Cocoons, Chronic Illness, and FoNo

 

The doctor on the screen seemed to proclaim pandemic freedom

In the Pax Coronavax Mask De-Mandate of 2021.

Vaccination gives you wings

To soar beyond covidian quaran-time.

The jubilation among immune-normal folk coursed palpably,

With electric enthusiasm across airwaves and social media.

At last!

Smiles are back,

And those unsightly mask indentations?

Archived with the memes on toilet paper shortages

And recipes for homemade hand sanitizer.

 

The joy was not unmixed, however.

Some of us found ourselves as deflated as elated.

Ten million Americans fell through the loophole

Referring the immunocompromised to their physicians.

Without normal (or any) immune response to vaccination,

Our wings are still waiting to emerge.

We abide in the cocoons of our homes

And the small community of healthy family and friends

Enfolding us in the wings of their immune response.

 

Without innate protection

Or shielding by the wider community,

The glimmer of hope of attending church in person,

Or congregational singing,

Or seeing a movie in a theater,

Or date-night dining (even on a restaurant patio)

Receded again over the horizon

Into the unknown future.

 

The peculiar truth that most everyone

With chronic illness, disability, or cancer will understand,

And healthy people may doubt,

Is that for millions of us

The world opened up

When it closed down.

For the first time, all worship

Went online,

And we were truly worshiping with our church

And family, united in our mutual geographic separation.

Bible studies and conferences, too,

Education from kindergarten to doctoral seminars,

Book launch events, writing conferences, movie premieres--

All those elusive, inaccessible commonplaces from the healthy world

Opened accessible doors (rather, windows) to us

Whose geography is boundaried less by lines on a map

Than by our diagnoses and disability.

The able and disabled worlds commingled,

A flash of silver lining in the terrible storm thundering around us all.

 

Now healthy people are celebrating the termination of worship live streams[1],

Kicking video conferences and virtual Bible studies to the curb,

Rejoicing at returning to travel and festive celebrations:

Baptisms, graduations, ordinations,

Marriages and memorials,

Bucket-list vacations.

 

I celebrate your celebrations,

Rejoice with your rejoicing.

 

Yet I also grieve.

I grieve the loss of solidarity and access

As the able world takes flight and soars away.

As you wing your way back to normal,

Remember us who lament our necessary absence

From the camera rolls and photo albums

Of even those very dear to us?

As you leave your quarantine chrysalides behind,

Remember how confinement felt,

And let that remembrance beget compassion

For those for whom it persists?

Consider leaving the window of remote access cracked open

For our disabled, homebound world

To connect with your wingèd wanderings, your worship,

Your wonder at a world made novel by long confinement?

Remember how your isolation felt for 12, 15, 18 months,

And how worship live stream,

Zoom birthday parties,

Skype Bible studies were manna to you

In the wilderness of quaran-time?

 

No one craves manna meals forever,

But they are waybread and sustenance

Through the barren places

On the way to the land of promises fulfilled.

 

Until the pandemic is over

Or herd immunity achieved,

Or some immune booster devised to bolster

The trigger-happy immune systems with terrible aim

Like mine,

For which the least bad treatments remove bullets from the chamber of my defenses--

Until then, millions of us high-risk, immunocompromised patients

Are still questing for contentment,

Joy,

Peace,

Within our four walls

And masks

And well-scrubbed, alcohol-parched hands,

Grateful for virtual opportunities for community,

Worshipping from home in the chair or bed we can tolerate,

Taking comfort in some vaccine protection

When we leave our sheltering cocoons

For frequent medical appointments, but

Loving most of our people from afar;

Missing marriages and memorials,

Baptisms, graduations, ordinations,

Unless streamed;

Cherishing the hugs of the few who crawl under our burdens

By reinforcing the walls of our cocoons

With their own vaccinations, masks, clean hands,

And sacrificial steadfastness in covidian quarantine,

Though for their own sake they could spread their wings and soar again.

 

But, truly, as the healthy and able emerge from their cocoons

And launch themselves back into pre-pandemic life,

The fellowship of the suffering

Find ourselves struggling with some FoNo:

Not fear of missing out (yet some of that too),

But Fear of Normal.

Fear of being left behind by Normal.

 

I’m asking for a friend,                                                                                                                                            

And another,

And another,

And another,

And a few more beyond that,

But also for myself.

As your world reopens,

As your protection bursts your cocoon and gives you wings,

Please don’t forget to remember us

You’ve left behind.

 

6/25/21

___________________________________________________________

Sources:

*Private patient portal conversation with my rheumatologist

*”It Isn’t Over for Us” USA Today article

*CDC guidelines for immunocompromised patients after vaccination

*American College of Rheumatology clinical guidelines regarding COVID-19 vaccination

*The highlight reel of the above guidelines

*Excellent list of patient-focused resources from the American College of Rheumatology

*RA and COVID risk

*methotrexate and vaccine response

*what immunocompromised individuals should know after vaccination

*what immunocompromised individuals can do after vaccination

---

[1] for some churches