The Woman in the Moon Face

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Image by Mona El Falaky from Pixabay

A pericarditis poem

Palpitations reverberate her ribs
Tremble. Thump. Squeeze. Tremble. Squeeze.
Staccato rhythms ricochet to her skull
Throbbing. Pulsating.
She awakens

Brain awash in a celestial haze
she levitates with caution
drifting to the vanity mirror
“Good Morning,” she sighs
to the Woman in the Moon Face

Half a year since the voyage began
Launched into orbit by an autoimmune flare
She tried to abort the mission
but there is no dousing
the combustion of chronic illness

Disease incarcerates her heart
Unrelenting gravity constricts her core
Shallow breaths through concrete
Each gasp measured
to preserve oxygen

Countenance circumnavigated by treatment
Her once lean expression
now eclipsed
Medications store plump reserves of blubber
encapsulating like a spacesuit

The image on her home screen taunts
A brighter, joyful time
Two years earlier
thin, carefree, euphoric
flanked by her sons beneath the Grecian sun

Averse to comprehend
this alien reflection
Reluctant to accept
the morphed figure as her own
The morning’s trek has made her weary

She retreats to her bed chamber
and dreams of normalcy

 

I Have an Autoimmune Disorder. Will COVID-19 Make Me a Second-Class Citizen?

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Photo by United Nations COVID-19 Response

All animals are equal, but some animals are more equal than others.

— George Orwell, Animal Farm

I, along with the rest of the world, live in fear of COVID-19. But, unlike most of the population, I am petrified of the aftermath. How will society view me — someone with a dysfunctional immune system — and others like me, once we completely emerge from our cocoons? Will I be shunned and segregated? Or will I be forced to isolate myself to “protect” my physical health? What will be the cost to my mental health?

Rheumatoid Arthritis (RA) is the systemic disease that has chosen to take up residence in my body. This parasite, as I choose to visualize it, can affect any organ and/or any joint at will — often spreading its tentacles in multiple areas simultaneously. My immune system is hyperactive. It goes to eleven and beyond when triggered, wreaking havoc in the process. People with RA are more susceptible to catching a virus, developing infections, and experiencing cardiorespiratory complications. In other words, I’m poised to hit the COVID trifecta.

So, what’s a gal like me supposed to do when restrictions are lifted? Proponents of herd immunity want everyone out and about so we can all catch it, recover, and develop antibodies. That is all well and good unless you’re one of the individuals most likely not to survive such a grand Darwinian roulette.

I realize I am not in the majority. We need to reopen our economy, get kids back in school, and restart society again as soon as possible for it to survive. It would be unrealistic (and selfish) of me to expect anything less. I just wonder if it will be safe for me to go out and play. Will I even be permitted? Is becoming a recluse my mandated future? Human contact reduced to the afterglow of a digital screen.

Underlying Conditions

Currently, I am unemployed. My chosen field, travel and events, has not only been shut down by the pandemic — it has been decimated. In all likelihood, it will be one of the last industries to recover. I am but a single droplet in a sea of millions that will be seeking new employment once our first crisis wave is over. It is illegal for an employer to inquire about medical history, but how long will that protection last? Italy and Germany are considering issuing COVID immunity certificates. Dr. Anthony Fauci told CNN the idea “has some merit” and is “being discussed.” All things being equal, won’t the candidate most likely to weather an outbreak be the more attractive option? I can envision a world where my economic future is regulated by my health condition. Ala Willy Wonka, I could be barred from entry to the factory unless I possess a golden Corona ticket.

Even if I can find employment, will it be safe for me? Restrictions are being lifted across the country, but the guidelines for those of us with autoimmune disorders are still in place. Web MD and Arthritis.org both advise avoiding travel (that’s a boost to my career), staying home as much as possible, and forgoing physical contact as much as possible with anyone outside your home. “Healthy” agoraphobia will be in control of my social life for the foreseeable future. Left behind while the general public moves on.

Our new world rests on order. The danger is disorder. And in today’s world, it can now spread like contagion. — Tony Blair, 2003

Apple and Google are ready to roll out their COVID Tracker app. Health agencies and the like will be able to use it to verify an individual’s COVID status. If you encounter someone who has tested positive within the last 14 days, you will receive an alert on your phone. Privacy issues aside for the moment (as of now, it will be up to the user to enter his/her COVID status), they have yet to minimize the number of false positives to an acceptable level. That’s reassuring. Can you imagine a chorus of viral emergency alerts blaring as you are walking down the street? People could be dodged like COVID zombies — their uncleanliness determined by Bluetooth.

