A Photograph of me without me in it

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

Saturday, March 18, 2017

Making Peace

Last night, my partner Ann and I went to a Moth Story Slam in Seattle. I know about The Moth from the radio hour on KUOW, our favorite National Public Radio station. On the radio, people tell short stories on a theme. It’s lovely.

When I learned that The Moth sponsors performances in Seattle, I decided to attend. When I read on the website that people could sign up to tell their stories on a selected theme to an audience, I decided to try.

Public speaking isn’t generally my forte. In my early twenties, I gave a sermonette at my Southern Baptist Church and fainted in front of 400 people. In the three decades since then, I’ve presented mostly to small crowds, generally 7 (in a private school) to 42 (in a public school) high school students in my classes. Sometimes I've summoned the courage to speak to 70-100 people at church. 

Even in those classes and when I've given sermons or other talks, I always had notes, but now many Sundays I speak a short welcome to all at the end of a service. Tonight I’d have to speak without notes. I worried that the pressure might make me faint.

I had imagined that there might be forty people sitting at round tables with low lighting, so I invited some friends to come. I thought it would be nice to see the supportive faces of people I know in the audience. Though some part of me knew this would be a contest, I didn’t think about the contest, and I certainly didn’t think about winning. I figured not fainting would be a success. Being well-received would be a bonus.

As it turned out, the venue was a large room on the St. Mark’s Cathedral property. The space was used by a Waldorf school during the week. As we drove into the parking lot, 45 minutes before the show, there were a lot of cars. We could see a stream of people moving swiftly through the dark rain, going in the door that I thought must be ours.

I figured there must have been some other event nearby, but when we found “Skinner Hall” we entered a large room with rows of folding chairs. A third of the seats were already full. Six people had already put their names in the cloth shopping bag to read, and I knew they’d only choose ten people to read by drawing names randomly out of the bag. I had hoped not to faint. Now I just hoped to tell my story.

At 8:00 pm, the people in charge flashed the florescent overhead lights, and about two hundred people took their seats, some on the floor along the wall because there were no more folding chairs. Our friends Susan, Rod, and Pea sat with us. A local comedian joked that they (not a grammar error, an indication that the person identifies as “non-binary gender”)…anyway, that they would draw five names out of the bag, one after each storyteller. Then there would be an intermission, and then there would be five more names.

Mine was the fourth name chosen. With a bright spot light, I could not see Ann or my friends, none of whom were in the first row, the only row I could see. I told my story, and I did not faint. It went something like this:

Picture this: I am at a corner on 1st Avenue about half a mile north of Pike Place Market. It’s a beautifully sunny Seattle day. This is the first day since my brain surgery that I have traveled alone. I’m leaning on my hospital issued walker: metal with two tennis ball feet. [some chuckles] I wear a black patch over my left eye to help me manage double-vision. This is the patch that makes young kids ask, “Are you a pirate?” (I always say yes.) [more chuckles]

So I am downtown, leaning on my walker and hesitating on a corner to get my bearings and to figure out where to find the bus stop that will lead me home. I look across the street to my left, but I don’t see a bus stop, so I look to my right where I spot the bus stop.  Two men who may be in their sixties, may be homeless, walk towards me, between me and the bus stop. I don’t think much about them. When they reach me, they offer to help me across the street. Because I don’t need to cross the street, I say no thank you. They really want to help me, and they insist, I again say no thank you. [chuckles] They persist again, so finally I go with them, crossing a street I do not want to cross. [laughter]
One performs the wild gesticulations of Frosty the Snowman’s traffic cop [more laughter] as I cross the street, so no car hits me. The other walks protectively by my side, pointing out potholes. [more laughter and nodding from heads in the front row] When we arrive safely on the other side, I say thanks and watch them continue down the block. About half way down, they give one another high fives. [more laugher] I wait for them to get small in the distance before I cross back. [chuckles]
The kindness of these strangers reminds me that, along with my losses, there are gifts in this new life. [nodding from heads in the front row]
Sometimes these kind strangers are physically helpful—and sometimes they aren’t—but they always lift my spirit. [more nodding from heads in the front row]. Though I have not made peace with my disabilities, I see in these kind strangers the truth that with my disabilities I have many losses, but I also have experiences I would not have without these tumors. So in some ways, these tumors have been a gift: I get to live two lives in this one. [more nodding from heads in the front row] 
A few months later, my partner Ann and I were walking through the park near our home. I was again leaning on my walker with the tennis ball feet and wearing my pirate patch. A woman with light brown skin that was slightly green stopped me. The scarf covering her head and the flatness in her eyes suggested she was a chemotherapy patient. “Can I pray for you?” she asked. I nodded and gave my name.
I have learned since my tumors that when someone asks me if they can pray for me, they don’t mean quietly or back at their homes. They mean right now. [chuckles] Out loud. [laughter] This caring stranger put her hand on my shoulder, and delivered a graceful prayer: “Oh my Lord, bless Mary on this difficult journey. As she wanders in this desert, let her know that you walk beside her. When she is weary, let her know that you will carry her. In the name of your compassionate son, I pray.” [ahhh.] I said thank you and continued, blessed, through the park.
The kindness of these strangers and many like them help me to make peace with my new disabled life. Just to be clear, I have not made peace. This is not a done deal. Every day, I am making peace.
Amen. [applause—everyone gets applause by the way. It’s a kind audience.]

