Tag Archive | CFS/ME

Who Am I? And Who Are You?

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my sofa nook

          Who am I?  And who are you?  As I sit or lie in my sofa nook with a chronic illness which limits my activities and cuts me off from a busy world, I often ponder what it’s all about.  What is the meaning, the purpose of a life such as mine?  In a busy world that judges us all by what we achieve, that counts the number of trophies we can place on the shelves of our minds at the end of each day, my sense of self-identity can so easily slip away.

          It’s very tempting for those of us with chronic health issues to compare our lives with the healthy lives of those around us.  Unfortunately, when we do this, we all too often come away with the feeling that we are “lessened,” that our stories are curtailed, incomplete, deficient.  With so little to show for our lives, it’s easy to wonder who we really are.  

          After his resurrection, Jesus warns his disciple Peter that a time will come when he will no longer be in control of his life. Peter’s response is immediate.  He points to another disciple and asks, “and what about him?”  Jesus tells him rather sharply that that is really none of his business.  Don’t compare your life and your destiny with his, Jesus tells him.  Just “follow me.”  Just live out your own story, and let him live out his.  A challenging directive.  To Peter…to me…and to all of us. 

          Henri Nouwen in his little book Discernment tells of a friend who discovered in his 50’s that he had cancer.  He had been a very active man, and he had always defined himself by all the good things that he was able to accomplish.  Who was he now with his body crippled with cancer and exhausted from all the treatments?  Nouwen and his cancer-ridden friend puzzled together over this. 

          As we might expect from Nouwen, he offered his friend some profound insights.  He suggested that he should see that his vocation as a human was to be fulfilled not in his activities and accomplishments but rather in his ACCEPTANCE of his situation.  In his WAITING to discover what God was about in his life.  In his deep AWARENESS that God, not his activity, was the center of his life, and that God is always the one at work to define our lives and to help us determine just who we are.

          To live out such a vocation is truly a challenge.  I would so much rather define myself by what I accomplish.  I want my activities to be the center and focus of my tiny universe.  I want to control my possibilities.  I want to see who I am in the row of daily trophies sitting on my mind’s shelf.  

          A character in Anthony Doerr’s short story “Mkondo” tells a lost soul who’s searching for his life, “the only way to find something is to lose it first.”  Along with countless others who live with a chronic illness, I have lost many of the trimmings that I once relied upon to define my life.  But I do believe that in my losing I have also been finding.  It’s a slow finding, to be sure, and it’s a finding filled with many questions and many doubts.  But it’s a finding, nonetheless.  The finding of a growing stillness within.  The finding of a deepened attentiveness to the layers of life around me and within me.  The finding more of God’s life burning within my own, even in those moments when I feel so unsure of who I am.

          A challenge, yes.  But when all is said and done, perhaps this is the challenge not just for those of us who live with “chronic.”  Perhaps this is the challenge for the healthy as well as the not-so-healthy.  To let go of old self-definitions.  To learn the way of acceptance, the way of waiting, the way of awareness.

          Who am I?  And who are you?  And what’s it really all about?  We’ll probably never, in this lifetime, know the full answer to all the mysteries of our lives, but perhaps we may come closer to knowing who we really are as we lose more of our “trophy” selves and find ways to live into patterns of a quiet openness to our innermost selves and to the God who lives and breathes through all our doings.  Through all our not-doings as well.

 

Daily Prayer for Those of Us Who Live with Chronic Illness/Disabilities

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“Live the questions,” urges Rilke.

Let me live my questions, and

Let me live my weakness, too.

Let me find my value, not so much in doing, but rather simply in deeply being.

Let me be attentive to my body’s needs and not dismiss them as annoying and disruptive of my hopes and dreams to see my name writ large and so prove my worthiness.

Let me soak up healing rest and shun my restlessness.

Let me listen in and listen to the sometimes awful stillness that can settle over my life.

Let me nurture openness to the One who sits and stands beside me in the often hushedness of my days.

