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

united-nations-covid-19-response-BsWzDtNmnro-unsplash

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

The Worst Gets Better: A 30th Anniversary Love Letter to My Dead Husband

610042680.409165

May 5, 1990

It’s Cinco de Mayo, 2020. Five years since I wrote my first letter to you. Thirty years since our wedding day. Eleven and a half years since I lost you.

 

So much has transpired since those monumental dates in 1990, 2008. I am no longer the girl you married, nor the same woman you left behind. I wonder if you would even recognize me. Half a generation has passed. Very little in the world appears the same.

 

Your parents have both made their pilgrimage back to you. I wish I could have witnessed those reunions. The void that shadowed them after you left spilling over with joy. The pride in seeing their only son bursting in celestial technicolor.

 

Our two teenage boys have become adults. Complete opposites in looks, personality, and temperament. Yet, each one is a perfect reflection of you. My DNA fills in gaps here and there. You coached them on how to be men. They are your living history.

 

No more talk of darkness
Forget these wide-eyed fears*

Although we knew your time with us would be abbreviated, we were still caught off guard. Ill-equipped for the abruptness and finality of it all. It took all three of us some time to regain our bearings, reset our compasses. Each of us veered off course, sometimes plunging to the depths of despair. Thankfully, our squalls and tempests didn’t occur simultaneously. The other two were able to shore up the one faltering   – holding the tethers tight until we could stand on our own feet again. Still, it took nearly a decade for our quartet minus one to complete the journey.

 

I’ve long since sold the house. Most people nodded in approval. “Too many memories,” is what I’m sure they supposed. But they would have been wrong in that assumption. It was our house, but our foundation was in us. You taught me that. Counseled me to view our abode as an asset, not a mausoleum. When it became too monumental to manage, we moved on  – the memoir of our life together tenderly stored in our hearts.

 

When seeking our next home, I set my heart on an area that common sense  –  and my realtor  –  told me was out of budget. I was determined not to compromise, somehow secure in the conviction that I had located my new neighborhood. Your years of faith in me had instilled a confidence just beginning to bloom. My perseverance was rewarded, the market took a dip, and I found a lovely townhome. I knew you would have commended my triumph.

 

You’d appreciate where we settled. Compact and cozy, yet not too confining. No cumbersome yard to tend to  –  that was always your domain, but a small patio shaded by magnolias and adorned by a few low-maintenance flowers. I do miss our rose garden  –  our quests to discover uncommon varietals that caught our fancy. “No humdrum track home shrubs for us,” was our landscaping motto.

 

It was more than a relocation. It was the beginning of a rebirth  –  a life conducted by a soloist, no longer a duet. Downsizing was cathartic. I took very few furnishings with me. Only those cherished deeply transplanted to the new home: The photo albums you meticulously curated. The bedroom furniture you said we couldn’t afford  –  until I negotiated a deal too good to let pass. (My refusal to pay retail for anything was one of the traits you found most endearing.) Almost everything else was sold to finance the move, except for a trio of toolboxes. Each filled with implements and gizmos carefully selected from your considerable collection – one crimson case for each of us  –  to help us tend to our domicile in your absence.

 

Promise me that all you say is true*

As much as I protested during our wee hour “what if” conversations, you were correct in asserting the benefits of companionship – of reopening my heart to love. I was in danger of becoming too comfortable in the inertia of loneliness. So, I started dating. My first few experiences were like the spits and spats of an old jalopy restarting after a decade in storage: cobwebs clogging the valves, a couple backfires, and the groanings of a “mature” engine resisting movement.

 

It took me more time than most to regain my momentum, but I did end up having my first real boyfriend since you at sixteen. He was a good man. He honored my parents, our boys, even you. He would light up at my smile, but it began to flicker. We were mismatched puzzle pieces trying desperately to force the connection – only able to bend so far before the relationship snapped apart.

 

All I want is freedom
A world with no more night*

Next year, the scales will tip. I will have more years of my life spent without you than with you by my side. I can feel them teetering. At times I feel quite precarious, unbalanced. More often, however, I feel the rush of anticipation. Looking ahead with hope instead of dread. I used to feel unprepared about what is to come. Perhaps, I am ready now.

 

Happy Anniversary!

