Peace on earth, good-will to men?

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On Christmas of 1864, the great poet Henry Wadsworth Longfellow wrote the poem “Christmas Bells.” In it he laments:

I heard the bells on Christmas Day
Their old, familiar carols play
And wild and sweet                                      
The words repeat                                              
Of peace on earth, good-will to men

And in despair I bowed my head,  
“There is no peace on earth,” I said
“For hate is strong
and mocks the song                                        
 Of peace on earth, good-will to men.”      
                                                         
***
When I was a kid, my mother loved to bake at Christmas–she spent hours mixing, rolling dough, cutting out crust, decorating cookies. She would often pull a stool up to our kitchen island, and I would sit while she taught me to crack eggs, sift flour, ice cookies. One Christmas, she decided to make salt-dough ornaments for a small tree in our living room. We spent hours making the dough, rolling it out, cutting it into candy canes, tiny stockings, little snow men. The final result was perfect – a beautiful tree covered with red and green Christmas cookies. We were cleaning the kitchen when we heard a crash in the living room. The whole family ran in to find the tree on its side and our overweight lab chowing down on the lovingly made ornaments.

I have so many beautiful Christmas memories. But, in spite of all of the hard work my parents put in, there were also Christmases that weren’t quite so perfect. There were Christmas days where my siblings and I fiercely fought on the car ride to grandma’s house, mornings where I pouted because I got the Molly doll instead of Samantha. Christmases where the beautiful, perfect tree fell over and the dog ate all of the ornaments.

I thought those imperfect Christmases would fade as I grew up. But disappointment sometimes still finds its way in. Christmas can be a time of great joy but also of sadness – full of a grief that seems sharp in relief with all of the things that are supposed to bring us joy. The words of a carol catch in our throat; we open a Christmas birth announcement and look over at a naked spot on the mantle, where a small stocking should be. We unwrap ornaments that remind of us the people we loved who aren’t here to celebrate with us. We read news on our phones of a country deeply divided, of another bombing, or a wildfire that has destroyed a town with little left to lose – things that should never happen, let alone at Christmas.

As Christians, we live in a world stuck between two advents. The already and the not yet. A world where those sacred words-peace on earth, good will to men-sometimes feel more like a question than a promise.

But there is good news. Even in the barren moments.

At Christmas, we celebrate the birth of the divine into human form, an event that forever changed the fabric of the world.

And as people of the second advent, we also celebrate the birth of our own faith; even though we are not yet fully transformed, the “eternal birth” has taken place in our hearts (Meister Eckhart).

This year in particular, I have been thinking about the woman I might have become without this saving faith – a fearful, selfish person, living a small life. And this Christmas season I have felt a little like Scrooge on Christmas morning, celebrating the light of Christ that chases away the “shadows of the things that would have been.” Shadows certainly still live in me. The end of my story has been written but there is still lots of becoming left.

But, even in the midst of the celebrating the joy of the birth of Christ, and the life-giving beginnings of our of own faith, there are still days of sadness and grief, even at Christmas. Days when the “hate is strong” and peace feels very far away.

And Christ respects us enough to tell us that yes, this life is difficult: “In this world you will have trouble.”

But that is not the end of the story.
                                                                               ***
When Longfellow wrote his poem, the United States was years into the civil war, and he had experienced great tragedy in his personal life. After expressing grief over several stanzas, he ends his poem with these words:

Then pealed the bells more loud and deep:                                                                                  
“God is not dead; nor doth he sleep!                                                                                                  
 The Wrong shall fail,                                                                                                                                
 The Right prevail,                                                                                                                                    
With peace on earth, good-will to men.”

God is not dead or asleep. There is an end to the darkness. Sadness does not have the last word. For the Christian faith tells us that grief is not an end destination. It is just a stop along the way. Joy comes in the morning.

“There will be no more death or mourning or crying or pain, for the old order of things has passed away.” Rev 21: 4

And in these middle days, we are not alone. “Lo I am with you always.”

In the midst of imperfection, longing, grief, we are able to celebrate Christmas as people of the second advent. People who hear the music, “more loud and deep” and who know that sorrow will one day be replaced with joy.

“In this world you will have trouble. But take heart! I have overcome the world.”

Back to School

appleA few weeks ago, my doctor called and asked if I would be willing to speak to his medical students. At first, I was hesitant. It meant a long trip, and I don’t love public speaking. My husband enthusiastically encouraged me to go, saying “I think it would be really good for these students to see a hopeful outcome.”

I thought about the times I saw the absence of hope on a doctors face.  I thought about how thankful I am for the doctor who looked at the same body and saw hope. I suppose if I could help change the outlook of even one future neurologist, then my husband was right. It was good for me to go.

My sweet mom came with me, and we arrived at school on a Thursday morning. It was one of those late summer days when the sun looks heavy and tired. The lecture hall was filled with 200 medical students in their second year, and the room was full of the quiet noise of a classroom – papers shuffling, a smattering of coughs, clicking keyboards. I sat in front with 3 other patients who had also had deep brain stimulation for various movement disorders.

