A Prayer for Hard Medical Anniversaries

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A Prayer for Hard Medical Anniversaries

 

God of Hope, God of all comfort, God of healing:

This day marks a sorrowful anniversary—

So many years since the illness that continues to change my life,

Since the cancer diagnosis,

Since the accident,

Since the medical label that transformed every aspect of my days.

It is a death without a grave,

Grief without a funeral

Or other rights of communal mourning and lament.

 

You alone truly understand the depth of my heartache

And the distinct sorrow of those who love me and share my burden,

Weighted by it alongside but outside me.

 

I grieve the old me that may never return,

The holistic, multifaceted cost of this illness, this disability,

The choices my body makes for me,

The freedoms and dreams and hope stripped away,

The damage to cherished relationships,

The missed community celebrations, the exclusions, the lost opportunities,

The time redirected to medical tasks,

The increased energy required for the most basic personal tasks.

 

I grieve the invisible, unspoken milestones

like the last time I was healthy in my dreams,

The last time I went to church or a concert or a wedding or a graduation,

The last time I ran or hiked or danced

Or worked or cleaned or cooked

Or spent a day making music or curled up in a bookshop chair,

The last time I could take a shower without careful planning and pacing.

 

I grieve the hurtful words denying or blaming me for my weakness,

The realization that much of society regards me as both "less than" and "too much,"

The shame and gaslighting.

 

Come alongside me today, Abba Father,

Suffering Savior,

Counselor, Comforter, Advocate.

Comfort the sadness;

Make Your loving presence known;

Guide and provide in medical care;

Cure this affliction if You will;

Heal my heart, even if my body never recovers in the land of the living.

Thank You for Your promises,

Your presence,

Your intimate companionship even when I am most alone.

 

Thank You for knowing, loving, and holding me in my brokenness,

Though all others forsake me.

 

Thank You for what You have disclosed of Yourself through my desperate dependence,

For Your strength in my weakness,

For the sufficiency of Your grace in my thorn.

 

Thank You for the precious gifts of kind words and practical help,

For the foul-weather friends who have stood fast at my side and wept with me,

For the companions in the same medical storm

And our fellowship in these sufferings.

 

Thank You for the hope that this same trial is actively producing for me

An exceeding, eternal weight of glory far beyond all comparison,

that it is not wasted but generative.

 

Thank You for Your love which conquers, redeems, and transforms all,

Even this,

Into glorious good.

 

Thank You for using this to make me more like my Savior.

 

Thank You that nothing disables me from knowing You—

Which is true and eternal life—

Or from knowing Christ in the power of His resurrection

And the fellowship of His sufferings.

 

Thank You for the hope of glory,

For the whole, glorious, redeemed body You are preparing for me

in the day of resurrection,

For the hope of no more death, no more alienation, no more tears,

For the hope of all these locust-eaten years to be restored.

 

Thank You for the everlasting promise You will be with me now,

In the pain and weakness and difficulty,

In the loneliness,

That You will hold my hand,

That underneath are the everlasting arms,

That I am loved with an everlasting love.

 

But today, Lord, I grieve.

I hurt. I lament.

The brokenness overwhelms.

I want enduring hope, but even that must be Your gift.

I believe; help my unbelief,

In Jesus’ name.

Amen.

 

Anchorhold

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Anchorhold: A Poem

  

Here I am, suburban anchorite:

Chronic illness my cloister,

My home my hermitage,

Caregiving my enclosure.

My bare voice sings praise alone in my cell

With the absent-present congregants in my ears.

The mockingbird leads the avian chorus;

I pass the peace to the dragonfly on perched on the other side of the glass.

I pass along the comfort I receive

From the Father of mercies.

A living stone, embedded in the temple of the Body,

Walled in, communion mediated by windows 

In my wall, on my desk, in my hand,

Attached yet excluded—

Invisible illness hiding me invisibly away

From the rest of the body—yet still part of it,

Never parted from my Head, the Beloved.

I am a suburban anchorite,

But the burdens and bricks which anchor me here

Anchor me to Christ.

Burden-Bearing God

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Blessed be the Lord, who daily bears us up;
God is our salvation. Selah"

Psalm 68:19 ESV

Burden-bearing God:

You hold us up when our shoulders bow and knees buckle

    under the heavy load of trials (and duties and blessings).

You hold us together when we are falling apart.

You hold us fast when we can't hold on.

