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Posts Tagged ‘Bell’s Palsy’

[I wrote this post last summer but didn’t feel brave enough to post it then.  My friend is visiting again soon, and I’m posting now in happy anticipation of her visit.)

 

Every girl wants to be Beautiful.
wine & candlesThere have been two or three times in my life when I’ve actually felt “pretty”.   And I’ve been called, more than once, “cute’.   Now, cute may be flattering when you’re eight years old, and maybe again when you’re 80, but when you’re in your middle years, mature and lovely, “cute” is not what you want to hear.

We had a dinner party here the other evening.  Aromatic reds and chilled white wines and sparkling crystal were set on white linen out on the table in the garden, bright flowers all around, and avocado-spread toasted rounds, tequila-glazed grilled chicken, creamy risotto, and arugula salad.  A friend who travels the world, volunteering with service and education projects in unlikely locations, returns to Vermont about once a year and spends some time with us.  She also happens to have a Masters  degree (from an Ivy League School) in French Bread (honest!!), and when she visits, loves to put on a dinner party.  I simply offer to help cut vegetables and set the table.

The air was clean and warm and laughter flowed, well into the night after the stars and bugs came out.  After the second mosquito, we  took our wine glasses and meandered inside, and at some point, I think after I dribbled some wine onto my chin as my Palsy side doesn’t work so well and sometimes drinking without a straw is a challenge, anyway, somebody said “ah you’re so cute”.

I know it was meant as a sincere compliment, but I worked at a smile and a laugh  through my trembling lips and ducked into the potty room.  I sat on the edge of the tub and had a good 4-minute cry.  Then I splashed some cool water on my face, holding my palsy-side eye closed with my finger of course.  And then I looked in the mirror.

I so long to be composed and sure and beautiful, able to sip a simple wine without concentrating on how my mouth is working; and feel instead awkward, lopsided and disfigured.  The face looking back at me wasn’t me at all — I’m still unfamiliar with this palsied face, even though it has been three years.  I don’t know who this person is, that looks so unattractive to me, with her twisted smile.  The threshold to this pathway of thinking is wide and strong, and there alone in the bathroom, with sounds of laughter and conversation coming through from the room on the other side of the door, there at that moment I had a choice to make.  “I am NOT my face,”  I chose to remind myself.  Inside, my life is full of fun and joy and strength and dignity and, yes, beauty.  My life and love can still shine through my one good eye.  And these people here are all friends, which means they know I love them, and enjoy them, as they do me – and they see past my face.  Way past my face.  I stood there, and chose to smile at myself in the mirror.  And half of my face smiled back, and my eye was full of joy, and it was a beautiful smile.

“I’ve learned my face is an incredible gift,” said Mr. Roche…”Not the kind of gift I was excited about, but it’s a gift because I’ve been forced to find my inner beauty….And I’ve learned that my experiences are universal experiences. Everybody feels disfigured, whether it’s on the inside or the outside. When you step out of the shower in the morning and look at yourself in the mirror, you know what I’m talking about.”

[Quote from a 90-minute program on ‘Inner Beauty’ with Post-Gazette executive editor David Shribman serving as moderator]

 

You can see my other posts on living with facial palsy:

“What’s in Your Smile?”

“Smiles, souls and Zinnias”

“Til We Have Faces”

 

 

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Let me ask you a question… 

When you hear “photo-time, smile for the camera” do you panic and find you have a sudden urge to hide in the bathroom until the photo taking is finished?  Do you instinctively cover your face with your hand? Do you suffer through comments like “what are you so unhappy about?” when you’re only aware of feeling good?   Does the helpful suggestion “Smile!”  make you want to cry?  When you meet someone new and offer them your best smile, do you recognize the flash of awkwardness and discomfort that crosses their face in a micro-second before they recover enough to greet you?  When you’re un-self-consciously enjoying yourself, talking and laughing and smiling freely, do you notice others staring, looking away, or looking uncomfortable because of you?  If not, if you don’t relate to situations like these, maybe, without realizing it, you have “smile privilege”.  What I mean by this is, maybe you have the privilege of enjoying a normal smile without ever giving it a thought.

I know I did.  Until I lost the ability to simply smile with fullness and ease.   I never considered what an elemental gift it is to be able to communicate openly with a smile — a simple and effective non-verbal instantaneous communication that says “I like you.  I am interested in you.”   Psychologists know that smiles have a powerful and instinctual effect on us as humans.  The simple act of smiling is often contagious; people typically react favorably and are more comfortable around you when you are smiling. Who doesn’t take for granted the fact that smiling transmits happiness, friendliness, warmth, and liking.  So, if you smile frequently, you will be perceived as being more likable, friendly, warm and approachable.   bp half smileBut for those who can’t smile, the loss is very, very real. The immediate, non-verbal communication is broken, the person may subliminally be perceived as unfriendly, unlikeable and unapproachable.  Two-plus years with residual Bell’s Palsy and permanent facial nerve damage to one half of my face, leaving me without the ability to move the muscles that automatically produce facial expressions, has certainly opened my eyes to the unexamined ‘smile privilege’.