The coronavirus has also recharged the call for a Unique Patient Identifier (UPI) system. All citizens would be issued a code, similar to a Social Security number, that provides access to their personal health database. Your entire medical record available within a few keystrokes. Proponents of UPI say it will make it easier for doctors to make diagnoses and provide proper treatment to patients. Citing security and confidentiality issues, opponents are wary of having such records under the control of the Federal government.

When HIPAA was passed in 1996, it mandated that the Department of Health and Human Services (HHS) create a UPI system. Two years later, Congress prohibited funding such a project due to privacy concerns. The subject has been debated every year since and in June 2019, the House voted to lift the ban. In September, however, the Senate appropriators left it in place and so it still stands — for the time being.

As a patient that has had been under the care of multiple types of physicians due to my condition, I can see the convenience of such a system. No more lugging charts from office to office or trying to remember all your past surgery dates and previous medications when filling out forms. The worry lies in how all that collective data will be analyzed. Will pre-existing conditions predetermine the quality of care? Will classifications based on antibodies and immunities ultimately determine our employment, housing, or recreation options?

That’s All Folks

I’ve read my fair share of dystopian novels. Set my eyes upon hours upon hours of post-apocalyptic tales. Perhaps they’ve altered my world view — sowed a bit of paranoia into my fertile imagination. Prompted me to foresee an ominous hierarchy at every turn.

There is no doubt I am overthinking. It’s been my stress reflex even before we were forced to steep in our own thoughts for months on end. I would like to think of my musings as a fine Earl Grey: Bold and rich, with a touch of aromatic citrus. More likely, they are like the gooey remnants remaining in a teacup forgotten on a desk for at least a week.

In reality, it’s the uncertainty of it all that sends my fears into a category 5 tailspin — whirling around me like the Tasmanian Devil. Oh, how I long to be Tweety Bird — projecting wide-eyed innocence, while always having the upper hand. Being ready for every contingency is what has always provided me peace of mind. Having some sense of control — even if imagined — is what settles me. The uneasiness resides in getting prepared for uncharted territory. Society’s next blueprint has yet to be drafted. Will I be deemed suitable for inclusion or cast off? There is nothing to but sit back and wait.


This post previously published @GEN | @Medium

My Bucket List of Gratitude

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I’m creating my own kind of bucket list. Not the usual listing of things I wish to do before I leave this earth, but an accounting of the gracious drops of kindness that have filled my pail to the brim. Whether the contribution was a single drip from an eyedropper or gallons upon gallons of generosity, all have buoyed my soul, washed away hours of pain, and carried me through turbulent trials.

And so I have decided to make a conscious effort to recognize these not-so-random acts. Some were as temporary as the morning dew, but equaling as cooling. Others have been like IVs, injecting nourishment continually. A few were summer storms: electrifying, powerful, and brief. Whether their perpetrators knew it or not, each and every one made a significant impact. They quenched my drought in spirit and left me flooded with gratitude.


Item Number 1: Clean House – Warm Heart

My first story takes place when I was a young mother of two toddlers: Albert, age two-and-a-half and Nicholas, just past one. Our family of four was living in Washington State, about 1,000 miles away from most of our family in Southern California. In the 18 months since we had moved there, we had entered into a lovely circle of friends. We were in the early stages of a close, tight-knit relationship. Only time would tell if the stitches would unravel or interweave for a lifetime.

Albert had become very sick with what seemed to be the flu. We soon learned his rapid decline was due to Type 1 diabetes (T1D). He was initially admitted to the hospital for 10 days. Within 24 hours of returning home, he acquired the stomach flu again – a very dangerous situation for any T1D let alone a newly-diagnosed toddler. He returned to the hospital for nearly another week to get him stabilized.

During both hospital stays, my husband, Matt, and I took turns sleeping by Albert’s side. We would both spend our days there, alternating who would remain with him at night and who would go home to take care of Nicholas. Thankfully, one of our friends offered to watch Nicholas while we were at the hospital. Her youngest daughter was his same age and they were like two peas in a pod. While we were learning the perils of over or under dosing insulin, our younger son was enjoying an extended play date.

Needless to say, Matt and I were frazzled. Lack of sleep and worry were leaching away our composure. Fear shrieked through our minds as we relearned how to care for our first-born child. Not to mention we had a one-year-old confused by the prolonged absence of his parents. And the house – oh the house! It was one more thing not receiving a clean bill of health. Gazing at this noise and confusion was only ramping up my anxiety. I felt utterly inadequate and completely unable to do anything about it.