The lesson began with an overview of the organic causes of our diseases. I didn’t understand much, but it was amazing to watch this soft-spoken, bookish and brilliant man tell the story of my disease – beginning, in a deep region of the brain where signals  mis-fire and groups of muscles grow deaf to language of movement. Stiff and bent limbs, trouble walking, buttoning clothes, tying shoes, and profound pain are the outcomes.

And once he had laid the clinical foundation, he told the story of healing through each of his patients.

*****

This disease first showed up when I was fourteen. At the time, we went to doctors with blind faith. Trusting they knew the story of what was happening in my body, believing they were heroes who could make my muscles hear again. Months were spent looking for answers and I offered pieces of muscle, bone, blood in search of a diagnoses.

From one baffled doctor to the next, we tried on treatments and diagnoses like clothes.  Some of them fit for a time. But threads soon came unraveled, buttons popped off, stains didn’t wash away. And my body kept changing for the worse.

After some time, the diagnosees, the treatments, didn’t fit at all, and the options were becoming alarmingly and dishearteningly limited. I had one doctor tell my parents it was time to look at wheelchairs. Another thought nothing of looking a frightened girl in the eyes and telling her that she shouldn’t hope for a marriage. It wouldn’t be fair to let someone love her.

I was scared but not ready to give up yet. My profound stubbornness is my best quality.

Out of desperation, we traveled to Indiana where I had my first brain surgery – a surgery that had only been tried once before. It was promising in the beginning, but like all the other diagnoses and treatments, these new clothes wore out quickly.

And that’s how we ended up at a research hospital, arriving with over a dozen failed surgeries in our bags. The doctors I met there handed me a new diagnoses and a better treatment.

I first had deep brain stimulation ten years ago. At the time it was a cutting edge procedure, just barely out of the territory of the experimental.

This surgery was a better fit, giving many of the right words back to my muscles.

It hasn’t been a cure-all – there have been bumps along the way. But it has changed my life immeasurably.

*****

By the time I got to the end of my story, I was overwhelmed. It was the first time I told the entirety of my medical history out loud. At the very end, my doctor played a video of me when the disease was at its worst.

I recognized myself, but the person on the screen didn’t feel like me anymore. She walked painfully, slowly, with her back bent and unnaturally contorted and her legs twisted.  The way she moves feels impossible to me now.

Susan Sontag wrote:

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

I traveled to the “night side of life” earlier than most and have stayed longer than I’d care to. I met lots of doctors along the way. Most of them earnestly tried to help. But the maps they were working with were flawed.

I eventually met a doctor who was interested in rewriting the map out of the wilderness.

When I was telling my story to these students, I realized for the first time that my journey to the “kingdom of the sick” helped this doctor learn more about this strange disease. My affliction, its successes and failures, played a small part in developing better diagnoses and treatments.

If I had to visit the night lands, this was the best way to travel. Because my healing doesn’t just live with me.

I think now about a teenage girl who is just beginning her journey to the places I have travelled. And I am hopeful.

I am hopeful that her doctors have better tools than mine did – clothes that will protect her from the elements, maps that will lead her quickly out of the wilderness.

*****

I am one of the lucky ones. Many people never make it back to the “kingdom of the well.”

But this is only half the story, and it is the less important half. True wholeness, in this life, transcends our physicality.

And I look forward to telling the other half of the story.

The Magic Business of Life

Recently, I was sitting on my porch on a breezy day when a gust of wind blew open a dandelion puff. I watched in wonder as the seeds scattered and were carried away by the wind.

A few months ago, I was sitting on my parents’ porch in the rain, and a young doe tip-toed past and walked into the forest. It was as if she disappeared into the trees – her tawny body dissolving into the green and brown.

Last week, I was picking weeds out of a pot, when I noticed a small mushroom the color of a canary. He appeared overnight among my snapdragons, a cute and funny and out-of-place interloper. He was gone the next day.

A disappearing deer, dancing dandelion seeds, a brazen and bright mushroom. These moments delight me; they seem like magic to me

A biologist would certainly tell me that no, this is not magic. The deer was doing exactly what it was designed to do. Its fur and hooves and movements allow it to fade into the trees and leaves. The deer was just going about the business of survival.

A botanist would say the same. Ginny, there is no “magic” there. The dandelion was literally spreading its seed, ensuring that its weed dna passes on.

A mycologist would no doubt say something similar. But fungi are complicated and I don’t really know what that would be.

For me, knowing the mechanics does not make it less magical. We know that the magician’s assistant is never really cut in half, but we still purchase tickets to the magic show.

So much of this life, perhaps all of life, is about survival. But is that the only purpose of all of this beauty, these “magic” moments? I don’t think so.

But even if the deer’s disappearing act is just a mechanism for survival, it doesn’t make it any less beautiful. And it is something I will always want to see.

“Did the wind used to cry and the hills shout forth praise? Now speech has perished from among the lifeless things of the earth, and living things say very little to very few… And yet it could be that wherever there is motion there is noise, as when a whale breaches and smacks the water, and wherever there is stillness there is the small still voice… What is the difference between a cathedral and a physics lab? Are they not both saying: Hello?”

