Tag Archive | CFS



My husband and I sat across the table at a local diner recently, delighted to be out of the house together and not at the hospital or a doctor’s office.  The day was gray and drizzly, but to us it seemed almost bright.  Almost.  We had travelled together through weeks of my husband’s hospitalization, pain, and weakness, but now here we were, sitting at a diner, smiling gently, almost shyly, at each other across the glossy formica-topped table.

It felt good.  Very good!  I asked my husband how he was feeling—pain-wise and strength-wise.  He paused, smiled reflectively, and said, “I feel I’m  about 70% here.”

“70% here!” I responded.  “That also describes my CFS/ME so well, at least on the better days!”  So there we sat, two 70 %-ers, enjoying a bowl of warm soup, enjoying each other’s company, and enjoying life, diminished as it has become.

Diminuendo.  Yes, the music of our lives, and of the lives of many whom we hold in our hearts, plays out more quietly these days—“pp” and sometimes even “ppp.”   But the music is still there.  No rousing crescendos for the moment.  The trumpets are muted; the violins as well.  But brass and strings still gently play and haunt the byways of our minds and souls—sometimes with memories of earlier crescendos of musical joys; sometimes with the promise of “forte” music still to come, either in this life or the next.

Meanwhile, we live the quieter music of the moment, taking in all we can, releasing the rest to others whose lives know a greater fullness of health.  Sometimes we do this gracefully and gratefully.  Other times we beat the drums of frustration and, at times, even the drums of anger and despair, pray the laments of the psalmists, and hope with them for  grace to hear God’s gentle melodies and once again accept the quieter “ppp’s” of our lives.

Kay Lynn Northcutt is a woman all too familiar with the quiet music of chronic illness.  Ms. Northcutt used to teach homiletics, lead retreats, and provide pastoral leadership in a number of churches.  But a serious illness, which struck quite suddenly, left her able to speak only with difficulty, and confined her for the most part to her home.  However, while she can no longer easily speak, she still knows how to listen, knows how to be attuned to the diminished music of life with every part of her being.  She writes: “My new vocation is that of loving extravagantly the shreds of life that are wondrously left to me.”*

What a powerful statement!  To love extravagantly whatever of life is wondrously left to us.  To stay attuned, attentive, to every melody, every grace note,  every nuance of life that, all together, compose the symphonies of our lives. Truly a worthy vocation for life diminuendo.

For that matter, truly a worthy vocation for those whose healthy lives are lived at full crescendo!


*Kay Lynn Northcutt, “A holy, mundane essence,” The Christian Century, 3/7/12

Ash Wednesday


Good to begin Ash Wednesday with a reading from St. Paul’s letter to the Philippians: “I am confident of this, that the one who began a good work among you will bring it to completion by the day of Jesus Christ.”   Today many will kneel at altar rails around the world.  Today many will hear these ancient words as pastors, with the ashes of last year’s palms, mark the sign of the cross on their foreheads:

Remember that you are dust, and to dust you will return.

Accomplish in us, O God, the work of your salvation.

Not difficult these days to remember that I am dust, that we all are dust and that to dust one day we will return.  Recently, I have watched loved ones and friends coping with intense physical and emotional pain.  I have been measuring out my own days in mere teaspoons of activity with the weakness of my CFS/ME.   As I’ve listened to the evening news, I have tried to imagine the agony of a young Syrian mother giving birth in a refugee camp after fleeing from all she had ever known and loved, or the distress of an Afghan father worried about finding money to bury his young son who had frozen to death in a Kabul shelter the night before.  With all that’s going on in my life and in the life of the world, I truly have to struggle some days to remember that God has indeed begun a good work in me, in all of us.  Struggle to believe that God is still at work to accomplish that good work and bring it to completion.  Easier these days—often—simply to feel the dustiness, the grittiness, the muddiness of life rather than to be aware of any glory of the divine at work within me and within our world.

Yet, as I kneel today and hear the beautiful words of the Ash Wednesday prayer, I find myself realizing that God is indeed at work in all our lives…

  • enabling us to trust as we grope our way through pain and weakness…
  • enabling us to keep hope alive amidst all the ugliness and fear so rampant in our world…
  • enabling us to see and cherish all the beauty that still shimmers and shines amidst the gloom…
  • enabling us to love and care for those who need our hearts and our hands.

Accomplish in us, O God, the work of your salvation!