And led me to be thinking about all kinds of other privilege as well.  You know, the things we take for granted that make life easier, if we think about it.  Like, for example, ‘white privilege’.  Or, if you’re female, you bump into ‘male privilege’.  Put these together, and you get the Biggie:  White Male Privilege, or WMP.

Our denomination has been working carefully at a program called the Damascus Road Project: Dismantling Racism.  This process begins when the “light goes on” so to speak, and we’re “knocked off our horses” and are transformed.  Until we recognize, personally, that we  — racially white in the United States of America I mean — live with an unexamined prerogative to access, education, acceptance, inclusion, familiarity, etc, we can have no concept of racism and white privilege.   If you are white, since when did you go to a drugstore to buy bandages, and choose the package that says “flesh-colored”.  Really?  Whose flesh?

I always thought racism was contemptuous, prejudicial, biased thoughts and actions.  “I’m not racist,” I would have insisted, “Look at my African-American friends.  Remember, I’m the one who got rocks thrown at me over the hedge and teased ‘nigger-lover’ by other children in my neighborhood, for playing with the kids of a family from Nigeria.  I’m not the one who’s racist.”  Only lately have I come to understand that racism is much more subtle than being overtly prejudiced.  It begins with ignorance of the privilege that comes with being white.  It begins with taking something as simple as bandages for granted.  And the process of dismantling it begins with recognizing, in the first place, that privilege exists.  The same goes for sexism, I might gently add.  Or Good Healthism.

Which brings me back to smiles.  If you’re a “smilist”, I hope that the next time you smile today, you will enjoy the privilege, bask in the ease and access it provides you, and delight in its rewards.  And then smile again, for me, and for all those who live with Facial Nerve Palsy.

When 1 + 1 equals 2.
Brain confusion: Which side of the face do you automatically respond to??

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a hero without a face

I have my heroes, same as everyone else – Mother Teresa, Neil Armstrong, Helen Keller — people whose true stories are greater than my simple imaginings, and who share their lives as open encouragement and inspiration for others.  Well,  today I am awed by a new hero, one who is inspiring me when I feel down and freakish with my bell’s palsy  – an unlikely young man who suffered the loss of his entire face in a freak electrical accident. He spent a time with no face at all, just a layer of skin and muscles grafted from other parts of his body, stretched over his skull where his face should have been.  He was eventually the first successful full face transplant in America, now wearing the face of a much older man.  His name is Dallas Wiens.

How does one even imagine what it would be like to live without a face…  Our face is how we recognize ourselves, how we BE ourselves, the symbol of ourselves to others, our vehicle of expression and identity.  Without a face, why, we would be nobody, nothing, in a prison of solitude at best — at the worst, we would be a freak.  So much of the sense of who we are is what we see in the mirror every day.

Psychologists tell us that an infant forms her personal identity by what is mirrored to her in the face of her mother.  Or his.  The child begins to gain a sense of self through what the parent mirrors back:  you are loveable, you are delightful, you are clever, you are fun, or you are stupid, you can’t do anything right, you are in the way…  It is the mirror that tells us who we are; otherwise how would we know?

Dallas Wiens with his young daughter, before the accident; credit:Fox 4 News DFW

Dallas Wiens’ journey took him from having turned his back on God years earlier, straight into the depths of hell.  Quite literally.  In his “near-death” experience he tells of being sucked into an infinite void.  “I saw every sin flash before my eyes, and then I felt a pain that I never before or since felt,” he said.  “It wasn’t physical and it wasn’t internal.  It was like being forsaken, that’s the only way to describe it.  I remember crying out and hearing nothing, and it was utter impermeable darkness.  It was basically separation completely from the divine, and then coming back with God’s arms around me, and an overwhelming sense of peace.”  Dallas Wiens lost his face that day, and without the option of seeing himself in a mirror, it was the mirror of God’s love and grace that began to forge a new identity deep in his soul.

