A Photograph of me without me in it

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

Friday, August 25, 2017

Both Exquisite and Mundane

Tonight as I sat in the big chair (Dad thinks it's his chair, but it's Dosey's now), our puppy Dosey and I struggled for control of her favorite toy, Bear. Bear is grey with a Teddy Bear face and a long, crinkly body. He ends in a bulb for his bottom, a bulb that I squeeze so that he squeaks when I’ve won him, always temporarily, from Dosey.

As we wrestled for control of Bear, Dosey was getting the best of me, holding Bear in her sharp puppy teeth by his crinkly throat. Then a moth, one of many in our home these days, flew by, and she lost her concentration, so I won the advantage. Dosey forgot Bear and continued to follow the moth. Out loud, though neither Dosey nor Bear knew the allusions, I said, “And then it was, there interposed a moth.” Amused with myself, I chuckled and then went to my computer to read again Emily Dickinson’s poem, “I Heard a Fly Buzz when I Died and Virginia Woolf’s very short essay, “The Death of the Moth.”

“I Heard a Fly Buzz when I Died” is Dickinson’s poem from the perspective of a dying narrator, and all the pomp involved in human death, until the narrator notices a fly that no one else probably notices, but perhaps a reminder of the earthiness and the commonness of death (I write “probably” and “perhaps” because I don’t think anyone ever knows for sure what Dickinson is saying, even when they—or I—think we do.) A key line in the poem is “And then it was there interposed a fly.” (I love the language’s formality ending with the thudding fly.)

In Virginia Woolf’s “The Death of the Moth,” Woolf also writes about death. She describes watching a moth die, its elegance and its powerlessness, as she learns about death. The moth’s dying, perhaps like ours Woolf seems to suggest, is both exquisite and mundane.

Because neither Dosey nor my partner Ann majored in English Literature in college, it’s highly unlikely that they think about this essay when they chase moths in the house, both with a kind of crazed and intense focus like Bill Murray in the movie Caddy Shack. (For this reason, I shared the movie with Ann, but I’m pretty sure she didn’t relish the similarities between herself and Bill Murray’s character that warred against gophers on a golf course.)

There are so many literary references to creepy, crawly things. Of course, there’s the spider in Charlotte’s Web. Though I love the fictional character, I cannot abide (as my Southern mother would say), these creatures. In fact, when there’s one in my house, I go in the other room and yell for Ann to take it away.

There are great poems about even creepier and crawlier things. There’s “Snake” by D.H. Lawrence, an encounter recalled by a narrator who missed out on one of the “lords of life” because he listened to the voices of an education that taught him to fear poisonous snakes. (Though I appreciate the idea that we should not fear all that we have been taught to fear, I still think it’s a good idea to fear poisonous snakes, no matter how kingly they may seem.)

How lucky for me that I’ve learned through literature to appreciate the exquisite in the mundane. I supposed many people see my life of losses from my brain tumors, watch me struggle with my balance as I traverse a Seattle sidewalk despite its cracks, or notice that I am too tired to finish my beer (As 45 might tweet: (“So sad.”)

As William Wordsworth wrote in “Intimations of Immortality:

Though nothing can bring back the hour 
Of splendour in the grass, of glory in the flower; 
We will grieve not, rather find 
Strength in what remains behind; 

Though Wordworth’s losses were from age (I think he was a melancholy 34 when he wrote this poem) and mine from brain tumors, the sentiment buoys me. I do find strength in what remains behind: a life worth living, the love of my partner and family, puppy and friends, a lovely walk around Gold Creek Pond (though in my head I remember the movie and call it, “Golden Pond.”)

Along with the aged Wordsworth, I am grateful for the life after loss. As Wordsworth concludes this poem:

Thanks to the human heart by which we live, 
Thanks to its tenderness, its joys, and fears, 
To me the meanest flower that blows can give 
Thoughts that do often lie too deep for tears.

