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.
Sunday, July 20, 2014
Wednesday, July 9, 2014
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?
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?
Saturday, June 21, 2014
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. . . .
Thursday, June 12, 2014
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!
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!
Thursday, June 5, 2014
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.
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.
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