You hold us in your impenetrable,

    unsnatchable,

    unalterable grasp of love and power.

You hold us with tungsten strength and maternal gentleness.

You hold us;

Grace us, Lord, with trust enough to rest in the refuge of Your hands,

In the name of Jesus,

Whose hands and heart and head

Were wounded for my transgressions

And crushed for my iniquities,

Amen.

Sacrament of the Ordinary

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              Three riders rode silently through the silent, black night, even their eyes darkened except in the passing illuminations when the clouds exposed the moon.  When they heard the crunch of gravel beneath the horses’ hooves, they smiled to themselves, knowing that at last they had reached the dry riverbed which marked the last leg of their journey.

              Suddenly the horses started and reared, spooked by some invisible danger.  Before the riders could quiet them again, a Voice sliced through the darkness:  “Halt, riders.  Gather stones from this riverbed, and I assure you, when morning breaks you will be both sad and glad.”

              Stunned into silence, after a moment the riders shrugged and broke into nervous laughter.  “We’ve nothing to lose,” said their leader.  As one man in the pale moonlight, they stooped, and each chose a handful of stones to toss into a pocket.  Their horses calmed, they remounted and rode on until morning.

              When they stopped to water their horses and swallow their meager breakfast, one of them remembered the stones.  He emptied his pocket and gasped in amazement.  Seeing him, the other two followed suit and stared in wonder.  The handfuls of river rocks they had gathered in the night had been transformed into rubies, sapphires, diamonds, and pearls.

              As the Voice had foretold, as morning broke they were both sad and glad:  glad they had obeyed the strange command, but weeping with sorrow that they had not filled pockets and saddlebags to overflowing with all they could carry.*

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              The unexceptional pebbles of our daily existence are the raw material Providence chooses for the altar on which to offer ourselves back to God as a living sacrifice.  It is not the poverty of our offering but the glory of His acceptance which transforms them into something beautiful and enduring.  Obedience in our ordinary duties becomes the outward and visible sign – the sacrament, if you will – of the inward and spiritual grace of His love abiding in those who obey.

              The consecrated heart discovers this transforming grace of God in every place and activity He assigns.  The commonest thing – from data entry to dishes to preparing lesson plans to changing diapers – takes on the very glory of heaven when done as unto the Lord. 

Some reading this may protest, “But I have POTS (or fibromyalgia, ME/CFS, Long COVID, autoimmune disease, MS) and all I can do is lie on the couch. I can’t even read or watch screens much right now. How am I supposed to work as unto the Lord? I can’t work at all.”

I have been there too. I am so thankful you are here. I recorded a reading of this post largely for you. From my experience of life and Scripture, I can say this: if my portion for the day is to rest a sick body, do physical therapy, swallow pills, and navigate all that is involved in accessing medical care, even that can be offered to the Lord as worship. If all I can do is receive care from others, alone in a dark room and largely deprived of sensory stimuli, I can offer my suffering to the Lord and trust Him to receive it. I can pray when able and offer my silence and listening to Him when unable. I can seek from the Lord a cheerful and grateful heart toward my helpers. I can lean all my weight on the everlasting arms of God and glorify Him by resting in His grace.

No matter the life circumstance, even in prison if it comes to that: as I keep the windows of my soul open toward Jerusalem all day long, inviting the wind of His Spirit to blow through me, the humblest duties become means to receive His grace.

              What is this sacramental life?  For one thing, it is more easily described than defined.  As a child, I had an African violet in my bedroom window.  I never lost my amazement that, no matter how I turned it in the morning, by the time I came home from school it had tilted itself toward the sunlight coming through the window.  When we returned to the United States from the mission field, I would laugh at my nine year-old dog Steinway.  After 3 years of separation under my parents’ care, he didn’t want to lose me again, I suppose, so he followed me around the house all day long.  Even when we were in the same room and I was in plain view, he followed me with his eyes.  The Ebony Dog who succeeded him would do the same thing. His whole being was oriented toward me. The sacramental life is like that:  practicing the discipline of fixing my eyes on Jesus, no matter what, until it becomes habit; continually adjusting my attitude and actions in the changing circumstances of life so that the direction of my gaze remains constant in the midst of it all.

