Wednesday Wonders: How a Storyteller can have Superpowers

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My mother-in-law Vivian likes to read popcorn Christian romances. You know the type. There’s a swooning woman and a shirtless guy on every cover of the stacks of books she keeps close at hand. God is always a player in these stories so they are not exactly Harlequins — but they aren’t far off.

Once I picked up a book with a title something like Breaking Love and read the first chapter. The writer knew what she was doing with an engaging opening scene and tension that made me wonder if Priscilla was ever going to unfreeze her heart after that last horrendous breakup with Jonathan because she needed to in order to save the farm.

I always thought these book were just silly things that Vivian read until my father-in-law Jim got sick. A retired home health nurse, Vivian took care of him for about two years as his health got slowly worse and worse from diabetes and cirrhosis caused by medications.

As he sunk deeper and deeper he became less and less engaged in the world around him. I could see Vivian becoming more and more alone in caring for him 24 hours a day.

One day I asked her about this. She said yes it was lonely but she often lost herself in her books. I could see how much those stories of Pricillas and Jonathans meant to her.

The writer in me perked up. Sometimes it feels as though the job I do with words is not worth much to others. People often ask me to do it for free. It is a vital piece of what I do in my paid work but not recognized much for its own worth. I work with student nurses who will likely save physical lives in their careers. The value of what I do is not nearly as clear cut.

But a story that could ease my mother-in-law’s burden. Now that was worth something. I honestly believe those silly plot lines saved her sanity and helped to heal her breaking heart in a way that no pharmaceutical could have.

Recently, I heard another story in a Radiolab podcast that reminded me of Vivian and her books.

In this a father desperately wanted to do something to help his premature daughter as her translucent body slipped back and forth between life and death. She was born at twenty three weeks and 6 days and was not at all fully formed.

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A baby much healthier and older than the one in an incubator whose father read to her.

He started reading her Harry Potter and the Sorcerer’s Stone. The mom and dad noticed that her oxygen saturation levels went up whenever he read — unless he tried to act out Hagrid’s voice. Then her numbers went down. His wife made him stop scaring the baby but he kept reading.

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Maybe the little girl was not reacting to the story. Maybe that is not a medically sound analysis. But it was clear to me that the dad needed to read it like he needed her to keep breathing. (She lived and is now a five year old ready to begin kindergarten.)

I realize what I am saying here contradicts what I said last week about writing for myself and not worrying about the interest or approval of others. I have found that most good life answers have an opposite side to them.

I do need a reason to write outside of myself. It can’t be my everything but when I hear how much stories matter to others it helps me to keep going.

In fact, I am such a sap that the story about Harry Potter and the baby made me cry.

That’s why I do this, I told myself. I don’t know that it will help a grieving widow or a desperate father. But what I do is for me and it’s also for others who might need the story I’m writing as much as they need any other kind of medicine.

I don’t know that what I write will work for them. But it’s worth a shot.

May you find your own story medicine-

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Wednesday Wonders: Finding Help When Art Scares You Silly

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Clarinetists with warm-looking fingers

Thursday night I was driving down to the church when I realized my fingers were freezing, my heart was beating, and my mind kept thinking of all the ways I was going to embarrass myself.

I wasn’t headed to a solo performance with my clarinet. It was the rehearsal with the choir.

The music I was playing for Lent only had one short run. The key signature wasn’t difficult, but the time signatures changed from 4/4 to 3/4 to 6/4 to 2/2. They changed repeatedly from measure to measure, even during my rests in places where I didn’t have them marked in my transposed version. I had to rely on the director to see when to play my notes on the entrances.

For those who don’t read music, imagine a dance where the rhythm keeps changing and everyone will see your neon tap shoes stomp on your partner’s toes if you get the count wrong.

The whole thing nearly gave me hives.

And I didn’t feel any better after we practiced together.

The rehearsal ended with me totally flubbing the last notes and everyone thanking me for agreeing to play for the church in three days.

I felt like they thought I was a lost cause, but they weren’t going to worry too much. It was just a regular Sunday, not Easter, after all.

I tried several mental tricks to calm myself, many of them things that I tell others when they are stressed out.

  • I took deep breaths.
  • I thought of other times when I had been successful.
  • I reminded myself that the people listening loved me and would still love me even if I played all the wrong notes and came in after the song was over. My family might even love me more out of sympathy.

These things helped a little. I looked for more ways to reassure myself.

  • I reached out to the pianist and begged her to help me since I could not practice the timing alone. (Miki agreed. She is such a blessing.)
  • I imagined feeling calm and successful after the piece was over.
  • I asked my dear friend Ruth to pray for my peace of mind.

