Looking Again at Venus

"It's Pahbo' s hair! " I lamented to my sister.  Pahbo was our grandfather--the first of what turned out to be three Robert Leslie Pettigrews in our family ; a man who had spent much of his life growing sisal plants in Haiti.  "Pahbo" was the Haitian word for "bad", and he said it to my sister so much when she was a toddler she assumed it was his name and it stuck. He was Pahbo to his three Pennsylvania born grandchildren throughout our childhoods.  I have inherited his thick head of hair.  It is one of the few visible connections I still  have to a man I adored, and one of the few things I like about my body. 

"I don't want to look sick! " I told a friend later.  I had spent more than enough time fighting the perception that using a wheelchair meant I was sick.  Now I would have to fight it all over again.

Some years ago when I began this blog,

 I wrote about my favorite goddess.  I wanted a statue of Venus of Willendorf, I said, because she was the only deity who was obese and I needed her reminder that my clearly overweight body  was sacred.  So I bought myself a small figurine of her which sits on one of my bookshelves.  The other day I sat staring blankly for several minutes in front of that shelf.  At some point I noticed she wears what looks like a hat on her bald head.   " Maybe she's been through chemotherapy, " I thought.   "And maybe bodies that have been through chemo are sacred too."

The Necklace That I Wear Now.

In her later years, my mother wore a simple necklace, a gold-plated fleur-de-lis through which she tied a black shoe string, every day. Etched on its surface in the tiniest of print is the name Mary King Hilsman Pettigrew, my mother's mother.  When Mom died, I inherited the necklace.  Me, the one person in the family who doesn't like to wear jewelry other than watches. I don't know why I don't like to wear jewelry. For some reason, I have had a lifelong aversion to the feel of  cool chains or pendants on my neck and on my wrists. So my mother's necklace has stayed largely hidden away since her death.

White Protestant that I am, I have also never really understood the attraction of religious medals or icons , or the invocation of one's ancestors.

Two days ago, looking for something else, I found the fleur-de-lis necklace--at the end of several months of never ending chaos and long-festering anger, frustration, and powerlessness because the quality of life where I live has been severely compromised.  This week, after they announced that my apartment needed to be treated for the fifth time for bedbugs , the stress of those months erupted into a full-blown depression , and when I found the necklace, something led me to put it on. I've been wearing it ever since , although I will put it away for safekeeping while they spray tomorrow. Otherwise the careless people who pack up my stuff and and have now done two heat treatments and sprayed my room with god-knows-what chemicals twice may well damage or lose it.

I'm still not sure what I think about religious medals, and neither my mother nor my grandmother were hugely religious.  They were certainly not saints. All I know is that I feel some almost desperate need for the strength, love,  and presence of two strong women who adored me.

Love on the Walls

 

A friend of mine was ordained yesterday.  Last Sunday was the twenty-eighth anniversary of my own ordination.  Pictured above is the letter my mother wrote me two months before the momentous occasion.  It's the kind of letter a daughter dreams of getting from her mother-- full of love and pride. "Number two daughter-- Number three child -- NUMBER ONE PRIESTESS!" it says.  I smile--and cry--every time I read it.


Beside Mom's letter is a quote from Shakespeare which my sister hand painted and gave to me one Christmas. . . 

     Be not afraid; the isle is full of noises, sounds and sweet airs that give delight
     and hurt not.  Sometimes a thousand twangling instruments will hum about mine
     ears; and sometime voices that, if I then had waked after long sleep, will make
     me sleep again; and then, in dreaming, the clouds methought would green and show
     riches ready to drop upon me that, when I waked, I cried to dream again.
                                                             [Caliban, The Tempest]

Leslie's reassurance in a world that often seemed--and seems--perilous to me.

Just above my ordination letter is a framed poster of a woman who looks Indian.  She is holding the sun. Its light creates a prism of color around her.  "Healing Woman" reads the caption.  My friend Margaret gave me the poster for my fiftieth birthday.  Hard to believe that was almost ten years ago.

Looking up from the poster, I see a picture of a fleur-de-lis, the symbol of the home and land in Haiti where my mother spent her childhood.  I painted that picture for her the summer I turned thirteen, during the two weeks I spent with my grandmother.  I can still see my grandmother looking over my shoulder as I painstakingly printed the Haitian words she taught me for "I love you":  "Je Vous Aime".  There is three generations of women's love for each other in that painting.

To my left as I face my mother's letter are two of her paintings of the New Mexico landscape.  "It's the only place I really want to go," I had told her when she expressed a longing for me to travel, so she and my father surprised me with a trip there in 1994.  I remember them pulling me in my wheelchair through barely accessible dirt and rocks to view ancient drawings etched in stone, or to gaze at the beauty of rock formations standing against the wide open clear blue sky.  I remember our joy at sharing that experience together.  I see again what an incredibly gifted artist my mother was.  I feel how much my parents loved me.

Behind me is a picture of late twenty something me sitting on a bench outside the common area of the seminary I went to.  My six million dollar friend Steve Austin took that picture.  Steve, if you happen to read this, you should know I've gotten more compliments on that picture than I have on anything else in my apartment.

To the right is a black and white photograph of an aged man, his body stooped to an almost ninety degree angle, standing on sun-dappled grass framed on either side by trees.  My sister took that picture; of my grandfather walking on the farm he loved.

Somewhere on that wall is a painting of a delicate lavender wild flower sandwiched between two boulders.  The artist was a friend of my mother's.  Mom bought the painting from him, and gave it to me because "It reminds me of you," she said.

There is my mother's water color rendering of a sisal plant, the plant my grandfather grew while they were in Haiti, and a picture of what looks like some deity hovering over an island in the ocean.  "The Goddess watching over you," said Mom as I opened her birthday present.

Last but not least, there is the silver-framed picture of the five of us--my sister, me, my  brother, my mother, and my father, taken on Mom's ninetieth birthday--the last time we were all together.