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              Granted, this truth is easier to write than to live.  The world, both without and within the church, opposes it, the flesh shuns it, and the devil thwarts it.  Contemporary Christless society believes work is what we do to earn money in order to be able to spend the rest of our time doing as we please.  On the contrary, the Scriptures teach that it is in our work as well as our rest that we fulfill God’s design for us.  Adam was given the task of cultivating the garden in the day of his creation, not as punishment for eating the forbidden fruit.  It is only the toilsome frustration of work now which results from sin.  Even in the church, we tend to glorify “full-time Christian service” (which being interpreted is paid employment in gospel ministry) as somehow more holy than other vocations, but the Scriptures teach that we are to do all things to the glory of God (Col 3:17).  Was Jesus less holy and obedient to His Father in His first thirty years of submission to His parents, learning Joseph’s carpentry trade, and supporting his widowed mother and siblings as was His responsibility as the oldest son, than he was in His three years of public ministry?  Was the apostle Paul following Christ at a distance during the days he spent making tents so that he would not place a burden on the churches to support him?  Yet in our elevation of professional Christian ministry (especially missions) above all other careers, is this not what we imply?

              Our own flesh, the self-life, plays right into this idea.  After all, it’s far more glamorous to write a book for the Christian bestseller list than to write a letter to a shut-in cut off from other Christian fellowship, or a note to tuck in a child’s lunchbox.  It’s much more gratifying to the ego to cook a meal for a roomful of grateful, hungry people at the local homeless shelter than for a kitchen of grumbling teenagers who seem only to complain.  It may be more motivating to build a house for Habitat for Humanity than to keep up with the home repairs on a honey-do list.  It’s often easier to travel half a world away to preach Christ to those you will never see again than it is faithfully to live out the gospel and speak when God opens doors among your usual acquaintances, who may make life uncomfortable for you if they don’t agree. 

The rewards for public ministry are also public; we have our compensation in the applause of the watching crowd.  The rewards for a life lived in quiet obedience carried out before the face of God are primarily between the soul and her Lord, although such a life cannot help but bear fruit in the character and outward life as well, as we become what we behold (2 Cor. 3:18).  Does that make them less precious?  Hardly.  What can be sweeter than going about my day in the constant companionship of my Best-Beloved?  Jesus promised exactly that treasure to those who abide in Him by keeping His commandments:  “If anyone loves Me, he will keep My word; and My Father will love him, and We will come to him, and make Our abode with him. . . .  Just as the Father has loved Me, I have also loved you; abide in My love.  If you keep My commandments, you will abide in My love; just as I have kept My Father’s commandments, and abide in His love.  These things I have spoken to you, that My joy may be in you, and that your joy may be made full” (John 14:23; 15:9-11, NASB1995).

              Finally, the devil is all too happy to support this notion of work as something that keeps us from doing “real ministry” and drains the joy from life.  If believed, this idea may produce a sloppily done or entirely neglected duty, all for the sake of “ministry.”  On the other hand, as Lazarus’ sister Martha illustrates, we may be easily distracted by work as an end in itself so that we miss God’s still, small voice speaking to us through it.  The thorns which choked the growth of the seed in the parable of the soils, after all, are the cares and worries of the world.   Either error, forsaking duty for ministry or losing sight of God in the busyness of work, comes from the enemy and distorts the truth.

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              “But how can I expect to hear a still, small voice in a carpool of noisy pre-schoolers shouting?” or perhaps “. . . when the only beauty in my work is the fake ivy peeking over from the next cubicle?”  I never said it was easy, but I assure you: insofar as you gather the pebbles of the ordinary and offer them to God, you will be both sad and glad.  More importantly than my lone opinion, the testimony of the Christians of the past assures you of the same truth.

              Brother Lawrence wrote of it as the “practice of the presence of God” in his book by that name.  Though a monk, his duties differed little from those of the average housewife (excepting the carpool of screaming kids).  He learned the art of constant conversation with God even as he scrubbed pots and worked in the garden, and it transformed his attitude and relationships.  This can begin simply, with a hymnal over the sink, a recording of sacred music or Scripture playing in the car, prayer reminders where one will see them often, or Scripture memory cards next to the computer for those inevitable delays while the program opens or document saves.  Whatever reminds us to look back to Jesus when we lose our focus will help us on this journey.

              Martin Luther wrote, “The works of monks and priests, however holy and arduous they be, do not differ in one whit in the sight of God from the works of the rustic laborer in the field or the woman going about her household tasks, but that all the works are measured before God by faith alone. . . .  Indeed, the menial housework of a manservant or maidservant is often more acceptable to God than all the fastings and other works of a monk or priest, because the monk or priest lacks faith” (quoted in Os Guinness, The Call, 34).

