A Photograph of me without me in it

A Photograph of me without me in it
A photograph of me without me in it

Sunday, June 21, 2015

What do I do now?

Today, I gave the sermon, really a reflection, at my church. I had planned to talk about my loss and grace with my disabilities, but after Wednesday night's shooting, how could I talk about anything else? I have more questions than answers, but here were my mullings from today: 

Loss and Grace

Hi—I’m Mary. I’m your substitute sermonist for today. Things for this day have not gone as planned, and they keep changing, so this is the third sermon I’ve written.

Originally, Lori was supposed to deliver our sermon this morning, with Pam and me voicing a sermon that the three of us put together, but Lori got pneumonia again and is back in the hospital, so we will share when she and Pam and I are ready. We are singing the hymns that Lori chose in today’s service. Other than that, you will have to come back another day to hear that sermon and be part of that service.

After Lori returned to the hospital, I said I would be the substitute sermonist. I drafted a sermon about Lori’s and my shared experiences as lesbians and people with disabilities. I wanted to say that we had both been through hard times, and had come to believe that these hard times had brought surprising gifts. I think the people in this church and increasingly in our nation understand that gay lives are not tragic lives, but we both came out to families in a time when there was no cultural embrace, so coming out and coming to believe that God loved us in this way was hard.

The understanding of people with disabilities seems further behind, so I want you to know: our lives have not been tragic because of our disabilities. Lori agrees with me in this. In fact, in some ways those disabilities have been gifts that require us to slow down and be present in the world differently, perhaps more soulfully, than we would be without the disabilities.

Thus, from the darkness of doubt and disability have come gifts. If there is any tragedy, it is in a society that understands those of us with disabilities, those of us who cannot make a living wage in this society, are less than human.

In this second sermon, I shared some of the gifts of living with disabilities and with a clearer sense of the fragility of my life: first, I am more aware that I am not in control and I’m more at peace with that; second, I am more aware of my own limitations in understanding others’ lives; third, I have slowed down and am more present in my life; and finally, in this presence and this humility, I listen more closely to God and the people around me.

So that’s what my second sermon was about: I planned to talk about faith and those times when things have not gone as planned. The experience of things not going as planned seems to be a universal one, also a Biblical one, and perhaps my experiences have given me some insight into the challenges and gifts of things not going as planned. This sermon was about loss and grace.

Today’s liturgy and prayers were built around that theme. I felt I had some expertise in this sermon, some way of seeing the world that differs from many others but might resonate with you nonetheless. However, if you would like to read that sermon, you’ll have to go to my blog, cantduckit.

Why a third sermon? Because I woke up Thursday morning to the news that a white man had murdered nine black people at a Bible study in Charleston, South Carolina. How can I talk about anything else?

But what do I say? This sermon will not have answers. This sermon is really a reflection, a journey through my wondering: what do I do as a white woman in a country that persists in treating some of our citizens as less than human? I hope that this reflection may resonate with you.

In this reflection, I invite you to walk with me through this tangle of thoughts and emotions.

I was born into the crucible of the Civil Rights Movement, in March 1964, in Atlanta, Georgia, in the white wing of the Grady Memorial Hospital. My public school in North Carolina in first grade must have been all white, though I don’t remember noticing. For second grade, busing integrated the schools, and my parents were surprised when my friend Michelle, who was black, showed up for my birthday party. My family was among the first to flee to what my friends called “the boondocks” but would soon be called “the suburbs.”

When I was in high school, I remember a silent protest where African Americans took the seats of those of us—all white and Asian-American—who had been inducted into the school’s service club. I was confused because I had heard that no African Americans had applied. I also remember a lively discussion on a bus ride with my basketball team when whites and African-Americans talked about how we took care of our hair. It had never occurred to me that our lives would differ in this everyday way.

Skip ahead a couple of decades: When my partner Ann and I moved to the mostly black central district 20 years ago, a young black man driving down Martin Luther King, Blvd. stopped, rolled down his window and yelled at us, “Go away! We don’t want you here!” Unsure of whether he was yelling at us because we were lesbians or we were white, we shrugged. What were we to do?

Notice that in each of these scenarios, I was confused: each experience told me that I did not know the world I was living in. In each instance, I did not know what to do.

From my earliest days, I experienced a black and white world. But I had learned that things were changing for the better in the relations between blacks and whites. After all, we could sit together on buses and attend schools together. Some black people became famous and rich. One black man even became president.