Sunday, August 13, 2017

Faith and Disability

Today, I gave the sermon—or what we call “the Message” at our little church. A friend had asked me to talk about faith and disability, a big assignment, so I struggled to say what I wanted to say. I wrote four versions. Below is the one I delivered. It’s the fourth one. (It’s good I didn’t have any more time. I would have written a fifth.)

On the bulletin’s front was this quotation from Roland Merullo’s Breakfast with Buddha:
“You ask a certain question again and again, in a sincere fashion, and the answer appears. But, in my experience, at least, that answer arrives according to its own mysterious celestial timing, and often in disguise. And it comes in a way you're not prepared for, or don't want, or can't at first, accept.” 

We began the service with the 23rdPsalm , a favorite. Though I usually use a more progressive Bible, this time I chose the King James version for its lyricism and familiarity.

I chose a scripture about Jesus and a disabled man (John 5: 2-9, 14), so people heard this before my talk. Here it is:

My name is Mary. I’m a member of this church and am speaking today instead of our usual Pastor Ann, because Ann is on a well-deserved vacation, and I’m not.

I’d like to thank all the people who have been involved with today’s service: our music minister (who is back from camp!), the liturgist, the Scripture reader (who told me years ago that if anything’s worth saying it can be said in 10 minutes: this makes me nervous), the person who so thoughtfully gave the children’s sermon, the person who volunteered to do the sermon because Ann was going on vacation and then went on vacation himself, and the person who nudged me. So if this goes too long, you can blame her.

The first time I gave a sermon was in Raleigh, NC, when I was a senior in college at Pullen Memorial Baptist Church (the large Southern Baptist church where I grew up) . The minister had asked me and two others to talk about doubt and faith on the Sunday after Christmas. I talked about doubt, and then I fainted, so I never talked about faith. Later I realized that this fainting episode was a symptom of my first brain tumor. I hope not to faint today.

I have a few things to say about faith and disability, and I want to begin by saying that I am speaking for myself, not for anyone else with a disability.

I also want you to know that I process things I do not understand or things that are difficult for me through my writing, so this morning I’m taking you through that process as far as I’ve gone. I am not making an argument. I am thinking aloud. Therefore, I will not end where I’ve begun. I hope you won’t either.

I chose this passage about Jesus healing the disabled man because I want to talk about disability and faith. Also, the story does not make sense to me, and I thought it might be helpful to do some research and some thinking about it.

Right now, I’m thinking that this story is really about change and a faith that calls us through terrific loss and uncertainty to more faithful lives. But I didn’t start there, so I’ll take your through my process.

At first, the story just made me angry. To be honest, it still does.

When I chose this passage, the story seemed incompatible with Jesus’s wisdom elsewhere, my experience with disabilities, and medical reality. Jesus goes to a place of disabled people, chooses one whiny guy, and heals him, presumably leaving the rest of the pitiful group behind.

I know a lot of people with disabilities, and we’re mostly a strong group. Though people pity us sometimes, we’re not pitiful. If you knew her, think of Lori Pearson, who had Cerebral Palsy and attended this church for the decade before her death. Though she couldn’t communicate with language, she taught all of us about joy and pain. And faith. Such a spirit! I learned a lot from Lori and others experiencing disabilities and disease. They don’t sit around a pool whining, and neither do I. Learning from Lori and others with disabilities and disease has been one of the gifts of my brain tumors. But I’m getting ahead of myself.

The second problem I had with the story is the part about the whiny guy lying on his mat for 38 years. I know the Biblical writers weren’t as particular about counting years precisely as our culture is, but 38 years meant a long time. As someone who spent almost a month in the hospital after brain surgery, I can tell you that muscles atrophy when they’re not used. This whiny guy couldn’t just pick up his mat and walk, though some would tell us that was part of the miracle.