These things helped more but not enough. My fingers were still so cold I could hardly work the keys on my instrument. (Cold fingers are one of my stress reactions. They are not helpful.)

Finally, as I was sitting through the beginning of the service, waiting an eternity to stand in front of the crowd, I thought of a writing idea I use when the words get mired in fear.

I told the song that if she wanted to come out of me, she was going to have to do some of the work because I wasn’t sure I could do it myself. I even got a little snotty with her because I was feeling so stressed about my potential public humiliation. (Never mind that I had agreed to play and, on some level, deeply wanted to do it.)

I had often talked to my stories this way but I had never tried it before with a song.

I instantly felt calmer. It was almost like the song had just been waiting for me to ask.

Ten minutes later I walked in front of the pews and played. I made a few small mistakes but came in at all the right places in the right tempo. Or maybe Lenten Song moved through me and managed her own entrances.

Either way, I loved the peace I found by talking back to my art.

It’s a little woo-woo, I grant you. But the older I get, the more woo-woo the the best parts of life feel to me.

I didn’t make this up myself, by the way. I got the idea from Elizabeth Gilbert’s first Ted Talk and from her book Big Magic.

I’m beginning to think that this sort of sass might work for any great endeavor we try.

Want to finish a degree? Take the classes, study hard, and then tell the degree that if it wants you to earn it, it will have to step up.

Want to raise children? Change the diapers, set limits, hug them often and get serious with the universe, explaining that you are going to need help with that insanely impossible task.

Want more peace in the world? Volunteer, be kind to others especially when they cut you off in traffic, and then tell the world that this is way too big of a task. Insist that you are going to need help to see what to do and how to get it done. A lot of help.

Get snappy with the degree, the universe, or the world. This is key. Maybe talking back shows you are not kidding around. I don’t know. I just know it works for me.

And then relax. The song, the degree, the grown children and the world might surprise you with the impossible things you can do.

They might even surprise you like “Lenten Song” surprised me with the exact right timing so that the people in front of me could hear the song the way she wanted to be heard.

May you rest in the help you can find when you need it-

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Here’s the “Lenten Song” written by Mark Hayes and the solo played by a flute.

And a few other wonders from my week:

A recycled bit on the wonder series:

I love the way writing and other art forms open my eyes to the surprises around me in my everyday life. Many of these wonders will also be in my Instagram account since I discovered the joy of that program during an advent photo project.

I collect these surprises like little rocks in a kid’s pocket. I may use them in a story. I may not. Either way, life gets a little brighter when I take the time to notice.

The Triple Amputation School of Beauty

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(Special Note: I have made an audio of this post so that Carol and others like her can hear my voice rather than Siri’s voice or some other digital voice. If you currently have your vision, I’d challenge you to listen through the words while you close your eyes to get a feel for how Carol might experience the story. You can always open your eyes again to see the pictures after you listen.)

Carol Decker speaking at Bates Technical College

Carol Decker speaking at Bates Technical College

Last week I had the privilege of meeting a gorgeous woman with an even more gorgeous soul. She came to speak to the students I work with at Bates Technical College, and because of this, I have an amazing story to share.

The Months that Changed Her Life

In October of 2007, Carol Decker learned she was pregnant with her second child. Chloe, her oldest was not yet a year old. Up to then, Carol had lived a beautiful life, getting married at 22 to Scott Decker who became a dentist. She worked full time as a medical assistant, had loved to snowboard since she was twelve, and had always been active while growing up with 4 older brothers who taught her to be fearless.

In June of 2008, thirty three weeks into her pregnancy, Carol began to run a fever. Soon her situation became so severe that she went to the hospital where the doctors and health team rushed her into surgery to deliver her baby. She looked at her husband and said goodbye as they wheeled her away. She would not see him again.

Her daughter Sofia was born healthy, but for twenty days the medical professionals kept Carol in a drug induced coma. Scott had to make unbearable decisions to amputate her leg, arm and ring finger on her right hand because her body had become septic — she had an infection that caused her system to stop circulating correctly.

When Carol woke up, she tried to look at the doctor and saw nothing. Her family and medical team learned that she had also gone blind. For weeks after that, she went through a debriding process to remove her damaged skin. Then the doctors ‘harvested’ skin from her back to graft onto those damaged skin areas. The pain was excruciating.

In addition to the strep pneumonia that caused sepsis, she had developed disseminated intravascular coagulation, a condition that created havoc inside her body because the clotting abilities didn’t function correctly. She came close to death countless times.