I wasn’t entirely na├»ve. I helped to start a school for students who lived in poverty, many of them students of color, many of them students who had immigrated from violence or grown up in violence in the US. I taught in this school.

I had begun to think that, for better and worse, blacks and whites were beginning to live in the same worlds. Shortly before Obama became president, however, I had brain surgery and began to experience the world differently. In my first six months out of the hospital, I walked with a walker and wore a patch over my left eye. I moved so slowly and tenuously that strangers often asked me if I were okay.

Black people were most often the ones to ask me if I were okay and to offer to help me. One day, as I walked through the park, a black woman with a flatness in her eyes that suggested she was going through chemo, stopped me and asked if she could say a prayer for me. This happened from time to time, and I knew that she would put her hand on me and pray for me right there. I nodded, and she did put a thin hand on me and asked me my name. Then she prayed, “Dear God, be with Mary. Let her know that you are always walking beside her. When she is weary, let her know that you will carry her. Amen.”

I carry that prayer with me.

In this time after brain surgery, I learned that though I walked through the same parks as black people, I had not been invited into their lives in even the most casual ways, and now for the first time I was. The connections felt all the more grace-filled because of the shared history that separated us.

I began to hear Martin Luther King’s “I Have a Dream” speech differently. Previously, I had focused on the part about little black girls and little black boys holding hands with little white girls and little white boys in sisterhood and brotherhood. This was possible in many places now, indeed something to celebrate. But the essence of the dream, envisioning justice for all of God’s children, began to ring louder for me.

There is still so much injustice, so much violence. I wonder if as a nation we can ever escape the generational trauma of slavery. I want to believe with Martin Luther King that the arc of the moral universe is long, but it bends towards justice.

I want to have hope, and yet I feel so much doubt. For a long time, I tried to be the change I wanted to see in the world by teaching in schools with so many children of so many colors.

But then with my disabilities I can’t even do that anymore. “So how do I confront injustice now?” I have wondered. The wondering led me back to a memory of my first visit to Guarjila. In our closing reflections, I asked, “What do we do now?” I expected the answer to be to provide funding for some local project, but as always the people we were visiting surprised me. “Learn about your own country,” they told us.

So now, in learning about racism, I am trying to take their advice: to learn about my own country and about myself.

As part of this learning, I have been participating in a Race and Spirituality Study Group that started from members of this church two years ago. As part of this group, I have been learning about laws and lives in my own country. I have been learning about my own privilege, until now mostly invisible to me, and about deep systems of injustice.

Like Martin Luther King, I want to see a more just world. I believe Jesus wanted that, too. Like Abraham in the Old Testament, I am wandering in a desert, dreaming of a different land, and I do not know if I will ever get there. I do not know—or even suspect—that I will see our country as a land of justice for everyone before I die. I do not even know if I will have the vision of that land: what would it look like? Abraham could see his promised land. Martin Luther King could describe his. I cannot even see the vision clearly. What would justice look like here?

I have come to believe that I am called to be more humble and more faithful than I have been. I try to remember: I am not God. Only God is God. Maybe my tumors have taught me that. The place for me to begin is in understanding myself and the history that is mine and so many others’. The place to begin is in humility and in faith.
I know that the cause is urgent. I’m just not sure what the urgent action should be, especially while I’m so unaware of myself and my culture.

Reading Michelle Alexander’s book The New Jim Crow taught me what a letter to Dear White Liberals said to me Saturday morning: “What has happened here in the U.S. [is that] racism and violence against People of Color has been hidden from the average white person and then concealed in the language of bureaucracy so craftily and cunningly that many white folks—and even some People of Color—do not see or hear it.” http://lilywhitemama.com/a-piece-of-the-puzzle/

I am beginning to confront racism in a new way: with awareness. I am doing my best, and I must ask forgiveness if this path is the wrong path to take.

I invite you to join me in this quest for self-knowledge and knowledge about our nation. You might start with reading Michelle Alexander’s The New Jim Crow. (which, by the way, is the only book I’ve ever read that I think every American should read. And I’ve read a lot of books.) If you’re interested in knowing about our study group, let me know. If you have ideas for me that I haven’t thought of, please let me know.

But let’s not continue to let racism reign without taking it on in some way.

As we move forward, I hear again that prayer in the park. This time it’s a prayer for all of us.

“Dear God, [be with us.] Let [us] know that you are always walking beside [us]. When [we are] weary, let [us] know that you will carry [us]. Amen.”

