Hope and a Door

 In the Christian tradition, last Sunday was the beginning of Advent, the season when we focus on the theme of waiting as we look once again for the birth of the Christ child.  During each of the next four weeks, we light the candles of the Advent wreath, and reflect on the call to wait with particular attitudes.  Last Sunday's call was to wait with hope.

As it happens, last Sunday was also the end of a long personal Advent for me.  I have been a member of my church for 24 years.  For almost that long, I have been asking, prodding, reminding my faith community that our mostly accessible bathroom needs an automatic door.  Last Sunday, my Christmas came early.  The bathroom now has an automatic door!

I share this news for several reasons, one of which is I'm proud of my church.  They clearly love me, and live a commitment to justice for marginalized people.  They live the gospel in so many ways that when I preach, it's hard to discern where they need to be challenged.  It will be even harder now that I can open and close the bathroom door by myself!

Being able to open and close a bathroom door is no small matter in the life of someone with a disability.  Many of us, myself included, need assistance with intimate care.  Getting that means we must often sacrifice something called privacy.  As I celebrated with my congregation, I also issued a challenge I think more able bodied people need to hear:  The next time you feel your privacy threatened or watch it slip away, take a moment to be in solidarity with those of us for whom privacy is of necessity a rare commodity.


I write this in the middle of what has been a very difficult week for this country.  The decisions in the Michael Brown and Eric Garner cases have evoked passionate feelings about  the realities of racism and distrust of the criminal justice system in America.  Solving these issues, creating a climate of fairness and trust, is even harder-- a lot harder-- than getting an automatic door.  But as I ponder the convergence of Advent, a door, and the legacy of racism, I see a symbol of hope in the midst of a far too long Advent for people of color. The door reminds me that hope still lives. Advents can end, justice can come, and trust can happen.   However long it takes, may it be so.

 

 

 

 

Bon Bagailles

My mother grew up in Haiti.  One of her favorite sayings came from there:  "It's been a bon bagaille"-- "a good thing".  The apostle Paul wrote, Whatever is good, lovely, and wonderful, think on these things [My paraphrase].  So, in honor of Paul and my mother, some good things:


The balance shifts gently.  Babies pull me from death to life.  It's Sunday.  I move to the back of the sanctuary.  My eye spots a four- month- old  --brown skin, curly black hair-- determined to stuff a too big fist into his mouth.  One-year-old Leah stands beside her father, then turns and gives me a high five.  I remember that weeks ago I told God I wanted one, and wonder if in this moment She stands incarnate in this child.  Her brother, Elliot, five, shows me his new scooter.  I bought him a toy power wheelchair for his birthday.  He finds mine fascinating, so I decided he needs one he can play with.  If he plays with power chairs and learns that I love him, he will never be afraid of people in wheelchairs or think of us as something other than normal, and that will change the world.  Moments later, Dania, also one, stands by the altar.  Her mother has walked with her around the sanctuary, collecting money in a basket for our local food pantry.  Dania is suppose to place the basket on the floor, but she stops and stares at the pastor, who is her father.  I watch as the realization dawns:  Eyes wide, her face breaks into a grin.  She runs and wraps her arms around his legs.  Of such is the Kingdom.


Today I am going to the Botanic Gardens.  For hours I will smell the wet earth, feel the crisp air on my face, and immerse myself in the sight of turning leaves.  Some maternal force will envelop me, and I'll be at home.  Bon Bagaille, "a good thing," as my mother would say.

A Good Thing, and me in it:

A Part of the Conversation

God,

I feel as if I should publish a blank page.  I can't find--don't want to find--words.  I am drawn over and over again to Paul:  "The Spirit prays for us, with sighs too deep for words."  I feel like I've been praying that way--for my father and mother.

Dad died two weeks ago.  A year and eleven days after Mom.  His death was not tragic.  He was 94, unhappy, and in pain.  In many ways, death was a relief.  He was a private man.  There were few shared moments like there were with Mom.  Still, I miss him.  I long for something I cannot name about him that is gone.  And so I find myself praying without words.  For what, I do not know.

I tell my Bible study group that discipleship has far more to do with how we live on earth than with what happens after we die.  I have little patience for excessive talk about heaven.  Unless you are dying, it seems almost irrelevant.  Yet in this past year, I've thought often of what I hope for my parents, and for me.  I guess I would amend my words to include people who've experienced the death of someone they loved.

More than anything, I want my parents to know how deeply they are loved, and that they are worthy of that love.  I don't think they knew that this side of reality, and more than anything that is what I grieve. 