These are the pictures which surround me every night and greet me every morning. The love which emanates from them cradles me as I sleep and supports me as I move through my day.  And it is that love which my ordination calls me to share with the world.

The Genie is Out of the Bottle

"Bodies of Work ", said the reminder that popped up on my cell phone.  I'd put the event on my calendar weeks before the election--  a night of "disability culture ",  artistic expression by and about people with disabilities.   At the time, it seemed like a good excuse to get out of my apartment.  Now, it was as necessary as oxygen.

 

There were readings from original works-- plays and essays, humorous and reflective.  Good enough, but not particularly memorable.

Some guy walked onto the stage carrying a potted plant.  He threw it on the floor, picked it up, and threw it again, shattering the pot and spilling its contents.   He pulled a roll of masking tape from a plastic bag, fit the pieces of the pot back together like some sort of jigsaw puzzle, and re-potted the plant.  His representation of life with a mental illness.

 

  Definitely memorable.

 

But it's the dancers who made the biggest impression on me.  Three women.  I recognized the first.  She use to live in my building.  Tall and thin, with jet black hair, coffee colored skin, and thick red painted lips.  I thought  of a Frida Kahlo self-portrait.  Her body leaned on a sparkling silver cane.  Carefully she turned toward us, shifted her weight, balanced, and lifted the cane in the air, thrusting it with defiant pride.  Bearing a look which dared anyone to question her, she turned again, cane still held high, and marched around the room.  The second woman followed.  What she did escapes me.  The third, however.  .  .

 

She came in five minutes after the others.  Left crutch, right foot ; right crutch, left foot.  I knew that walk.  The same walk I began learning when I was three years old.  I knew the curve of her back too.  I' d seen it in a picture of me in my twenties standing looking at my mother.  This woman' s skin was dark black though .  Her hot pink shorts stretched tightly around her stomach and thighs.  She wore a flowered bikini top.  I envied her self-assurance.  I would never have been caught dead in that outfit.  Not in my twenties, and certainly not now.  Crutch / foot;  crutch / foot,  she turned, until her back was directly in front of us.  Planting her crutches firmly in front of her body, she leaned all her weight on them.  .  . and wiggled her hot pink butt in our faces. The genie is out,  I thought .  The genie is out of the bottle.  You can refuse to enforce legislation.  You can dilute it 'til it's meaningless.  You can even make fun of the way we move and speak.  But as long as our pride lives deep within our bodies, as long as our pride stirs and moves our bodies, the genie is out of the bottle. No matter how hard you try, no matter what you do, the genie is out of the bottle.   And you can never put it back.

Calling on the Ancestors

My mother was in her early 40's during the Cuban Missile Crisis.  Having three children ages four, five, and almost seven , she piled stacks of National Geographic's onto our basement floor so that if we needed to survive there for any length of time, she would at least be able to educate us. Decades later, she told me that during that time she also tried to teach us to recognize trees by the shapes of their shadows, so that if we were ever imprisoned and unable to look out of a window, the shadow of a tree could help us preserve our sanity. When I was a teenager and some idiot legislators try to dilute the impact of the 1973 Rehabilitation Act, she found me in the bathroom crying."Martian Luther King didn't cry", she said.  "He got to work fighting."

My maternal grandmother was born and raised in Georgia. She did not leave the state until she was in her early 20' s, the year the Navy sent my grandfather to live in Haiti. My grandparents also had three children. My mother was two, my aunt was one, and my uncle, if he was even born yet, was an infant. Left largely to her own devices, my grandmother, who did not complete college, ordered the curriculum with which she educated each of her children so that they successfully passed tests and met state requirements every year until the curriculum ended and they left Haiti in order to enter High School.

My great-grandmother Minnie was a widow.  She was a single parent long before anyone ever acknowledged there were such people. She had three daughters. When her husband died, she renamed her youngest daughter Albert, after him. Once when she saw a bill collector coming down the road to her house, she brushed her hair, smoothed her apron, put a smile on her face, and went to the door to meet him with dignity and grace.

My father's stepmother, Mildred, the woman I knew as Grandma, watched the father she cherished die when he stepped in front of an oncoming car to save the life of his profoundly intellectually disabled wife, my grandmother's mother.  Seventeen-year-old year old Mildred instantly became responsible for raising her two younger siblings, both of whom she eventually put through college. Mildred grew to become a woman who insisted that her grandchildren move through life with class, manners, and decorum. I don't think I fully appreciated that until recently.

Helen Gilchrist, whom we called Jingle, was a close family friend. I don't remember a word she ever said to me.  But I remember her black dresses and pillbox hats; her angular face, her firmly set jaw, the worn wood on the top of her cane, and the white-knuckled death grip with which her hand held it-- a grip I know only too well. I remember the occasional streaks of gray on her artificial leg. Like wrinkles in flesh, they told me she had lived, and endured much. And I remember that she drove a car.  In the early sixties. When people with disabilities didn't do such things. To my four or five year old self, she was an image of strength. Of the strong woman I could become.

Helen Keller was the child I got sick of.  Who people constantly talked about--The  pathetic, inspirational, "handicapped"  child whom Annie Sullivan turned into a human being. The child who "overcame" her disability like I was supposed to overcome mine.  Today I know that she became so much more:  An advocate for people with disabilities.  A suffragette. A radical socialist, and a founding member of the ACLU. I didn't like her then, but I'm claiming her now.

These are the women who have nurtured me. They made me who I am. They survived dark and difficult times.  And because they did, at least one child was able to survive and thrive.  By blood or by circumstance, they are my ancestors. And I am calling on them now--To hold and inspire me; to breathe through and empower me.  So that at least one child alive today can survive and thrive into tomorrow .

In Your Face Donald!

