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.

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.