Thanks John

A few weeks ago, my friend Lisa started a song circle in the building where I live.  Among many other favorites, we sang a John Denver song.  I mentioned that another song of his inspired the name for my old power chair, and that I had written the story of that naming. Since people seemed curious, I'm posting it here.  Happy reading, and thanks John!

                                                     Aye Calypso

          “You need to make friends with your wheelchair,” said Rob.  “It doesn’t limit your freedom.  It gives you the freedom to move.”  Large and bearded, Rob was the pipe smoking, guitar playing chaplain at the university where I was now a sophomore.  As usual he challenged my assumptions, and as usual, I heard him even though I didn’t want to.  A few months later, a rite of passage ideally suited for a 21-year-old student with a disability threw itself across my path:  the need for a new wheelchair.  For the first time in my life, I, not my mother, would tell the vendor what kind of chair I needed.

          “It needs to be low to the ground,” I told him, “because I’m short.  And I want blue upholstery.”  I had no idea why.  For weeks I anticipated its arrival.  At some point, I gave it a name.  When the chair finally came, I sent out birth announcements:

          “BABY BLUE BUGGY HAS ARRIVED!”  And so began my first friendship with a chair.

          Fast forward a number of years.  I’m the chaplain now, working in a large urban medical center where I ride around on an aging three wheeled power scooter that breaks down every other day.  The students and staff in my department listen as I rant and swear through each new ordeal, and haggle with my insurance company over what portion of the cost of a new scooter they will cover.  The basic model won’t do.  I need something built to endure.  I tell my colleagues that will be its name:  Blessed Endurance.  The morning after it arrives, I emerge from our elevator looking like a queen on her throne.  Everyone gathers in a circle around me and starts to sing a song they have written in honor of the occasion:

         

          Blessed Endurance, 

          This scooter is mine;

         O what a joy

          Now I look so fine!

          Racing through hallways

          We turn on a dime;

          Look out O world

          It’s my time to shine!

 

          Blessed Endurance lived up to her name.  She served me for almost a decade, until surgery drastically reduced my upper body stability, and I needed a power chair, not scooter. What would its name be? I wondered.

          In the darkness of a winter’s night, I sat in my apartment listening to John Denver sing on the radio:

Aye Calypso!

The places you’ve been to,

The things that you’ve shown us,

The stories you tell.

 

Aye Calypso!

I sing to your spirit,

The men who have served you so long and so well.

 

Calypso—The ship on which Jacques Cousteau went adventuring across the ocean. . .  Calypso—A chair in which to go adventuring across my world. . .   Calypso was my new chair’s name!

          It’s been almost nine years since she came into my life.  We’ve careened down hallways, peeled rubber around corners, and yelled, “W-E-E-E-DLE!” as we raced in sheer joy.  Her paint is chipped.  Her arm pads are worn.  Her joystick has tape around it.  Like the woman she holds, she has soul.  And I have to say good-bye to her.  In a few days, I’m getting a new chair. . . And I don’t know its name.  And a chair without a name is a collection of steel and rubber; not a companion for the journey.  And in this year I’ve had to part with so much that was part of my soul that sometimes I wonder if my soul still matters.  Everything seems about what’s practical.  I’m grieving this parting like no chair I’ve ever said good-bye to, even as I know this is part of life, and I do need a new chair.  Please God, tell me her name.

          Tonight in a new apartment, in a place I did not choose, I listen again to John Denver sing.  In tribute to my companion, I change the words:

 

Aye Calypso,

The places we’ve been to,

The things that you’ve shown me,

The stories I’ll tell.

 

Aye Calypso,

I sing to your spirit,

The ways you have served me so long and so well.

 

 

--Mary Stainton

 

Remembering Again

It's been two years.  Sometimes it feels like forever ago; sometimes just yesterday.  The best memories I have are of her laughing.  We all inherited her sense of humor, though my brother got the most concentrated dose of that gene.  The picture above was taken at the Lancaster County Art Association, where she gave so much of her time and talent.

Speaking of that talent. . .

"I wish you could take a special trip," she said to me wistfully.   She and my father loved to travel.  My sister got the double dose of that gene.

"The only place I really want to go is New Mexico," I told her.  She had lived there for just a year in her twenties, but the way she talked about it made it seem like decades.  A jar of dirt from that year sat on our kitchen table.  It had been there for as long as I could remember.  I wanted to experience a land which had that kind of impact, so in 1994 she and my father took me to New Mexico.  In their seventies by then, they pushed me in my wheelchair through the rocks and dirt of that hardly accessible terrain.  I saw pueblos and petroglyphs, and breathtaking views like the one Mom painted in this picture.  I was there for two weeks, and it was one of the most spiritual experiences of my life.  Now I have the jar of dirt.

So I sit in silence for a moment this day, missing her laugh and remembering--the gifts she gave and the gift she was to my life. 

