inducing data. Even at this age, with my sun-drenched hair sprouting from the top of my head, I knew what I was saying was significant. Significant not only in universal context of the topic, but also in the weight it bore on my personal well-being. Would my classmates accept me?
Though concealed was my motive to detour any teasing and tears, the macro level threads of awareness I was sewing entered my mind. It had already become intimidatingly apparent to me that whatever alternative views–beliefs that did not criminalize me for having a disability–I wished others cultivated, were going to have to be planted by me.
“Even though I walk and talk differently than you do, I am the same as you are.” I can still recall the words I imparted to my peers, teachers, and adults revolving around my world. “I am not contagious, it is safe for you to be my friend.”
In myriad contexts, with varying diction, I am still tossing out these reassurances like shimmering copper into a wishing well. I am asking others to erase the dangerous indoctrinations of their youth about others with disabilities, and to embrace diversity, recognize shared humanity, and reach out with respect.
Why should you care?
Inevitably, you or somebody you love will develop a disability. This is a statistical fact. With equal rights and access declining daily, the best thing we can do is learn to support one another. Conversations about navigating interactions with intention and undiscriminating respect are more imperative than ever.
Last week I entered a writing contest, A Word With You Press, about personal experiences with racism. This morning, I received an email from the editor informing me that he found my piece to be sweet and innocent. Much to my glee, he decided to publish it on his website today!
My elation to be involved with this meaningful project is monumental and colored by purpose of connection. He encouraged me to ask all of my friends and followers to comment and share my work! I would be so very grateful if you would do just that HERE!
Additionally, I invite you to review the submission guidelines and consider joining this crucial conversation.
The purpose of a diagnosis is to provide appropriate treatment for healing. When, instead, diagnoses line up like soldiers trotting off into landmines, they only seem to detonate within my psyche.
I died on the the day I was born. The barrage of labels slung at me since, many fatal, some pitifully inaccurate, most both, corkscrewed themselves into my humanity. Tugging ferociously at my uniqueness, they warped me into a homogenous glob of wrong.
A few months ago, I made a decision to release my labels. I’ve changed my language, the way I present, speak about and think about the collection of my experiences. Much to my surprise, it seems as though the more I release the chokehold around identity and illness, so too do the fingers of desperation, shame and sickness release me.
Every day, myriad times a day, I remind myself that I am wonderfully human, nothing more, nothing less.
As it turns out, learning to be my own best friend is proving to be far less arduous than I imagined. Though nothing in my repertoire is silhouetted by ease, making a commitment to learn to caress myself with the gentility of friendship is substantially easier than declaring the woman in the mirror my forever enemy.
You know those moments when the frayed edges of life seem to unfold symphonically, joining together in concert? No? Me either. So, needless to say, I was stunned when I ventured into New Earth market the other day to sign some paperwork regarding the sale of my postcard and I saw her. Standing there, postcard in hand, words traipsing across glossy paper, my eyes caught on the woman who had once incubated the lovely girl I penned those words for. Twenty years has done little to quell her beauty, which spread itself across her form with regal abandon. Yes, here, she was, making her purchase as I was sending my story about her daughter into the world.
Coincidence? Who knows? What I do know, though, is that her reappearance at that very moment augmented the joy, the purpose and sense of contributing to building belonging gaining traction deep inside of me.
The censorship of the ugliness surrounding chronic illness is abhorrent. My socialization as a human who has endured torturous pain and suffering, makes me feel as though I’m a dog in obedience training. My honesty about such intense trauma is deemed “negative” and thus goes ignored and invalidated by most people I know. On the rare occasion that I share socially appropriate, productive tidbits, I am rewarded with attention. Frankly, this really grinds me to the core. My unsavory situation challenges the privileges enjoyed by the healthy and exposes guilt.
Instead of turning away from the perceived “negativity,” I encourage healthy folk to validate, respect and jump into others’ realities. Recognize the vulnerability and instability of our very beings, and the permeating struggle we endure. Turn not away, but toward…
I am using this example to illustrate not only how society adamantly steers attention away from suffering and toward production but also how we expect the chronically ill to get something positive out of their illnesses. I’m supposed to be an underdog: to shine through the adversity, to overcome my pain, to have gained something golden and triumphant from my suffering. This is all nonsense, in my experience.
By focusing on a happy ending, we are detracting from the validity of an inhumane now. We are also, as a society, preaching the ideology that if somebody is not doing something tangible, their value isn’t adding up to much. In my example below, I participated in a normative behavior, seemingly overcoming my limitations, for the sake of conformity and appearing normal. In other words, I sucked it up and put on a happy, heroic face for the benefit of the healthy, who, in turn, demonstrated their approval because I was affirming their privilege. Make sense?
This system of measuring worth through production and the demand to create beauty from torture is damaging to people chronic illness, among others.
We all deserve a more life affirming mentality. A paradigm of morality cultivated through unconditional respect, proclaiming value for all and actualizing the behavior to construct a more engaging reality for all humans.