Alzheimer's Sucks!

I lost my cool when I was visiting my parents over Christmas. It was after 11 pm and when I went into my room to get ready for bed all my dirty clothes were gone. My mom had folded them and put them away in my dad’s dresser. “Mom, you really messed up. I just wanted to go to bed and now I have to deal with this.” She immediately started trying to fix the mess she’d caused. She grabbed random objects asking, “Is this what you’re looking for?” which easily could have been sweet, but just ticked me off. My mom had no idea what was going on, but she knew I was mad and she knew it was her fault. She looked so sad and my dad just hugged her and said, “Ginny, I love you so much. You are so kind and you didn’t do anything wrong.” I felt like garbage. 

I calmed down, sat at the dining room table, and read 1 Corinthians 13: “Charity suffereth long, and is kind… is not easily provoked.” I hadn’t been kind and I had most definitely been easily provoked. The next morning I apologized to my mother for being unkind and she had no clue what I was talking about. She just told me she loved me. It then occurred to me that I could measure my integrity by the way I treat someone who would have no memory of how I treat her. 

I made a commitment that I wouldn’t be unkind to my mom again, that I would be as patient as I previously thought I was. I spent two weeks at home in May and I did an excellent job (if I do say so myself). The two weeks I was home in July were a little harder. She kept taking my stuff and “putting things away.” Even some of the stuff I hid she found. It was a losing battle that I just gave up on. She’d come into my room wearing my clothes and I’d say, “Oh mom, that’s my shirt.” She’d then change, hand me the shirt she’d just been wearing while wearing a different shirt of mine. I mean, I don’t blame her. I have some rad t-shirts. But it was still maddening. And I’d say to myself, “Be kind, she doesn’t know what she’s doing. It’s just a shirt.”

My mom loves to help so much so I’d give her any tasks she can still do. I asked her to fold my laundry last week (which had been washed this time) and she was thrilled to help. She then dumped it all on the dirty floor. I said, “Mom, why’d you put my clothes on the floor?” And immediately I had the thought, “What’s more important? Your clothes or your mom’s feelings?” I then self-corrected and said, “Thank you so much for folding my laundry, mom. You’re so kind and helpful.” She smiled and said the most genuine “you’re welcome” a human being could utter. 

I’m sure most parents have learned this lesson years ago, but I’m just learning that feelings are more important than my stuff. I told myself this a lot whenever I would start to get frustrated. “Mom’s feelings are more important than your clothes, Ben.” 

When my mom was diagnosed with Alzheimer’s on September 1, 2016 I started to wrap my head around the reality that she would forget me and that we would have the same conversations over and over again. And for some reason I knew I could handle those moments. What I was completely unprepared for was that she would lose her ability to make any sense. The way my mom talks now is like if you repeatedly press the predictive text button on your phone. All the words will run together and flow, but they make no sense. That’s how my mom talks. I generally have no idea what she’s talking about because she uses so many pronouns without ever giving the antecedent. 

On the 4^thof July my mom mentioned wanting to do something so we went on a walk. Since we had just been on a trip to the beach I decided to talk about future trips while we walked. “Where would you like to go on our next trip?” Gibberish. “If you could see any place, what would you like to see?” More gibberish. “What places would you like to visit?” Completely unintelligible response. I almost began to cry right there on the sidewalk realizing that my mom, though present, was unable to have a conversation with me about vacations. 

I pulled out my earbuds and put one in each of our ears and I played John Denver’s “Country Roads” because my mom loves that song so much. As usual, she tried to sing along, but mostly just mumbled with a huge smile on her face. I love that song now, too, because it says Virginia (my mom’s name) and momma (no need to explain that word). I played some more songs and she would make comments, laugh a lot, and we did a bit of dancing as we walked down the street. When we got back to the car she said, “Already? I want to keep going.” She just really loves being with me even though she can’t explain where she wants to go on vacation.

