Meeting Joni

2013 Joni Camp Volunteers

When I was 12 I pulled a copy of Joni off my parent’s bookshelf.  Joni (pronounced Johnny, her dad was hoping for a boy) Eareckson Tada was in a diving accident as a teenager, resulting in quadriplegia.  Her story is vividly told in her book, and as I flipped its pages, I felt as if I was living her accident right alongside her.  Screws were drilled into her head stabilizing her neck in a halo as she lay still on a Stryker frame, being flipped back and forth every few hours to prevent bedsores.  I read the whole thing in a little over a weekend.  I could not put it

down.

At the end of the book, Joni makes a brave statement about God, “I’d rather be in this wheelchair knowing Him, than on my feet without Him.”

I couldn’t handle it.

I threw her book under my bed in a rage of emotion.  As a 7^th grader, more than anything in my heart, I just wanted God to heal me of cerebral palsy.  I wanted to go skiing and wear high heels.  I wanted gym class to be less awkward.  There was no way I even wanted to imagine being an adult still living with a disability, much less have peace about it.

Eventually, I threw the book in the trash, and for the next decade I lived in fear of Joni Eareckson Tada.  I had reoccurring nightmares about her and was freaked out that she was going to show up at my house in her wheel chair.  Traumatic scenes from her movie played over and over in my head.  I couldn’t look at a picture of Joni without growing tense and frightened, a fearful shiver running through my body.

Looking back, I wonder if her story evoked something in my subconscious, my body reliving its own trauma of the operation I underwent at 4 years old to improve my gait.  Both of my femurs were broken.  My tendons were severed. I lay in a body cast of six weeks, flipped back and forth.  There were no “child life specialists” in the 1980s; no counselor ever sat me down to help me process my experience. 

The body doesn’t forget even though time marches on.

Two years ago, a childhood friend invited me to join her at a Joni & Friends retreat, helping families vacation who have a member with a disability.  I initially declined, but after much consideration (including some relief that Joni wasn’t going to be there), soul searching, and tears, I decided to go. 

That decision impacted my life in ways I didn’t expect.

I met a whole community of people, many of them impacted by disability, which loved me and saw me as a whole person.  People whose lives are very different than mine, but in many ways are very much the same.  People who both intimately knew the pain of living with permanent disability and the quiet of joy of knowing a Savior who is with them and will sustain them every step of the way.  People who knew how to rejoice in the hope of heaven: where wheelchairs, autism, and cerebral palsy don’t exist.

This community of people gathers each summer because of the work of one woman: Joni Eareckson Tada.  This summer, she will join us in Minnesota for family retreat.

I had the opportunity to meet Joni late last month at an event in the Twin Cities.  Trembling, I handed her a copy of Walking withTension, and said, “I wrote a book: You’re in it.”  I told her my backstory, trying to contain my nerves, and with gentle kindness and beauty, she graciously accepted my gift.

A few days later, I received this note in the mail:

I just wanted to write a note of heartfelt thanks for giving me a personally autographed copy of your precious book Walking with Tension--it's not easy living with any disability, but in your book, you seem to guide the reader past the 'physical' and into a deeper understanding of who God is in the midst of pain. May all those who read Walking with Tension be blessed and inspired to look past their limitations, as well. God's grace and favor be yours!

Wow.

How gracious of God to pay attention to every detail of our lives, bringing healing and redemption even to the darkest and oldest parts of our fears.

--------

Want to learn more?

You can purchase Walking with Tension in paperback and e-book.  I tell about Joni in chapter 3.

Joni & Friends is the ministry of Joni Eareckson Tada.  They are still looking for volunteers to attend family retreat this summer.  Check it out!

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Why I Need People Cheering Me On

Last summer, my sister-in-law ran a 5K in Nisswa, MN.  The rest of us sat on the sidelines, drinking coffee, cheering her on.  When she finished she suggested that we all run it next year as a family.

I’m not a runner.

But I do thrive on achieving long-term goals. 

After I completed 16 weeks of doctoral level coursework this winter and launched my first book (Learn more about Walking with Tension here), I figured I better move towards something, or I’m going to be lost.

So, on Monday, March 3^rd, I headed to the Reebok store and purchased new running shoes, and on Tuesday, March 4^th I laced them up and hit the track.