              Elisabeth Leseur, a housewife in upper-class French society in the late nineteenth century, began to follow Christ as the rather unexpected consequence of her husband’s attempts to persuade her to abandon the trappings of her childhood religion and join him in militant atheism.  When the Lord opened her eyes to the folly of the arguments before her, He drew her into a personal relationship with Himself for the first time, as her previous religion had been merely formal with no sincerity.  How did she respond to this turn of events?  She began her own self-study program of the New Testament and the lives of Christians from history and sought to live out the life and love of Christ with her husband and the friends her social station required her to entertain.  She lived out 1 Peter 3, despite continual ridicule from family and friends and increasingly poor health, which prevented her from leaving her home at all in the last years of her life.  She sought to conduct her life in keeping with resolutions such as the following:

To go more and more to souls, approaching them with respect and delicacy, touching them with love.  To try always to understand everything and everyone.  Not to argue; to work instead through contact and example; dissipate prejudice, to reveal God and make Him felt without speaking of him; to strengthen one’s intelligence, to enlarge one’s soul. . . ; to love without tiring, in spite of disappointment and indifference. . . .  To learn from the Heart of Jesus the secret of love for souls and deep knowledge of them:  how to touch their hurts without making them smart and to dress their wounds without reopening them; . . . to disclose Truth in its entirety and yet make it known according to the degree of light that each soul can bear (Robin Maas, “A Marriage Saved in Heaven:  Elisabeth Leseur’s Life of Love,”  https://catholicladylive.blogspot.com/2011/02/marriage-saved-in-heaven.html).

Her life motto became, “Every soul that uplifts itself uplifts the world.”  After her death, the crowds of people touched by her charitable works and correspondence, reading her journal, and her life itself became the means of her husband’s conversion.  He later entered vocational Christian ministry and labored to keep her memory alive and honored.

              The more well-known Christian teacher Oswald Chambers writes frequently of the “drudgery of discipleship” in his devotional classic My Utmost for His Highest.  For example, in the September 11 entry, he notes, “The things that Jesus did were of the most menial and commonplace order, and this is an indication that it takes all God’s power in me to do the most commonplace things in His way.  Can I use a towel as He did?  Towels and dishes and sandals, all the ordinary sordid things of our lives, reveal more quickly than anything what we are made of.  It takes God Almighty Incarnate in us to do the meanest duty as it ought to be done.”  Again, in the October 21 entry, he writes, “We do not need the grace of God to stand crises, human nature and pride are sufficient, we can face the strain magnificently; but it does require the supernatural grace of God to live twenty-four hours in every day as a saint, to go through drudgery as a disciple, to live an ordinary, unobserved, ignored existence as a disciple of Jesus.  It is inbred in us that we have to do exceptional things for God; but we have not.  We have to be exceptional in the ordinary things, to be holy in mean streets, among mean people, and this is not learned in five minutes.”  No, nor in five lifetimes, it sometime seems.

              Finally, Evelyn Underhill, the twentieth-century English writer on mysticism and the spiritual life, summarizes these truths.  She writes, “A spiritual life is simply a life in which all that we do comes from the center, where we are anchored in God:  a life soaked through and through by a sense of God’s reality and claim and self-given to the great movement of God’s will.”  Furthermore, “Some people appear to think that the ‘spiritual life’ is a peculiar condition mainly supported by cream ices and corrected by powders.  But the solid norm of the spiritual life should be like that of the natural life:  a matter of porridge, bread and butter, and a cut off the joint.  The extremes of joy, discipline, vision, are not in our hands, but in the Hand of God.  The demand for temperance of soul, for an acknowledgment of the sacred character of the normal, is based on that fact – the central Christian fact – of the humble entrance of God into our common human life.  The supernatural can and does seek and find us, in and through our daily normal experience:  the invisible in the visible” (The Soul’s Delight, 11 and 45).

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              The invisible in the visible, the pearl latent in the grain of sand, the diamond in the lump of coal, God’s grace conveyed to the human heart in the ordinary duties at hand in each day. . .  Anything done for the glory of God, in dependence on His Spirit, in obedience to the commands of Christ, may be lifted to our Lord as a sacrifice of praise. To quote Lilias Trotter, "Meeting His wishes is all that matters."

               May He strengthen us to learn the discipline of offering each moment and task in faith to Him, to be transformed by His glory into the means for His grace to take fuller possession of our hearts through the sacrament of the ordinary.

