Sermonsgreen house project

A Red Riding Hood writing assignment

Nikita Lalwani

Nikita Lalwani

I have been taking an online  novel writing course through Curtis Brown Creative in London, under the mentorship of author Nikita Lalwani and with fourteen other novel writing peers.  The bulk of the work is evaluating 3,000 work segments of each other novels, but we also get little voluntary 500 word homework assignments we can submit for peer review as well.  This week, in which we focused on plot, the assignment was to take the plot of Red Riding Hood and “retell it so that the events of the tale take place in your time and in a real place known to you.”

The Predator in my Family
In my twenties, I hated that Robert Frost poem about the Road Not Taken. I imagined myself forever cut off not from one road that diverged in a wood but from dozens, each one leading to a better life than the one I had chosen.

My unhappy marriage broke me, and like the face of a mountain cracking, then sliding off, it demolished more paths leading through that bleak forest, or so I thought. And several years of dithering and depression swallowed up others.

Then, of course came therapy. I looked backward in order to move forward and saw how my parent’s dysfunctional marriage had affected my own, and that I had to deal with my childhood traumas, yada yada yada.

But something besides dysfunctional relationships had stalked my family. My mother had spoken of a predator—something that got into the brain. She told me about her visits as a child to the family farm in Ohio and her grandfather’s violent, incoherent rages after the predator got into him.

My grandmother, an austere woman—although attentive to her grandchildren when I knew her as a child—became more sweet natured and gentle after the predator overtook her. I didn’t understand, as a teenager, why my mother and grandfather seemed upset by this lovely old woman who was always smiling and happy, and reveled in my righteous adolescent indignation when my mother stopped visiting her.

When she ordered the autopsy on my grandfather and saw that the predator had been inside my grandfather’s brain as well as my grandmother’s, decades of paralysis overtook my mother as she waited for it to come get her.

I lost my cellphone last month. I know it’s in the house somewhere, lurking, the battery dead now. I remember the last time I used it, or I think I did, and I retraced my steps of the day I lost it and pulled apart the furniture. What did I do that accidentally turned the ringer off? My brother was absent-minded even before he became a professor, but the predator as stripped us of the ability to regard these things as harmless. I do not think much about other roads through the woods anymore. I just keep looking behind me, and I just keep trying not to trip.

My mother lives in a charming cottage now, called a “Green House.” Her fellow occupants are called “elders” and the staff called “Shabahzin”—the Persian name for midwives. The founder of the Green House movement had the idea that elders are being birthed into a new life.

And I’ll buy into that concept. I am happy she has put the smells and clatter of the nursing home behind her, the noise of the roommate who continually moaned “ithurtithurtsithurtsithurtsithurts.” Happier still, that she has lost her terror of the advancing predator and succumbed to it. On our visits, she often does not know who I am, but I think she knows I am someone she loves as she cocks her head, smiles, and looks up at me with curious, wide, wide eyes.

July 4th, 5th visits with my Mom: laughter, tears, and a bacon massacre

I made the 400 mile trip to Ohio again over July 4. One of the things that came clear to me during my sabbatical was the importance of seeing my mother as much as possible as she slips away, before she no longer recognizes me. (A nurse at the green house home in Bluffton told me on my previous visit over Memorial Day that I shouldn’t assume that moment is inevitable or soon, because she has improved so much since she moved from the Mennonite Memorial home into the house on Willow Ridge.)

My brothers and I had an agenda for this visit. My mother had been pastor at Oak Park Mennonite Church, which became Chicago Community Mennonite Church, and they are celebrating their 35th anniversary this year. My previous blog entry led to several communications with church members who wanted to include her somehow in their November commemoration. So Chris, Kevin and I tried to see if we could get some usable video.

We knew it would be hit or miss. To jog her memory, we got a cross from her room that an artist in the church, David Orth, had made for her and talked about her time in Chicago on a July 4 visit, but in the end just recorded ourselves saying, “Happy 35th Anniversary.” Afterwards we had lunch with her, and she looked at Chris and said, “You look so much like my oldest son Christopher.” One of the shahbazim, the name given the helpers in green houses, told us of the conversation they had had recently about a member of the Oak Park congregation who had adopted two brothers, confirming that the memories are still there somewhere.

The next day, two people who had been members of Mom’s congregation—one living in Bluffton now and one visiting from Chicago—came to visit. We talked some more, took some more inconclusive video. We got out a ceramic bowl from her room, into which members of the congregation had put slips of paper expressing their gratitude for her ministry, and read them to her. Jan talked about her wedding, at which Mom had officiated. Mom was thinking hard, and I think she almost did remember the ceremony. I have the impression that her thoughts come two her like those power point slide presentations, with images presenting themselves, and then dissolving into other images, and she just doesn’t have the control any more to freeze the frame to take a closer look.

But the hours we spent over those two days were actually a lot of fun. We spent most of the conversations laughing. Mom would even laugh at herself when she would make a wrong word choice—“instret” instead of “insert” for example. And when my vegetarian brother picked the bacon out of his baked beans, she called it a “bacon massacre” which we all thought was pretty funny, including her. I asked her if she wanted some baked beans, and she said, seriously, “They’re wild but senseless in their displays.” Decided that was “no.”