I did it.  It took seventeen days, but I finally did it.  I watched the news.  I haven't been able to do that since the election.  Fifteen hours of Rachel Maddow, ten broadcasts of The PBS Newshour, and an assortment of NBC Nightly News, Meet the Press, and Charlie Rose shows piled up on my DVR before I decided that maybe I could listen to some part of it without recoiling into a paralysis of horror.  So I watched Rachel's interview with Elizabeth Warren and PBS's remembrances of Gwen Ifill.   Who would have thought watching the news could require courage?

I tried to do it a few nights after the election.  Maybe I can tolerate news with a comedy chaser, I thought, or a sort of news / comedy stew.  I turned on The Daily Show.  Sitting beside Trevor Noah was a female comedian.  She did her comedy bit, then referred to one of the last lines of Hillary Clinton's concession speech, the one where Clinton exhorted women and girls to never forget they were strong, beautiful, and capable of doing anything.  "The fact that we have to be reminded of that now. . ." said the woman on The Daily Show, bursting into tears.  The next segment included a Muslim staff member, who told his jokes, and then talked about his mother.  "She's out of the country visiting my grandmother," he said.  "She called me the other day wondering if she'll be able to get back into this country when she's scheduled to return in February, and I couldn't tell her, 'Yes, of course.'"  He too burst into tears.  Later I watched part of Stephen Colbert.  I felt some relief as he showed a picture of Trump sitting calmly beside President Obama in the White House.  That in itself was disturbing--that a picture of Trump appearing -- even appearing-- to be civil is now all it takes to make me feel relieved.  Then the image of Trump making fun of a disabled reporter flashed through my mind, and any relief I had felt vanished.

Years ago, a friend painted my portrait.  Before she began, I asked her not to show my "deformed" left hand. 
.
Months ago, another friend interviewed me about having a disability for a project he was working on.  His friend who is a photographer took several pictures of me to go with the recording  of  our conversation.  I hated most of them.  It was all too clear that I have cerebral palsy and very bad scoliosis.  I chose a head shot precisely because it hid my disability, even though I had just talked--very openly --about that disability.  I'm not proud that I am so embarrassed about my body.  My feelings defy everything I try to teach others about how they should treat me; about how they should treat anyone who has a disability.  But it's true.  I am embarrassed about my body.  Even while it is also true that I don't believe I should be, and while I also know at some very real level that different is not ugly or bad.

Decades ago, someone else with a disability called me a "crip".  "I can do that," he said, "because I'm a crip too."  I practically bit his head off.  "No, you can't!" I told him.  "I don't care who you are.  Don't ever call me that.  My name is Mary."

I'm rethinking all of that now.  Or maybe the better word is re-feeling it. "Cripple" or "crip" is still my least favorite word in the English language, and it's still not ok for anyone, disabled or not, to call me that.   Anyone that is, except possibly. . .  me.

In my effort to steel my soul against the poison which spewed from Donald Trump about people like me, I re-read an essay by one of my favorite authors, Nancy Mairs.  Mairs is a woman of faith who thinks deeply.  She use to write a column I loved for The Christian Century.  She is a feminist who writes in support of other women writers.  She has a wicked sense of humor.  She is also a woman with a disability.  She has multiple sclerosis, and she writes about that with humor, grace, and gut-level honesty.  One of her best known essays is titled On Being a Cripple, in which she writes, "People--crippled or not--wince at the word 'cripple'. . . .  Perhaps I want them to wince. . . . As a cripple, I swagger."

In the spirit of Nancy Mairs, so help me God, one day I will plant my decidedly S-shaped body in my power chair, floor it until I am parked directly, dangerously, and unavoidably in front of Donald Trump's toes, raise my fist-curled , "deformed" hand into the air, and shout at the top of my lungs:

IN YOUR FACE DONALD!

CRIPPLE???     DAMN RIGHT!     DEAL WITH IT!

Cardinals Come in the Winter

A very nice woman came into my life recently.  She helped me de-clutter my apartment and reorganize the stuff I chose to keep.  A professional, she surveyed my space at our first meeting and quickly assessed what was important to me.  Among my most important possessions, she judged correctly, were things my mother gave me.  On the day of her last visit, the woman who was helping me unearthed a handmade wooden cardinal from a box in the back of my closet, and held it out to me. 
"My mother gave that to me," I said, indicating I wanted to keep it.
"Ok, that's beginning to be not enough reason to keep things, " she replied, adding, "We're running out of room."
It was an uncharacteristic response, and it felt like a punch in the stomach.  "You can put it on the top shelf there," I insisted.  She scanned the shelf I pointed to, noting the things it already contained.
"That doesn't work for me," she responded.
"It works for me," I said.
Later that night, I thought about why that wooden cardinal is so important to me.

Outside the kitchen window of the house where I grew up, my mother hung a bird feeder every winter.  She faithfully kept it filled so she could watch the birds come and go from its perch.  One afternoon as I sat at the kitchen table, I happened to glance out the window.   I was awestruck.  There at the bird feeder, in stark contrast to the gray sky and snow covered ground, was a brilliant red cardinal.  I shared my sense of wonder with my mother.  Neither of us mentioned that moment again.  The following Christmas, which was about a year later, I looked at my very full stocking as I came downstairs.  Pushing its way out of the top of the knitted material was a handmade wooden red cardinal.  My mother said not a word, but I knew--It was a bond between us forever.

This was suppose to be a reflection on the stories we miss--on the clues we fail to pick up and the stories we never hear because we are tired or harassed or too preoccupied to listen.  It would have been good to think about that.  But this past week has changed the contours of my mind in huge ways, as it has changed the contours of so much else in the world.  Now this is just about something I learned from my mother:  Cardinals come in the winter.  I need to spread the seeds which will eventually entice them to come.

