Here

“Would you tell me, please, which way I ought to go from here?”
“That depends a good deal on where you want to get to.”
“I don’t much care where –”
“Then it doesn’t matter which way you go.” 
– Lewis Carroll, Alice in Wonderland

The story can begin like this:

A young woman in a hospital hooked up to an IV at 2am. Descriptive language to evoke vivid experiences of nauseating hospital scents and the harshness of florescent light. The thinness of gowns. Bruised veins from too many needle pricks. The paradox of Manhattan just outside the sliver of a window. Flashes of what is “other” than her immediate temporal reality – the ferry to Ikea with a friend on a frozen winter day; the downtown drunkenness of summertime happy hours; the gold sequined shoes she bought for her friend’s wedding. Circle back to present. Her mother sitting next to her, tired, worn, exhausted. Her daughter is sick, and has been sick, for many years. And she can’t make it go away. Diagnosis no longer matters. A name no longer matters. The attending physician has disappeared. She’s stuck. She can’t leave. Repeat scene. Repeat scene. Repeat scene.

Or like this:

A 40-year-old woman sitting alone in a coffee shop. Uncomfortably content in her discomforting solitude. Pale skin and dry hair, but otherwise she appears deceivingly healthy. Her eyes glance over the pages of a book that she is not reading. She’s distracted by two decades of physical symptoms that hide in plain sight. The pins and needles tingling in her feet. The pulsating tremor of her body’s vibrational field. The zapping of pain. The lack of hunger. The lack of desire. She listens to the wealthy investment banker or lawyer sitting adjacent to her, talking about a deal, a plan, a meeting. She watches a preppy soccer mom order her Under Armor-clad son a hot cocoa at the bar. She glances at the glowing collegiate couple holding hands over the table. She sips her coffee… grateful for her coffee. Only $9.00 in her bank account, and she orders a $4.41 latte because that’s the only solace she can find. She doesn’t mind crying in public. What she minds is that no one ever asks why.

Or…

That same woman in a psychotherapist’s office. Wait. No. Make that a Reiki practitioner’s office. Strike that. She’s at an ashram. Or in a priest’s chambers. Or cross-legged in a shaman’s circle. She’s seeking. Through prayer, mantra, nutrition, art, song, movement… she hears concepts spoken to her about transformation; about mind-body-spirit; about healing. “Alison, do you believe you can heal?” Yes. No. Maybe. Does the answer matter? Of course, the answer matters. Everything is energy. Thoughts are energy. Faith is energy. Now she’s blaming her spiritual deficit for being sick. Wait. Stop. Not supposed to use the word “sick.” The proper term is “healing crisis.” Fine, now she’s blaming herself for her “healing crisis.” Blame, guilt, shame, anger, depression, repression, grief, abandonment, abuse. Unloved, unworthy, untouchable. The therapist wants to know if she was ever physically assaulted or abused as a child (no). The shaman tells her that she had exceptionally traumatic past lives (quelle surprise) which she energetically brought into this life. The naturopath asks if she believes in God (tears flowing as an answer). Insert words about a hero’s journey. Epic quests. The dark night of the soul mysticism. Archetypal heroes and heroines. She is not a victim, and she knows it. She’s reading fairy tales, she’s watching Wonder Woman, but she’s wondering where’s her own set of magical bracelets to protect her energy, or her own powerful wand to battle Voldemort.

Or maybe this:

The hot guy she meets at the party wants to share a singular cab ride back to her place. “Sorry,” she explains, “I can’t do that.” “Can’t or won’t?” He asks. “Can’t” she replies. People think she’s making self-protective excuses. That she has too many barriers, too many walls. Friends question, “Why don’t you just release and have some fun?” But, it’s not a release. There’s a pain to illness in places people do not see, in places people do not talk about outside of white coated physicians’ offices. There’s more shame in talking about it than the shame of a one night hook-up. Or so she gleans through conversations with friends. So, the hot guy goes his own way home. And she wonders what she’s missing.

Love. Seeking love. Hiding from love. Fearing love. Debilitated by lack of love. There is no illness without exploring the breakdown of love. She wants to know why men either only want her body, or only want her mind, but never want all of her, together, as one. She posts quotations and songs about heartbreak on social media. Great, now Facebook knows she’s melancholy. What will their algorithm do with that data point?