Anyway, the mood was light-hearted when it came time for us to go on July 5, our final visit. Chris stood up and said that he and his wife, Cookie, would come to visit in a few weeks, and then everything changed. Her facial expression became lucid. It was as though she saw for the first time that her beloved oldest son was there in front of her—and now he was leaving. “Where have you been all this time?” she asked, tears filling her eyes. Chris again assured her that he was coming again to visit soon. I hugged her, and told her that I would be skyping her on Friday; she would see me on the computer. She just looked at me, helpless. Was I her daughter, or just some kind stranger, calling her “Mom?” As we left, one of the shahbazim put on some music that Mom likes to listen to as she naps, and I thought I saw her smile as Chris and I walked out the door. Chris told me in the car he thought she was smiling because she heard our voices conversing as we left the house.

But I called the house that night anyway, to see if she was okay. A shahbaz that came on at 2:00 p.m. told me that Mom had been fine when she started her shift; that I shouldn’t worry. And we should probably cancel the Toledo Blade, because Mom doesn’t even look at it anymore.

It’s not fine.

It’s not okay that my brothers, sister and I all live more than 100 miles away from her in four different states.

It’s not okay that I felt a fleeting moment of jealousy that she recognized Chris and I wasn’t sure she recognized me when we said good-bye.

It’s not okay that I thought as we left, “In another two minutes, she’ll forget how sad she was.”

It’s just not okay.

Mom, me, Jan Wiebe, Elizabeth Dyrst with cross by artist David Orth on chair arm. I am holding on my lap the ceramic bowl with slips of paper from Chicago Community Mennonite congregation thanking her for her ministry.

Alzheimer’s, my mother and my future novels

This year has been one of “lasts” regarding my mother. I drove the seven hours from Rochester, NY to Northwest OH for Christmas, because I thought it would probably be the last Christmas she knew who I was. I made the same trip this Memorial Day weekend, because she has recently moved out of a nursing home and into a group home with ten other residents. These homes, called green homes are set up to be far less institutional than nursing homes, and allow family members to spend the nights, if they choose, so I thought I would take advantage of her new situation and stay with her for the weekend so we could have intensive time together.

Mom and me in 1962

Mom and me in 1962

I am too tired to come up with come up with something less clichéd than “I experienced a mixture of emotions.” The staff at my mother’s home were truly invested in her happiness and all talked about how much my mother had improved mentally and physically after the move. She rarely uses her wheelchair anymore, walking with the aid of staff around the house. I saw that she was less anxious, less concerned that she was doing something wrong than she had been at her previous nursing home. And for most of the time, when she was not sure I was her oldest daughter, she knew I was one of her children, and when she was not sure I was one of her children, she knew I was someone she loved.

Mom and me in matching mother/daughter dresses, some time in the 1960s

Mom and me in matching mother/daughter dresses, some time in the 1960s

Her grandfather and both of her parents had Alzheimer’s disease and for decades she lived in terror that one day she would have it too. Because one of the residents in the home had died this weekend, staff was short-handed, so I helped one of the male “shabahzin” as they are called in the green house lingo, toilet her and get her ready for bed one evening. I thought as I did so, that something like this was exactly what she never wanted to have happen: that one of her children would be involved in helping her this way—and she would have been doubly appalled to have a male staff person, even one so gentle and professional—handling her intimate care. But I guess one of the blessings of the disease that has stolen her sharp, funny, intellect is that she has reached the tipping point and is now past caring.

“Valiant” is also a cliché when paired with “effort”, but that pairing really is the best descriptor for the conversations she tried to have with me. I saw how exhausting it was for her to find the right words, to find the ends of sentences she began, to hope I knew what she meant when she said things like, “I believe we will need to hop on over the lettuce keeper.” As I noted above, she overall seemed less anxious than in her previous facility, and the staff told me she is generally fairly relaxed, but the presence of my sister and me I think triggered in her some sense of duties she had not accomplished. She kept saying she was not wearing her watch and she was afraid of missing meetings and buses. I had to keep telling her she was retired, and she wasn’t missing anything, knowing that I was casting some sort of light that she was groping toward, wanting to grasp but never quite touching, and that the effort was causing her to feel that she had failed at something, but she wasn’t sure what that something was. It was my job to tell her that she had already made it. We were together in the Light.

When I left to drive back to Rochester on Memorial Day, I told my mother, “I will miss you.” As we embraced, she said, “God bless you.” The simple exchange felt like liturgy.

Mom, my sister Carolyn and me, Memorial Day Weekend 2013

Mom, my sister Carolyn and me, Memorial Day Weekend 2013

This Alzheimer’s heritage is a sobering one for me, at age 51. In 1993, I decided to become a human rights advocate with Christian Peacemaker Teams instead of pursuing an MFA in writing. I usually do not regret this decision. The work has been meaningful and brought dozens of interesting and dear people into my life. It has also garnered me writing assignments from publications I would not have received otherwise and provided material for my novel manuscripts. But as I struggle with social media and watch young people in their twenties and thirties with MFAs navigating more knowledgeably through the publishing world, I feel wistful, at times. My dream as a young person was always to devote most of my time to writing novels. None of the three I’ve written have been conventionally published and I’ve always had to take time off from CPT to finish the ones I have written. And now when I look at the future, I wonder how many years of novel writing my brain has left in it: Twenty? Fifteen? Thirty?

One thing I have decided to do is not live in terror of debilitation. Alzheimer’s does not run in my father’s side of the family. Terry Pratchett actually wrote two of his novels after an early onset Alzheimer’s diagnosis. Most importantly though, if Alzheimer’s happens, it happens. Living in terror will not make it go away. So I will not let the possibility of dementia paralyze me in the present. I will keep writing as long as the books keep coming to me, and they show no sign of stopping.