As for me, I have known for a long time that my world is full of  people who love me, and that is enough.   If I never experience another ounce of healing, what I have experienced is enough.  To love and be loved deeply; to give and receive unconditional love, and to be healed enough to know that love is all that matters. 

I am awed by the poetry of Isaiah's promise: "Those who wait on the  Lord shall renew their strength.  They shall mount up on wings of eagles.  They shall run and not grow weary. They shall walk and not faint."  After a lifetime of fighting the resistance of spasticity in  almost every move I make, I would love to feel that fluidity and grace in my body.  But I would also love to know what it is to truly love, accept, and receive this body as it is--with the spasticity that is cerebral palsy; without the anger and frustration that are so often a part of my response to it. 

I hope that much of heaven is what my life has been--that you and I can continue the conversation we've been having for almost as long as I can remember.  That I can commune with people I love and admire.  I don't care how you answer.  I do care that I learn--I have loved learning--that I get to discover.  For the record, I could care less who really shot John Kennedy.  You can skip the "Well done thou good and faithful servant." I've never been much for fancy religious language, and one of my greatest pleasures has been giving you a hard time.  I figure there are enough properly pious people around, who say the right things in the right language.  I don't need to pretend to be one of them.  So I don't need the "Well done" greeting.  But a high five or a two thumbs up would be nice.  (How is Roger Ebert anyway?  Tell him I said hi.  While you're at it, tell Gene Siskel his theater is one of the best things about living in Chicago.)

Actually I have spent much of this year wondering if there even is an afterlife.  So I suspect that if there is, you will greet me with a mischievous smile and "Told you so!"  I am not good at trusting that you will protect, save, or rescue me--  Much of my life has been about endurance-- But I absolutely trust that you and I are friends.  So whether or not there is an afterlife, I am left with just two words:

Thank you-- For the friendship, for the love and wonderful humor; for the grace and conversation that are the fabric and foundation of my life. 

I hope you surround and fill my parents with the love they never knew, and that they are laughing.

Honoring Mom

A rainy Tuesday afternoon.  Soft light and silence caress me.  I pour the coffee in the mug--French Roast.  Dark, bitter, and warm. This was "our thing".  Two o'clock in the afternoon whenever I was home, we'd sit at the kitchen table, drink coffee--"Mary likes warm coffee ice cream," she would remind herself--and gossip.  A smile spreads across
my face. . .I raise the mug. . . Here's to you, Mom.

Last Thursday was the first anniversary of her death.  My family came to Chicago.  We ate good food, saw a play at the Goodman, and endured a Cubs game-- fitting ways to honor a woman who cherished her family, the arts, and a good time.  She would have relished seeing us together, her three children and son-in-law.   Family who love--and even like--each other.  The world is full of people who don't have that. The fact we do is in large measure because of Mom.

"You get to go through my underwear drawer," she'd say whenever we talked about her death.   A dubious privilege, and one that, alas, my difficulties traveling kept me from enjoying.   Then, "I want to be launched in a rocket, with my hand positioned so that every time I orbit the earth, you'll see me waving to you."

Thankfully, she lived well past my teenage years, that time when I fought so hard to prove myself and assert my independence.  Somewhere along the way she stopped being MY MOTHER and became the person who is also my mother.  It lightened a burden for both of us.

In her last years, I would remember with her:  The sight of a bright red cardinal in the window on a gray, snowy day.   How hard she tried to get me to like books--

("I bet you regret that now!" 

"No.")

And the words she spoke to a moody 13-year-old me:

"You have a responsibility to make this world a better place for your having been here."
They are a guiding force in my life.

The loss of her vision and memory engulfed her in depression, yet she faced her death with crystal clear courage.

"Put a lot of laughter in your life," she told me during what we knew would be our final conversation.  Our last words were a sort of benediction to each other:

"My love will always be with you."
"And mine with you."


 Amen

Beauty

Ok, I will now attempt what amounts to a magic trick for the technologically impaired:  Below are some of my dad's pictures, in all their beauty, and a picture of my mom and dad.  Special thanks to my brother, Bill, for getting them to me.  He really is the magician in the family:

Moments with My Father

I have spent the week thinking of my father, who sleeps for increasingly long periods of time, and is apparently having seizures.  When I called him earlier this week, he did not want to talk.  Yesterday he talked, but his words made no sense.

Some months ago, as his health began yet another decline, I reflected on the gifts which he has brought to my life.  As my family and I continue to search for ways to express our love for him while respecting his needs, I share that reflection, and pray for his peace:

                                                       My Cyrus

          When the Israelites had been in exile for a generation and more, Cyrus the Mede—that Persian, gentile, “not one of us” king—told them they could go home.  And they learned:  that God shows up in amazing places, and can speak through anyone.