In between hospital visits, another member of our group dropped by to bring us dinner and see how we were doing. This particular friend was the meticulous one in our circle. You know the type – the person whose home is pristine – spic and span – downright gleaming. No dust bunny is ever allowed to propagate in her abode. You’d think the envy would evolve to hate, but it never does, because she is just that nice and charming.

When she arrived, I was perched among piles of laundry that hoarded every square inch of my sofa. Additional mounds of clothing engulfed my feet. Mortified, I shoved the heaps aside so she could sit alongside me. We chitchatted. She asked if there was anything else she could do. What little was left of my mental capabilities silently screamed: PLEASE – HELP ME CLEAN MY HOUSE!!! Still, I was appalled by the vision of her viewing the expanding black rings crowning my toilet bowls. “No, but thank you. We’re doing OK,” I lied.

She didn’t let on, but she didn’t believe a word I said.

The second hospital stay re-initiated the child care round robin. One morning, when Matt dropped off Nicholas, our babysitting friend asked him for a key to our house. “In case Nicholas needs some extra diapers,” she explained. Not realizing that I would be humiliated if anyone saw just how wretched a pigsty we were living in, he handed it over readily. The moment he left, our group commenced their latest escapade of kindness.

Up to this point in this particular trial, I hadn’t really cried. To me, it was a luxury I couldn’t afford. Honestly, I was afraid if I started I would lose any ability to function. So, I corked my tears and kept going.

It was my turn to stay home with Nicholas. The moment I unlocked the door, I knew something was amiss. Instead of the dirt and mildew aroma that usually wafted a greeting, I was welcomed by the delicate scent of pine sol. The disheveled cache of clothing was neatly sorted and folded. The soiled apparel that had overflowed every bedroom hamper was now Downy-fresh and stacked alongside. Everything sparkled – including the toilets! Right in the middle of my kitchen table was a vase filled with fresh-cut flowers. I took one look at that arrangement, collapsed to the floor, and sobbed.

That moment of release is forever tattooed in my memory. It is the point in time I cling to when I am overwhelmed; when I suppose I am alone. Without waiting for me to ask, my friends sensed what I needed and went into action. They saw through my desperate bravado. They cut through the grime and the grit of the situation. By cleaning my house, they wiped away part of the chaos and polished my sanity. I am forever and for all eternity, grateful.

Confessions of an Autoimmune Disease

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Wake up,” I whisper, “I am here.”

In the bowels of the night, I launch my ascent.
Methodically, I commence the courtship.
My breath permeates her muscles.
My tentacles nestle in her joints.
Every sinew, every corpuscle, every ounce of flesh, entwined in my embrace.

She feels the subtle tingle amplify; vibrating deep and low.
It disturbs her slumber.
She is restless, but not awake,
Not yet.
I relish the thrill of her hovering between dreams and affliction.

Steadily, I escalate the intensity.
Her nerves spark and buzz with my electricity.
Soon, she will experience my unyielding static of discomfort.
She will forsake sleep.
She will find no rest.

She’ll be alert, but exhausted.
Achy and fragile.
Others might mistake me for a trivial virus.
But not her.
She recognizes my caress.

Sometimes, she is able to foretell my visitations.
She understands my predatory appetite is triggered by an inclement day or the howling wind.
She knows stress will summon my lust.
I’m not culpable during those times.
There is no one to blame.

I prefer, however, to catch her unawares.
To appear without anticipation.
How dare she plan!
I delight in the startled sorrow
The deliberate dampening of spirit.

I enshroud her in a haze of weariness.
If I remain long enough, she’ll not remember life without me.
I confuse her perceptions. I confound her aspirations.
She’ll want to soldier on.
She’ll long to collapse and be cradled.

I’ve chosen not to display the telltale signs of my presence.
Her joints are not gnarled. Her skin is unblemished.
She should be grateful.
No one sees how I persistently pulse within her.
Disturbing her peace just enough to make her distrust her sanity.

She tries to dull me with medication.
To drug and delay my assault.
But each day, my resistance builds.
I bide my time
While the pills, the injections, wreak their own collateral damage.

She is my everlasting dominion.
I am her parasitic possession.
She endures.
I prevail.
There is no tomorrow without me.

Why does she fight?
Why won’t she relinquish control?
Can’t she taste the sweetness of surrendering to my suffocation?

I am her beast.
She is my paramour. My concubine.
She comforts in my stranglehold.
I mask her true identity.
I am her real self.


Originally published on @Medium.com