Mr. Wiens’ experience has of course put my puny struggle with facial palsy into a sort of perspective.  Yet as he talks about being “reshaped …into someone new”, I resonate with the truth of what he is saying.  Letting go of an unexamined reliance on the idea that the person I see in the mirror is who I am has been both a bitter and, in the last few months,  a more peaceful process.  The initial trauma was very real, the ongoing adjustments to a half-functioning face have been slow.  It has been nearly two years now since the onset of  Bell’s Palsy, which left me with only 30% function on the right side of my face and new nerves that have cross-wired.  This means that my face is not symmetrical, my eyebrow doesn’t work at all, my cheek muscles are pulled up into an Elvis sneer and my right eye doesn’t blink but it does close and twitch when I eat.   I can manage a smile with only half of my face, so when I feel that I am smiling broadly the effect is actually more like a grimace.  I recognize the micro-second process that happens whenever I meet someone new:  Something is wrong with that woman, I shouldn’t stare.  That response is a kind of mirror of shame that I have needed to learn not to look into.  But I understand their response.  I find that I do the same thing when I involuntarily catch myself in a mirror.

When I catch myself in a mirror, (or, horrors, a photograph!) there is a mighty strong reaction to look away.   That person isn’t me!  What I am discovering, instead, is that there IS a steady, strong me on the other side of my face.  A quieter me.  A gentler me.  A truer me, perhaps.  A Me that is, at any rate, more restful and trusting in God’s reassuring presence.  In the mirror of His love I am finding a connection to a deeper well, a deeper source of identity.  I expect that I will, in time, even grow to love my face.

Kathleen Bogart, (a psychology researcher at Tufts University in Boston who has Moebius Syndrome,  a rare congenital condition that causes complete facial paralysis) states, “The face does form our first impressions, but once we populate our knowledge with the rest of the person, the face recedes to the background.”  I know that my family and friends no longer ‘see’ my dysfunctional face.  They know and enjoy my smile and laughter for what it is.  Talking with only half my mouth becomes a quirky part of me.  The discomfort and stress I FEEL in my face will continue to recede over time, and I will become less and less conscious of it.  My own sense of self will continue to integrate, I pray, as is Dallas Wiens’.

What he says is this:  “What they saw wasn’t me; it was just a mask that I wore, just like their faces were masks that they wore.”  In a way, we all wear masks, don’t we…  And when your mask stops working, you discover a beautiful freedom becomes available, if you let it….

the ‘new’ Dallas Wiens, with his delightful daughter

For now we see in a mirror, darkly; but then face to face: now I know in part; but then shall I know fully even as also I am fully known.

I Corinthians 13:12

*Quotes by Mr. Wiens are from an article in the New Yorker magazine, Transfiguration, by Raffi Khatchadourian, Feb.13&20, 2012

You can read another post related to my experience with Bell’s Palsy here:  WHAT’S IN YOUR SMILE?  and here:  CUTENESS

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Job said,

“Naked I came from my mother’s womb, and naked I shall return there. The Lord gave and the Lord has taken away. Blessed be the name of the Lord.”      -Job 1:21

I woke up this morning convinced that I would be able to smile again. I believed, in God’s mercy, the Bell’s Palsy would be gone and the muscles on half my face, which haven’t worked in 17 months, would be supple again, and spontaneously reflect the inner me to the outside world. The real me, a joyful me. Because we prayed last night. Real prayer, Holy Spirit prayer, boldly-approaching-the-throne-of-grace-in-faith-and-obedience prayer, laying on of hands with anointing by the elders prayer. But, no. The right half of my face is still twisted and unresponsive this morning, my eye still unblinking.

I know there is a temptation to question God – Why? Why me? Didn’t we pray right? Didn’t You promise?

Yet I find that my disappointment doesn’t translate into REAL doubting. I find my Hope and Faith stubbornly connected to something deep that I cannot name. Something deeper and more real than this life.

Our lovely Vermont is slowly getting back on its feet again after Hurricane Irene. Or, rather, back on its roads, which in Vermont is the same thing. The roads connect us, small towns and villages, through the green hills and wandering valleys. Crews have been working around the clock, dump trucks full of rock from the granite quarries rumble through town, going where the commercial trucks are temporarily prohibited from traveling, in order to drop their load at the feet of the giant yellow excavators. These in turn maneuver the great chunks of rock to rebuild the vanished riverbank and provide the foundation for a new roadbed. We were told initially that it would be months before the road from here to the NY border would be passable again, but this morning JR had to go into Rutland/Fair Haven, and the road was open all the way – jerkily and still one lane in many spots – and it has only been three weeks!  We rejoice!