Loving you always, 

Lisa

 


 

 

*All I Ask of You – Andrew Lloyd Webber
Sung at our wedding. May 5, 1990


This post previously published at Hello Love | The Good Men Project | @Medium

Welcome Back: A Bitch’n Look at Growing up in a Far Out Time

retro-circles-and-stripes-60s

Image by Karen Arnold from Pixabay

70s Mashup – Revamp

When I was a young child, we moved from our little house on the prairie to what my parents dubbed the “wild kingdom” of Ohio. My best friend, Rhoda, lived next door and had migrated from the streets of San Francisco. She had hair of gold, like her mother. That girl got what was happening in our South Fork neighborhood. She knew why McMillon and his wife were at odds with the Partridge family. She understood why the Waltons disapproved of Alice’s courtship of Eddie’s father and explained to me what made Mork and Mindy such an odd couple. Chillin’ in our saddleback Dittos and rainbow knee socks, we would have long hart to harts about our cute neighbor, James, age 15. We’d puff candy cigarettes, sip Shasta and listen to WKRP in Cincinnati all afternoon, delighted in the dream he’d think we were hot stuff.

 
Laverne and Shirley were our classmates. Something always happened whenever we got together. Phyllis was the chick who thought she had the lowdown on everything. In the dark shadows of our homeroom, Room 222, she first laid down the groove about the facts of life. Our funky friend, Maude, lived with her nanny and our professor, Dr. Quincy. Maude claimed to have the skinny on love, American style. She insisted Phyllis should get her mouth washed out with soap for spreading such a load of phooey. “Get real!” Donny and Marie chimed in, “That’s totally bogus!”

 
For P.E., we learned Kung Fu from Mr. Kojak. We had yearly assemblies where Trapper John, M.D. informed us what to do in a medical emergency. Police Captain Barney Miller explained how we should duck and cover should S.W.A.T. ever show up at our school. Our principal, Ms. Mary Tyler Moore, would do anything she could to make our dreams come true. “C’mon! Get happy!” she would chant to us. That schoolhouse rocked!

 
Occasionally, Rhoda would come and knock on our door. We’d hop on our banana seat Schwinns and ride to hang with the McCloud twins, Starsky and Hutch. Those boys were making their way the only way they knew how always setting their course for adventure. They would try to get us to play “the newlywed game.” We read enough Teen magazine to realize they were just trying to catch a peek of our hee haws.

 
Those were happy days with our friends and family. I was the oldest of three girls with five brothers. My mother, a true wonder of a woman, always wanted more kids. “No. No!” my dad would bellow. “This is it! Eight is enough for this mod squad!” We would all laugh in unison at his attempt to be hip.

 
It wasn’t always good times, though. Our friend, Chico, and the man next door feuded with Mr. Sanford and his son, Logan. “Run!” we exclaimed the day we saw Logan walk out of his house, carrying a loaded Baretta. He wanted all of us, especially Chico, to move away. After he fired the firearm into the air, the gun smoke lofted behind him like a white shadow. The whole gang booked out of there faster than Evil Kenevil.

 
We got inside as quickly as we could. “Wait ‘til your father gets home,” my mother counseled. “He’ll know what to do.” Later that night, my father explained that Logan had been involved in something called Operation Petticoat during the Korean War. The experience had left him a bit “mashed in the head,” as my dad put it. “Best to keep our playtime all in the family yard,” he declared.

 
During summer sleepovers, we would get freaked out telling tales about a mysterious man from Atlantis. At night, a gallery of fish would lure unsuspecting humans to his fantasy island. Our Saturday nights came alive when we ventured out with the Dukes of Hazzard Street. That didn’t sit well with our mutual friend, Beverly. “Hillbillies!” she would call the boys. “I’d much rather go with the Jeffersons or Bob Newhart. Now he’s an incredible hulk!”

 
I have fond memories of life at 2367 Columbo Lane. I wouldn’t trade those days for anything, not even six million dollars. Man, we sure did enjoy our childhood! We approached life one day at a time. We developed roots. We lived our lives based on the words of my father, Charlie: “Angels,” he would call us, “You can be whatever you want to be: rich man, poor man, beggar man, thief — it’s all up to you.” Those were the days!


This piece contains 80+ television show titles and theme song lyrics.

Did you catch them all?