I’m training using a modified version of the Couch to 5K program, taking two weeks for each phase of the program instead of one.  My goal is not necessarily to run the race this summer, but to at least be prepared to run/walk it successfully.

I wish I could tell you that every day has been awesome.

There have certainly been times when moving has felt like a devotion to God.  I pray as I move; sometimes I even imagine Him running beside me, cheering me on.  There have been moments when I've changed my socks and shoes, holding my callused feet in my hands, offering a word of thanks for feet that have worked so hard for so long to support a body that moves differently.  There have been moments of surprise of how well my body can move and will even compensate for hamstrings that are tight.

The truth is: most days are hard.

I always wonder when people say they “Saw me at the activity center.”  What do I actually look like in their eyes? Tangled yet determined I’m sure. (Last week I was passed by a mom walking while pushing a stroller.  “But you were jogging! She encouraged me afterwards.) Sometimes it’s hard not to get mad at every muscle in my body because sometimes I swear that unbeknownst to me, every muscle in my legs convened a committee meeting without my consent and decided not to cooperate; stubbornly rebelling with every step.  Sometimes the reality of cerebral palsy is discouraging.  I want to push harder and faster, but my muscles are tight.  It feels like someone is hitting the breaks

.

More than anything, I realized today that I need a cheering section.

I've been hesitant to write about this goal, because I wasn't sure if I really could take myself seriously, but I realized today as I went around the track that I’d really like to finish what I've started.  I took most of last week off due to my book launch and resulting fatigue.  I wouldn't have gone today if I wouldn't have reached out to a colleague and said, “Just for accountability’s sake, I’m going to tell you right now, I’m going to the track,” and out the door I went.

I began to wonder as I moved around the track, what it would be like if I got over my insecurities and let people know what I was trying to attempt.  July 4^th seems like a long way away today, but I don’t want to give up. 

So, if you feel so inclined, cheer me on.

 

Send me an e-mail, give me a shout out on Facebook, or simply ask me, “How’s it going?”  I’d love to know I have people in my corner, cheering me on.

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The Journey In Has Become the Journey Out: Thoughts on writing my memoir, Walking With Tension

When I started writing my memoir in late 2009/early 2010, I set to work on a laptop purchased in 2002.  It was one that my friend Colleen helped me carry across campus from the computer store to my dorm the first day of college.  It had a floppy disk drive and was the type you "plug in" because, at the time, wireless had yet to emerge.  No matter, I didn't have Internet access at my house anyway.  The battery died back in 2005, so there I sat, chained to my desk, typing away, night after night.

In the beginning, writing was a journey in.

Writing this memoir often involved painful negotiation.  I continually mulled over whether or not I was willing to tell the story of my life. It was an act of slow confession.  There were so many things I felt compelled to express that I never allowed myself to think about fully or had never spoken to anyone aloud.  It was a game of give and take. Little by little, I relented to vulnerability as words formed and appeared on the screen.

There were nights when my eyes were so clouded with tears that I could no longer see.  I would regrettably have to close the laptop early. Hours I had planned to write lay in waste as I nursed my hurt.  My heart had been ripped open too wide to continue.  My story sat within me like undigested food, but slowly, as the words came, writing began to feel like the uncorking of a bottle of wine being poured out on the page.  Gradually, I sat at my desk beholding something that had become richer and deeper with age.

There were many conversations I held with God, and many, many tears.  As I made my final edits, the pain became intense, so I placed a chair near my desk as a reminder of God's constant presence with me. On several occasions, I laid my head down on the chair as if I were placing myself into the lap of God and wept.

Slowly, writing became a journey out.

In 2011, I purchased a MacBook Pro and installed home Internet access. I started blogging for United Cerebral Palsy of Central MN and my personal blog, both called The Walk.

Suddenly I found myself sitting in coffee shops and restaurants, living rooms and summer camp, staring into the faces of people who've been impacted by disability: parents, children, peers.  For the first time in my life, I had something of substance to offer the people looking back at me besides my silence and pain.  Writing had become a healer and had given me a voice.  I started to speak in churches, then branched out to a college campus, and finally to the students at my school.  A reporter from WCCO surprised me this fall, showing up in the middle of class, asking me to tell my story.