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* My version of a story John Baldwin told my church youth group in the summer of 1990 (although some details have no doubt altered in my memory); I have found the story used as illustration various places but not succeeded in tracing the source. If you know, please let me know so I can attribute it correctly.

 

Catalog of Fragile Beauties

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Male ruby-throated hummingbird at feeder in our back garden

Male ruby-throated hummingbird at feeder in our back garden

Female ruby-throated hummingbird at our feeder

Hopeful Thirteen {A Blogiversary Post}

 

Giant yellow swallowtail on unidentified plant, July 2023

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In the summer of 2010, I was working my way back to full strength after sinus surgery that spring. Although I had received a lupus (SLE) diagnosis 8 years prior, my illness had been quite stable, with medication and lifestyle adjustments, for more than 5 years. Prior to surgery, the Ebony Dog and I walked 3 1/2 miles most days, and Pilates and strength training were added several days a week. I learned more about nutrition and followed a healthier diet than most Americans, with lots of produce, lean protein, and whole grains and not a lot of sugar.. Amore and I had both worked hard to find a rhythm that worked for my illness, and he worked hard providing for us. 

Surgery has extra difficulties for autoimmune patients, so we weren’t surprised that recovery was slower than the doctor promised. Lab tests several weeks after surgery showed that I was still mildly anemic, but otherwise things seemed fine.

In July 2010, the day we departed for a stay with Amore’s parents due to a surgery for his father, I felt more tired, almost out of breath. On the drive down, my voice seemed oddly hoarse as I read aloud. The elastic around my ribs hurt. The seatbelt felt too tight. How odd.

Once we were settled in the home of my in-laws, I couldn’t seem to recover from the five-hour drive. I was so tired. As much as possible, I rested and read, but even sleep proved difficult. And what was that pressure on my chest?

(Aside: Yes, we should have visited urgent care or the emergency room. Chest pain is not a “wait and see” medical symptom. We were away from home for my father-in-law’s cardiac bypass surgery; this was not supposed to be about me. And, truth be told, I was more anxious about going to the emergency room, and in a different city, than I was about waiting out the pain and trying to breathe. But if you have new chest pain, please do the smart thing and urgently seek medical care.)

My father-in-law’s surgery was successful, but he had a long road ahead to full recovery. When our stay was over, we passed the support baton to one of my husband’s sisters. I was truly convinced I would feel better when we were back home and away from the stress and worry over Amore’s dad.

🦋

But I didn’t. The fatigue was so severe that unloading the dishwasher was too strenuous to do all at once. If I took a shower, I needed someone else in the house in case I passed out. My chest hurt so much that I could hardly breathe unless I lay down on my side. So I lay on my side on the sofa all day, for days and weeks and months.

As soon as we returned, I scheduled appointments with my sinus surgeon, asthma doctor, and rheumatologist. Perhaps after sinus surgery upper respiratory infections looked like this? Perhaps I only needed another course of antibiotics?

I did need a round of antibiotics, and my asthma did require a new inhaler, but that didn’t resolve the symptoms. The rheumatologist sent me for a series of scary, expensive tests on my heart and lungs. He was afraid the membrane around my heart was inflamed, so he ordered a month of bedrest and increased steroids and told me not to leave home except for medical care.

Driving was beyond my strength, and Amore did not have remote or flexible work, so my mom drove me about to all these appointments and brought her work to my living room when she could, so I wouldn’t be scared, in pain, and alone.

Eventually all serious explanations for my symptoms were ruled out, and it was determined that my lupus was flaring and causing painful inflammation of the cartilage connecting the ribcage and sternum (“costochondritis”). In other words, “It’s not serious, just painful.” The doctor told me I could resume normal activities, but there remained that pesky problem of my chest hurting too much to breathe when I was upright.

After 6 or 7 months, we finally found a medication to manage the pain safely. I could have wept with relief that first morning after the new medicine. For the first time in months, my first conscious thought of the day wasn't chest pain. I had slept through the night. By that time, however, other pain issues had arisen due to the prolonged forced inactivity. It took years to work through the fallen row of dominos and set a substantial part of them upright again. Not all losses have been recovered even 13 years later.