For three weeks ago, Vermont was stripped bare, in too many, many places. Charming brooks, streams and rivers turned into raging brown torrents, scalping fields and woodlands. Rambling cornfields were laid flat, buried in thick muck and mud. Trees, large and small, were ripped away and smashed up against old wooden bridges, carrying them away in the deluge. Trestles, farms, bucolic valleys, erased. The pretty calendar-face of Vermont was changed, despoiled, and her lovely smile was gone. Quiet and peaceful pastoral scenes were replaced with ravaged miles of muck and debris; and the thick, choking smell of wet clay, in your mouth, in your nose… Constant sunshine seemed to mock her destitution, paralyzing for a moment our connection to what we had known, what we had taken for granted. Vermont suffered her own case of Bell’s Palsy.

For Vermonters depend on Vermont, it is part of what makes us, well, us. Losing her face is like losing her soul. At the same time, this disaster revealed something truer, deeper. The soul of her people. And her healing is happening, right here before my eyes. Power, communication and access restored; the newly homeless provided for; mud and debris being hauled away; grants and loans for reclamation and re-building made available, including folks to help with the process; businesses rallying and re-opening for the autumn tourist season; neighbors gathering with music, food and festivities… Yes, healing is happening. Vermont’s true face is being seen.

I continue to hope and pray that my face may be healed. And in the midst of my frustrations and loss I am slowly making friends with a deeper me, a face that the world may not see, but that I am coming to know. Standing in the aftermath of the devastation from Irene, confused and angry, I had to remember the words from Job: “Shall we indeed accept good from God and not accept adversity?”  What I see around me, this life, is not all there is. Indeed, it’s not even the most important part of what is. I have learned this with my face, and I see it in Vermont. Perhaps sometimes it takes separating us from what we take for granted as essential, maybe even a brutal stripping away, to allow a dearer, more naked truth to emerge. And isn’t this grace too?

Well may this body poorer, feebler grow!
It is undressing for its last, sweet bed;
But why should the soul, which death shall never know,
Authority, and power, and memory shed?
It is that love with absolute faith would wed;
God takes the inmost garments off his child,
To have him in his arms, naked and undefiled.
-George MacDonald, Diary of an Old Soul, 1880

cleaning flood-mud caked canning jars from a friend's cellar

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Some days the delight and joy seem like just too much. The air is clear and clean and sparkling, and the rich green is deep and all around, and the birds and bees and butterflies are busy in the gardens. You could drown in the fresh ferns down in the woods if you strolled there, along the brook. This is my world as I sit on the back porch step and try to take it all in.  I feel a tear rolling down my cheek. I am remembering yesterday.

Yesterday, dead-heading iris out among the perennials with the warm sunshine on my back, I was ambushed by peaceful quiet joy as I noticed the blooming zinnias; simple, strong uncomplicated petals. They required nothing of me. They simply were. And they were simply perfect. Three pretty blooms, smiling, and I smiled back, filled with gladness. and gratitude.

Immediately sorrow and anguish swelled and tumbled out at as well, without invitation. My smile, which I felt emerging from a deep, happy place in my soul, caught on my face and twisted. As I felt my cramped cheek muscle contort my smile into a snarl, the grief of living with Bell’s Palsy hit me afresh, as it does daily, and I sobbed there alone in the garden.

We don’t think much about our faces. We sort of take them for granted. We don’t really contemplate that the expressiveness of our face is the reflection of our soul to the world. Until it doesn’t work. For most of us, without disability, we merrily go about living our lives, smiling and laughing at what brings us joy, crying, frowning, speaking our words without trying to manage half our tongue at the same time, expressing and releasing all manner of unintended emotion.

When half of your face is paralyzed, half of your soul stays locked behind in the prison of immobile muscles. And for some of us with BP, healing nerves bring spasms and contractions, often ending up with unusable hypertonic muscles that keep the cheek and lip drawn up in unpleasant contortion. It hurts when the photographer says “smile” and you know you are smiling as big as you can, and the result is something that looks more like a sneer. It hurts to know that you ruin everyone else’s picture, so you stop smiling and learn, with concentration, how to produce a small facsimile. It is lonely there.

And so, smiling at the zinnias, I burst into tears, bumping into my prison bars out there alone in the garden. The zinnias, unperturbed and requiring nothing, smiled back.

This morning, with my steaming mug of black french roast coffee, sitting on the back porch steps and soaking up the glory of this place in which I get to live, my tear is in gratitude for my zinnia.  I realize that if half of the petals yesterday had been curled or distorted, I wouldn’t have been blessed and delighted, but would have turned away.  It is a challenge to my faith to remember to believe that my value, and therefore my beauty, is secured in the heart of my Creator.  He is unperturbed and requires nothing of me, but to bask in his love and in turn offer that love to all I meet.  That’s the same journey we’re all on, and now I’m trying to learn that I can do that even with half a face.

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