My story is finally published and here for all to read.  Today, March 26th, 2014, is the 30th anniversary of my life; the celebration of a story that is still being written.   I'd like to invite you to read about my journey of Walking with Tension, available now on Amazon in paperback and Kindle editions.  

You can find information about my book here: http://jwalkinguphill.blogspot.com/p/blog-page.html

The Kindling of a Flame

Me with my second grade teacher, Georgia Docherty.

Socrates once wrote,  “Education is the kindling of a flame, not the filling of a vessel.”  My second grade teacher, Georgia Docherty, understood this well.  She taught us about authors…every month.  One Saturday, she organized a class field trip so we could meet one: Tomie DePaola.  That was the Christmas season of 1991, but I remember it like it was yesterday.  We went out to eat at McDonalds and I got a mermaid in my Happy Meal from the movie Hook that was in theaters.  We went to Barnes & Noble to see Tomie and then over to the O’Shaughnessy Auditorium on the Campus of St. Thomas to watch Tomie’s play, Merry Christmas Strega Nona.

Sometime during that school year I fell in love with books.  A flame was lit in me and it has not burned out.  

Posing as an author for my second grade career project.

Please enjoy this article written for The Monticello Times by my childhood friend and fellow second grade classmate, Meghan Gutzwiller.  She beautifully writes about the publication of my book, Walking with Tension.

In a Pinewood Elementary School classroom in the early 1990s, second grade teacher Georgia Docherty kindled a spark of passion for books in her student, Jennifer Hill.

The class did author studies on notable children’s authors like Eric Carle, Tomie dePaola and Leo Lionni. They went to meet dePaola and watch a play based on one of his books, read many books by each featured author and wrote their own books, sewing them together so they were bound like ‘real’ books.

These units interested Hill so much that when it came time for the class to do a project on their future careers, she already had her mind made up that she wanted to be an author as well.

Read More….http://monticellotimes.com/2014/03/07/mhs-grad-realizes-dream-of-becoming-an-author/

A Fireside Chat

Dear Readers,

I'm going to take a break for a month from blogging.  I will be back in early March when I'd love to tell you about my book that is coming out called Walking with Tension.  

For now,  please enjoy this little trailer.

Cheers!

Jenny

https://www.youtube.com/watch?v=5GbVIcLFabw

Never Alone Martin

You need to know two things about me to appreciate this story:

1.       Martin Luther King Jr. is one of my heroes.  I did a report on him in second grade during Black History Month and I was sold for life.  Here was a man who saw the injustice that was around him and actually did something about it. He was a man of conviction, a man of faith.  I did extensive research about him in high school and even reconstructed the Lincoln Memorial for my history class.  When I finally climbed its steps 2005, I called my parents.  You’ll never guess where I am….

2.      I, along with many other Minnesotans, suffer from Seasonal Affective Disorder.  Most of the time I’m just moody or tired or glum.  But sometimes it’s uglier than that.  I experience a strangely awful inhuman feeling: withdrawal.  It’s like losing your appetite for human interaction.  You don’t want anyone around.  It’s incredibly lonely and isolating.  Sometimes hopelessness feels like you are trapped in the bottom of a pit. Depression is the darkness of endless night.

I was having one of those depressing moments one morning last January.  I had struggled to get out of bed.  After lecturing myself that, “Sleep doesn’t pay the mortgage,” I pulled on clothes, poured coffee, and headed out the door.  I don’t know how you feel about your car, but my car is a sacred space for me.  It's where I spend seven minutes each morning singing to God on my way to work.  It's where I've prayed some of my grittiest prayers because when you're strapped in, there's nowhere else to go. 

It's also been a symbol of God's faithfulness.  Learning how to drive was a struggle; I was in grad school before I ever traveled on the freeway, but it's been a beautiful area of my life where I have seen improvement.  I've gone places that I never thought I would go on my own.  I have a picture on my dash of myself surrounded by three of my precious friends reminding me that I have people in my corner cheering me on as I journey through life but….

But there I was that morning sad and all alone. I started listening to a CD that a friend had given me.  I had listened to this song several times, but at four minutes in, the singer starts telling a story quietly and I had never bothered to turn up the volume and listen.  I found myself annoyed with the fact I couldn’t hear the words that morning, so I cranked up the volume.  As I drove down the snowy county road I began to hear a story about Martin Luther King Jr. that ministered to my soul; bringing light to my dark places and comfort to my loneliness.