Love you forever, Mom.

With Elliot's Eyes

Elliot's eyes grow large as he watches the lift ascend and my chair roll into the van that will take me home.  Again I give thanks for these encounters and how they shape his understanding of who and what is normal in the world.  Then something flips.  Elliot becomes the teacher.   What about 5-year-olds with cerebral palsy today? I wonder.  Do they see with Elliot's eyes?  Can they learn to?  What if a generation of children who have disabilities could see their adaptive equipment as magic; an occasion for wonder?  And what if they never lost that sense of "Wow!"?  And what of me?
 
Of course I'm aware of the things which adaptive equipment makes possible for me.  A wheelchair brings mobility to my  immediate surroundings. Vans with lifts mean I can travel throughout the city.  But I have lost any sense of their magic, if I ever had it .  Except for when the batteries die, I take my power chair for granted.  Paratransit vans evoke anger or at least frustration.  And somewhere inside me lurks an almost primal knowledge that such equipment marks me as different and slow--with a judgment that different and slow are not good things to be.  Can I learn to see with Elliot's eyes?

It is Nicodemus's question:  Can a man enter his mother's womb and be born again?  Can a woman become five?  No.  But maybe. . .   I cannot deny frustration.  I will never love being slow.  Being different is a mixed blessing at best.  But maybe if I also remember Elliot's view of my world, something in that world will change for the better.

The questions linger.  They have no answers.  But I know that in this moment, Elliot and I have taught each other.  We have seen and shaped new possibilities for life.  May we continue to teach.  May we create a new world.  May the seeds of this time be well-nourished, take root, and grow.

The Beauty I Love

The Red Bud tree at my church blooms for about two weeks each year.  For more than twenty years, the sight has stopped me in my tracks.  My friend Nancy planted the tree in memory of her infant daughter.  Nancy's mother, whom I knew as a strong and adventurous woman, is buried beneath its branches.  To sit in awe of its beauty bursting forth would be enough, but the connection to people loved and admired moves me beyond words.

The Sunday after my mother died, I wheeled along the sidewalk lost in memories and grief.  Out of the corner of my eye, I noticed a delicate lavender flower reaching between the rails of an iron fence.  I stopped, placed my hand under the flower, and ran my finger along its petals.  I sat in silence for a long time, whispered "Thank you" to the flower, and left.

 

In a novel I read recently, the central characters decide to look for something beautiful each day.  I suppose that's a good discipline, but I prefer surprises, beauty that arrests me--the soft touch of a delicate flower; the bursting forth of a Red Bud tree.

"Let the beauty we love be what we do," said Rumi.  Or do nothing.  Just love the beauty you love.

An Invocation

 

 

God,

Can we end the journey here—at the parade?

We would so rather follow a Jesus who is popular,

Who does what we expect.

We want someone who is a warrior, God,

A warrior and a magician,
Who gets rid of the Herods and Pilates in our lives,
Who heals our wounds with a word.

That’s who you seem to be on this day.

Can we end the journey here?

But that’s not love.

Love moves with us through the jeers and taunts,
Bearing our wounds and scars.

 By the end of this week we will know—

 Love is who you are.

 Come move with us, God.

From My Wilderness

It's 4:30 PM.  I have managed to keep my chair alive for five and a half hours today.  This is something of a miracle. The battery's been weak for ten days.  Last night I prayed, "Dear God, I know I'm suppose to give up something for Lent, but did it have to be my power chair??!!"

That it didn't have to be is precisely what annoys me.  Once upon a time in a far away land of say, five years ago, I'd call the chair repair people whenever I needed a new battery.  The biggest issue was scheduling a time when they could come to my house and install it. At most, I waited three days.  Now the biggest issue is, depending on who you talk to and when you talk to them,  A. Getting paperwork from the insurance company, or B. Getting paperwork from the doctor.  Since my doctor has done the paperwork and I'm still waiting, whoever told me it  was B is. . .well, the nice word for it is "mistaken". In reality, the biggest issue is me--the fact that I am forced to put much of my life on hold while a bunch of people who've never met me do whatever it is they do-- very slowly.  There are two words for all of this:  absurd and wrong.

I realize none of this makes me unique.  There are thousands of people who deal with bureaucracies every day.  Many of them use power chairs.  I confess that I write this partly to vent, even though I think there is far too much venting on the internet and much of it is less than redemptive.  But I also write in what I hope is a prophetic spirit.  The Hebrew prophets raged against injustice, and there is an injustice here.  When a system prevents marginalized people from getting what they need in a reasonable amount of time, someone needs to say so--loudly.  That is the first step toward change.

My church--to which I did not go last week because of my battery-- is focusing on wilderness during Lent.  I guess this is mine.  I know I join many in the communion of saints who insist  that in the desert of injustice we must make a highway-- Not only for our God, but for all of God's children to get what they need--and get it soon.