– Annie Dillard, Teaching a Stone to Talk

The Weight of Gratitude

We had the privilege to spend Thanksgiving at my family’s farm in rural Georgia. And on Thanksgiving day, in the midst of a beautiful smelling busyness – measuring, baking, chopping,frying – Josh and I stole away and spent a few quiet moments next to a creek.The air smelled misty, and the brown and orange, leave-covered creek bank looked warm, like the color of cider. The creek was thin and reflected pieces of the pale sky, and the water was clear and dyed green by the mossy creek rocks.

As we sat watching the water, I found it hard to quiet my mind. And this is the type of the place where your mind should be quiet and deep thoughts should fall into your head like rain. But all I could think about was what bad tv marathon I was going to watch on Friday, or whether the pink pleated skirt I had been eyeing was going to go on sale. I looked over at my husband and he put his arm around me. Really Josh? Ugh, I certainly couldn’t sit at this beautiful place, with the love of my life and think about bad reality TV.

So, I began to think about gratitude. Because that is what you are supposed to think about at Thanksgiving….

Right now gratitude has been been easy for me, because been good gifts have flowed in and out of my hands like water – gifts like friendships, and time with family, and days with less pain.

But the best of all my recent gifts has been a sense of peace. For many seasons of life I have struggled with anxiety stemming from a feeling of scarcity and “if onlys.” If only I was richer, healthier, smarter, etc., then peace would perch firmly on the ledge of my soul. Sometimes I received tastes of the things I longed for, but it was never enough. I was always hungry for more.

This illness that is the antithesis of everything I craved in life has strangely made a way for peace and joy to become more permanent residents in my heart.

Days of pain and heartache have forced me to draw close to God and His presence has been both palpable and mysterious. The presence of God, of Christ,  the great balm of Gilead that heals and mends, helped my heart hold on when my body was ready to give up. And there is a peculiar comfort in  knowing that even when your body is broken, the peace of God can heal your soul, and when that wholeness comes, then you will know, more clearly than ever, that pain is not the end of the story  because”all is forgiven, and all will be well.” (Miroslav Volf)

And so I am deeply grateful for this peculiar peace and the gratitude it has given. Because gratitude increases the weight of your life in this world. When you feel that what you have is enough, then the hunger, the longing  for more, falls away and the gaping holes in your heart are patched. And you are left feeling full, ready to go out and serve and give out of your abundance.

The Marshmallow Test

marshMany years ago, there was a famous study at Stanford examining deferred gratification. It’s known commonly known as “The Marshmallow Test.” In this experiment, small children were placed at a table. And on top of that small table was a marshmallow, a beacon of deliciousness in an empty room. The researchers gave the children the option of eating the marshmallow OR waiting fifteen minutes when they would then be given TWO marshmallows. Wise and good kids did everything they could to avoid eating that marshmallow. They covered their eyes, they hid under the table, some even treated the marshmallow like a pet, stroking it until it became soft and sticky and misshapen. Other children anxiously watched the researchers leave, and then promptly gobbled up the marshmallow, giving up any chance at a second one. I have no doubt which type of child I would have been. I would have waited until that door clicked and then eaten the marshmallow, enjoying every delicious, sugary bite.

Recently, my health has been very up and down. Some days, I wake up and am bursting with energy. And on those days, I eat the marshmallow. I schedule coffee with a friend, prune the roses, try to rearrange my closet by color, and then, predictably at about two o’clock, I crash. My body stiffens and my muscles warp, and I am back in a place I don’t want to be. This usually lasts for 2 or 3 days. Days when getting out of bed is not an option, and I wear the same clothes, sporadically brush my teeth, and try to find something on Netlfix that I haven’t seen. Josh, in his irritatingly wise and gentle way, has been encouraging me to do a better job of pacing myself. And I’ve been trying, with mixed success.

On Saturday, I woke up feeling good. My first though was to head straight to the gym, and then the grocery store, and then the plant nursery. The words “pace yourself” annoyingly popped into my mind, and I crossed those things off of my list, choosing a more appropriate activity. For months, I’ve been wanting to try painting with watercolors. I’ve found that doing creative things calms my body and soul. So, I hopped into my car and headed to the closest Michael’s to buy cheap watercolors and paper.

The parking lot was the parking lot of my nightmares. There were few spaces, and women in minivans whipping past me right and left, snatching them up. A young woman aggressively pulled into the one remaining handicapped space in the lot, and I watched her walk swiftly in the store.

I vividly remember the first time I parked in one of those blue and white spaces. I was in my early twenties and had had my handicapped placard for months, but it had stayed in my glove box. I was at a point where I was using a crutch but could still drive a bit, and one day I went to Target. The parking lot was full except for one small blue space. And I parked in it, and the truth is, it was time for me to park there. Because extra steps were becoming harder and harder for me to take. But pulling into that spot was bitter. It was a convenience given to me by something that inconvenienced every aspect of my life. Now, legally, I am able to still park in handicapped spaces. But I don’t. Because they are precious, and because my walking has improved enough where most days I don’t need to.