Sometimes I like to imagine that Jesus is sitting next to me in the passenger seat, even holding my hand at the stoplights if I’m having a particularly rough day.   That morning it was like a friend was along for the ride and just wanted to turn up the car stereo so I could be reminded of something true.  I listen to this song often; especially when I need courage on the way to where I’m going.  I unashamedly insert my own name into the lyrics and sing it out loud.

You can listen to it here.  It is called Never Alone Martin (Dr. Martin Luther King Jr.) by Jason Upton from his 2007 album Beautiful People. The whole song is good, but the story starts at the 4 minute mark if you want to skip ahead. I hope you enjoy.

 https://www.youtube.com/watch?v=7CLudrbQcAE

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Man of Sorrows

It was just before Thanksgiving when I found myself sitting in the second row at a funeral.  A good friend of mine lost her brother to cystic fibrosis.  He lived to be 40, which is outstanding for someone living with CF, but still too young to die.  I watched as my friend laid her head on her husband’s shoulder, crying, and in turn, opening her arms wide to comfort nieces and nephews.  The morning was filled with the hope of heaven and the reality of earth.  

I sat there thinking about how this man never married or had children.  Being born with disability or disease often leaves very loving people with naked ring fingers and empty wombs.   It’s sad.  Sometimes it makes a person feel like they are sitting behind glass watching everyone live their happy lives while you sit in the stands choking back tears, faking a smile as you wave to everyone else skating by.   It was haunting for me to identify with the man lying in the coffin.  I sat there at the funeral wondering if 50 years down the road that would be me.

Last Friday, my friend Steve posted this morsel on Facebook:

It took me a few weeks and a few more heavy moments, but eventually, I lay down on my floor and sobbed.  Not the kind where tears gently fall down your face and land on your lips, but the kind where your whole body heaves.  

Who is Jesus in these moments?

Sometimes it’s easier to believe Jesus really only came to earth for his final hours, and in our lives, the thing he must care about the most is the salvation of our souls.

Truly, the redemption of humankind and our salvation from sin and death are paramount.  But it doesn’t negate the fact that Jesus also cares about the mundane:  our earthly disappointment, our day to day pain.

As kids we see images of Jesus surrounded by children, smiling as he rides on a donkey.  As adults we ponder Jesus, who, for the joy set before him endured the cross… Certainly, there had to be many moments where Jesus was giddy, bubbling with joy as he worked to bring healing and redemption to the world.  Performing miracles was like pulling the curtain back giving the world a glimpse of heaven as if turning over the pages in a photo book revealing visions of home.  

So I find it interesting that “happy” is not how Jesus is heralded or remembered in scripture.  Isaiah foretells Jesus as a Man of Sorrows, well acquainted with grief.  Can you imagine it?  It’s as if Jesus was sitting down conversing with Grief, as if they were two old men, swapping stories, nodding their heads, often just sitting together in silence, acknowledging the weight of pain.

In Hebrews, the author writes that while Jesus was on earth, he made petitions to God with loud cries and tears.  Even before Gethsemane, I wonder if Jesus often had wet eyes to show the Father when he went off to pray.  Being that close to humanity had to wonderful, but it also had to be hard because sometimes beauty and suffering exists in the same face.

I imagine Jesus off in the corner, heaving and crying loud.  The disciples looking at each other, shrugging their shoulders and whispering, “He’s doing it again…”

“We’d better leave Him alone.”

____

With the end of the Advent season, it might be helpful to wonder what it was like for Jesus the first time he stretched out his hand and clenched his fist; feeling the limitation and the strength of tendons and ligaments and skin and bone working together in a human body.

It might be helpful to ponder what it like was for Jesus to change his perspective.  No longer looking down on us from above, but staring back into the face of humanity, the creation, seeing us through his own two eyes…. 

What was it like to leave the vastness, comfort, and eternity of heaven to be confined, hurt, and limited?  

All of these things point towards the fact that Jesus knew what it was to become human and dwell with us.  It reminds us that he is with us in our humanity even now.  

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