Kingdom Moments-- Being Seen

It was a kingdom moment people!  Another kingdom moment!  Lying in bed watching the first episode of Speechless, the new ABC comedy which centers around the life of. . .wait for it. . . a person with a disability!   I didn't know what to expect when I heard about its impending debut.  Actually, what I expected was some able-bodied person pretending to have a disability, and lots of stupid jokes which fed stereotypes.  I've learned to set the bar low when it comes to media's depiction of people like me.

My mouth dropped open the  minute I saw Micah Fowler's character, JJ, as he drove onto the lift of his family's specially equipped van in his power chair.  This was no "acceptable", virtually able bodied crip, and there was my chair on TV!   Not in some sappy news story about some trauma victim going through rehab, but in a show about a teenager who also happens to have a disability simply living his--and much of my--life!  What a concept!  I looked again at the guy in the chair and thought, My God!  I think he actually has a disability! (He does.  I looked it up.)  And I think it's cp!! (It is.  I looked that up too.)  Do you know how radical that is?--that they hired a real live person with a disability to play a person with a disability??!!  Activists have been fighting for years to get Hollywood to do that.  Again, what a concept! 

And then. . . And then. . . And then. . .!!  JJ and his mother confront some apparently able bodied woman using a handicapped parking space--another vignette from my life-- and as JJ, who cannot speak, gestures toward her with his thumb, his mother translates, "That's the finger."  Now I know, it's not normally a very Christian let alone ministerial thing to celebrate someone giving someone the finger, but when you've heard the message over and over for most of your life that because the world has to put up with you and endure your disability you have to be angelic in every other way, seeing a positive portrayal  of someone with a disability giving someone the finger is liberating. ("Positive " meaning this is not some newly disabled person who supposedly needs to "adjust" to his disability and not be angry anymore).  Trust me, it really is a kingdom moment, a moment in space and time when heaven meets earth.  Not heaven as in a place where I'm suddenly "cured" of cerebral palsy, but heaven as in a moment when my world is seen from my perspective, and that perspective is validated; where I am / we are treated with dignity, where there is humor and anger, and that anger is seen  as a mark of strength, not something we should "get over". For thirty minutes, I watched the complexity of life with and feelings about having a disability acknowledged.  For thirty minutes, I saw my life, my self,  defined as  a legitimate part of that wide and diverse spectrum called normal.  "YES!!" I shouted several times, halfway between tears and laughter, pumping my fist in the air. And when JJ's mother got pissed off because the ramp her son was suppose to use was the same ramp used for the garbage; when she answered that all-too-real expectation with the demonstration, "This is garbage [lifting  a piece of trash from a dumpster]. . . This is a person [pointing to one of the people around her]. . . My son is not garbage," I really did cry.

There must be something in the air.   Because there was another moment, this past summer:



When Anastasia Somoza began her speech to the Democratic National Convention, I wasn't watching.  Only after my sister called did I turn on the TV.  And then, I stared at her.  I took her in:   An attractive young woman.  The chair she sat in, the stiffness of her body; the tension in her voice and the pattern of her pauses for breath,  they were all  familiar marks of cerebral palsy.  "Hillary Clinton sees me," she said.  A simple sentence, yet one that conveyed some awe inspiring realities:  The reality of being seen; not hidden, as so many people with disabilities before her had been hidden --behind closed doors in homes and institutions.  The reality of being seen as who she was-- Not some poor, pitiful creature, but a strong, capable, beautiful young woman--who was all those things with her clearly visible disability; not because she looked like she didn't have one.  


I might have dismissed her presence as mere tokenism, the requisite presence of a person with a disability to strengthen Clinton's credentials as a progressive.  Politics being what it is, there was undoubtedly some element of that.  But in her speech Somoza said she met Hillary Clinton when she was nine and Clinton was First Lady.  The two of them have stayed in contact since than, and Clinton has encouraged Anastasia's professional development. Two other people with disabilities spoke at the convention, and indicated Clinton had also been in contact with and advocated for them over many years.  Then there was this story during the presentation of Clinton's biography--At some point before she was anybody famous, she encountered a person with a disability who had been denied access to an education.  Clinton's response was not, "Oh you poor dear!".  It was advocacy.  She worked through legal  channels to help insure that not only the person she encountered but other people with disabilities could get the education we deserve.  All of this--the years of maintaining contact and the long-term commitment to advocacy--suggested to me that whatever else was going on here, whatever else explained the visibility of people with disabilities at a national convention, it was more than mere tokenism.  And to witness it, to witness the affirmation on this stage that we are not objects of charity but people who have rights; to witness the affirmation of our strength and capabilities  in a context where I had never seen that affirmation before, was breathtaking.  It made me feel seen.

I am significantly older than Anastasia Somoza and Micah Fowler.  Somewhere in my years of growing up, I got the message that one of the primary purposes of all the therapy I went through was to make me look "normal," and  normal meant not having a disability.  Because the more normal I looked, the more society would accept me.  The less disabled I looked, the more opportunities I would have.  It is difficult to describe the impact of seeing people with bodies like mine affirmed not only by a segment of the disability community, but in  the national media.  How do you describe the impact of being seen?  I can't even say that those moments have had concrete results.  They have not minimized the literal pain and physical struggle of living with an aging body which has cerebral palsy.  They haven't lessened the frustration or made me fall in love with my body.  But I know that in some real if ineffable way, those moments changed me.  Because I saw myself in a place I had never seen myself before, being depicted in a way the media has never depicted people like me before.  And being seen is profoundly healing, even if you can't exactly say how.

To Life! --Especially Mine

"She gave me life and I'm hell on wheels!"

I read that somewhere in college.  I have no idea who said it but. . .

SHE DID and I AM and THANKS BE TO GOD for every single one of the people who have made this an amazing, love-filled and joyful journey !

[I would have added "challenging", but with all due respect, I could have done without one or two of those!]