Everyone feels sad for her, that her father died when she was 11. They say it must have been difficult, growing up without a father. But growing up with a father was difficult too. That’s the part she never talks about. The overflowing garbage cans of empty vodka bottles and empty scotch bottles that took up too much space in the house. The erratic seesaw of closeness and distance, of whispers and bellows, of security and instability. The mounds of pastel Care Bears and wide-eyed Pound Puppies he brought home for her to hug, and how much she loved them. The nights he came home late, confused, “not himself” and forgot to hug her. The hyper-vigilance of waiting for an imperceptible shift in tone or tenor, so she could shift herself to maintain a collective balance, to keep peace, to keep everything and everyone together. The perpetuation of love, hurt, and abandonment as a cluster. Illness is embedded in those patterns. Trauma gets stuck in those overused nerve cells and neural networks. No wonder she accepts a repetitive cycle of romanticized heartbreak. No wonder her body resonates with the erratic dance of emotional abuse from the men who enter and exit her energy field.

“Write about your experience with chronic illness,” she has been told. “Write a book, write an article, write a memoir. You’re such a good writer, share your story.” But it doesn’t matter where the story begins. It doesn’t even matter where it ends. It just “is.” Past, present, future. There, everywhere, nowhere, and here. Most especially here. All the time. Here.

Where exactly is here?

Here is a place of silence without stillness. Connection without affection. Sleep without rest. Expression without release. Closeness without intimacy. And words. So many beautiful, painful, awful, wonderful words … words too weak in composition to transcribe meaning, words too muddled to attain resolution. Words that people hear and translate for themselves, to instill a reversal of context that the author may (or may not) have intended. Clinging to words, manipulating words, grasping for words, to believe that maybe words matter. Playing with words in a continual attempt to express identity…. to reclaim self…. to announce presence…. to thwart absence. Words to validate the “here-ness” of her existence, and the mirrored reflection of everything real that otherwise seems to be an illusion.

Here is where Wonderland crashes into Oz and then morphs into Neverland.

Who is here?

I am here. A lot of other people are here too. But, like an episode of Black Mirror (or the Twilight Zone for those yet to upgrade to a modern surrealism), “here” is both the same and yet simultaneously different for everyone. It’s a subjective experience of a constructed reality. And no diagnosis nor shared symptom profile nor parallel trauma history will ever make “here” a singular place that is understood by all.

For me, “here” sometimes looks like a solitary table in a cafe, where I sit with my laptop, fueled by caffeine, smiling at strangers, wondering why the woman next to me is allowed to bring her cat inside, let alone prop him up on the table …. or standing in the supplements section of the local organic shop, looking for discounted deals on the purest forms of magnesium and astragalus … or starting text messages and emails and letters that I never send because I’m just too tired to say anything worthwhile… or letting the guy walk (or run) out my door in debilitating heartbreak without expecting him to return… or feeling stuck, inside barricades that I never raised, inside borders that I never intended, and crying, and coughing, and not breathing, not eating, not sleeping, because I’m disappointed in myself for not finding my way out of Narnia.

(yet).

A friend of mine once told me to end such sentences with the word “yet.”

She was right. It seems to help. A bit.

While “being here” has never made sense to me, I’ve stopped asking “how did I get here?” I know better than to expect others to “get me out of here.” And wisdom tells me there is a “reason for being here” (which also leads me to believe I could have written a much better finale to Lost).

So, here I stay… and wander… for now… cautiously approaching any bottles with a label “drink me” and quite suspicious of anxiously tardy rabbits.

 

 

 

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The Princess & the Pea probably had Lyme Disease.

* * *

“…The water ran down from her hair and clothes; it ran down into the toes of her shoes and out again at her heels.  And yet she said that she was a real princess. 

Well, we’ll soon find that out, thought the old queen.  But she said nothing, went into the bedroom, took all the bedding off the bedstead, and laid a pea on the bottom; then she took twenty mattresses and laid them on the pea, and then twenty elder-down beds on top of the mattresses.

On this the princess had to lie all night.  In the morning she was asked how she had slept.

‘Oh, very badly!’ said she. ‘I have scarcely closed my eyes all night.  Heaven only knows what was in the bed, but I was lying on something hard, so that I am black and blue all over my body.  It’s horrible!’

Now they knew that she was a real princess because she had felt the pea right through the twenty mattresses and the twenty elder-down beds. Continue reading