🦋

There have been unexpectedly good and gracious enlargements of my capacity at times, such as a voyage to Alaska with my parents and husband and a journey to Virginia for the wedding of a young lady I love dearly. The Lord has given me several years of enough stability to assist my parents with time, meals, and company. I now sit with my mom in her living room as she sat with me so many times. Last week the Lord enabled me to walk a whole mile in a state park with my husband. Two days in a row. This is a far cry from where I was before lupus or before 2010, but it is the farthest I have walked at once (without paying for it later in post-exertional malaise) in a very long time. The last few times we’ve been to the arboretum, we have also been able to do without a wheelchair for me. I don’t know whether or how long this will last, but I receive it as a good gift from a loving God and give thanks to Him.

There have also been expected and unexpected brokenness, trials, and sorrows. The last 13 years have held far more funerals than weddings. Three of our four parents have suffered the long farewell of dementia. My mother is still suffering it. We lost Amore’s oldest sister to cancer. Many more surgeries and two rounds of cancer have added complications to my own medical history. Amore has changed jobs three times. Family members have faced life-changing diagnoses and financial hardships. My church has endured an astonishing amount of tumult and loss.

Oh, yes, and there’s this apparently never-ending pandemic that has required a few changes to our lives.

So far, there is no “back to normal” for families like ours, with immunocompromise, long COVID, and other high-risk conditions. Amore and I are still very much isolated in our tiny village of four with my parents. We are very grateful for the many circumstances that allow us to do that, even though we miss things about “before” life. We continue to seek the Lord and seek to steward health, illness, duty, and opportunity one next step at a time. I don’t know whether or how long this will last, but I receive it, too, as a good gift from a loving God and give thanks to Him.

Does that sound strange to you? Life's plot twists don't always feel like good gifts from a loving God, do they? They may come to us wrapped in sandpaper and tied with barbed wire instead of golden ribbon. For those who brave the bloodied hands and tear-stained cheeks, however, trials offer the Christian treasure that cannot be attained any other way.

Only those who mourn know the divine blessing of God's comfort. Only the weak know the sufficient power of God's strength. Broken hearts are uniquely able to receive God's nearness. Knowing Christ in the communion of His suffering (Philippians 3) requires suffering ourselves and experiencing the astonishing grace of His nearness in the midst of it. Suffering can bless us by chiseling our character into greater likeness to Christ.

"Good" isn't always happy or fun. Sometimes it is holy and soul-growing. It is good and worthy of our gratitude when we receive it as one means of knowing the Triune God more deeply.

🦋

My heart breaks for the tens of millions suffering prolonged illness, uncertainty, medical fatigue, inability to find treatment, financial hardships, isolation, and fear from the tsunami of new chronic illness the last three and a half years. And suffering those same afflictions from flaring chronic illnesses. They never seem to stop surprising us with new party tricks, do they? I have drunk from the bitter cup of dreams crushed and youth upended due to unexpected health collapse. If that is you, whatever the nature and cause of your illness (if you even know), please hear this:

You are not invisible to me or to God.

Your life matters. You are worthy of care and support. God loves you.

God hears and answers honest prayers. He doesn’t always answer yes, but He always answers. Call on Him.

Please keep going. You never know when the sun will peek out again and your life will turn for the better. However bleak things seem in this moment, if you are in Christ, this is not the end of your story. All the afflictions of today are actively at work producing the eternal weight of glory ahead of you.

🦋

One gift the Lord has given to sweeten my cup the last 13 years has been this place. Near the end of that first month on the sofa in pain, unable even to care for myself fully, Amore told me it was time to start a blog. He had decided I needed to write my way through whatever was going on. He helped me set it up, and this website was born.

To celebrate 13 years of writing here (and perhaps, for a few of you, 13 years of reading), I am retelling the story of my health journey during that time and leaving you with five things the Lord has taught me in the peaks and valleys of this quarter of my life.