The part of the story that most offended me is Jesus’s comment in the temple to the healed whiny man, “Go and sin no more or something worse will happen to you.” If this implies that the disabilities are a result of sin, that just makes me mad. [At this point, a woman in the congregation hollered out, “Yeah!” and I pointed out that this is like and “Amen” in a Southern church.] My first brain tumor was diagnosed when I was 43 years old, but doctors think I was born with it. I’m pretty sure I didn’t sin in utero, and I’m pretty sure my parents didn’t sin more than others.

The part of the story that I struggle most with, however, is the part that suggests the whiny man has moved to a life like the one he might have lived before disabilities, like nothing ever happened.

It seems to me that any change, for better or for worse, changes us—perhaps for better and for worse. Though you may not have had brain tumors, you’ve probably experienced significant change: marriage or divorce, coming out as a gay person, the birth or death of someone you love, drinking or not drinking alcohol, being in an accident, experiencing disease and disability and so forth. We are not the same as we were.

Next, because I couldn’t make sense of the story on my own, I read some other sermons and some information about disability in the first century.

I hoped the research would explain something about the historical context or something in the translation that would explain the story. That didn’t happen. The sermons looked at the story as metaphor, arguing that the story’s message is to stop whining, get off your duff, and do something. Though this is a good idea, these sermons didn’t mention disability.

This metaphorical reading didn’t satisfy me either. After all, the story is not just about a whiny, lazy man, but a disabled whiny lazy man. And this paradigm, the belief that disabled people could get up and walk if they weren’t so lazy and sinful, is too much a part of our culture for me to dismiss. I remember a woman with MS telling me that her family has rejected her as a sinner, and I remember a penny-loafered man on the bus telling a disabled woman, “You are the way you are because you’re evil.” [Several people gasped audibly at this. It’s true. I don’t think people who are not yet disabled realize the extent of this thinking in our culture.] This association between sin and disability pervades our culture.

At an impasse about understanding this story, I did what I often do when I’m struggling: I went to sleep.

In my dreams, I kept hearing the line from Jesus: “I have come that you might have life and have it abundantly.” As I woke, I realized the part of the story that bothers me most is the pedantic and self-righteous Jesus who is not consistent with the respectful and loving Jesus I know throughout the New Testament.

That Jesus is the Jesus who changes us and assures us that God’s love endures. I thought, “If I remove my own assumptions about this story, perhaps that’s the Jesus who is here. Perhaps he hasn’t told this whiny man that his disabilities are a result of his sins, but that the man has changed physically, and this requires spiritual change.”

That’s true of everyone I know who has gone through significant change: we change. We deepen. We become more complex. The change is both good and bad. It gives us the opportunity to live a new life, not necessarily better or worse, but different. In this newness, we will grieve our lost lives and celebrate the gifts of our new lives. Because whatever our experience has been, we have lost elements of our lives and perhaps ourselves just as we have found gifts in the world and in ourselves in these times of change.

And for now, this way of thinking about the story, of thinking about disease and other changes as paths to a new life, is more consistent with my experience and to my understanding of Jesus and God. No, I don’t think I was given these tumors for a reason, but they came nonetheless. I was given this one precious life. In this life, I will live at least three: my youth as a straight Southern Baptist, my new life as a lesbian, and now my life as a disabled person. I suspect there will be more. I am not done with my changes. However, my belief that I am a child of God, and I will be a child of God forever, abides.

I closed the service with the lines from Stanley Kunitz’s “The Layers .”

And at the very end, I shared a benediction usually used at a baptism in our church. I love it. I’ll bet you will, too:
Today’s benediction is one you may be familiar with. It’s Kathlyn James adaptation of Pablo Casals’ poem:
Do you know what you are? You are a marvel. You are unique. In all the world, there is no other exactly like you. In all the millions of years there has never been another exactly like you. You are a child of God. And you will be a child of God forever. No one can take this birthright from you. May you continue to grow into the fullness of life that is God’s intent for you. And may you always know that you are loved.
Afterwards, I was impressed by the number of people who came up to speak to me. So many people seek spiritual peace around disease and disability. Our culture needs to change in so many ways. 