When I walked into Michaels, the first thing I saw was that young woman. I approached her, and she looked terrified. I think I may have looked a little scary. Admittedly, I was angry.

“Excuse me m’am? I saw that you parked in the handicapped space, but don’t have a placard.”

“No, I’m not handicapped, but my mother is.”

“Um, is she with you?”

She looked down, ashamed.

“Please don’t park in those spaces if you’re not handicapped.”

“Thank you,” she said. And then hurried away.

I thought I would feel better if I “called her out.” But I didn’t. I felt ashamed. Because my motives weren’t pure – I approached her out of a place anger, not education.

I don’t think this woman was a bad person. Certainly no worse than I am. I regularly do things, consciously and unconsciously, that are inconsiderate of others. And I don’t know why she chose to park there. Maybe she wasn’t thinking. Or she had a crafting emergency that was time sensitive. Most likely it was just because she just didn’t think it would matter.

It seems like a small thing, parking in a handicapped space. But it isn’t. If you are someone for whom each step hurts, or for whom steps are entirely impossible, those white and blue spaces are essential.They give access to places that are otherwise inaccessible. One of the hardest parts of being disabled is being sequestered from many of the normal things in life. And my experience with disability has not been nearly as profound as so many.

This week I listened to a beautiful sermon by Dr. Craig Barnes on David and Mephibosheth. Mephibosheth was one of Jonathan’s sons and was “lame” in both feet, forcing him to live a mean, anonymous life. King David, wanting to show the love of God to Jonathan’s household, summoned Mephibosheth, calling him by name. And he showed great kindness to him, giving him a seat at his table “like one of the king’s sons.”

During my struggles with mobility, one of my greatest fears has been that it would isolate me. More than anything, I am afraid to lose my “seat at the table.”

Sometimes, I take my own seat away. On days, when I spend my energy foolishly, I take my seat away. I lose my chance at a second marshmallow. But other times, other people can take away access to the table. Often they don’t mean to, often it’s a thoughtless action, but those actions have great power over the lives of those who can’t move as freely through the world.

I did in fact buy my watercolors. And spent the day painting pastel colored pictures, quietly pacing myself. Saving some energy for another day.

*several of you have asked to see the watercolors since I posted this. Here ya go – are a mix of my watercolors & photoshop adds – kind of a whimsical, woodland thing

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Dog Park Anxiety

OtisThe first time we took Otis to a dog park was in Atlanta. Up until this point, the only dogs Otis had encountered were two old, salty, set-in-their-way grumps. Their reaction to Otis floated inbetween indifferent and annoyed; and because of this, I had this secret fear that Otis was annoying.

I chose a bench in the shade and sat anxiously watching Otis approach other dogs, attempting to make friends in that peculiar way dogs do – involving back-ends and noses. The first few approaches did not go well – the dogs ignored him, not even giving a return sniff.

“I knew it – I knew it, we are the owners of an annoying dog.” And if I was the owner of annoying dog, what did that say about me? Am I annoying too? Did I raise him right? Was he properly dog-socialized?

Just before I fell into a Stage 5 worry spiral, Otis approached a puppy. Tall and gangly, with two mis-matched ears, this guy outweighed Otis by at least 15 pounds. I watched as some invisible signal passed between them, and they began wrestling in the dirt. Otis is allegedly a mix between a french and an english bulldog, and we lovingly refer to him as our “meatloaf.” His best asset in any wrestling match is his low center of gravity. I watched as he somehow flipped the puppy on his back and sat on his head. He looked so happy, and the puppy looked happy too. Otis made a friend. I was relieved.

Otis has since gained confidence in his dog friend-making ability. Maybe a little too much confidence. Typically, he finds the largest dog at the park and tries to tackle/mount them. At our first trip to a dog park in Texas, he went straight for a very large Weimaraner. They began wrestling and playing happily. Otis would bite the other dog’s ear, the other dog would bite him back, Otis would try to sit on his head, the other dog would push him over, and so on and so on. My vet told me he is “brachycephalic” which means his entire respiratory system is fairly small. An unfortunate side effect of this is that when he gets really excited, he makes noises that sound like a cross between an angry pig and a growling dog.

Josh and I know he’s not mad or in distress or in danger of hurting bystanders, but there is no way other people could tell. After 5 or so minutes of playing, Otis was in full angry-pigdog mode. I looked around anxiously. Soon, the owners of the Weimaraner came over and dragged him away. I watched as they brought him to a picnic table with balloons, cupcakes, and party hats. They reached down and put a birthday hat on the dog and gave him what I can only assume was a gluten-free, organic, $5 dog-cupcake.

“Great! Otis ruined the Weimaraner’s birthday party” I said anxiously to Josh.

“Seriously? Do you realize what you just said?”

*****************

I can’t help myself. When we go to the dog park, I turn into a crazy person; the type of person who would sing kumbaya with their dog if dogs could sing and then would worry that their dog was singing off key. It definitely brings out a “different” side of me, but we also have noticed that I am not alone. Something about them brings out certain characteristics in people I don’t think you would see anywhere else. Here are a few types we’ve encountered at almost every dog park:

The gear nut:

They are usually wearing $100 hiking sandals and a camel-back with a sticker that says “my dog hiked the AT.” They have a gore-tex dog bowl, a camping chair, a doggy life jacket, one of those stick-things that you use to throw tennis balls, and a dog epi-pen.

