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.
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.