Thursday, May 26, 2022

Remembering Alison

Last Friday I learned that my friend Alison had passed away earlier that morning. She was diagnosed with cancer just the week before and then she gone. She is one of a number of people who have opened their door to me and made their house my home. 

In the spring of 2015 I needed a new place to live in Tucson. My friend fun Laura sent me an advertisement that had been emailed to everyone in her master's program about a retired woman looking to rent a room to a female international students. I definitely did not fit that description, but I was intrigued. I emailed her anyway and she invited me over to the house. A few days later I pulled up to the house and said out loud to myself, "I want to live here." We hit it off and I moved in a shortly after that. 

It's always a bit awkward moving into someone else's house, but Alison made me comfortable immediately. When she showed me my room she said, "The last tenant had her bed over by the window, but personally I'd put it by the wall under the A/C vent." I agreed and moved the bed. 

I talk about Alison all the time when I give firesides. She's one of the "retired lesbians" I always talk about ("They were retired professionally, not from being lesbians."). I also mention Alison and her partner in my book and in my TEDx BYU talk. Alison was so honored to be part of my story. She asked me not to use her name and I honored that request. When the first box of books arrived I mailed her a signed copy that day. After reading it she said, "Why did you write this for Mormons? Everyone needs to read it!" Alison always believed in me. 

Our house became a central hub of LGBTQ Latter-day Saint gatherings in Tucson the year and a half I lived there. I'd always ask Alison's permission before filling her house up with people yet again. She was always so happy to have us gather in her home. When I'd tell her about some event I was planning she would sometimes put her hand on my shoulder and say, "You're doing important work. I'm so proud of you." 

Alison wasn't shy about complaining or pointing out an injustice in the world or something that just wasn't working. One day she was complaining about something related to the house and I asked if there was something I could do differently. She said, "Benji, you're a prince." Only a few people in my life have ever called me Benji. 

One day I was leaving for school on my bike and Alison was out in the front yard. I had my headphones in and no helmet on. In a stern voice she said, "Ben, please tell me..." and I was prepared to get a talking to about the importance of helmets and not listening to music while riding, but she ended the end sentence, "...that you're wearing sunscreen." "I am!" I replied. And then she waved goodbye as I rode off to school.

I typed the first words of my dissertation sitting in Alison's living room. She had completed a PhD decades before and told me stories of writing on note cards and legal pads and then paying someone to type everything up on a typewriter. So different than me sitting with my laptop using a word processor.  We often talked about my school work and how much things had changed. It was quite a gift to be living with someone who had written a dissertation while going through that grueling process. 

Alison's house
Alison and her partner were in Seattle in June 2016 while I was home visiting my parents. My parents wanted to meet them so we had them over for dinner. My mom and I went to the store to get food and she had trouble figuring out what to buy. Then when we got home she couldn't figure out how make the dinner. This was my first clue that something was not right with my mom. Alison and her partner came over that night and we had lovely time chatting and I was thrilled that they got to meet my parents. Two months after that dinner I was sitting in my bedroom in Alison's house in Tucson when I got the news that my mom had been diagnosed with Alzheimer's. That's where I first cried about losing my mom. So many important memories in my life, good and bad, are tied to my time living with Alison.

In the days since I've learned about Alison's passing I've spent a lot of timing thinking about her and her impact on my life. Our friendship was so random and unexpected, and yet it was exactly what I needed. She didn't always understand why I made the choices I did, but she always honored those choices and cheered me on.

I have this thing I do when someone I love dies. I pray that some of my relatives will greet that person in the Spirit World and thank them for helping me here on earth. I believe in an afterlife and I hope that Dorothy and Walt Schilaty and Malvene Grimshaw and Monty Smith have gotten to talk with Alison and thank her for all she did for me. Alison was Buddhist and she cared deeply about people, the planet, and all living things. I was one of those living things that she loved. And I was lucky enough to be her family. 

Sunday, May 15, 2022

She Doesn’t Dance Anymore

Alzheimer’s destroys a person slowly. The brain gradually builds up plaque and stops working little by little. It’s hard to notice the change when you’re around the person every day. But you notice when you’ve been away. Before this visit I hadn’t seen my mom for more than four months. I noticed the change.

I think the clearest memories of my mom with dementia will be from 2020. I spent a total of four months staying at my parents’ house that year. That time really was a gift. My mom was so thrilled to do literally anything with me so we went on walks, took long drives, read books, watched shows and explored lots of corners of western Washington. She watched three entire seasons of Stranger Things with meNot a show that Ginny Schilaty with a fully functioning brain would have liked. When an episode would end, she’d say, “Wanna watch another one?” And I’d say, “I guess we should.” 


