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

The Gift of Thorns {2021}

Pioneer Spirit rose from Antique Rose Emporium

So to keep me from becoming conceited because of the surpassing greatness of the revelations, a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited. Three times I pleaded with the Lord about this, that it should leave me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong (2 Cor. 12:7-10, ESV).

Twice here Paul states the purpose of his thorn: "to keep me from becoming conceited" (v.7, ESV). Granted, the affliction also came from Satan to harass and torment, but even that harassment proved a gift to pierce his pride.

More than two decades of living with chronic illnesses (including the last 11 years of ever-multiplying areas of chronic pain and 2 cancers) have acquainted me with weakness and feeling harassed. Few days pass now without the slow hiss of punctured pride. I hear it every time it pains me to say, "I can't do this. Will you please help me?" My private tantrums over unattainable desires, petty or substantial, reveal my addictions to control and comfort. My discombobulation at God's refusals exposes the areas of life where I still want my kingdom, not His.

Perhaps some people grow accustomed to this weakness, truly "content" as Paul was. I have not yet arrived at that place. As soon as I think I have, some new pain or health problem ambushes me (but not God), increasing the level of difficulty beyond my strength so that I plead with the Lord again for the removal of the thorn that carves out more and more space in me for the power of Christ to dwell.

At this writing my chronic pain is mildly on the uptick and a new, odd, uncomfortable autoimmune symptom invites questions and patience with the weeks of healing required. My cancer history requires frequent tests, exams, and imaging which crowd out other ways I'd prefer to invest those hours and that precious energy week by week.

Covidian quarantine wearies the soul. As the nation reopens, Amore and I are still mostly cocooned at home and among a small group of fully vaccinated family members. My autoimmune disease and the treatments for it mean that, though I am fully vaccinated, I am likely far from fully protected from the virus that causes COVID-19. Even in that I must depend on the help of others to protect me through their vaccinations and continued caution while we wait for some sort of safe, effective booster for the 10 million immunocompromised Americans. Or for herd immunity.

Every life experiences thorns, none of which are easy or pleasant. I suspect every life has experienced multiple painful thorns over the last year and a half. Paul's threefold prayer for the removal of Satan's tormenting angel indicates his realistic assessment of his pain. This passage challenges our perspective on suffering because Paul does not stop at pleading for relief but opens himself to receive the blessings in the thorn:

•      Purging the pride that sets us in opposition to God (v.7; James 4:6).
•      Staging the perfect display of God's sufficient grace (v.9).
•      Opening the way through weakness for Christ's power to reside in him (v.9).

Paul so esteems these blessings that he boasts for Christ's sake about the tough stuff of life rather than in his heavenly vision.

Lord, thank You for the gift of thorns. We don't like them and will be pleased for You to remove them as soon as they have accomplished Your work in us. Until then, they are a gift from You, our loving Father. By faith, we thank You and ask that Your grace and power would shine all the more because of them. Amen.

This Beautiful Truth {Book Review}

 

In her latest book, This Beautiful Truth, Sarah Clarkson considers beauty as a means of grace, a gift from the God who loves and pursues broken souls. Specifically, she contemplates this theme as it applies to her own battle with an unusual form of the mental illness Obsessive-Compulsive Disorder (OCD). With brave vulnerability and beautiful prose, she draws the reader into her journey through brokenness into a measure of healing, through doubt into restored faith. Story, art, music, liturgical worship, and unwavering acceptance from a few people in her life became in her pit of despair like the rags cushioning the ropes Ebed-melech used to draw Jeremiah out of the cistern in Jeremiah 38.

My favorite chapters were the final two.

I was intrigued and challenged by the idea in the penultimate chapter that poetic insight is a gift that carries with it an obligation to help others also see (like prophetic vision). “Every work of art reaches out across the centuries, and each is a vision that casts a flame into the darkness. The wonder is that one great light wakes another. The song of one wakens the story of another. The story she told becomes the poem he made that kindled the painting in yet another’s hands. Each is a work of obedience. No artist can cast their flame of vision without a twinge of fear that it will simply fade or even pass unseen. But each is also a work of generosity: precious, private worlds offered in a self-forgetfulness that pushes aside vanity, insecurity, and perfectionistic pride. [Denise] Levertov is right. The visions set forth in the books (and paintings and songs) we turn to for hope are offerings of love, given in the recognition that we truly are members of one another. We all bear the same hunger for eternity. We all walk forward in the dark of doubt, reaching for something we can’t quite name. We all walk blind and grieved in our suffering. We yearn to discover who we are meant to become, what it is we hunger to find in those midnight hours when our hearts will not be sated. But the artists and storytellers and makers of song offer the inner vision they have known as a sign of hope to the hungering world. They invite us into the sacred, inmost rooms of their minds and let us stand at the windows of their own imaginations where we glimpse, ah, wonders we might never have dreamed alone” (Kindle location 2355).

