Fear

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

/ Lisa Gastaldo / Leave a comment
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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

Skin Hunger is Real and it Scares me to Death

/ Lisa Gastaldo / Leave a comment

Will staying out of touch remain our reality?

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Tell me in a world without pity
Do you think what I’m askin’s too much?
I just want something to hold on to
And a little of that human touch
Just a little of that human touch*

There’s a premise that has been disturbing me of late, looming in my hopes for the future like a murky fog: After months in isolation, will we remember how to reconnect? Will we be wary, cowering from physical contact? Can we exist in a world where exchanging hugs or pats on the back become taboo? If so, what will be the repercussions on society’s soul?

Touch has a memory — John Keats

I began writing when I was a recent widow. In my first piece, I attempted to describe how “unprepared I was for the craving of non-sexual intimacy…” How the yearning for simple touch was a physical affliction akin to detox. Each time I witnessed a spontaneous caress between a couple, I withered a little bit more.

Touch is the first sense we experience, fostered from the moment we are born. It is conveyed via the organ that completely envelops us, yet often it is an afterthought — until it is absent. My nephew was born prematurely with numerous health issues. Laden with medical equipment, he looked more cyborg than human. My brother and sister-in-law remained affixed beside his sterile bassinet, pining to soothe him.

Numerous studies have demonstrated the benefits of skin-to-skin contact, particularly in preemies. Also known as kangaroo care, the baby is stripped of garments and cradled in their parent’s bare chest. Stabilizing breathing patterns, regulating sleep and increased cognitive development have been linked to this practice. Benefits to the parents include decreasing stress and increased breast milk production. And so, my brother and his wife anxiously awaited this treasured thirty minutes granted to them each day. This nugget of time more precious than gold.

If one is out of touch with oneself, then one cannot touch others — Anne Morrow Lindberg

The deprivation of human touch has been termed “skin hunger.” Insomnia, anxiety and aggressive behavior have all been linked to the lack of physical contact. According to Psychology Today,

People who feel more affection-deprived: are less happy; more lonely; more likely to experience depression and stress; and, in general, in worse health.

So, what does this mean for those sheltering alone or front liners sequestering themselves from loved ones? Social distancing is now how we demonstrate affection for our fellow man. Stay six feet apart or you may end up six feet under.

When we finally emerge from our quarantine cocoons, will we recall how to interact? Will fear cultivate hesitation? Dr. Anthony Fauci has advised we never shake hands — ever again. Clothing categorized by PPE quotients are sure to appear across our Facebook feeds. Attire labeled with antimicrobial factors may soon be touted in Amazon Lightning Deals. The last episode of Saturday Night Live had a soap opera spoof parodying the perils of dating during an outbreak. Daniel Craig attempts to make out with Kate McKinnon through a large swath of plastic wrap. Are full-body condoms far behind?

The faintest glimmers of “flattening the curve” are on the distant horizon and some have started to contemplate what society will look like once the immediate COVID-19 threat is over. When queried about what our future holds during a recent White House briefing, Dr. Fauci replied:

When we get back to normal, we will go back to the point where we can function as a society. But you’re absolutely right. If you want to get back to pre-coronavirus, that might not ever happen in the sense that the threat is there.

It is said that every time we embrace someone warmly, we gain an extra day of life. So please embrace me now. — Paulo Coelho

I hail from a boisterous Italian family. No hello or goodbye is without an embrace and a kiss on the cheek. Our personas burnished by such affections to glistening patinas. If that is taken away, we might as well be mute.

What will happen to the rush of holding someone’s hand for the first time? Or the intoxicating scent of a newborn nestled against your shoulder? How will our collective psyche be altered without such stimuli? How out of touch can we be and still maintain our sanity?

The Great Toilet Paper Shortage of 2020 will be recorded in the history books as the first panicked response to the pandemic. Will the next be a run on HAZMAT bunny suits, beekeeper apparel or even fencing uniforms? Always on guard, will each encounter be a duel? Five touches and you’re out.

This is my second bout with touch deprivation. My greatest fear for myself — for society — is that we become calloused. The wounds of confinement scab and scar, smothering our ability to register emotion.

You might need somethin’ to hold on to
When all the answers they don’t amount to much
Somebody that you can just talk to
And a little of that human touch*
*Bruce Springsteen

#COVID-19 #Relationships #HumanNature #MentalHealth #Touch #NewNormal

Going Down the Rabbit Hole During a Pandemic

/ Lisa Gastaldo / Leave a comment
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Photo by Paweł Czerwiński on Unsplash

An invitation to a pity party

It was inevitable, no matter how hard I tried to prevent it. A conversation the night before had ignited a pessimistic spark. Dread simmered in my dreams. I awoke sullen, buzzing with trepidation. Before long, I was descending down the rabbit hole into one rager of a pity party.