          The summer I was 19, I went with my father to a nature preserve, where he spent the day taking pictures.  On the way there, he told his would become reverend daughter that he didn’t believe in God:

          “I go to church because your mom wants me to, I guess.”

Years later, in seminary, I hung the gorgeous, breathtaking pictures he took that day on the walls of my room, and told friends, “My father says he’s an atheist, yet his pictures bear witness to God.  You cannot create something that beautiful without being connected to the holy.”

          At 26, I was jobless, depressed, and living at home.  My father, who had spent most of his life avoiding expressions of intimacy at all costs, looked at me and said, “I know things look pretty bad right now, but I promise you, things will get better.”

          A few years ago, I went home to visit my parents.  We hadn’t seen each other in three years.  They were in their nineties; I was a lot more disabled than I use to be.  Traveling wasn’t easy for any of us.  We knew this would likely be the last time we saw each other.  My mother couldn’t get enough of me.  My father barely said two words.  Not because he was mean or evil, but because he was Dad.  Words were as hard for him as walking was for me.   Yet when I left, I saw him standing at the window—crying.

          From my atheist father--

 

          Who took gorgeous pictures

          Who said just the right words

          Who had tears in his eyes

 

I learned—

 

that God shows up in amazing places, and can speak through anyone.

 

 

 

A Gift

Today is my birthday.  A few hours from now, I will go to a church filled with people who love me, and give thanks in "Joys and Concerns" that on this day 56 years ago, my family had the stupendously good fortune to be introduced to me!  Later, I'll read Psalm 139 and remind myself that I am "fearfully and wonderfully made."  For this one day, I'll ignore the questions that raises about my having been made with cerebral palsy. I'll remember that God celebrates my birth, as God celebrates every birth, which means God spends a lot of time celebrating.  He's just a partying kind of God!  I give thanks--today and every day--that I know my birth is worth celebrating.

My mother died almost a year ago. She was beautiful, wise, and loved--and never really believed she was any of those things.  I hope God has spent the last year healing her.  She needed healing more than I ever have.  The inability to know you are loved is the worst disability I can imagine; far worse than having cp.  My father lies in a nursing home.  The last time I talked to him, he was in pain.  I hope he wasn't in pain today.  Sometimes his words make no sense and all I can hear is fear.  It breaks my heart.

I spent yesterday afternoon at Starbucks, drinking lattes and reading my sister Leslie's recently published book; admiring her words and her persistence in writing them.  The latter is not a trait I possess.

To miss my mother deeply, to grieve for my father's pain, to love and admire my sister, and to know that I am loved--  It's all a gift.  The gift of a lifetime.  Happy Birthday me.

Showing Up and Turning the World Upside Down

My friend Jolin is a pastor and painter in North Carolina.  She and a colleague are co-sponsoring an art exhibit titled Spinning the Parables in the fall.  They want artists from various genres, particularly under represented folks, to help people think about Jesus' parables in new ways. Seeing as how I am a writer from an under represented group and Jolin likes me, she asked me to write a poem.  My first response was panic--  What if I have nothing to say?!  God always laughs when I ask that.  Still. . . .  "Poems either do not succeed," says Mary Oliver, "or they feel as much delivered as created."  Amen. Amen and if God doesn't deliver, poets are sunk.  Amen and I have this abiding fear that Saul's experience will be repeated in my life. 

Saul was king before David came along, and when Saul was king, for most of the time Saul was king, God's spirit rested on Saul and everything was hunky dory. Saul got everything he wanted.  Everyone loved him.  Life was good. . . until that shepherd boy with a sling shot ruined it all.  Who said God doesn't play favorites? God withdrew God's spirit from Saul--Don't ask me why, but he did--and gave it to David.  The only time Saul felt any peace after that was when David played the harp for him.  Music soothes the savage king.

Writing is an odd thing.  I decide what to write about; I choose words.  I change my mind and choose other words.  My name goes at the end of the poem or essay or story.  Good, bad, or somewhere in between, I am responsible for the words on the page.  And yet. . .  And yet if I think too hard, if it's all a rational decision, if I replace words in a sentence the way a mechanic replaces a muffler, it won't work.  If writing doesn't flow from someplace deep within me, it will sound wooden.  If God doesn't show up, I'm sunk.  I'm afraid one of these days God won't show up.

So the other morning I woke up thinking about Jolin's request, and I started to sit up.  Halfway into a sitting position, I noticed my legs were even more spastic than usual:  I couldn't put my foot flat on  the floor.  Talk about panic!  What's going on?  What if this is permanent? I wondered.  And then!  And then these words came from out of nowhere:

Your body speaks through the tension in your bones,
And you are as persistent as the widow before a judge
In following its lead.


