Friday, May 13, 2016
On May 1, 2016, my friend Lori didn’t wake up. Her death wasn’t a surprise. A year before her death, she had gone to the emergency room because she had choked, and doctors had performed a tracheotomy. Since that time, her breathing had become difficult. She spent a lot of time in the hospital. About a month ago, she’d survived what her surgeons described as “a risky surgery” when they drilled a hole in her back to remove some of the kidney stones that were causing her tremendous pain.
I believe she knew she was dying. She had communicated with a group of us that she was afraid she would not come home from the surgery, and after surviving the surgery, she had asked the minister to visit her privately.
I miss her. Memories remain, not so much as narrative but as fragments from blog entries, like a tumble of photographs, images of moments in our friendship over the last fifteen years.
Lori was diagnosed with cerebral palsy as an infant, and the degenerative disease now makes it impossible for her to have muscle control, so she uses a wheelchair. She also cannot speak, so when my friend Pea and I visit, we ask her binary questions ("Is it an elephant?" gesturing with the right hand, "or a petunia?" gesturing with the left hand. She moves her eyeballs right if it's an elephant, left if it's a petunia, and up if it's neither. I'm not sure what it means when she moves them back and forth: either it's both an elephant and a petunia or she's giving us a hard time.)
When Pea and I visited Lori, we formed a triangle in Lori's room, and she told us about her paintings. (She paints holding the paintbrush in her mouth.) The darker of the two paintings on her wall is about a time in elementary school when a boy made fun of her disabilities. Wanting to “hear” Lori’s voice, Pea asked Lori if she would say she was “angry” or “pissed off.”
Lori has cerebral palsy, uses a wheelchair, communicates not through speech but through eye movements, laughter when she is amused (often by children or our ministers’ bloopers or an intense wailing when she is in pain.
Before Lori’s last surgery, I spoke the 23rd Psalm to her:
1 The Lord is my shepherd; I shall not want.
2 He maketh me to lie down in green pastures: he leadeth me beside the still waters.
3 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
5 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
6 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.
Or that’s what I meant to speak, but I might have said, “Yea, though I walk through the valley of doubt” instead of the valley of death. If so, I’m not sure whether I was speaking of her doubt or my own—or perhaps both.
When I called a few weeks ago to schedule a visit, Lori wasn’t home so I talked with a caregiver. In church the next Sunday, Lori wouldn’t look at me. During the passing of the peace, I tried to say “Peace” to her as I usually do, but she turned her head away from me. (I didn’t know she had the muscle control to do that.) She can’t communicate in speech, so she can’t give me the silent treatment, but she certainly communicated that she was angry, or—as she would say—pissed off.
I spoke to the back of her head, “Peace, Lori. I called and made an appointment for Pea and me to come visit you, but I guess the caregiver I talked with didn’t tell you. We’ll see you later this week.”
Only then did Lori turn to face me and smile: I felt forgiven.
The first couple of times Pea and I visited Lori at her home, we performed for her: Pea played the guitar, and I read some of my writing. We performed in the group living room, and anyone who wanted to listen, did.
The visit started and ended there, but the third visit Lori directed us to her room and shared her photos and paintings with us. Now we meet in her room, and we are learning how to hear from her about how she is and what she is thinking.
This time, we sought to learn more about the music she likes. She likes Christian music more than others and rock more than country. She doesn’t like either jazz or blues. Typical for dykes, she likes The Indigo Girls.
Eventually, the goal is for Pea, Lori, and me to give a sermon together at church. Partly, the sermon will be about Lori's life, but the more we get to know each other, the more I think we will also talk about friendship.
I'm no Biblical scholar, but I know that Jesus said, "Whenever two or three are gathered in my name, there am I in the midst of them." This loving presence is with us when we three gather.
My friend Lori has a lot to say, but she can't speak because of her cerebral palsy. I can speak but generally would rather listen. I often muse with her that it's not right that the one who is a talker cannot talk, and there I am, able to talk, but silent.
When Lori first started coming to church more than a decade ago, she came with her caregiver, Craig. I would talk to Craig (who also had disabilities, though they weren’t as severe), and he would tell me that I should talk to Lori, who was the one who wanted to come to this church. I wondered how he knew what she wanted.
Lori’s style indicated that she was a character. Her red wheelchair sported a lesbian bumper sticker that indicated that she identified as a lesbian, and my partner Ann and I wondered how she knew that.
Lori has light brown hair, but for a while she came to church each Sunday with bright red or blue or green hair. I wondered how she communicated that she wanted her hair dyed.
I wondered all of these things, but it didn’t occur to me to ask her.
Ann was on Lori’s care team those first few years. This was before my brain tumors. On our appointed Sundays, we met the Access van at the curb outside the church, wheeled her to the pew that was short enough to allow for a wheelchair, and sat beside her through the service, making sure that she stayed hydrated. After the service, we waited with her until Access arrived, and then we went home and didn’t think much more about her.
Then one Sunday, another woman sitting with her, Sonya, verbalized a prayer of concern: Lori who was having a hard time because she was struggling with a housemate. Ann and I were stunned: “How does Sonya know that?” we asked each other. Then we shrugged and forgot about it.
Week after week, however, Sonya would voice Lori’s prayers, and then one Sunday, Sonya and Lori gave a sermon together in which Sonya told Lori’s life story, a story she had learned from Lori’s high school journals, her family and caregivers, and a series of very slow interviews.
When I returned to church after neurosurgery, I told Lori the story of a friend who had asked me if riding Access was fun. (Access, the county’s vans for people whose disabilities don’t allow them to ride the bus, bounces, shakes and rattles its customers around the city for two hours, no matter how close the destination.) We both guffawed at the idea that this might be fun.
Lori’s room is pink and red. She has a giant Ichiro poster from Seattle’s Mariner’s baseball team over her bed, a series of Mariner’s baseball caps, and long poster of the Storm Women’s basketball team. Otherwise, her art and photos of people who love her cover her walls.
Lori has a great sense of humor, a big spirit, an artistic sensibility, and a way of making connections that belies her disabilities. Her life is clearly meaningful, as is mine.
Our disabilities make us neither tragic nor heroic. Just human.
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?
-- Mary Oliver “The Summer Day”