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.
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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.
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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.
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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.
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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.
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 futuresvaporized
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.