 

 

My First Priest

             

 

When I was five, I began to live at a rehab center.  My parents sent me there, because the best doctor in the country for the treatment of my disability told them to, so I could learn basic life skills—skills like walking and dressing myself; skills that come naturally to kids, unless they have cerebral palsy.  Physically, it was the best.   Taught me everything I know.   Emotionally, it was hell.  Felt like complete separation from love, from any sense that I was special, that I mattered.  Except in the most generic sense.  As in, If we don’t keep her healthy, there will be hell to pay. We will get in trouble.  I’m not even sure they would have.  It was 1963.  There was less oversight of such places than there is now.  Who cared what happened to a bunch of crippled kids?  I stayed there for five years, only seeing my family every 3 months for two weeks.  The experience remains my definition of hell to this day.

 

Into this pitch black abyss, God dropped 3 things:  Chocolate pudding, rubber animals, and an Episcopal priest.  Well, the first two of those things didn’t really drop in.  They sort of came with me—The love of chocolate pudding if not the actual item, and my collection of rubber animals.  I put them in the very large pockets which the grandmother who adored me sewed to the countless big buttoned dresses she made for me.  Big buttons specifically for hands which had not yet developed fine motor coordination.  Big pockets specifically for my rubber animals—So they could accompany me while my hands gripped two crutches and I walked through the halls.  But the priest?  He did drop in.  One Saturday a month.

 

Some staff member took Babby, David, and me to an empty classroom where we met with him.  Babby was a girl my age.  David was a teenager. He had been confirmed. The priest gave him a wafer.  Babby and I hadn’t been confirmed, but the priest gave us a wafer too.  I knew he was breaking the rules, and that made me smile.  Once, the priest told me that anyone named Mary was named after the mother of Jesus.  I thought I was hot stuff after that.  Not much made me feel like hot stuff back then.

 

The priest is probably dead now, but I need to write him a letter.

 

 

Dear Mr. priest,

 

That five-year-old girl you gave a wafer to grew up to become a priest herself, although the denomination she chose doesn’t call ordained people that.  When she went to college, she learned that Jesus cared especially about “marginalized” people; that God had a “preferential option for the oppressed.”  Some of the books she read in seminary said that too.  And now the people where she goes to church remind her of that every week.  But you were the first person who showed her that.  Because you gave her a wafer.

 

She teaches a Bible study at the place where she lives now.  Sometimes she wonders if it makes any difference.  There seems so little she can do to make the people feel loved; like they matter. 

 

I wonder if you felt that way—when you left those sad faces—on all those Saturdays.

 

And on that Sunday afternoon in June of 1989, I hope you were part of the congregation.  I hope Jesus gave you a front row seat.  I hope he leaned over and whispered in your ear,

 

“Remember when she was five and you gave her a wafer? 

 This day began at that moment.”

 

An Embarrassment of Riches

Paratransit screwed with me again.  It seems to be what they do best.  Usually, that means they pick me up at least an hour late.  But I can't be more than five minutes late getting to them, otherwise they'll leave me.  A month or so ago, they were 2 hours late.  When I called to find out what was going on, the phone rang for 45 minutes before anyone even answered.  It does no good to complain to the powers that be.  They just give you excuses.  This year, I'm up for recertification.  Could someone please tell me why an almost 58-year-old woman with a congenital permanent disability and assorted other significant limitations that have come with aging needs to be recertified as disabled enough to need paratransit?  Do they think that riding around in their vans for hours is so much fun I would use them if I didn't have to?  And yet, I'm terrified they won't recertify me.  Because if they don't, I have no other way to get to church, to doctors, or anywhere else in this city.  That they have so much power over my life drives me crazy. Today they found another way to screw with me.  When I called for a ride to church tomorrow and told them I needed to be there at 10:00, they told me the latest available pick-up time was 7:45.  "I'll call back later," I said.  When I called back later, they said the latest available time was 7:26.  "I'll call back later," I said again.  I didn't call back later.  At least, not for the same ride.  Remembering that I recently went to an evening prayer service at an Episcopal church a lot closer to my house, I called for a ride to that church-- and got a pick-up time at a reasonably sane hour.

I grew up in the Episcopal church.  As a teenager, it bored me.  I don't talk to God this way, I said to myself one Sunday when I was thirteen.  The words from The Book of Common Prayer came out in a monotone-- from me, from the congregation, from the priest.  We said the same prayers every week.  All the "thees" and "thous" seemed pretentious.  As a young adult, I chose to join the Christian Church (Disciples of Christ).  Their liturgy was more free form.  I could write my own prayers.  I still love that about "my church,"  the church which has loved me long and best, long and best enough that it is the church through which I decided to become ordained.  I consider it my home. Last week, I wrote and delivered the Call to Worship at my home congregation.  I wouldn't trade that opportunity for anything.

But lately I also find myself drawn to the Episcopal Church.  I've started reciting its Daily Office.  I like the rhythm of repetition; of prayer throughout the day.  I like discovering that imperfect [read "sexist"] language can still nurture me. If that's true, maybe I really can nurture other people without being perfect.   It's also kind of restful to recite words without thinking about them so much.  I wonder how that will shape me?  What will happen when I simply allow words to sink into me, when they start running through my head involuntarily throughout the day ?

I'm not giving up the church I chose.  I still love the congregation and denomination that ordained me.     And I love the people I've spent most of my Sundays with for the last 25 years.  I'll be there when paratransit gives me normal if not reasonable options (and whenever I get to lead worship!).  But sometimes when paratreansit screws with you, it's nice to remember you have options.  While much of my life includes hardship and restriction, when it comes to being fed through the Christian tradition, I am blessed with an embarrassment of riches.  Today, I need to remember that.
                             