The helicopter dog parent:

This person who follows their dog around, making sure he or she isn’t ruining the experience for anyone else, making sure the dog isn’t in danger of over-heating, dehydrating, tripping, or drowning in an over-size dog bowl. I am this person.

The dog-owning hipster: 

If you see a person wearing skinny jeans, a deep-v, statement glasses, and taking Polaroid pictures of their dog, they most likely fall in this category.

This person’s dog has some obscure literary name: baudelaire, finnegan, ginsberg – and their dog is a rescue. But it is the unicorn of rescues because it is a pure-bred. But not a common pure-bred like a lab or golden retriever – it’s some type of dog that you’ve never heard of – a grand basset griffon, a pumi, an italian spumoni. They may have had to travel to a shelter in brooklyn, or berkeley, or london to find this dog but insist it is definitely a rescue.

The Chatty-Cathy:

These people are great if you are lonely and/or need a new friend. They slowly sidle up to you, and then ask an innocuous question about your dog. Next thing you know it has been 45 minutes and you know everything about their dog’s bloodline, travel history, and vaccine schedule.

The person trying to “socialize” their dog:

They are often the owner of a high energy dog breed or a puppy and give their dog a stern talking to before letting it off the leash. Their dog promptly “attacks” another dog. These attacks look suspiciously like a normal dog trying to play. The owner apologizes profusely for their dog not being properly “socialized,” and tell you that they have tried everything – dog play groups, gluten-free dog food, reiki, acupuncture, dog valium.

Who knows what becomes of all of these un-socialized dogs. They’ll never get into a good preschool, and if they don’t get into a good preschool you can forget about a decent elementary school, college is out the window, and then you’ll find them “straggling around the streets in an old coat, saying ‘help, alms for the poor.'”

***********

I am not sure when dogs began to occupy such a large part of the landscape of our lives. When we (or some of us) started to use the language of “parents” versus “masters,” “raise” versus “train.”  I certainly never thought I would be one of “those people.” A person who has legitimate anxiety about whether their dog was making “friends,” or dressed their dog up for halloween, or who has a collection of bow-ties and sweaters and maybe even a Beethoven wig for their dog to wear.

And a part of me knows that I am ridiculous – because he is just a dog. But in this season of life when there are still days I’m too weak to leave the house, days when my heart longs for the children we will one day adopt, days when I still miss my family and friends in Atlanta, this little dog has been my buddy, my companion. And I am more grateful for him, my little meatloaf, than I ever thought I could be.

Summer Reading Recommendations

Book Pic

Summer is almost here, and I post this selfishly because I am hoping for suggestions for books to read. So, I’m going to list a few of my favorites and hope to get a few of yours in response (Skip to the bottom for the list – I got a little carried away with writing about reading).

When I was a little girl, my mom would read us fairy tales every night. When we were older, those were replaced with longer reads: Fantastic Mr. Fox, The Boxcar Children, Little House on the Prairie. I once thought this was a part of everyone’s childhood, but I was lucky to be given a wealth of stories, stories that formed the foundation of my own voice.

During my early teens and twenties, surgeons kept replacing a tube in my spine, and I had to be very still while it healed, sometimes for months at a time. On mild days, my parents would drag a lounge chair into the middle of our lawn, where my mother had coaxed dogwoods, hydrangeas,and viburnum into a great, green fence. I would spend hours reading while our dog, Winston, rested by me feet.  Winston is a clumber spaniel, and a certain slowness is a part of his nature. He wasn’t much of a yard dog, be he loved to stay with me while I was reading. I like to think he stayed next to my chair because he sensed  I needed a little extra protection, a bit of extra care. Unfortunately, he also became very protective of the yard at that time, and there were a few “alleged” instances with yard men. Winston is still with us, but cannot see or hear as well as he used to and occasionally has dreams where his feet twitch and he barks in his sleep. I sometimes imagine he’s dreaming of the great “battles” he fought, bravely defending the yard from leaf blowers and rakes.

If the reading I did as a child helped form the voice in my mind, the reading I did during those long months helped me decide how I wanted to live as an adult. I read everything from “chick lit” to autobiographies, to spiritual books, to classic literature. And the voices I liked and disliked remain firm in my mind.

During this last relapse, I spent the first few months reading a few pages of a book and then setting it aside.  I couldn’t concentrate enough to read. And this saddened me, because reading has been healing, giving me the words to understand and describe my experience, and other peoples’ stories have also helped me from being consumed by my own.

This reading drought continued until my friend M.B. gave me a book. She is one of those people who recommends a book or TV show, and it immediately goes to the top of my list. My friend has impeccable taste and probably could make a fortune if she ever decided to start a blog where she recommends books or shows on Netflix.