No easy task. Sometimes painful. Always hard.

But it is Real, and it is my Reality.

So let me live it. Fully. Honestly. And thankfully.

Yes, thankfully. Hands joined with friends who help to ease the sometimes endless hours. With all who share my lot of chronic illness/disability.

Amen.

Of Windows and Walls–a Photo Essay

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There are days when my walls feel thick. Oppressively thick. Thick and dark, as though they’re pushing in on me and taunting my CFS/ME persistent need for rest. Days when I simply want to be outside these walls. Out and “doing,” rather than simply “being,” forever sitting on the maroon and cream colored roses that pattern my sofa. It’s not that I’m never able to be out and about.  I am able at times to take short walks, enjoy an occasional visit with a friend, even attend worship now and again.  I am grateful for each of these, but I so wish they were not so infrequent.  

I’m grateful, too, for my sturdy walls and their protection from the bitter cold of January. From the heat of August. From rains and snows and winds. Grateful for these walls, oh yes. But there are days of weakness when I want to break them down and simply be done with all this resting. Exchange my sofa roses for the lilies and the iris that grow outside the confines of my barricades. I do not always like my walls.

But I have windows too. Bright openings in my walls. Openings that calm and reassure. That pull me out of torpor. That open up my walls, push back their taunts, and call me to a place of mindful, humble praise.

One of my windows, the window that watches while I sleep, looks to the west, through branches of an aging dogwood tree. One dogwood branch in particular has become a special friend. Constant in presence. Constant in attentiveness to mercies and beauty new every morning.

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Her white blossoms greet me each spring.

 

 

 

 

 

winter lace

 

 

 

In winter, she sometimes tats a delicate lace of snow…

 

 

 

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…or tosses soft balls of cotton clouds into the sky.

 

 

 

 

 

In the evenings, I often see her through the window, waiting beneath a darkening sky that evokes in me a sometime shudder. Recently, however, there was a different night. I went to close the blinds but opened them instead, transfixed by bursts of light breaking through the menace of the black. Bursts of the Beyond, bursts of Light that shines, of Light no darkness will ever overcome.

 

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Other evenings, not many, but a few, a grand cacophony of soundless color arches through the vastness of the sky. It’s then I almost hear my branch friend’s silent laughter chortling to defy the taunts of my thick walls.

 

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Another window opens up directly across from the sofa roses of my rest. In spring, the vista through this opening is soft and promising, singing gentle songs of busy growth, renewal; sheer joy in all that is alive.

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In the heat of summer, these same branches splash right through my window, bringing with them a sea-green coolness—so welcome and refreshing.

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Then in the fall, the brilliance of the branches once again lights up my indoor space. Beautiful, but a bit foreboding as well. Drawing me into reveries of dyings I have known, more dyings that will come—for friends, for loved ones, one day for me. “Let them be,” I softly pray, “let them be endings both as bright and as unassuming as the falling of these radiant leaves.”

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Through this window, too, in every season, my sea-toned wind chimes sparkle, some days with a stillness that quiets every fear that threatens me. Other days they skip and dance, almost bringing the wind inside to ruffle my hair and lift my sagging spirits.

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Windows. They make me rich with wonders manifold. These wonders don’t exactly make my walls come Jericho-a-tumbling down. But windows have a way of pushing out the walls. A way of letting in the light. A way of lifting me, opening me, connecting me with what’s beyond. And I am grateful.  

Grateful and aware. Aware that there are many in our world confined behind walls far thicker than mine. Walls of painful, crippling illness. Walls of oppression. Walls of punishment. Walls of prejudice and hate. Walls often with only tiny windows or with no windows at all. Walls that shrink minds and souls. Walls that leave spirits damp and dead.

So as I lay my window thanks upon my altar of gratitude, I lay as well a prayer for windows everywhere. A prayer for windows that will enrich, encourage, and embolden all who live behind life’s walls. A prayer for hastening of that day when walls—all walls—will be no more.