Friday, June 19, 2015

Loss and Grace

I will be giving the sermon at our church on Sunday. Originally, my friend Pam and I were going to voice our friend Lori’s sermon, but Lori got pneumonia and is now in the hospital for a second hospital stay, so I agreed to be the back-up sermonist. I wrote the sermon below and planned to deliver it. I have even practiced.

But Thursday morning, I awoke to the news that a white man had murdered nine black people at a Bible study in Charlestown, South Carolina, on Wednesday night. How could I talk about anything else?

So I have written a new sermon and will post it here after delivering it. My original sermon, my second actually, is below:

Loss and Grace

Hi—I’m Mary, and my partner Ann and I have been part of this church for over twenty years. Lori was supposed to deliver our sermon this morning, but she got pneumonia again, so we had too much trouble planning, and you have me instead. Lori will share when she and Pam and I are ready.

Lori and I both live with disabilities as a result of health issues: Lori is the woman who uses a wheelchair and usually sits at the front. She’s had cerebral palsy all her life. She’s never been able to speak, and her muscle control has always been compromised, though that’s progressed over the years so that she used to be able to use a communication board but now communicates by moving her eyes in response to binary questions. [For example, I might ask, “Are you well (holding up my right hand) or not well (holding up my left hand)?” and she would reply by looking at the hand that best matched her response]. Though words haven’t been available to her, she has been able to laugh or wail, so we in the congregation have known her emotional responses to events in the church. She won’t be able to make those sounds anymore, so when she comes back, she will be quiet. I will miss the times when she has expressed what she is feeling, sometimes a reverberation of what I am feeling and sometimes a reminder that her life has been so much different than mine.

So things haven’t gone as planned for today, and I’d like to talk about faith and those times when things have not gone as planned. The experience of things not going as planned seems to be a universal one. I’m guessing there have been times in your life when things haven’t gone as you planned. Maybe this morning.

The experience of things not going according to plan is Biblical too: the writer of Hebrews lists sixteen Old Testament examples of when things didn’t go as planned, and the writer notes that it’s impossible to recount all the stories: there are so many. Even Jesus faced a plan not of his own making: some say it was God’s plan all along and other say the plan was a political betrayal. The section where Jesus understands that he is being betrayed and prays fervently to God to “take this cup from him” has always been to me one of Jesus’s most compellingly human moments. Jesus’s fervent prayer shows me that whoever’s plan this betrayal was—and I should tell you that I don’t believe God plans to torture and kill those God loves, which is all of us—this was not Jesus’s plan.

Those of you who follow my blog know that it’s titled cantduckit, and you know the blog is about my life after brain tumors. I hadn’t planned on brain tumors, and I’ve titled the blog cantduckit because my experience was in some ways so common: there are some things in life we just can’t avoid. There are things we don’t plan for. And the argument that God has a larger plan doesn’t make sense to me.

Lori’s recent pneumonias and hospital stays are like that, too—Things she can’t duck. Things she didn’t plan for. But they are now part of her life’s narrative, as my tumors are part of mine and Judas’s betrayal is a part of all our narratives.

Perhaps you’ve had serious health issues, like Lori and I have, or experienced some loss or other trauma. If so, you know what I’m talking about. If not, if you’ve lived any time on this earth, (and I’m guessing most of you have), you’ve experienced things you can’t duck. And you know that though you would have avoided these losses or inconveniences if you could have, you have grown into a new person because of these experiences. Any darkness that I’ve experienced has its gifts, too. And I believe I’m called to see the gifts in the darkness. As I’ve gotten to know Lori better over the past few years, I know that she, too, experiences gifts in the darknesses of her life.

If today had gone as planned, Lori and Pam would be up here with me, and the words would be from Lori. As you see, things are not going that way.  Much of my life, in fact, is not going as I planned.

When I came out as a lesbian at the age of 30, it became clear to me that my life’s plan of being a suburban wife and mother would not come to pass.

When I was diagnosed with my first brain tumor at the age of 43 and experienced disabilities after the surgery, it gradually became clear that my second plan to change the US educational system would not come to fruition either.

It’s not that I’m enlightened about this matter of planning and the likelihood that my life will require that I go in some direction other than my plan. In fact, now I have a third plan: I am attending the Masters Program in Social Work at the University of Washington with a plan of becoming a therapist for people with life-changing health conditions.

Because our culture is awash in the difficulties—some would say tragedies—of lives with disabilities, I’m guessing that you have at least a vague notion that Lori and I and others with serious health conditions have experienced losses. Those losses are painful, but I’m going to talk today about the gifts in such experiences because I think the gifts may be more surprising to you. Not to be Pollyanna, but perhaps you will notice the gifts in your own losses. Or perhaps I will give words to what you already know to be true.