I love it when God turns the world upside down!  I love it when God takes the crappy things in our lives, and uses them to make art--Poetry, paintings, music.  Vivid, intense, richly textured paintings from the mire of Van Gogh's depression, Kaethe Kollwitz's arresting charcoal drawings from the horrors of war; clear words in the midst of spasms. . .I love it when God wrests beautiful from ugly!


In case you haven't seen it, here's the poem I sent Jolin:

Power

The world looks at you and says "Weak."

But
Your body speaks through the tension in your bones,
And you are as persistent as the widow before a judge
In following its lead.




How has God wrested beauty from the pain in your life?



 

Venus and Me

 
Well, the verdict is in.  Yesterday, I made my bi-annual appearance before the Judgment Seat:  I got weighed.  I hate scales.  I consider it a gift that most of them are inaccessible.   The only accessible one I know of happens to reside in the office of one of my favorite doctors.  This I consider evidence that God has a twisted sense of humor.  I get weighed every six months, hence the "bi-annual" reference.  I've spent the last two weeks dreading the appointment.  Dreading it, and looking up images of Venus of Willendorf  on Google. There really is a goddess who is obese!  I thought about buying a statue of her--  just a little one to put by my computer.  Something to remind me that my body, which the scale has persuaded me will always be obese, is sacred.  But I'm afraid when it arrives, it will turn out to be three feet, not three inches tall.  I keep imagining the look on the faces of the CNAs and other staff members who enter my apartment every day when they see this nude statue of a woman with very large breasts and a rather prominent vagina. . . .  Then there are the people who will wonder what on earth an ordained minister is doing with a statue of a goddess. . . .  Oy.

I have had weight issues most of my life.  When I was five, a doctor told my mother that the thinner I was the easier it would be for me to walk, and prescribed a strict weight management program .  It included toast without jelly.  Toast without jelly when you're five is just wrong!  Some years ago, I went on a diet that consisted mostly of Lean Cuisine.  I walked the length of a football field almost every day (Damn impressive, if I do say so myself!).  I lost thirty pounds.  I also spent that Thanksgiving on the toilet.  My body couldn't handle the  normal food, let alone the super rich stuff, we ate that day.  Apparently that diet was a bad idea.  Then I tried Weight Watchers on line.  I kept track of food, I exercised, but the nice little line on my progress charting graph stayed flat.  Weight Watchers wasn't set up for someone with a disability:  Their profile page asked for my gender.  It asked if I was pregnant or diabetic.  It did not ask if I had significant mobility limitations.  I got very few points for movements which took a huge amount of energy; no one in their "community" depended on a wheelchair.

I have learned two things from my struggle with weight:

1.  We need a Weight Watchers for people with disabilities, or at least one that takes disabilities into account.  We will not be able to create this unless and until we expand our definition of "normal" to include people who have disabilities.

2.  It's not all about the results.  Results do matter.  Medically, those of us who are obese are more at risk for certain diseases.  That doesn't mean we are bad people.  It doesn't mean we deserve insensitive comments or to be made fun of.  It is just a fact; one of many facts about our bodies.  But it's not all about results.  It is about choosing-- Choosing to recognize our body is sacred, and treating it accordingly.  If I really believe my body is sacred, then I live that belief by filling it with good things and not filling it with harmful things; I exercise, regardless of the results.  I make choices which demonstrate what I believe.  I write this as a reminder to myself as much as to anyone.  If I made perfect choices, I would not dread my appointment with the scale.  But when the scale doesn't produce the results I'd hoped for, I need to remind myself it isn't all about the results. 

As for yesterday's verdict, I weigh the same as I did six months ago.  Stability is good.  Now if I can just find a Venus who has scoliosis. . . .

 

The Tedious Holy

I am an ordained minister.  One of my favorite things to do is to take a familiar Bible story that people think they've heard a thousand times before and breathe new life into it.  I love the challenge.  I love the test of my creativity.  I love discovering new ways in which something that was "back then" and "for those people" speaks to our 21st century lives, and sharing that discovery with others.  It wakes folks up.  It moves them from "Ho hum. . ." "Boring. . ." to "Oh!  I've never heard this before. . ."  It brings this burst of energy that is pure joy.  Another one of my favorite things is when that happens to me--when someone else takes a Bible story I think I've heard before and makes it new again.  The other night, that happened to me.