SANDY–Before and After


First Blush of Autumn

Sun-dappled red, tucked in a

green and purple alcove on this

mid-autumnal day, fills me with a

wonder at its almost-hidden loveliness;

soul bends the knee, takes off its shoes,

and breathes a thanks for this and all the

brightness still to burst across our yard in

yellow, orange and brilliant scarlet

joy, as colors leap from tree to tree,

each day a new amazement splayed

beneath the still bright sun of fall.

Radiance shimmers in the air around;

I stand knee-deep in holiness, and

hunger for the taste of sacred in the

breath of each fresh day.


A Neighbor’s Tree

Sodden gray now shrouds that blush of hope that so short a time ago had leaves and spirits dancing in brisk autumn winds.  Shadows lurk in the still-standing trees, fearful yet of Sandy’s powerful bluster that twisted through our neighborhood, viciously tearing green and golden leaves alike, and shattering a neighbor’s aged Eastern White Pine.  The old tree cracked in two and fell with a resounding thud shortly after Sandy had pulled down wires and left the neighborhood in darkness.  And we were the fortunate ones.  Others lost their homes, their cars, and some, their loved ones who never knew what hit them when Sandy slammed a tree against their house or car.

So where the sense of holiness now?  Where the shimmering joy of colors splashed across our lives?  That all seems buried today beneath the piles of soggy leaves and branches, and our hopes seem dashed to mounds of soaking rubble.

But maybe there is holiness and hope even in the midst of all this chaos and ruin?  Maybe God is in the wreckage of the storm as well as in the first blush of autumn’s bright array?  Whatever lies behind the havoc of a frankenstorm like Sandy, (and I don’t think our finite minds can ever find the “just right” explanation we would like to find), I do believe, yes I do believe:

1) that Holy Love embraces all the pain and sadness left in Sandy’s frazzled wake;

2) that Holy Love weeps with Sandy’s devastation and with every other distortion of the dream God dreamed in the long-ago calling of our world into being; weeps with that great Eastern White Pine, weeps with my neighbor’s years-long fight with cancer, weeps with the limitations of my Chronic Fatigue Syndrome, weeps with every sadness, every woe, weeps, as St. Paul says, with sighs too deep for words;

3) that Holy Love not only aches and weeps with us in every woe, but that in every aching, every tear, Love is also at all times re-weaving the shreds and tangles of all earth’s brokenness until God’s woven song of someday joy will be complete.

To be sure, the holiness we breathe in the solemn silence left by Sandy’s brutal visitation is a more somber holiness, a quieter sense of sacred Presence than we knew in that first blush of autumn’s wild joy.  But if we listen closely to the wind now blowing gently through the lifeless needles drooped across the ground, I do believe we just might hear a hallowed sigh and feel the groaning ache of a God who yearns to make all things new.

Life That Really Is Life

“…take hold of the life that really is life.”  This phrase leapt from the page this morning as I was reading in I Timothy.  The writer is actually admonishing those who are wealthy not to be absorbed by their riches, but to “do good, to be rich in good works, generous, and ready to share,”  so that they may “take hold of the life that really is life.”

Good advice, but what, I wondered, what does this pithy phrase mean for someone who is not only not wealthy, but who is also not healthy?  What does it mean for someone with a chronic illness to live “life that is really life”?  What does it mean for me to live fully in the midst of numerous health constraints.

Well, for starters, I think it means to live without constantly comparing my life to the lives of those who have no health issues and then feeling small and inconsequential because I’m not able to do what others are able to do.  Sounds easy enough, but, believe me, it is not, and it’s all too easy for me to over-do simply to “prove” I am really alive and living!  That over-doing, of course, only leads to greater fatigue and then to a greater sense of unworthiness.

I think this little phrase means something, too, about acceptance of what is rather than experiencing a constant undertow of longing for what isn’t.  I learn so much from watching the trees outside my window.  Today they are lushly green and dappled with sunshine as they lift and fall on gentle breezes.  But not so long ago, they stood gray and bare in frigid winter winds.  Always, always, they simply are, staunch and solid and accepting, no matter what winds blow through their branches.   I am so grateful for “my” trees.

And this gratitude, I’m convinced, is also such an important part of living a “life that really is life.”  Gratitude, for my trees, and for so many gentle and good and beautiful things around me, opens my eyes, my physical eyes and my soul eyes, to an awareness of life in all its richness, all its beauty, all its holiness.  Gratitude leads me to a quiet place where I am able, with greater ease, to say an accepting “yes” to my life-with-limitations.

No, those of us with chronic illness cannot be as active as we’d like to be, we cannot do all we’d like to do.  But, yes, we can live “life that really is life”—knowing our worth without measuring ourselves against others, accepting what is with tree-like grace, and opening our hearts to a thankfulness that always renews and refreshes our souls.