The story in the final chapter of her Tante Gwen and the life she crafted when a family need brought her home from the mission field moved me deeply. Sarah writes, “She taught me the pleasure of taking the spaces we have (not the ones we wish we had) and making them beautiful, for room by room she made that little old house the work of her artistry. I watched her design a stained-glass window and save for it for weeks. And plan a room of built-in bookshelves and oversee their building for months…. ‘I guess this is beauty enough for me,’ she said. And I think that was the orientation of her heart, to open herself so wholly to receive the goodness of God in whatever place she found herself that there was no such thing as limitation or lack. There was just her willing heart, sated by the beauty God gave. I know there must have been darkness—moments when her burdens must have weighed like lead upon her shoulders—yet those did not define her story” (Kindle location 2462).

The book as a whole showed me my own seasons of grief and depression in a different light and reminded me of how story, music, and photography have been means of grace to me.

The writing and depth of insight into her own harrowing illness and, through that, to other crucible experiences make this a worthwhile read. My one wish, perhaps reflective of my own theological niche, is that she included more about *the* Beautiful Truth of Scripture and the gospel fleshed out therein. Profound suffering can make God seem distant, even absent, to our souls, and that can shackle our ability to engage the Bible directly, soulfully, and personally. That said, all the beauties of art, music, creation, story, liturgy, and human love are but shadows of that truest beauty and most beautiful truth. In my opinion, the book would be even better with explicit consideration of that ultimate end. For me, that is the only aspect falling short of five stars. The craftsmanship is exquisite.

I would recommend this book to those interested in Christianity and the arts, to those touched by mental illness (as patients, family, or friends), to Christians suffering other kinds of "dark nights of the soul" that make the Bible feel like someone else's love letter, and of course to those who already appreciate Sarah's lovely words and photos on her Instagram feed (@sarahwanders) and previous books.

Providentially, similar themes surfaced in the latest episode (the one featuring Curt Thompson) of https://www.sandramccracken.com/podcast. Listening to it was time well-spent, should you want additional discussion of the place of the arts in the Christian's mental health.

NB: These thoughts are based on a free prerelease galley version I received in exchange for an honest review.

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If you'd like to order this book and support this blog in the process, you may purchase via this affiliate link, and Amazon will provide me a small compensation for the referral.

The Electing Love of God and the Ebony Dog

 In memory of the late, great Ebony Dog (2006?-June 1, 2018)

My handsome date for the royal wedding broadcast, May 2018

Dogs pick their people, or so they say.

Once upon a time,

A black super-dachshund named Rex,

Left at a shelter so long the volunteers feared it was permanent,

Chose me to be his Person.

Before I had done anything for him, good or bad,

Before I changed his name to Ebony,

With the inscrutability of grace,

He picked me.

 

To the Ebony Dog,

I was never too much,

Even when I was.

He drew all the closer to my tears,

Kissing them away from my face.

He wagged his tail with my laughter.

He nestled against my leg or belly

In my hours upon hours of physical therapy exercises.

He never bored of my company,

Not even with months on the sofa

And years mostly in the house.

He made the love and companionship of God

Tangible to me in the funerals,

The heartbreak,

The five surgeries in five years,

The anxieties,

The upheavals

Of his decade as the canine of the couch.

He loved the people I loved,

But only because I loved them.

His favorite place to be was at my side.

No matter what.

 

To the Ebony Dog,

I was never too little,

Even when I was.

He consented to Amore walking him without me,

But he sulked all the way to the turn toward home

And strained at the leash the rest of the way.

Even in those final days

When he collapsed in the living room

Before my shocked and stricken eyes,

And I couldn’t lift him off the floor where he'd fallen,

Into the car, to drive him to the vet,

As I rocked myself and wept,

Waiting for help to come to help us both,

He tried to wag his tail when I reached down to stroke his ears

Or tried without success to find the place of pain.

I couldn’t help my most constant companion,

My de facto emotional support dog,

In his time of greatest need,

But there he was, telling me

It would be all right.

 

That last morning in the vet’s office,

My weakened, struggling dog,

Who would normally be trembling with anxiety

And hiding under a chair,

Resisted us, tried to jump off the table

And get away from the hands trying to help him,

To ease his suffering.

I told my mother afterward,

And her response was instant:

“He didn’t want to leave you.”

“You think he knew that was what was happening?”

“Yes. He was a very perceptive dog.

He never did like being separated from you.”

 

His constant, lavish, undeserved, undeterred affection,

With the inscrutability of grace,

Chose me

To be his Person.

It was one of the greatest earthly gifts

I’ve known in seven weeks of years of life.

In his love I read a parable of

The unconditional, electing love of God.

To Him I am never too much

(Because He is always bigger),

Never too little

(Because He is always enough),

Always accepted and acceptable in the Beloved,

Chosen and blameless in His eyes.

His affection is constant, unfailing,

Not bound by dog years or pages on a calendar,

Not excluded by quarantine or locked doors.

Though the Ebony Dog has left me,

The God he pointed to never will.

He stopped at nothing to be with me—

Becoming human flesh,

Giving His only Son,

Showing me my sin and His salvation,

Birthing faith in my heart—

To unite me to Himself forever.

Who, indeed, shall separate me from Him?