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, 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.”

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.
He maketh me to lie down in green pastures: he leadeth me beside the still waters.
He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
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.
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
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”

Saturday, May 7, 2016

Do You Hear What I Hear?

“I don’t think there’s any shame in losing my hearing,” says Zelda*. Her blue eyes glint in the way they do when she is angry. She sits straighter and taller than the others, her white hair swooped from her face. She continues, “If I can’t hear someone, I just say, ‘Speak up!’ They should speak up. It’s normal to lose your hearing when you get old.” And again she says, “There’s no shame in it.”  She’s defiant, daring any us to contradict her.
Fifteen of us are in the Assisted Living facility’s theatre discussing Miller Williams’ poem “Going Deaf.” I lead this weekly poetry group, and we are again discussing issues of aging that a poem has raised.
Though I am 52 years old and these residents are decades older than I am, we have a good deal in common. Our lives—theirs and mine—are changing because of health issues: theirs, issues related to aging; and mine, disabilities that resulted from two brain tumors, four surgeries, and six weeks of radiation. Like many of my elders, I struggle with balance, so I walk with a cane. I don’t see well and need 20-point font to read. I’ve lost some of my hearing and wear a hearing aid, but sometimes I still can’t hear and might pretend I know what someone has said in order to continue the flow of a pleasant interaction. Like many of these residents, I have seen the eternal footman hold my coat and snicker. And I was not afraid. Our changing lives remind us all of our mortality, and we come together weekly to celebrate poetry and beauty in each wild and precious moment.
I’ve come to this facility as part of my degree program for a Masters in Social Work. Four years ago, when I left my job in high schools because my disabilities made me ineffective and—some thought—unsafe, I began looking to do work where I could again contribute to others’ lives, but now in a way that I could do effectively with my disabilities. I decided to learn to support people like me, people with life-changing health conditions.
I love this work. It’s an opportunity to help people connect with poetry and with each other, requiring skills and knowledge needed in my 27 years of working in high school Language Arts classes.
When I arrived at the facility this morning, I visited Maggie*, who remembers my name some weeks, and to whom on other weeks I look only vaguely familiar. When she came to the door today, she looked at me for aconcentrated moment, cocked her head, and said, “I know that you are familiar, and I believe I like you. Yes, I’m sure I like you, but I don’t remember you. When I told her my name and the important detail that we both love poetry, she said, “Please come in, and we can talk a while.”
Maggie was in a philosophical mood and talked about the ways that “Classical Freudian Psychotherapy” in her twenties changed her life. She’s had to learn to trust and forgive, and she began practicing at this time. She shared with me her learning: “Trust is the end of separation between you and another. It’s recognizing that we are one…. Forgiveness is the same…. It’s like breathing. It’s a practice. You don’t say, ‘I’ve already breathed today.’ You must practice and practice.”
After our talk, I went downstairs to set up the theatre where the poetry group meets, and then ate a quick lunch in the staff room, a walled off part of the garage in the basement that brings to mind the servant lunchroom in the t.v. show “Downton Abbey.”
Like my elders, my life has changed, and I am learning to live with the changes. Nine years ago, on May 8, 2007, I had neurosurgery to remove what my neurosurgeon called a slow growing but large, nasty brain tumor in a tight spot from my fourth ventricle and brain stem. Almost three years later, I had another fourth ventricle tumor, this one a baby the size of an ice chip that melted after six weeks of radiation like the Wicked Witch of the West.
I’ve had disabilities, especially fatigue, imbalance, and double-vision, since those treatments. Though I am grateful to live my one life, I now have disabilities that mean I live much differently than I did before: remembering that I can no longer work to earn a living wage, hike in the mountains nor travel the back roads of lands whose customs and languages are foreign to me makes my whole body tense with sadness. When I am outside, I am on high alert for dangers like broken sidewalks or teens absorbed in their phones. The sound of a skateboard behind me makes me gasp with fear. I grip my cane and hold my breath until the danger passes. Then I tremble as I continue my wobbly journey.
Once a week now, I lead this poetry group in which about twenty people gather in the facility’s theatre to read poems around a theme. Almost all elders in this club and at this facility have memory loss, for some more advanced than for others.
Each week, as soon as I arrive at the facility, I xerox the next week’s poetry (I now stay a week ahead, in case the machine goes down), and check individually with a resident or two. At noon, I arrange the theatre, moving chairs so that participants can see and hear one another as well as the big screen. Then I go downstairs for a quick lunch.
After lunch, I troll the restaurant, inviting residents to Poetry!. The residents always greet me warmly and often make me laugh. Zelda, who comes to Poetry! every week, eats lunch by herself. When I walk towards her table, she looks up in a friendly way, though I’m not sure whether or not she recognizes me. I introduce my name, as I do with all residents, and she takes my hand, part shaking hands and part holding hands. I tell her that I lead a poetry group at 1:30 (so she has plenty of time to finish her ice-cream), and I would love for her to join us. She has blue eyes that sparkle kindly with a bit of mischief, and she asks, “Do I go to Poetry!?”
I say, “You do.”
She says, “Maybe I don’t like it.”
I say, “You love it. And you love me.”
She laughs, and her eyes sparkle even brighter. “All right then,” she says. “I’ll be there. Where is it?”
I tell her, and she says, “I hope I remember. I’ll try to remember.”
For the first few months, I’m pretty sure she didn’t recognize me or our ritual, but now I think she does. We repeat it each week nonetheless, and we both enjoy the connection. When we read poetry together, I know that her insights into the poems will be so sharp that she will challenge me to re-hear poems I’ve heard for years.
Poetry! isn’t all unicorns and rainbows. There’s a good amount of negotiating where people sit, and people with walkers and wheelchairs seeking places up front that feel supportive to them. People who struggle to hear and see need to sit closer to the front, too, though they’re likely to head to the back. When I ask residents who struggle to hear to move up front, they cup a hand around an ear, cock their head, and say, “What? I can’t hear you.” This is intended to be neither ironic nor humorous.
When a resident with a quiet voice reads, another resident who struggles to hear yells harshly: “Louder!”
One or two people ask, “Why am I here? What is this?”
The ones who remember say, “This is Poetry! Be quiet.”
I love this work and the residents in much the same way that I loved teaching and my high school students. This work again brings me the joy of connection to poetry and people.
After Poetry! ends, Maggie, and Judith stay behind to sit with Pearl* while she waits for care managers to help her from get back into her wheelchair. The residents tell me how much today’s conversation meant to them. They talk about the connections they are building with one another, and Judith looks at me squarely to say, “We’re not going to let you go, you know.”
Thirty minutes later, when Pearl’s care managers arrive to help her into her wheelchair and back to her room, I feel warm with the kindness of this community. We say good-bye, and Maggie rocks, “One-two-three” and rises to her walker. She closes the day with a voice performance of a very long poem from memory, as she often does. Then she turns to me and smiles. I think she is  going to say thank you, but she says, “Who are you?”
“I’m Mary,” I say to her. “I lead Poetry!.” And to myself, I say, “Beyond that, I’m still learning.”

*All residents’ names have been changed.