Ann helped me descend the two steps from the stage and told me I was great. I had practiced with her earlier in the day, and she had given me some helpful feedback about just relaxing and talking normally, and she said this telling was my best one. Overwhelmed by the telling and safely descending the stairs, I forgot to draw the next name, so the comedian did that. As I headed down the side aisle, Megan rose from the floor to hug me. "I'm so proud to know you," she said. Wow. Just wow. 

After I took my seat and the comedian said some funny things, she asked the three scoring teams for their scores. I hadn’t thought about this part. Too focused on grades in my early education, I have avoided anything with scores, but at this point there was no avoiding this. So the teams gave their scores, and I was in the lead at intermission. A pediatric oncologist who had told a story about coming to peace with the parent of a three year-old with a brain tumor, squatted beside and told me how much he’d liked not just the story, but also the performance. He asked about my brain tumors, and I told him that I’d had ependymomas. His jaw dropped, “That’s really, really rare in an adult,” he said.

He also said that he’s now a research scientist in a biotech company at South Lake Union, a pricey area for techies in Seattle. He said that he thinks he’s found a drug for ependymomas. This time, my jaw dropped.

As he and I talked, Ann bought a beer for us to share, a gift which I welcomed. When the light flickered, he and I shook hands, and we all took our seats. During the second act, a woman outscored me, which disappointed me because I’d gotten my hopes up.

On the way home, I confessed my disappointment to Ann and told her I didn’t think I’d learned anything that would help me the next time, but reflecting on the experience in my hour from waking to rising this morning, I realize I did.

As I reflected, I realized that I had given a personal essay—or even a sermon—instead of telling a story with a resolution. (I even ended this time with “Amen,” which I had neither done nor considered doing before.) I learned that having friends there was important to me. I also learned that this was fun, that talking without notes was okay, and that I neither fainted nor felt woozy.

I will try this again. Next time, I’ll wait for a theme that matches a story I have to tell without needing an explanation. Again, I’ll invite friends to come. I’ll have an idea of the size of the crowd. 

I just hope my name will get drawn. And I hope to God I will not faint. 

Monday, March 6, 2017

Soul Thirst

I thought I would feel relaxed and energized after I graduated with my MSW in December; instead, I’ve felt tired and a little lost. I went to the UW’s School of Social Work four and a half years ago with a plan to be a therapist in a hospital for people with life-changing health conditions, but one thing I learned is that the licensing needed to work in a hospital is not possible for me because, among other issues, with my disabilities I cannot fulfill licensing requirements in the required seven years. What do I do now?

I’ll figure out a way to live meaningfully, and I’m already finding opportunities (like writing with homeless teens and discussing books with elders), but in the wake of my graduation, I feel a little flat and I’m asking a lot of questions about my abilities.

Before and after my brain tumors, I’ve facilitated a lot of meetings and groups. Most of them have gone well, but one last week was awful. The meeting has me questioning my capability. Even though I know it was only one meeting, my frustration has piqued my post-tumor insecurities. I’m also having more difficulty with short and medium term memory. Since radiation, I have not recognized the faces of people I’ve met before but don’t know well, but now I’m forgetting events in my recent life, and I lose track of what I’m saying or thinking. My hearing aid hasn’t worked for a couple of weeks (though I got it fixed today.) I’m sleeping fifteen hours a day, like I was closer to radiation. That takes a lot of a person’s day. The continuing losses have me feeling blue. Not dark blue, but not light blue, either. Probably medium blue.

This is the season of Lent in the Christian church, a time for feeling flat and a little blue, so my spirit is in sync with this season. Lent in the Western Christian church is the forty weekdays before Easter, for some people forty days of fasting, abstinence, and penitence, but for me forty days of quiet (not silent) reflection. Those forty days parallel Jesus’s forty days in the wilderness before his crucifixion and resurrection.

Our little Methodist church prepares during Lent more thoughtfully than during any other season, I think. This past Sunday, a simple brown cloth hung over the stained glass window of a welcoming Christ. (That’s always a downer.) At the front of the church was a collection of brush and sticks, desiccated as in a desert scene. Though the choir sang beautifully (as always), they didn’t use the word “Alleluia,” and neither did the rest of us. We never do during this season.