My mom has been so active which has caused a lot of trouble. She’s always “cleaning” or “putting things away” which mostly just causes chaos. But in her mind she’s helping. During the months I spent at home in 2020 I spent a lot of time reading to her because it kept her from “cleaning” and gave my dad a break. She’d sit and listen for quite a while even though she had no idea what the books were about. Sometimes I even read to her in Spanish (a language that she is zero percent fluent in). I tried to read with a lot of inflection to keep her interest and every page or so I’d ask her what she thought. She would then mutter a bunch of random words strung together and then when she was done I’d say, “I think you’re exactly right,” and then get back to reading. 

I definitely can be selfish and impatient so during her nonsensical jabbering sometimes I’d text someone or read silently on my phone hoping she wouldn’t notice. One time I was doing this and paying zero attention to what she was saying and then she finished her thought, “So you really could make quite a bit of money.” If only I’d been listening. 


My mom loves being at our house and when we were away on outings, she’d often ask to come home. As a way to distract her, my brother, nieces, and I would start dancing. She’d join in the fun and for a few minutes forget she wanted to go home. Then when she brought it up again, we’d start dancing and she’d laugh and dance and forget about going home. It became a thing we’d do all the time. 


In February 2021 she was moved to a memory care unit. My dad had been her primary caregiver for five years. Most husbands only last a few months. I visited her a few times that year at her new home. We went on walks and played catch and I read to her on the rocking chairs on the porch. When she’d see me, she’d light up and give me a big hug. 


This visit has been different. If I were to describe my mom now the main word that comes to my mind is vacant. She’s there, but barely. When she saw me for the first time in four months this past Sunday, she gave me a hug, kissed my chest, and said, “I live you” (not a typo). I asked her questions and tried to talk to her, but she was just so vacant. I’ve been back a few times this week and one day she was more present, but mostly she was just there and yet not really there. 


I tried to read to her. Before she would nod her head along like she was listening. This time she just stared off into the distance. Before she would sit and listen for a long time. This time after about 30 seconds she started to stand up to leave. “Mom, can you sit down please?” She didn’t sit down. “Mom, I need you to sit down.” And then I tugged on her hand and she sat down. This happened about 15 times. 


When we went on a walk, she pointed out our car out of the dozen or so in the parking lot and said, “That’s my shar.” Strange that she remembers her car. I tried to get her to dance like before. She smiled but didn’t get the game. That day a friend asked me how my mom was doing. “She doesn’t dance anymore,” I said. 


This week I posted some pictures on social media of visiting my mom. A selfie with her on Mothers’ Day, her holding hands with my dad, us going on walk. But what doesn’t come through well in those stories are the serious conversations we’re having. Does she even know we’re visiting? How much do these visits matter? What is best for her? But she is still mom so we keep visiting. 


There’s been some crying this week. My dad cries almost every time we drive away. And he cries when he hugs her and tells her he loves her. One day he cried saying that he thought the end was coming and that she wouldn’t be around much longer. Tears because she’s alive and it’s sad, and tears thinking of her dying. There’s sadness no matter what happens. Sadness because she’s still here but mostly gone. Sadness because someday she’ll be completely gone. It’s sadness that comes from loss. A slow, gradual, painful loss. There is no winning with this disease. It’s all just so sad. 


Recently I was reading volume three of Saints and came across this lighthearted poem written by Susa Young Gates: 


When I have quit this mortal shore

And “mosey” round this earth no more

Don’t mourn, don’t weep, don’t sigh, don’t sob

I may have struck a better job. 


Two days after my mom’s diagnosis in 2016 I got a call from Kevin’s dad Ken who had become my adopted father in Tucson. I had emailed him and the rest of their family to tell them about my mom’s diagnosis. Ken called me to see how I was doing. I told him how much my mom loved to serve and help others, and how it broke my heart that Alzheimer’s would take that from her. Then I started to cry and said, “But I know that someday she’ll be whole again and she’ll get to serve and love better than ever before.” 


I’ve mourned, I’ve wept, I’ve sighed, and I’ve sobbed. Ginny Schilaty deserves an existence of dignity, productivity, connection, and service. Alzheimer’s has taken so much from her. And yet I know that because of the Atonement of Jesus Christ she’ll strike “a better job.” And she’ll dance again.