Breaking the Rules

I'm having a crappy day.  It started when I couldn't sleep last night.  I was wide awake at 2:30 AM.  Usually that means I drank way too much coffee the day before, but I haven't been drinking coffee.  At all.  Well, almost at all.  For three weeks.  Anyone who knows me knows this is an apocalyptic event.  Coffee ranks second only to books in terms of my loves.  Or rather, addictions.  My stomach's been upset for three weeks .  Nothing helps much and coffee aggravates it, so no coffee.  Tomorrow I get to have an endoscopy to see if I have an ulcer. Joy.  I thought I was only a little stressed about that, nothing out of proportion, but last night suggests otherwise maybe.  It didn't help that I kept thinking, I have to get to sleep.  I have to get to sleep.  This is the best way I know to ensure that I don't sleep.  I wanted to go to church today.  I haven't been for a while because going means I have to ride around in the stupid paratransit van which has no discernible shock absorbers for about 2 hours (The trip should take 25 minutes, but it's a "shared ride" system and lots of people go to church on Sunday), and that upsets my stomach.  But I wanted to go today because I needed worship, needed to be fed, needed to be with people who've known and loved me for 25 years.  And it beat staying home and thinking about the endoscopy.  Going to church also means I have to get up at 5:30 in the morning.   When you're wide awake at 2:30, that seems like a very bad idea, so I didn't go.

The CNA who eventually came to help me get up and dressed was new.  Every time I started to transfer from my bed to my chair, she asked me questions.  I tried to explain that I couldn't answer her right now; I really needed to focus on what I was doing, but she wouldn't let me finish a sentence. When I started to ask her to call another CNA to assist her, to walk her through the process of assisting me, she took it as an affront to her credentials.  "I've been a CNA for nineteen years, " she said.  "I know what I'm doing."  She did call, but she also left shortly after the other CNA arrived.  I broke down in tears.  Couldn't stop crying.  The last time I cried this much was when my mother died, three years ago, I thought.  This was out of proportion. Maybe it was the combination-- the endoscopy, not going to church, the new CNA.  Maybe it was also that I have a rule:  If you have a similar problem with three different people, the problem is probably you, not them.  I don't complain a lot about CNA's, but recently I've complained about two.  I don't want to complain about a third, but this seems like more than a personality clash or the likelihood that she and I will never be best friends, and for the life of me I can't figure out how the problem in this case is me.

When I was finally dressed and in my chair, I had a little talk with Jesus.  In which I think he said, "Maybe you need to break the rules."  So I will go and complain about the CNA on Monday--or Tuesday, after the endoscopy.  And maybe I will break another rule--the one that says I don't go to church on three hours or less of sleep.   So for all you church people who read this, if  I show up next week looking like a zombie, you'll know why.  Please be kind.

Deliver Us

This is becoming far too routine, this jolt of anxiety which awakens me at 3 AM and renders my body unable to return to sleep.  There are numerous causes.  Some are personal, connected to my various physical vulnerabilities, or to ruminations over my failures of the previous day--the ways in which I have sinned by what I have "done and left undone" as the Book of Common Prayer puts it.  But mostly my mind swings between events like Brussels and Donald Trump.

Terrorist attacks now happen so often we have a template for them:  Insert name of city here, images of carnage and traumatized people there;  eyewitness accounts here, investigation updates there.  It seems only a matter of time before it is this country again.  And the terrorists will watch the agony with glee-- again. Will it be my city?  Will it be me?  And I am absolutely powerless to stop it.  All I can do is pray.  Which, God forgive me, feels second only to being able to do nothing.

"So. . . Does God embrace Donald Trump?" my sister asked after reading my last blog post.   It's a good question.  A very good question.  That God loves Donald Trump, I know.  But embrace him?  I cannot imagine.  Perhaps this speaks more of a failure of love and imagination on my part than it does about God, but while love may be unconditional, it seems to me embracing presupposes genuine sorrow and at the very least a sincere desire to repent; to turn around and change direction.  Even the prodigal son did that much.  I see nothing humble or penitential in Donald Trump.  What I see is an empty shell of a man utterly devoid of a core.  What I hear is God wailing in agony, "What has happened to my son?!"  Before God embraces him, I think God will put God's hands on Trump's shoulders and demand to be heard.  God will insist on an honest conversation which leads to confession.  And maybe repentance, if it is ever possible for Trump to turn around.

As it is, I think Trump has made himself a vessel for evil.  Evil is what Trump and the Brussels (and Paris, and 9/11) terrorists have in common.  I do not say that lightly. Evil is more than garden variety sin. Sin is what happens when ordinary people who do the best they can to care for and about themselves and other beings make mistakes; when well intentioned people make bad choices in difficult moments.  Evil is something else altogether.  It carries an air of deliberate malice.  It attempts to bring about the harm of another.  It enjoys watching others suffer.  New York Times columnist David Brooks describes Trump as someone who cares only about himself.  Commentator Rachel Maddow suggests Trump intentionally incites violence at his rallies.  If Brooks and Maddow are right, surely what they describe are elements of evil.  Ultimate diagnosis of evil is God's prerogative alone.   Yet we are called to do our best to discern it when it appears.  And respond somehow.

I'm not sure how.  Nothing I can think of seems anywhere near enough.  But a wise person once said, "All that is necessary for evil to triumph is that good [people] do nothing."  This post is my something.  My way of bearing witness and being counted, of providing concrete evidence that I am against this monstrous thing which Trump has unleashed among and within us.  This and the prayer, "Deliver us from evil."  In the hope that that prayer is far more than second only to doing nothing.

From This Place Called Lent

O God,

The arrogant racist bully who's running for the White House
says things we have thought more often than we'd like to admit.

Ordinary moments erupt suddenly into conflict,
and we blurt out things we would otherwise choose not to say.

Or we are silent when we should speak.

We have the best of intentions,
and we fail you miserably.

Yet you come to us
with open hands and a smile on your face.

What kind of a fool are you
that you embrace us again and again and again,
and give us another chance
one more time?