I habitually obscure my struggles. When occasionally asked how things are going, downplaying is my diversion. Raindrops on roses and all that. Everything is practically perfect.

Or so I would lead them to believe.

Secretly, I crave reassurance — thirst for sympathy. I expect my friends and family to discern what it truly going on — even while I am reciting “I’m fine,” or signaling all is well. “Where is their consolation?” my pathetic ego whimpers. Aren’t they clairvoyant? Can’t they perceive the stress vibrating through my veins? I pay no heed to my flair for camouflage.

One hell of a party pooper

So, on this particular morning, I was wallowing in mire as thick as tar. To be honest, it had been percolating even before our isolation mandates. My uneasy temperament had been nuked into Hulk-sized anguish by our collective crisis. The scale in my bathroom bore witness to this mutation. Perhaps binging on Lays and Thin Mints had exacerbated this state of affairs. Who’s to say? Did you know chocolate left in the back of the cupboard for three years is still somewhat edible? Especially if you down it with a glass of cabernet. But I digress…

Of course, anxiety didn’t miss her invitation to my shindig. Feeling sorry for myself was the theme for this soiree. Loved ones’ supposed lack of telepathic abilities set the mood. Annoyance at succumbing to the dark side added just the right amount of oomph. Incensed and dejected, I yielded to what was to come: Plummeting to the depths of the rabbit hole.

It’s my party and I’ll cry if I want to

There’s a hollow emerging in the sofa from days upon days of lethargy. I burrowed into the cavern like a grizzly nestling in for hibernation. The drone of the local tv news lulling me into a pacifying stupor. I was lounging in the void between panic and apathy when I received a text from my boyfriend. He wanted to know how my day was going. Seriously?! Couldn’t he detect my tormented spirit from his home six miles away? I thought we were on the same wavelength.

I expressed my angst — or so I thought. I sent vague texts about how no one understands without any further elaboration. My ire escalated as he seemingly couldn’t grasp the complexities of my despair. I even chastised him for not responding to my messages quickly enough. If he truly cared about me, his replies should be immediate, shouldn’t they? My conceit was enormous. I sent one last snippy retort. He gave me a call.

The onslaught began.

There was no slowing my roll. I sniffled and sobbed and despised myself for conceding to this display of vulnerability. I spewed my presumed misfortune and disappointment in my family, my friends and him like a machine gun. He listened, gently chided me when I deserved it and consoled me as much as possible until my arsenal was depleted. His character must be fabricated from Kevlar.

We are all Alice

When I first sat down to write this piece, I had planned on eloquently expressing my dismay. Catalog all that beleaguered me. That would garner me the outpouring of empathy I coveted. I envisioned relishing every last morsel. My self-indulgence was intoxicating.

And then I sobered up.

In reality, what would have that accomplished? Who was I to place such irrational expectations upon those I hold dear? Moreover, the entire population is spiraling down rabbit holes — stepping through their own looking glasses. It’s hubris to deem mine more abysmal than others. We are entering a new Wonderland with a yet-to-be determined set of rules. “Curiouser and curiouser,” we collectively cry. Brooding over news bites and statistics to assess our safety quotient.

If we are not careful, misery may be an even worse contagion that the virus itself.

That’s not to say that throwing your own pity party is unwarranted, if not crucial, to process the enormity of a world turned upside down — society’s ambiguous future. In my case, it proved to be a vital release, albeit a not very glamorous one. (Thankfully, no mascara was mistreated during this melancholy madness.) The trick is not to overstay your welcome.

Capturing the moment to seize the day

A good friend of mine recently told me she is choosing to say, “I’m having a bad moment,” instead of, “I’m having a bad day.” This slight shift in perception reminds us that moments pass. They are not eternal.

I’m striving to be more mindful of cheerful interludes. (No, this isn’t another boastful #blessed list.) Purposefully capturing periods of joy — contemplating gratitude. Protecting them in my memory so I can reflect upon them when worry shrouds my contentment. Call it my attitude stimulus package:

  • I am thankful for a roof over my head, potato chips in my pantry and plenty of toilet paper.

Such illuminations beckon me out of my rabbit hole. I shouldn’t ever squander these endowments.