• No matter how isolated, alienated, and exiled you or I might feel, no weakness, illness, or disability can alienate or exile us from God. If we have thrown ourselves at the feet of His throne of grace to receive mercy and forgiveness through the life, death, resurrection, and ascension of Jesus Christ, then nothing can separate us from His love. Even the humans who love us most will reach the limits of their compassion and energy, but there is no compassion fatigue in the Triune God. The tinuviel paraphrase of Hebrews 13:5b says, “for He [God] has said and not changed His mind: ‘I will never ever leave you without support, nor will I ever ever desert you in distress.’” He promises that He will never, never, never, never leave His people in the lurch.
• Hope is not a feeling of optimism. Hope is not dependent on a happy change in circumstance. Hope is not incompatible with sorrow and grief. Hope is eager expectation born out of confidence in the promises, person, and purposes of God. Jesus our forerunner has dropped the anchor of our hope in the Most Holy Place of God’s presence (Hebrews 6:13-20). With Him securing it, nothing can uproot it, no matter how hot the flame, how fierce the wind, or how intense the storm. God cannot lie. He will not let go of us. He will hold us fast. Hold fast to hope. Hold fast to His promises. Hold fast to Him who holds fast to you. And if you can’t hold fast, lean in. He can hold on tight enough for the both of you.
• I am weaker and less in control of my life than I ever really thought, and Christ in me is stronger than I ever really believed. His strength, goodness, and love, even when I have least felt the consolation of His presence, have kept me putting one foot in front of the other. He is the reason I have not abandoned the faith. The weaker I am, the stronger He is, and His grace really is sufficient (2 Corinthians 12:7-10).
• “Acceptance with joy” is a lifelong lesson. When I think I have learned it, a bend in the track reveals more mountain to climb. And that’s ok. Anything is a blessing which makes us pray, as Spurgeon wrote. Anything is a blessing which reminds me of my dependence on God. The “hard eucharisteos” (things for which we struggle to thank God) are material for sacrifice. He transforms them when we offer them, with ourselves and our tears and our inability to accept them with a grateful heart, to Him.
• Finally, don’t underestimate the providential grace of God, which can create real friendships out of zeroes and ones, pixels and screens. I cannot thank Him enough for the kindred spirits He has brought me from across miles, oceans, and continents. You know who you are. Thank you for reading and interacting. Thank you for extending kindness to this poor bell sheep, whether I could reciprocate properly or not.

Further up and farther in! Courage, dear hearts.

A Lament for the Long Haul

This is one chronic patient's intercession for the tens of millions suffering with Long COVID, whether patients, families, or friends. I am humbled and grateful to make space for the stories of a few of these courageous people. If you live with ME/CFS, POTS, fibromyalgia, or autoimmune disease and see yourself in the following, may the Lord enfold you into the intercession as well. The doves mark section breaks, in the event reading this requires multiple sittings.Courage, dear hearts.

Listen to me pray these words over you

 

 

Good Shepherd of the sheep, 

Master of the great feast, 

Lord of the harvest, 

I worship You. 

 

Today I bring You my burden 

For those suffering over the long haul from the ravages of a pandemic virus. 

Their needs are many, too great for the strongest and most influential woman, 

Much less one such as I. 

 

All I can do is bear them on my heart to Your throne of grace. 

You have mercy and grace to help them in time of need. 

And You can sway the hearts of Your people to help carry the cross of disability. 

If You are willing, You can even heal. 

 

Lord, I bring You the mothers nurturing from the sofa; 

The artists whose creative vision is blurred by brain fog; 

The athletes bound to wheelchair and home; 

The scientists whose bright intellects have been dimmed and dulled; 

The physicians imprisoned in home or bed from infections in the line of duty; 

The millions slogging through hours of work to earn their bread, 

Who keep their illness secret for the security of their posts; 

The millions more unable to work at all, but refused disability assistance 

And struggling to meet basic survival needs; 

The children and young people whose promising futures vaporized 

When we, their elders, did not shield them from disease, disability, and death 

Borne like vapor on the air. 

 

I bring You the wife deciding between taking a shower and preparing a meal, 

Both in the same day exceeding her capacity. 

I bring You the mama fighting through Long COVID brain fog 

To care for her daughter, who received 

A dementia diagnosis at age 19, 

Dementia caused by COVID. 

I bring You the sufferers weary of research 

And demoralized by begging for validation, protection, 

A listening ear and the kindness of understanding. 

I bring You those traumatized by medical disbelief, dull ears, denial. 

 

 

 

 

I mourn these broken bodies and damaged futures. 

I lament our guilt, our culpability 

As a church and as a society. 

Our sins are many and grievous. 

We have not loved You with our whole hearts, 

Nor our neighbors as ourselves. 

I am heartily sorry for these our misdoings. 

Forgive us, Lord. Forgive me, Lord, 

For my failures to love these battered bodies and bruised souls well. 

They are persons clothed with the inherent dignity of Your image. 

We have not honored that humanity 

And treated their lives as sacred to You. 

 

Awaken Your church to true repentance— 

We have not loved our neighbors as ourselves— 

To relinquish excusing our wrongs 

And to love You by loving the least. 