 

 

Pulling Herself Back Up

When Carol first went home that September, she weighed 90 pounds. Her husband or brothers had to lift her from the bed so that she could go to the bathroom. And she was in agony, mentally and physically. Her two little girls would come to lie next to her while she could do nothing for them.

This — not being able to mother her children — was what broke her heart. And then she dug deep. With the superhuman help of her amazing husband and family, Carol began to use the pain of not being with her children to motivate herself. Her two girls became her reason for life. They were the driving force that pulled her through the months and years of pain and the also excruciating work of rehabilitation.

Six years later, Carol is a speaker, telling others of how she sets and reaches one goal after another. On her birthday in August of 2009 she walked into Wild Ginger on heels. She now helps her children in the kitchen and uses a special tool to cut apples.

She spent a long time, in fact, showing our group the many tools she uses to make her life easier. She showed us her cheetah leg prosthetic, her no-spill bowls, her color reader that electronically tells her the color of her clothing, and told us that she has a talking microwave. In fact, she had a table full of gadgets to share with us.

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Carol’s fantastic gadgets

 

This is NOT the cheetah leg she loves. It's an older version of her prosthetic leg.

This is NOT the cheetah leg she loves. It’s an older version of her prosthetic leg.

Last winter, she was able to go skiing with the help of an organization called Outdoors for All. Being with her family on the mountain that day was a joy that left her lying in the snow after a fall feeling like her life could not possibly get better.

In fact, she says her life now is good. So good that she would not go back to the time before the sepsis if she were given the choice.

 

I sat with over fifty nursing and occupational therapy assistant students and listened to her for an hour. Our attention never lagged in spite of what studies say about our shortened ability to focus. I never saw a person check her phone even though Carol would not have been able to see it to feel slighted.

She ended her talk with powerful life lessons she learned and hoped to pass on to us to bring meaning to her experiences:

Have Courage

If you can get over your fear, you can do anything she said. Carol thought it helped her to have that fearlessness that her brothers had taught her long ago. We all can do with more fearlessness even if we are not faced with the challenges of walking again or negotiating in a world without our vision.

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Ask For and Accept Help

Carol repeats often that she could not do this alone. During her talk, she asked for help twice. Once a student helped when she knocked over a water bottle. Another time, a student helped her with a gadget. She didn’t hesitate to ask, and they didn’t hesitate to help.

Her husband astounds me in what he has done to make her beautiful life possible. He gets her every gadget he thinks will make her life better and does much of the family work that would have fallen on her shoulders if the sepsis had never happened.

I have seen Carol speak before and notice that she always has someone incredible with her. This time her mother-in-law was there. Last time, I met one of her therapists. My colleagues tell me her husband has been to events and also her sister-in-law. She is surrounded by love in the verb form and easily accepts what others offer her in a way that makes her stronger and, I suspect, lifts up those who do the helping.

Carol emphasizes that we all need to let others help us in order to become our best possible selves.

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Carol listens as she is introduced by Lamont Lucas, Diversity/ASG Assistant

 

Let Go and Forgive

Letting go of her past and the way she used to do things allowed Carol to move into the amazing life she has now. She has become extremely flexible in how she manages her everyday tasks. Instead of telling herself she can’t do something, she sets the intention to do it and then problem solves until she finds a way.

Forgiving herself and others for whatever happened in the past has opened her up to the infinite possibilities of today. 

This video about her from KBTC is long. But if you look at minute 18:30, you can see her talk through how she lets go of regrets and then embraces the life she has now.

Live in the Present

In the moment last winter when she fell into the snow with her children and husband on the mountain with her, Carol said she could have easily died a happy woman.

Those experiences, she said, are available to us all at any time if we fully live in the moments.

Have Fun
Carol laughs readily and has what her husband calls ‘infectious optimism.’ She made jokes about her blindness. She can see only occasional flashes of red, white or blue, which, she joked, makes her a patriotic girl.

When we listened to her we could all feel her joy. It was hard not to join in with her even when our hearts broke for what she had been through. Watching her enjoy her life to its fullest, we all wanted to do the same.

Now Carol is working on more speaking engagements and she’s writing a book. 

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Carol’s optimism shows in her smiles.

 

The Big Takeaway

I’ll finish this post by saying that she is one of the most beautiful women I have ever met who is living an astoundingly beautiful life.

A student next to me turned to me after Carol finished speaking. She said, “My life is changed forever.” Mine, too.

I know as I lose my own abilities, I will remember Carol as a model of how to really live. Because, after all, we are all only temporarily ‘abled,’ even if we never experience Carol’s challenges. Eventually our eyesight goes. Our bodies fail us. But we can still live beautiful lives with great courage, the help of others, flexibility and laughter. 

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Carol and Karrie