Tuesday, August 8, 2017


Yesterday when Ann walked our puppy Dosey down the block, Dosey stopped at a gate like she always does to sniff her BFF Percy (I assume named for the poet Mary Oliver’s dog). For the first time on Dosey’s walk, the family was there and let her in the fence,  and Percy and Dosey got to run around together. They’d already done introductions, so after brief butt-sniffing, Percy chased Dosey and then Dosey chased Percy. Percy is a few years older and a few paws bigger than Dosey, but she played enthusiastically and gently with her younger, smaller friend.

Dosey’s a cute, wiggly, confident, extrovert, so she makes friends easily with dogs and people (not so much with cats or motorcycles). Though she’s friendly and has a good time whether two or three or a hundred are gathered in her name, Percy is her BFF. (Another small dog, Pico, is also a great playmate but doesn’t live as close, so they don’t see each other as often. Another dog, Rainie, was her first friend, and I suspect their friendship will grow stronger.)

I’ve been thinking a lot about friendships lately because my ninth grade BFF, whose family was my second family before I went to college, was recently in touch. I don’t think we’ve talked in 25 years, though she now lives just a couple of hours from me. I think she hasn’t been in touch (I’ve tried a few times) because I’m a lesbian, and she’s a conservative Christian, but I’m not sure. I hope we do connect: we were such good friends for such a long time.

My mom is cleaning out the house I grew up in and recently sent me my middle school yearbooks. Middle school was a hard time for me. Before moving to a private school in seventh grade, I had easily made friends, but at this private school, I was the public school kid who was an easily target for the lead girl bully. (If you’ve read Margaret Atwood’s Cat’s Eye , you know something of my experience. As I remember the novel, the details differ, but the emotional story is the same. )

Looking through my middle school yearbooks reminds me that seventh grade was the hardest: it took forever to make friends after I was black-balled, and I finally made a best friend Chris, who moved at the end of the year. In eighth grade, I felt like I was starting all over, but my friend Kathryn and I got to be BFFs. At the end of that year, Kathryn moved (I panicked…Why are my friends always moving? Forty years later, however, Kathryn and I are Facebook friends, and I love the reconnection). Ninth grade, I finally broke out from under the curse and started making friends again. My best friend that year and I played basketball together for hours in practice and on our home courts. I thought we would be friends forever, but I lost her and another dear friend when I came out. The other friend has come back. Perhaps she will, too.

A passage about friendship in the memoir I’m currently reading, Margaret Combs’ Hazard: ASister’s Flight from Family and a Broken Boy,  (great book! Read it!) makes me think about my own friendships:

“I knew things about friendship. You could not create it by yourself. You had to find another, and then the two of you had to do important things, like be brave, spend time together, have each other over to your homes. Share your life.”

The part of this descriptor that caught my attention was “be brave.” For me, it has meant having the gumption to extend myself, to take a chance on being rejected. I can also think of what bravery has meant for my friends—at times, befriending an outcast: in middle school, a social outcast; in the last 25 years, a lesbian; and in the last 10 years, a disabled woman. I wonder what Margaret Combs meant about friendship requiring bravery. (She lives in Seattle, and I’ll be meeting with her in a few weeks: I think I’ll ask her.)

That passage continues in a way that I understand deeply:

Deep down, I knew what it was to lose a friend: I had lost Lily to Texas and knew that when a friendship ends you lose a bit of yourself.

Fortunately, in my adult years, friendships—like love—have come and stayed. I’m more cautious than my puppy, who wags her tail at everyone, but I’ve come to trust that some people will stay by my side and love me for who I am. This is the most important lesson I learned when I came out as a lesbian: when I am truest to myself, most others are true to me. I am sad about those who leave me behind, but so thankful for those who abide.

I'm not as confident about "forever" as I was when I was younger, but I'm more confident about myself and my friendships. Another reason it's nice to be the older lady down the street.