So my church and my spirit are subdued right now. Perhaps others feel this way, too, and perhaps Pastor Ann knew that and that’s why she titled her sermon “Soul Thirst.” She had a cold and was a little sneezy, so her delivery was more subdued than usual, though it was still on the perky side.

I’ve been thirsty, the literal kind that has my lips feel cracked and my tongue stick to the roof of my mouth, since radiation for my second brain tumor. Friends know that when they sit beside me, they will have to fill my water glass throughout our time together. My friend Allyson has me use a Mason jar at her home, so that no one has to fill my cup so often and I don’t go thirsty. My partner Ann bought me a plastic version for home, so that I stay quenched here, too. All this talk about water is making me thirsty, and I could use a break. I’ll go get a drink. You can, too.


Okay. I feel better. In addition to this throat thirst, my soul thirsts now, but I’m not sure for what.

In her sermon on “Soul Thirst,” Pastor Ann talked about multiple times when Jesus and others (like Moses and his followers) spent weeks or even decades in the wilderness. For example, she said that after his baptism Jesus went into the desert wilderness “to figure out his calling.”

Going into the desert isn’t easy. For one thing, there are snakes there. Real ones. Recently, my partner Ann and I went hiking the Andreas Canyon trail, an "easy" trail in the desert near Palm Springs, and it was tough. We took a hike that a ranger recommended for someone with disabilities. I thought I might die. At one point, Ann went ahead to scout the terrain, and when she reported that there were just more rocks and dust ahead, we decided to go back the way we had come. I struggled to land each footfall safely, and when a young woman passed going the other way, and I was struggling to bring my left foot safely down off of a rock, the young woman asked with wide eyes and a kind of desperation, “Do you need any help?”

I looked into her earnest eyes with my crossed ones and responded honestly, “Only if you have a helicopter.” With my disabilities, the literal desert is an especially hard place to navigate. I imagine the spiritual desert is hard to navigate no matter what abilities a person has.

Pastor Ann noted that “We’re not in the desert to fix things, but to see what can grow.” That feels hopeful. She also said, “Maybe we’re in the desert because we need to learn something.” That sounds hopeful, too, but to tell you the truth I’m sort of tired of all this learning and the effort it requires.

Perhaps this spiritual desert is one I’m wandering in now. After these tumors and with these disabilities, after these degrees and with all these insights, I wonder what my calling is. And I wonder if I’ll hear it when it calls. (Fortunately, my hearing aid is working again, so maybe it’s more likely.)

Maybe I’m tired of learning, or maybe I’m tired of trying, and instead of trying to force a death march to the promised land, I need to rest and look around a little. Pastor Ann said that the word “Angel” in the Bible can also be translated as “messenger.” Maybe I need an angel (or a flock of them), or maybe I just need to listen to the messengers who come to speak to me. Maybe they’re here not to rescue me from this desert, but to walk with me here.

Perhaps I can hear the messengers and still be wandering in this desert. When I think of it, though this is Lent, it’s also the season for angels in my life.

Last Monday, my friend and previous principal Rick came for dinner, and we got to catch up. I was reminded of his generous spirit, his kindness and his compassion. Thursday, I was able to witness a writing group for homeless teens. Friday afternoon, I had lunch with my college friend Susan and met her friend Julie, who is another brain tumor survivor and writer (my peep): it was so good to connect with another person who'd had a brain tumor that I looked again for a brain tumor support group, and maybe there is one I can go to now. Friday night, fellow travelers to the Mexico/Texas border joined Ann and me for dinner. (That’s when I led a miserable meeting, but getting together was good.) Saturday night, my friend and previous colleague Sean and his wife Kate joined us for dinner. Sean is younger than I am, a brilliant teacher with a bright heart, and among other things, Kate loves the books I love. Most significantly, Ann walks this path with me, not directing me but helping support as I hold her arm. 

Then during church Sunday, the choir sang to my spirit (I love that), and Pastor Ann spoke about this thirst. Before church, my friend Judy (whom I don’t know well, but love her combined gruffness and loveliness) gave me a fountain pen so that I could again take notes on the sermon (and hence write this blog entry). During church, Ann held my hand. After church my friend Denise told me that this month marks her one-year anniversary in the church, and she thanked me for our connection. (I thanked her, too.)

This week will be another one full of loving messengers: I get to return to the writing group. I’ll visit the elders I got to know when I was leading a poetry group at a nearby assisted living facility, and my college friend Katie of the magnificent voice will visit and sing.

As I think about it, every week is filled with loving messengers. So maybe I need to notice that the desert has its beauty, too. To notice with Pastor Ann, “Sometimes the mundane can be so miraculous.”

Perhaps here in the desert, I need to remember my sister Jen’s teenage direction to, “Just chill,” and my niece Gretchen’s call to “Chillax.”

Perhaps then my soul will drink deep the miraculous.