So, I sat in my yard with this book, Learning to Walk in the Dark by Barbara Taylor Brown and it broke whatever spell was over my reading life. The best part for me was the Chapter titled, The Eyes of the Blind. In it, Brown writes about Jacques Lusseyran, a blind French resistance fighter.  As a child, his parents, who “deeply understood the spiritual life,” did not pity him, but encouraged him, saying “Always tell us when you discover something.”

This single line reframed the entire way I saw my illness and gave voice to a hope I didn’t know I had. If there are things to be discovered in blindness, then there could certainly be things to discover in my own situation. And I have since tried to look closely, with the eyes of an explorer.

The short story is I love to read, especially during the summer. And I also love to share and receive book recommendations. Here are a few of my favorites, broken up into categories I sort of made up:

Beach Reads

I have pretty loose criteria for what I consider a “beach read.” It just has to be reasonably well written and have a plot that pulls me in quickly – on vacation, I usually have a very short attention span. (Names of books are linked to Amazon)

Where’d You Go Bernadette:

A friend in my supper club in Atlanta recommended this to me, and I recommend it to people all of the time. It is well written, easy to read, funny, and has an interesting plot. It is almost satirical at points, and has some deeper themes about grief and loss, but overall is just entertaining.

The Orchid Thief:

This is non-fiction and paints an excellent picture of the culture and environment of certain parts of Florida. It has a great main character, and interesting descriptions of the strange subculture of serious orchid lovers and the sometimes violent history behind modern orchid propogation.

The Yellow Eyes of Crocodiles:

This book was very popular in France and (I believe) was just translated into English within the last few years.  I enjoyed getting a window into French culture, and the story was satisfying in the way a good romantic comedy is.

The Devil in The White City:

It may be unfair to put this in the “beach read” category, because it is not really a traditional “beach read,” but this fits all of my made up criteria for one. It is a true story about the world’s fair in Chicago in 1893, and a serial killer who preyed on women travelers. Reads like a novel, and you will feel smarter afterwards because you will know more about the history of Chicago.

The Language of Flowers:

My mother recommended this to me, and I loved reading this book. It is a beautiful story, a little sad at times, but definitely an easy, enjoyable read.

The Geography of Bliss:

Interesting, fun read about “happiness” in various places around the world.

“Good” Books 

These are books that I have loved, but have taken more work than what I would call a “beach read.” They are a little denser or longer or more challenging to become involvedin the plot. Still good candidates for “summer” reading

A Prayer for Owen Meany:

Short description here. I will always love Owen Meany – one of my very favorite characters.

Pilgrim at Tinker Creek:

Annie Dillard wrote this book in her early twenties and won the Pulitzer Prize. She drives some people crazy, but others are fanaticical in their love for this book. Some people think of this as a “nature” book, but it is much more than that. She asks deep questions about faith and what we can learn about the character of God from the natural world.

Cutting for Stone:

I was heartbroken by this story but was so sad when it was done – I wanted it to keep on going. Beautiful, epic story.

Lonesome Dove:

This also won the Pulitzer Prize and was essentially required reading in our family. Great characters, slow in the beginning, but it is a lovely story. I am biased though, because I was required to like this book or I may have been disowned.

The Invention of Wings:

My friend M.B. recommended this to me. I love this book because of the truth that inspired it. The life of the Grimke women challenged me and led me to wonder if I would have had the courage to do what they did.

Subcategory of “Good Books”: Magical Realism:

I made this a subcategory because some people really don’t like books of this type. But this is perhaps my favorite “genre” of fiction:

One Hundred Years of Solitude:

I can’t say anything that hasn’t been written about this book. Read it on my lawn chair and have loved it ever since.

The Snow Child:

This was a finalist for the Pulitzer Prize, and I am so jealous of the way this writer writes and the way she sees the world. Set in Alaska in 1920 and inspired by a Russian Fairy Tale. Described by one reviewer as the book that would have been written if “Willa Cather and Gabriel Garcia Marcquez had collaborated”

The Life of Pi:

I loved this book from the beginning, when it opened with a description of three and two toed sloths. A fantastical, beautiful story.

Books about Christianity: 

These books have been helpful to my faith:

Waiting for God:

Simone Weil is a hero of mine. Her life fascinates m,e and her writing is beautiful and profound.

My Bright Abyss:

Christian Wiman has cancer, and I do not understand what that is like. But I have faced a serious illness as a “younger person” and sometimes this has felt like visiting a foreign country. A place that has its own language, customs, landscape. And he speaks the language, because he has been there, and his words have helped me understand my own experience.

But this is not just a book for people who have been ill. He mostly writes about faith, from the perspective of someone who left the faith of his childhood and returned to it as an adult.

Belief: Readings on the Reason for Faith:

I just read this. A great set of essays compiled by Francis Collins – deals with doubts, coexistence of faith and science, how God can allow suffering, etc. Features both modern and classical writers – Plato, Madeline L’Engle, Thomas Merton, etc.

Turn my Mourning into Dancing:

I read this book in my early twenties, and it helped shaped my thinking about God and suffering.