What we do to the sick and in prison, 

We do to You, Lord Christ. 

Have mercy on us for the hardness of our hearts, 

O Savior of the pierced side. 

Lift our gaze from our own internecine quarrels 

To the ocean of desperate need all around us. 

Open our ears to the cries of the tens of millions 

Incarcerated and alienated by sick bodies and beds of suffering. 

 

 

 

 

Good Shepherd of the sheep, 

Gather the forlorn and forsaken sheep into Your arms; 

Carry them through the dark valley to the pace of Your pulse; 

Extrude Your undershepherds to guard, nourish, and abide with them. 

 

Master of the feast,  

Send forth Your servants to bear 

On stretchers the sick and disabled, 

Welcoming them to the gracious abundance of Your hospitality, 

Not dependent on performance, appearance, or productivity, 

But only on their need and willingness. 

 

Lord of the harvest, 

Raise up Your fellow workers 

To go forth weeping, 

Carrying the seed of Your Word, 

The seed of the gospel, 

The seed of promises and hope; 

Cultivating Your truth; 

Pouring out Your life-giving water 

In hope of a harvest of joy. 

 

 

 

Lord God Almighty, 

Raise up helpers to do for them what they cannot do; 

Raise up givers to bear the financial burden of those unable any longer to lift it for themselves; 

Raise up advocates to fight for and with them through the torturous disability and accommodation process; 

Raise up physicians, wise and patient, believing their witness of suffering and weakness, 

Curious, diligent, and dedicated to finding anodynes now and, one day, cures; 

Raise up teachers and tutors for the children who can only learn at home; 

Raise up servants willing to help them on their own terms, gladly stripping off pride and self-preferences to wash their feet; 

Raise up friends and comforters with listening, empathetic ears, 

Kind eyes, shared tears, ready to sit with Job on the ash heap in silence; 

Raise up prophets speaking forth words of life, forgiveness, hope, and peace; 

Raise up just leaders ready to act with integrity and humble service, 

Valuing moral duty above political expediency; 

Raise up pastors to instill courage in the downcast, 

To strengthen marriages to endure the furnace of chronic illness, 

To support grieving, anxious children who have lost their Before-COVID parent 

Though that loving heart still beats. 

 

Be all these things in Yourself, Lord: 

Helper, giver, advocate, 

Physician, teacher, servant, 

Friend, prophet, leader, pastor. 

You are these and more 

And can form us into Your likeness, 

To do after You what we see in You, 

To follow in Your steps. 

 

 

Look upon the multitude of sufferers with Long COVID, 

The patients and families, 

Who need all this practical aid, 

And also the care and cure of their souls. 

 

Who will You send, Lord? Who will go for You? 

Where are the churches who will search out these lost lambs? 

These invisible ones, like lepers, exiled outside the camp? 

Who will bend low in humble service, 

Be the hands and feet of Jesus to those who cannot respond in kind? 
Who will join the fellowship of the beautiful feet, 

Extending good news 

Of hope in Jesus, 

The enduring kingdom to come, the new bodies awaiting, 

A purpose in our suffering, 

All things cooperating for good for those who love You. 

The chronically ill will not, cannot, likely 

Fill coffers or pews, fold bulletins or chair committees. 

They cannot teach Sunday school or sing in choir. 

 

Yet lavishing love on the languishing 

Is lavishing love on Christ. 

 

Few of these vast needs can I meet, 

Hardly any, in fact, 

But a listening ear and loving heart, 

A will to believe their testimonies— 

These I can offer. 

I can seek to share the comfort You have given me in my own afflictions. 

It is a joy and privilege to learn from them 

As they look out their virtual windows 

Into mine, and we make eye contact: 

“You, too?” 

 

What are these bread crusts and sardines in the face of so many millions of needs? 

Yet here I am, Lord. Send me as You will. Use me as You will. If You will. 

Bless and multiply these crumbs for Your name’s sake. 

 

Good Shepherd of the sheep— 

Seek the lost and wounded and bear them up in Your strong arms. 

Master of the great feast— 

Summon and serve the sick and disabled, 

Made welcome under Your banner of abundant love. 

Lord of the harvest— 

Raise up faithful workers and send them into Your fields 

To labor diligently to gather in the fruit of Christ’s suffering. 

 

Your kingdom come, Father. 

Your will be done, 

For Your glorious name’s sake. 

Amen.