Important gifts of these tumors for me have been: first, I am more aware that I am not in control and I’m more at peace with that; second, I am more aware of my own limitations in understanding others’ lives; third, I have slowed down and am more present in my life; and finally, in this presence and this humility, I listen more closely to God and the people around me.

Because I’m not so attached to my plans as I was before, and I’m not in such a hurry to achieve as I was in my early planning days, I am not moving so fast as I used to. As my disabilities have required that I slow down, I am not running down a path anymore. Sometimes I sit down in my path and look around. Sometimes I notice new friends—or old ones—whom I might have missed if I were running by.

In this sitting down and looking around on my life’s path, I am conscious more often that God is with me. I am more confident that I am okay and that God loves me. I am more humble and see myself as a small part of a huge creation. Perhaps, the writer of Hebrews would have said that when I sit down and look around, I see that I am home.

Perhaps the gift of experiencing things in our lives that we cannot duck is that we learn that our lives are bigger than our imaginings, and these things we cannot duck take us home where we recognize that we are both larger and smaller than we had guessed.

Perhaps that gift is humility. Perhaps it’s faith. Perhaps it’s grace.

Saturday, June 6, 2015

Three Quick-witted Smart Alecks

I have been visiting with my friends Pam and Lori monthly for two years now. At least, we have planned to meet monthly, but sometimes one or more of us can’t make the meeting time. The last couple months, for example, have been hard: at the end of March, I went to Cuba for two weeks, and Lori went to the hospital because she had pneumonia and had aspirated while she was eating. At the hospital, she had a tracheotomy and now has a permanent trach. I returned from Cuba with the flu, so I couldn’t visit Lori. Pam had pneumonia, so she couldn’t visit either. Then I went to North Carolina for a week and came home to have eye surgery and two weeks to recover.

Finally, last week, Pam and I were able to visit Lori again. The three of us have been planning a sermon together for a year and a half or so, and we’re scheduled to deliver it on June 21, so we needed to get to work.

You may wonder why it’s taking so long. The sermon is Lori’s sermon that Pam and I will voice. (Lori has cerebral palsy and doesn’t verbalize or have control over her muscles except for her eye muscles. To write her sermon, Pam and I guess at what she might want to talk about or two say and ask a series of binary questions. Would you like to say “angry”, one of us putting the right hand out or “pissed” putting the left hand out? Lori chooses by looking left or right. In that instance, she was “pissed.” We don’t always understand her response correctly, and we can go a long way down a road before we realize that we’ve taken a wrong turn and ended up in Massachusetts instead of Georgia.)

When Pam and I first got together with Lori, we performed for her. The first time we went, we sat in her living room with her and a housemate or two and their caretakers, and I read some of my writing and Pam sang some music. The second time we had planned something similar, but Lori kept sweeping her eyes to the right, and after some guessing discerned that she wanted us to go to her room.

In her room, Lori drew our attention to a painting she had done (brush in mouth), and we noticed in the swoops and greens turned to brown the possibility of anger. She communicated that the painting was about a time when she was young and in school and a boy walked by the special ed room and mocked them. (This might have been when she was “pissed.”)

After some time, it occurred to me that Lori might want to do another sermon. She had done two in the past, one that Sonja voiced and another that another church member, Will, voiced. In both of those sermons, she told her life story and told people how to communicate with her.

When I asked if she’d like to do a sermon, I figured we’d do another life story because about ten years had passed since the last one and she had ten years of her life to share and new people in the congregation to share with. However, she was clear that this time she wanted to share a message. So for the past 18 months, Pam and I have been trying to understand the message she wants to share. We don’t want to misrepresent her, especially by putting our own overlay on her words.

My understanding of her message is still evolving. The last time we had gotten together, I thought she wanted to talk about the way that dealing with something that’s hard has had it’s gifts, and I thought she wanted to talk about the way that relationships—and particularly her relationship with her sister Sandy—have helped her through the tough times. At that point, I was going to share the story of my disabilities along with her story of coming out. Pam would share a story, too.

I drafted my part of the sermon (below), and Pam and I visited Lori again last week. I think we have more clarity now about Lori wants to say, and I am clearer that this is her sermon, not mine. At church, I won’t be sharing what I’ve written below because it no longer belongs in Lori’s message. (It never did, but I’ve only just realized that.) This blog is about my life after brain tumors, however, so I’m sharing it with you.