The church I attend recently hired Patricia to be our associate minister.  Tuesday night, she started a Bible study.  Now, I've been to seminary.  Bible studies usually evoke a sort of "Been there.  Done that" reaction from me.  But this one was called Bad Girls of the Bible.  I had to go!  First up was Hagar, Sarah's servant girl.  Remember the story?  God has promised Abraham and Sarah that they will have tons of children--as many as there are stars in the sky, grains of sand on the beach, or whatever.  It's been a while since God made this promise, of course.  (God seems to like to keep people waiting).  Sarah's attempts to get pregnant have met with absolutely no success.  She and Abraham are about ninety something and they figure maybe God needs a little help fulfilling his promise.  So Sarah tells Abraham to "go into" Hagar, and then gets upset--really upset--when her plan actually works and Hagar gives birth to a son, whom she names Ishmael.  Sarah makes Abraham kick Hagar and Ishmael out into the wilderness where Hagar and her son almost die.  Almost, except that God shows up  in the wilderness and says, "See that over there?  It's water.  Go drink some, and give some to your son."  They drink, and they survive.

We discussed this story in detail, asking what prompted Sarah to act as she did, how we thought Hagar felt, and how we felt about God's actions in the story.  At some point Patricia  said,  "The message of this story is that sometimes just surviving is enough," and I had what Oprah would call an "ah ha" experience.

I'm a well-educated woman.  I come from an upper middle class background, and although I live in a supportive living facility where most people are on public aid, I have a roof over my head and food--most days too much food--in my stomach.  I am hardly "just surviving." And yet--I am also a person with a disability.  I spend a comparatively large portion of my day on so-called "activities of daily living"--bathing, dressing, etc.,  the basics of care and if not surviving then at least maintaining reasonably good health.  I have also often felt less than adequate as a Christian because I have not lived the life of Gandhi or Martin Luther King:  I did not change the world or the country by the time I was 25;  I have not risked my life for justice. I have spent a lot of time doing ordinary things.  When Patricia spoke, I heard God say, "That is enough.  More than enough, it is sacred.  The time you spend taking medicine, putting on your socks, and pulling up your pants is holy.  It is doing what I have called you to do."

The tedious, ordinary, basic things we do are holy.  That is the gospel.  It is very good news.  Next week, we talk about Tamar.  I can't wait!

Hello and What I hope This is About

I suppose I should begin this with an introduction:   My name is Mary.   I'm an almost 56-year-old woman with cerebral palsy.  That makes life in this body at least interesting, often frustrating, and occasionally instructive.

The interesting--For as long as I can remember, my body has required creativity.  As a child, I learned to get up stairs sideways, holding on to handrails, or alternatively, to sit up stairs, using my arms to push myself from one step to another.  (My arms and my mouth get me through life, at least in the physical realm.)  My body and soul are distinctly different (Is that redundant?)--I find the interior, spiritual world much easier, even fun, to move through--yet they mirror each other in that almost nothing about me is conventional,  a fact of which I am proud but I hope not arrogant.

The frustrating--Contrary to stereotypes about people with disabilities, I am an impatient sort.  Actually, I am the most impatient person I know when it comes to my body. It drives me crazy that I can do almost nothing physical  without having to be careful, vigilant, and aware.  Mindfulness is a wonderful thing, but I would very much appreciate some mindless moments which did not have consequences ranging from moderately annoying to disastrous. This is not a particularly PC thing to say, but I don't care.  Having cerebral palsy is not tragic.  It is not something I'm ashamed of, but it's not a picnic either.  I would not choose it given the option.

The instructive--The above paragraph notwithstanding, I have learned some important things in and from this body.  The other night, as I was struggling to address yet another of its demands for attention with some degree of compassion, this thought dropped into my head:

We are put on this earth to learn to love that which is imperfect.
,
That covers a lot of territory--everyone and just about everything I know-- and bodies with disabilities are ideal vessels in which to at least begin to try to learn this, though I'm sure I'll be trying for a lifetime and beyond.  (Similarly, families were created as places for us to learn about unconditional love--Receiving it if we're lucky, but giving it definitely.)

Some closing thoughts, for now:

Blogs are perhaps unavoidably self-absorbed things.  They carry the danger of being narcissistic.  That is not my intention.  If the personal is political, I hope it is also at least in some way helpful to other people.  And I hope it encourages a dialogue between us, whoever the "us" turns out to be.

One of the most oppressive realities I have experienced is the expectation that because I am a person with a disability, I can only talk about having a disability.  I am blessed to say I live a very rich, full,  and nuanced life.  I am interested in many things, as my book collection will attest to; I love and am loved by many people.  It is my hope that this blog will reflect the fullness of who I am and the life I live--a life which, like my body, is interesting, frustrating, and instructive.  I welcome your responses.