Egrets and Shark’s Teeth

imageA few weeks ago I went to one of my favorite places – Pawley’s Island, South Carolina.  My in-laws were so kind to invite me to come along with them on vacation, which was a great gift to me. Because it is a place that lodged in my heart as a child, and lives brightly in my memory. The island is barrier island, with houses sandwiched between a tidal marsh and the Atlantic Ocean. Josh and I got married there – in a white clapboard chapel on stilts in the marsh, the back wall covered in glass windows. The marsh is colored in a palette I love – muted browns and greens and blues. And there is texture – long grasses and sharp oyster shells, and slow, smooth water.  In the grasses, herons and egrets slowly stalk crabs and whelks. When we were kids, my brother and I used to tell our sister that egrets were very dangerous, that their long thin beaks were uniquely designed to suck the brains out of little girls’ ears. To this day, she is terrified of egrets. And, occasionally, I wonder whether my brother and I have some secret psychopathic tendencies. Every once and a while, I take those online quizzes, “Are you a psychopath?” just to check.

Across from the marsh is the Atlantic Ocean. Most often, it is colored army green, and the surface is marbled with foam and white peaks. When the water is still, it blushes purple or blue or silver, depending on the color of the sky. During the days, I took walks on the beach, combing through shells and driftwood. When we were kids, my mom’s friends were experts at spotting shark’s teeth.  They would walk along the beach and suddenly bend down, calling a black shark tooth out of the void. It was like magic to me. And for years I’ve been tried to develop this trick, to hone my eye for the unique shape and inky blackness. But they remain invisible to me. Nonetheless, I still like to wander the beach and look at the shells and coral, all the evidence of the life under the water I cannot see.

Several years ago, I read an article about Dr. Gary Greenberg, who takes photographs through microscopes of flowers, sand, food. The ones of sand are stunning – a magnified grain of sand looks like a collection of tiny jewels, and shells, and miniature starfish. He says, “The secrets of nature are visible everywhere. Yet, they remain secrets until they are revealed.”
I am awestruck by these secrets. By this beauty that has been there for years and years and years, invisible except during a tiny slice of human history. http://sandgrains.com/artist.html.

One of my very favorite writers, Simone Weil, says “Affliction is the uprooting of life.” I think this is true, at least in my own life. But once the affliction is over, there is a re-planting. Lately, I’ve felt like I’m living in a Disney movie. I take walks to the pond in our neighborhood and am overwhelmed by the beauty of the how the purple martins fly, of the ducks and their ducklings, of the turtles sunning on the rocks. I come home and tell Josh about everything I’ve seen, about the squirrel that fell out of the tree, the goose that got into in a fight with a turtle, about the martins collecting sticks for their nests. And he kindly nods his head, mimicking listening as his eyes glaze over.

I remember feeling this way before, many years ago when I went through a similar healing process. And for a while I was “like Adam waking up in Eden, amazed at the cleverness of my hands and at the brilliance pouring into my mind through my eyes” (Marilynn Robinson). I wake up these days and am overwhelmed at how my body works, and I look at the world outside and for me it is like those grains of sand under a microscope. I hope I can keep this feeling from fading. Because I think it’s important to see. To notice the beauty of life, both mundane and spectacular. Beauty is a mysterious and subjective thing. You could write a whole book on what it is and why people’s perceptions of it differ and what it means. For me, beauty in nature points to God. For someone else, it points to a certain evolutionary advantage. For someone else, it means nothing.

Regardless of its provenance or purpose, the beauty of the world can greatly enhance our lives. And it is everywhere. Annie Dillard says, “beauty and grace are performed whether or not we will or sense them. The least we can do is try to be there. ” Right now it is easy for me to “try to be there,” and to see. My eyes feel fresh, the world,new and precious in my hands. As I continue to heal and life “normalizes,” I hope I can find some way to continue to see, to continue to “be there,” because seeing has filled my days with goodness and wonder.

The Rest of the Story – Part 2

I left that first programming appointment walking without my crutch for the first time in a year.

And over the next month, my body felt new to me. I could go for hours without thinking of it, without being conscious of pain in my arms and legs and back. I still am not quite “normal,” but normal has become irrelevant to me.

It has taken longer than I thought to accept this new reality. It was strangely scary to me at first. I couldn’t quite comprehend that the disease that had literally crippled me for the past year was now being held at bay. And at the margins of my mind were fears of it coming back. After that first appointment, I said to Josh through tears, “What if it comes back?
“It might someday and it might not. But we can’t live in that place of fear. We’ve got to be grateful for the good moments while they are here.”

Over the next month I tried to do just that – succeeding somedays, failing on others. Trying to live in a space of freedom, of joy, in a life that feels new. In a body that does not yet feel like my own.

And this past week I came back to Atlanta for a second “programming” appointment. My doctor and NP greeted me with smiles and had copies of scans spread across the office.

“I want to tell you what we’ve learned from your case, and what we think happened to you when this started.”

You could have knocked me over with a feather when he said this. For an entire year, there has, frustratingly been no “why.” They’ve given us a few conjectures, theories, guesses, but nothing remotely concrete.