Here goes:

My name is Mary, and my partner Ann and I have been coming to this church for over 20 years. When we came to this church, it was because we wanted a spiritual community that would support us as a couple, and this church has been a tremendous community for us over the years.

Not only have we been loved here and has our relationship been respected, but we’ve also grown spiritually in ways that we could not have guessed we would in the early 1990’s: in these 20 years, we have marched in every LGBTQ Pride march with this church; the church’s theology, art, and music sustain and inspire us; we have made friends and learned about ourselves and our country in Guarjila, El Salvador; we have accompanied young children—and they have accompanied us—who have grown into young adults; we now meet monthly with a Race and Spirituality study group; we had our commitment ceremony here and then our state-sanctioned wedding; this community and the community of Guarjila held us in its heart and in its prayers as I went through two brain tumors; the list goes on and on.

Ann and I have grown together and with this community in so many ways. The most important part of our life in this church is the relationships with so many individuals and the community as a whole.

And that’s what I’ll share with you today: a story of how important you have been to me and of how graced I am to have made friends like so many of you and Pam and Lori. Like Pam and Lori, I have a coming out story. The time of coming out was the hardest time of my life—harder than my brain tumors—but today I want to share with you some of my story of being in this church, of having brain tumors, and of my friendships with Pam and Lori.

Pam and I began to be friends when Pam and Kari, her partner at the time, came to Ann’s and my home for Lenten House church soon after they moved to Seattle in the mid-1990s. Pam and I quickly recognized in one another quick-witted smart alecks and common struggles. That friendship has deepened over the years, as each of us has experienced some tough times amid the joy.

My friendship with Lori began more slowly.

Ann was on Lori’s care team when Lori first came to this church a gazillion years ago, but I didn’t know Lori very well at first. Ann and I would sit with Lori once a month and would wait for her ride with Access to arrive, sometimes during church and sometimes an hour after church. Once, in trying to be helpful, I pushed the wrong button on Lori’s electric wheelchair, and it raised and tilted her horizontally. I’m pretty sure we were both terrified and agreed that I shouldn’t try to be helpful again. (I’ve stuck with that.)

In those early months, Lori’s friend and head of her care team, Sonja, would sometimes voice a prayer from Lori—for her family’s health or for conflict in the group home where Lori lived. In these early months, Ann and I were stunned each time. “How does Sonja know these things?” we asked one another. In those early months and years, we didn’t know yet how to listen to Lori. We have been slow learners.

I had noticed for some time that Lori and I have a similar sense of humor because she would guffaw at a minister’s bloopers or smile at the mishaps of young children. I began to notice that Lori, like Pam and me, was a quick-witted smart aleck, and as I began hearing Lori’s story through the years, I learned that Lori, too, had been through some tough times.

Lori and I really became friends in the wake of my brain tumors. In those early months after surgery, I first used a wheelchair and then a walker and then re-learned to walk with a cane. I wore a pirate’s patch over one eye to manage double vision. I took Access, the transportation system for people with disabilities, when I needed to go somewhere on my own.

One day when I was still using the walker, after the church service, I told Lori about a friend, a smart guy, who had asked me, “Is taking Access fun?” Lori and I hee-hawed about that: taking Access is not fun. The van rattles and bumps; sometimes the driver puts the direction-finder on the speaker so that we all hear it and then the driver ignores the directions so that we would all hear “Recalculating” for the two hours it takes to get next door.

My life has changed with these brain tumors, and I certainly mourn the losses of so many gifts, but the tumors and these disabilities have also slowed me down so that I can be more present in my life’s moments and can have deeper relationships.

Without my tumors and my disabilities, I don’t think I would have understood how to be friends with Lori. I also think my relationships with others are different now. For example, Pam often came to the hospital when I was recovering from brain surgery (with chocolate chip milkshakes—she was already a good friend, after all.) I remember Pam sitting in a chair at the end of my bed, both of us laughing hysterically about the fact that on my rehab floor there would be competitions on Fridays. We tried to guess what they would be: One-on-One Basketball? Ping pong? A badminton tournament, maybe?

As with Lori, my friendship with Pam began with this church, with a common searching for who we were and what our lives would mean, with a guffaw about the absurdities of our lives.

So that’s the main thing I want to say to you today: I have been through some hard times with these brain tumors and these disabilities, but my life has not been tragic, and there have been surprising gifts, among them deeper friendships. And for these gifts I am so grateful: for Pam and Lori and each of you I am so grateful.