Tensions I Live With

A friend who reads this blog challenged me the other day:  "What would happen if you wrote something less structured--something that didn't make it seem like you've got it all together?"  I almost spat out the water I was drinking.  Me?  Have it all together?  Hardly!  I often wonder how people would respond if they could hear the prayers I think but do not say; the ones I keep between me and God.  There are probably a few I would keep from God if I could!  How many times have I bitten my tongue to keep from telling a caregiver or paratransit driver just how angry I am with them or exactly what I think of them?  And I do this not because I am particularly virtuous or saintly, but because I need them.  Because they hold my life, or at least a substantial piece of the quality of my life, in their hands.  And if they decide they do not like me, they can walk or drive away.  They can leave me half dressed or make the time they spend helping me get dressed miserable.  They can make it impossible for me to get somewhere I need or want to go, or make the trip to my destination even more of an endurance contest than it usually is.  Then there are the things I say to my body in the countless moments when it doesn't do something I want it to or move as fast as I want it to, words I say despite almost 58 years that tell me my expectations are beyond unrealistic and I should be use to this by now; despite all the spiritual people I've heard or read who insist our bodies are wonderful and we should love them.  None of whom have disabilities, incidentally.  I've tried and failed to do that.  Have it all together?  No.  Absolutely, unequivocally, no.

My friend would probably tell me I can stop there; that it's ok to write something that doesn't necessarily have a point.  But his suggestion makes me uncomfortable for several reasons.  I know there is value in the simple expression of feelings.  I know that dishonest writing, writing that pretends I am something other than human, is bad writing.  I also know that writing is a craft.  A craft by definition is something you attempt to shape consciously.  The only exception I know to this rule is journal writing, and while journal writing may be part of the crafting process, it is not an end in itself--at least not for anything I'm willing to share publicly.

That's the other tension I live with--the tension between the importance of being honest, even and perhaps especially about the stuff that makes it clear I am less than wonderful, and my right to--my need for--privacy.  Every artist, every human being, has that need. The fact that I have a disability makes it even more important that I recognize and honor it.  For most of my life, I have needed help with intimate things--bathing, dressing, even toileting.  The older I get, the more help I need with those things.  Able-bodied people do them privately.  I don't have that luxury.  If I try to do them by myself, they either won't get done or I will put my health at risk. One of the few places I can choose to be private is in my internal world, the world of what I think and how I feel.  As important as it is that I write honestly, as important as honesty is to my spiritual life, it is vitally important that I allow myself to keep some things private.  So while I will choose to share some parts of me I'm less than proud of, there are "not together" parts I will not share.

I'm not sure what the point of this reflection is, particularly for people who don't consider themselves artists or don't have a disability.  Which is why even though I think my friend is mostly wrong, I hope he's at least partially right.  And maybe sometimes the point you're making is hidden.  Or maybe sometimes the best you can do is hope that your readers will discover their own point.

Milagritos

Every time I'm in pain, I think about ashes.  I moved funny yesterday--twisted something, or leaned too much to one side.  So every couple of minutes a spasm of pain grips me.  It will go away in time, I think.  These things usually do.  For now, this is a "Just be" day.  So said the voice I know as the maternal God within me.  No expectations.  No need to accomplish anything.  Just breathe.  Yell when the pain hits.  Curse God, the world, and your body when you need to.  Surely this permission is grace. (Years ago, I was hospitalized for a procedure which caused excruciating pain.  My sister, who at the time was an agnostic, leaned over my bed and whispered, "Say anything to God that you need to." It remains the single best moment of "pastoral care" I have ever experienced.)  I'm surprised I'm writing, since it usually qualifies as an accomplishment when I do.  But this came unbidden, in the midst of a spasm.  I've learned to pay attention to such visitations, though they don't usually come with physical pain.  If anything, pain blocks them.  Perhaps this is a "milagrito."  Today, a package arrived in the mail.  From my sister, the pastoral care whisperer mentioned above--Two charms and a bright orange box with a flower painted on it. She bought them in Mexico.  "These are 'milagritos', " she wrote on a card.  Little miracles. I'm suppose to put them around an altar. I don't have an altar, but perhaps grace means I don't need one.  I got a milagrito anyway.  I'm writing while I'm in pain.

Physical pain brings me down to basics.  All my lofty thoughts and promises, complicated theologies, vanish.  I am plunged to my animal nature; connected to what I have in common with the rest of the created world--with plants and animals, insects and trees.  It's not a bad thing--to be reminded, once in a while.  We all seek relief from pain, and a part of us anyway will one day be ashes.

When I asked my Bible study group what they wanted to talk about this week, they quoted the verse, "From dust you came.  To dust you shall return." I don't want to remember that my body will be ashes.  I don't want to think about the fact that I will die.  I've thought of that more than enough since my mother died. But to be brought down low is not a bad thing.  To feel my companionship with animals and trees.  To think of them as friends; to imagine that they empathize, to feel a pull to empathize more with them. . .How would that change the way I live?  What gift would that bring to my world?  It might at least make me feel less alone in pain.  Small as that seems, it would be a gift.  It might even be a milagrito, a gift of grace.

 

Looking Toward Lent

"The Spirit of the Lord is upon me,
because he has anointed me
to bring good news to the poor.
He has sent me to proclaim release to the captives
and recovery of sight to the blind,
to let the oppressed go free,
to proclaim the year of the Lord's favor."

                                            [Jesus, in Luke 4:16-19, reading from Isaiah 61:1-2]

Dear God,

As I prepare for Lent, let me first say thank you--
for anointing me, at my ordination, to proclaim release, forgiveness, and your favor
to the sons and daughters whom you so love.

And let me apologize--
for all the times I have failed to proclaim, and especially to live, that good news.
There have been far too many.

I am anointed and blind,
anointed and broken,
anointed and captive,
in so many ways.

I need to hear
the good news I proclaim.