He proceeded to point to my scans and explain what they think happened. Explaining it accurately here is beyond me – it involves parts of the brain I can’t spell, and metabolic and electrical processes I have no hope of understanding. But the short story is that the electrical wires were previously stimulating an area of my brain that is not optimal; thus, the stimulation had a shelf life. As my disease progressed, that stimulation became less and less effective until it just didn’t work well at all. Technology has progressed significantly, and with this last surgery, they were able to precisely place the wires in an area of my brain where the stimulation should not lose efficacy.

After my doctor explained this, he went on to tell me that what they learned from my case has the ability to help other people with my condition. He gave me a great gift in telling me this, one that I will hold dear for a long time.

He also evaluated my walking and movement. Unfortunately, I have lost a lot of range of motion over the past year. Fortunately, I am now at the point where I can do physical therapy to try to and regain it. He also mentioned that I can (slowly) start to exercise as my body allows. Rowing machines and stationary bikes are apparently good – treadmills and un-stationary bikes are bad. I proudly mentioned that I had been taking Otis for (very short) walks. He looked at me as if I had told him that I had recently gone Base jumping. “No dog walking – at all. It’s very, very dangerous.” Who knew? The good news is that I don’t think Otis will be too disappointed. Our walks have been quite slow, and when I grab the leash, he gets the same look he has when I take him to the vet.

I feel like we are at the beginning of a new season. This past year pushed me to the end of myself – to a place where I felt hollow and small and brittle. But this left space for the light of grace to come through. Grace from my husband every day, through countless selfless actions. Grace from friends whose faith was strong when mine was very weak. Grace from our church, where countless have acted as friends when we were still strangers. And the mysterious grace of God, which gives my life hope and weight and goodness, in spite of my flawed and narrow self.

The Rest of the Story – Part 1

Almost a year ago exactly, a dear friend took me to a garden I had wanted to visit. I had heard the owner on the radio, talking about how the many years he spent, studying in Japan and importing rocks and trees and moss. The Japanese garden was the “picture of tranquility,” he said. He also mentioned that it contained a large rock that he had searched for for five years. If I spent five years looking for a rock, I’m not sure I would tell anyone. Then again, many of the Japanese gardens I’ve seen are very serene, and perhaps that’s why – because they are created with an attention to detail that is beyond most of us. But, still, I could not imagine what would be so special about a rock that it took him five years to find? And how many rocks did he look at in between, and reject? And what was it about this rock in particular that made it “the one,” the rock he had been waiting for all of those years?

When we got to there we took the “shuttle” to the Japanese garden. To my disappointment, it only got us within several hundred yards of the actual garden. At this point, I was at my very worst physically and that distance was much too far for me to walk easily or quickly. By the time we got there, my legs and my back were beginning to spasm badly. We only sat for a few minutes before I was ready to leave. We never found the five-year rock.

This past weekend in Dallas the days were mostly grey and cool, the kind of days that make me restless but don’t particularly make me want to leave the house. But Josh is usually more restless than I am and encouraged me to bundle up so he could take me to a park he found.The park was nestled in the middle of an old neighborhood, lined with tall trees and carefully groomed yards. The paths wound down towards a creek bottom, and I could see a network of small stone footbridges. We walked slowly through the paths and over the footbridges, and I watched the stream flow through a cut of limestone, striped green with moss.

It’s been about a month since the initial programming of my neurostimulator. The process took about four hours, and most of that time was spent with a young doctor, who is doing a fellowship at Emory. He advised me that with dystonia, people do not often see improvements right away – that it can take weeks or months to see changes.  The purpose of the initial programming was “to see how far we can go before we see side effects.”

When I first had this device programmed ten years ago, it was nothing short of miraculous. It took hours and hours of trial and error – the doctor would try something, and I would either feel nothing or overwhelming nausea. But eventually I started to feel something different, and that something translated into meaningful results in my arms and legs. By the end, I went from barely being able to walk, to walking steadily on my own – straight and tall and without stiffness. However, this time, I had prepared myself- and had been warned several times -that the results may not be so dramatic and the side effects might be different.

The Dr. began with the left side of my brain, which controls the right side of my body – the side that is my worst.

He made changes on his mouse pad, which made changes in the actual stimulation I received, and after each change, asked “How are you feeling?” At first, I felt nothing. Which makes an anxious person like myself feel more anxious – because I felt like I should be feeling something. It was like a multiple choice question, where the right answer is “none of the above.”

But then, I started to feel something but the something was not good.

“How are you feeling?”

“Um, not good. I feel funny?”

“Can you use a different word other than funny?”

I had no words at this point other than that. It truly was a feeling I couldn’t describe and still can’t. He offered up several options “twitchy? or do you feel pulling? or is the dystonia worse?” I went with twitchy.

He kept clicking away at the mouse pad, and then the feeling got much stronger, until the whole right side of my body contracted severely. I tried to remain calm but  couldn’t.

“Please stop”

With a few clicks, the feeling went away as quickly as it came.

“How were you feeling?”

This time it was easy to pinpoint, whatever he did made the dystonia much worse.

By the time he got to the left side, the process was easier and much less painful. We were done relatively quickly.

“Why was this side so much faster?”

“Because I finally figured out what you meant by funny, and I knew that’s when we needed to stop.”