Typically, I have little use for trite mottos. Life is too nuanced and our world more precarious than any sentimental declaration, but they can be a beacon. So here goes: Acknowledge the suck. Allow yourself to lament. Rail against whatever hardship until you are spent. Then, reboot your disposition. Create your own relief list.

The diem ain’t gonna carpe itself.*

*As seen on my new favorite t-shirt on Amazon and other fine vendors of pithy attire.

Beware the Locksmith: A Tale from Home Security

/ Lisa Gastaldo / Leave a comment

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I opened the door for the locksmith. Possibly mid-sixties. Lint-colored spirals protruding out from under his snapped-brimmed cap. Trach tube in his neck. He inhaled deeply and put a finger to his esophagus. “I’m here to open your safe,” he garbled. Self-satisfied with benevolence, I allowed him into my home.

Graciously, I introduced to him my twenty-year-old son on the couch. We approached the staircase and the locksmith remarked, “You don’t look old enough to have a son that age.” The ease of which the comment slipped from his throat led me to believe this was his customary compliment, burnished to a glassy slipperiness from years of smooth talking. My kindheartedness was now mixed with a marginal depression over my apparent elderly allure. Arm candy at the senior center was not how I pictured my reentry into the dating realm.

The locksmith and I continued up the stairs, through my bedroom, and into the closet to my safe. He assessed my vain attempt at security and slowly revealed his tools. They were wrapped in a leather pouch, similar to a set of chef’s knives. “Why don’t you sit down beside me?” he asked. I obliged, anticipating the innocuous gestures of a man penetrating senile territory. He took another copious breath and plugged the medicinal hole in his gullet.“Are you single?” he inquired. His lack of conventionality was unexpected. Men customarily demonstrate their exceptional endowments and household worth as a prelude to the courtship dance: “See how virile I am? I just fixed your dishwasher, painted your bathroom, laid a floor! Any pipes needing unclogging?” His presentation of implements reminded me of the dentist in “Marathon Man.”

“Is this the safe?” he rasped, startling me. I said yes and explained I had lost the key and needed it opened. The locksmith probed about my marital status once more and I announced I was widowed. He mumbled with mock empathy that I was too young to be alone and needed to enjoy the companionship of men. The tone of his guttural cajoling unnerved me and episodes hoarded in the alcoves of my memory flooded in: The trip when I was twelve, alone on a Greyhound bus and the oily man sat beside me, trapping me by the window. He left his hand on my thigh for the entire ninety-minute ride as he queried me with calm eeriness. The incident that happened in my early twenties as I strolled alone down a residential side street. A gentleman in a parked car asked for directions and I naively strode over to answer. He was midway through his jack off.

Treading through my rip current of alarm, I informed the locksmith I wasn’t ready to date and the conversation was making me uncomfortable. He put forth a counterfeit apology. The safe had yet to be inspected.

When he finally displayed his expertise and cracked the safe, I requested a pair of keys. He went outside to get the supplementary mechanisms needed to craft the small devices. “I could take him,” I calculated. He’s slighter than me and obviously unwell. Plus, my college athlete son was just in the next room. Weapons, however, would alter the dynamic. Channeling my finest Olivia Benson, I peered out my door to commit his van to memory: boxy, white, plain, no markings. Archetypal abduction vehicle.

I contemplated the consequences of ending the service at that moment, weighing the acceptable balance of necessity to trepidation. The imprudent desire to have my valuables secure tipped the scales. We proceeded upstairs once more, taking my son with us.

My unsuspecting child and I reviewed the contents of the safe while the locksmith crafted the keys. My son later confessed he thought I requested his company to protect our family fortune: birth certificates, jewelry, spare cash and his father’s most precious baseball cards. He still viewed me with elementary innocence and wasn’t accustomed to observing his mother fend off suitors. The keys were completed without further incident and we escorted the locksmith down the stairs.

He went out to his utility van to get the invoice. “What was the price I was willing to pay to secure his departure?” I wondered. He reentered, presented the bill for his indecorous service, and asked to see me again. I marveled that he could completely disregard the stench of anxiety spewing from my every pore. Or maybe he perceived it as a pheromone? “Ballsy,” I silently diagnosed and then expounded once more that I wasn’t inclined to begin dating. He continued the inquisition undaunted, requesting a favorable Yelp review. “Absolutely no f’n’ way,” I pronounced privately. I informed the locksmith I would. The gentleman relentlessly advanced his offensive surge as I compensated him for my afternoon of apprehension: “Can I call you in a couple weeks? Will you be ready then?”

The trembling surfaced as I secured the door.

Originally published in @HumanParts @Medium.com