Lord, I live
among so much brokenness;
among people who have been
forgotten and betrayed,
who are hurting and angry,
who feel as if
they are imprisoned.

And they too
have been anointed.
They proclaim good news,
They forgive and release,
They live as your flawed and loving
daughters and sons.


Enfold us God,
for we are bound together--
needed and needing,
anointed and flawed,
healing and broken
in this your world.
                                  

Dropping Another Stone

Yesterday was a successful day.  I successfully avoided the two things I was suppose to do: exercising and writing.  Instead, I watched the movie, He Named Me Malala.  It's the story of the youngest Nobel Peace Prize winner, who openly defied the Taliban's policy against educating girls.  They shot her in the head.  She almost died. 

For most of my life, I've admired Martin Luther King, a man who did die for what he believed in.  As a Christian, I follow one who suffered an agonizing death because he could not stop challenging injustice and living a life which proclaimed, in word and deed, the inestimable value of those whom society  tried its best to pretend did not exist, or at the very least did not matter.  That same man declared that the greatest love any person could have was to lay down one's  life for one's friend.  He was very clear that everyone was God's, and therefore his, friend.  So if I follow Christ, I'm suppose to be willing to die for what I believe in; for any and all of God's children.  Just how willing am I ?

What is it that makes someone able to die for what they believe in?  What is it that made Martin Luther King able to march through Montgomery, through Birmingham, through Memphis, knowing only too well that those steps could cost him his life?  God?  But his God is my God.  God is just as present with me as God was with Martin Luther King, and. . .King lived the life of an early to mid-twentieth century Black man.  In far too many ways, it was a brutal, dehumanizing life.  King also had the opportunity to think deeply about the meaning and cost of discipleship.  If those realities to some degree explain a man's willingness to face death, what on earth explains the willingness of a child, of a teenager, of Malala?  Is whatever explains that in me?
 
How willing am I to lay down my life?  Not very.  Do I have what Malala has?  No.  Years ago, I participated with a disability rights group in a protest.  My biggest worry was that I would get arrested, so I did my best to make damn sure I didn't.  When a friend who was willing to get arrested asked me to guard the door he was blocking while he went to the restroom, I did as he asked, but I was scared to death.  If it was that hard for me to risk arrest, I doubt I would risk my life.  And that's the problem with admiring Martin Luther King and Malala, let alone with trying to live as a disciple of Christ: I often feel like I failed.

Martin Luther King led a bus boycott when he was twenty-five.  When I was twenty-five, I graduated from college.  It pales by comparison.  And although I know the comparison is unfair, I still do it .   Every time I do it I wonder, What have I done with my life?  When I was Malala's age, I was an American teenager absorbed in adolescent angst.  It would never have occurred to me to risk a huge sacrifice for the sake of other people.  Is that ok?  If I admire and try to follow extraordinary people, is it ok that I am in so many ways ordinary?

Today was also a successful day, more or less.  I successfully avoided exercising again, and almost avoided writing.  This time my method of avoidance was Carrie Newcomer.  A folk singer grounded in a deep and rich sense of the sacred, she sang the Word of God to me--Not out of the Bible, but out of ordinary life:

So today I'll drop stones into the river,
And the current takes them out into forever,
And the truth is,
Most of us will never know
Where our best intentions go.
Still I'll drop another stone.
 
I'm not Martin or Malala.  I'm Mary.  I write blog entries and do a Bible study for ordinary people I love and care about who love and care about me. I know some people who read what I post, and each of the four or five people who sit with me and ponder questions about God and life every Monday.  But the truth is, in a very real sense, I have no idea where my best intentions go--how they mix and mesh --or don't mix and mesh--with what's inside you.  I can't determine outcomes or entirely control their impact.  All I can do is drop stones into the river. . .

So I'm dropping another stone.

Mangers, Christmas Parties, and the Energy of God

We had our Christmas party last week--"We" being the residents and staff who live and work in the place I call home.  I am not much for parties.  Introvert that I am, I prefer being alone.  But my power chair had been broken for six weeks (I would have written about that, but it was basically  a repeat of the "My chair needs a new battery" post I wrote not long enough ago, and "ditto" doesn't count as writing). Life in my manual chair was less than fun. Even I was tired of sitting in my apartment.  I went to the party.

Someone had hired a band for the occasion--a perfectly decent band I suppose, but in a space as small as our dining hall, their amplifiers and mics turned the music into a wall of sound--a wall I felt like I had just crashed into. Conversation was impossible.  A friend pushed me to a table.  It was sprinkled with candy--Hershey's kisses, mints, chocolate Santas.   Miraculously, I didn't want any.  The band played; I twiddled my thumbs, literally. I'll stay for thirty minutes, I promised no one in particular.  Then I looked up, and saw Sasha.

She was dancing.  I mean really dancing.  She moved like Elvis.  I swear each hip wiggled independently.  I stared at her.  I broke into a smile.  I think I actually laughed. Almost involuntarily, my hand began to tap on the arm of my chair. I was keeping time with the music, which had apparently stopped being a wall.  Speaking of Elvis, Santa could dance too!  The head of our maintenance department, whose name really is Elvis, was Santa this year, and he and Sasha made quite a pair!  I looked around the room.  People got out of their chairs and joined the dance. Our executive director was taking pictures.  She and the rest of the staff were laughing with each other, and with us.  This was worth coming for, I thought, and this is God.

The pure, unadulterated joy; the energy that moved through the room, that moved my hand to tap and my lips into a smile--that is the God my religion sings of, who delights in surprising us, who loves to show up in unexpected places, like mangers and dining halls, and even grumpy people who don't like parties.  In life's best moments, that God fills us to the brim with his--or her--exuberance, extravagance, and generosity, which then spills out as loud music, joyous dancing, and occasionally, a run-on sentence or two!

May your new year and mine be filled with that God.

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