I’ve come out to her a number of times because I think it’s fun. But it also makes me nervous because I don’t know how she’ll react. “Mom, I’m gay.” “You’re… gay…,” she says the words slowly trying to understand them. “What do you think about that?” I ask. “Well, as long as you’re happy and you get to do the things you like to do.” That’s what she always says, “Do the things you like to do.” She just wants everyone to be happy and do the things they like to do. “How was your day, mom?” “Well, it was a lot of fun. I just did the things I like to do.” 

A few days ago we were on a walk at the marina. Since she’s not so good at answering questions I’ve started to just tell her things about her life and she’s always so delighted. 

“Mom, did you know I’m your son?”

“Really?! My son?”

“Yep, you actually have four kids. I’m your baby and your favorite.” (If there’s one thing I’ll go to hell for it’ll be constantly messing with my mother and tricking her into saying that I’m her favorite child. I’ve only done it a few dozen times.)

“I didn’t know I have children. Wow!”

A few minutes later we’re back in the car. As I drive she puts her hand on my arm and says, “Thank you for telling me what you told me. I didn’t know. I’m just so lucky to have you. You are so nice and so kind to me and just an amazing guy. You are a great son and there’s no one better.” That’s Ginny Schilaty. The most affirming woman in the world. Alzheimer’s has taken so much from her, but it hasn’t taken that. 

Now I’m back in Utah with a mix of emotions. So happy to get back to regular life. Missing my parents and wishing I was home to help out more. But also relieved that I don’t have to. And I feel guilty that I feel relieved. But I know exactly what my mom would say if I told her that. “Don’t feel guilty, Ben. You are such a good son. Just go and live your life and don't worry about us. We’ll be fine. Do the things you want to do.” 

Pride Is the Opposite of Shame

I have two rainbow pins displayed on my backpack. Each of them containing a symbol that ties them to BYU. They’re rad because they reveal two pieces of me to whomever is standing behind me. I had owned both them for many weeks before attaching them to my backpack. Each pin was placed on my backpack following an incident that made me feel misunderstood as a gay Latter-day Saint. I put them on my backpack because I felt like gay people like myself needed more visibility. 

I distinctly remember walking across BYU campus the day I put the first pin on my backpack, feeling proud to be seen. I walked by the Harold B. Lee library where I had once secretly read a handful of books about how to overcome same-sex attraction. Now, ten years later, I was walking across campus with a small circular object advertising the thing that had brought me so much shame for much of my life. 

I also wear a rainbow ring on my right ring finger. My aunt gave it to me for Christmas. At first I thought it was a bit loud, but now I like it. Maybe because I regularly get compliments about it. I always reply, “Thanks! My aunt gave it to me.” 

I often don't do anything for Pride month. I don’t really enjoy parades and festivals aren’t really my thing.  I don't hang a rainbow flag, or change my Facebook profile picture, or paint my face. But a lot of people do. I know that Pride makes a lot of people uncomfortable. It might feel “in your face” or flamboyant. While I might not do much to celebrate Pride month this June, I can understand why so many people feel the need to celebrate.

I remember times in my 20s when I would’ve been relieved if I had been diagnosed with terminal cancer. I would’ve been free of same-sex attraction, my suffering would be over, and I could die a hero. Being dead and straight was a better option than being alive and gay. That’s what shame did to me. It made me want to be dead. 

Overcoming that shame took years. The antonyms of pride—depression, gloom, melancholy—were often present in my life whenever I thought about dating, marriage, or my future. I don’t feel those feelings anymore when I think about my sexuality. The shame is gone. I now accept my sexual orientation as something that I couldn’t change. It is a part of me. And I want to live for a very long time. My outlook has completely shifted from wanting to be dead to wanting to live a long, full life. And isn’t that something worth celebrating? 

My story of growing from shame to acceptance isn’t that unique. So many LGBTQ folks have walked a similar path. So when I see a mom hang a rainbow flag from her front porch, I don’t think, “c’mon, keep your life to yourself.” Instead, I imagine a mom who was once uncomfortable and ashamed to have a gay son who is now saying, “I love my son. All of him.” When I see my friends dressed in rainbow colors marching down the street I don’t see them as being flamboyant, but I see them celebrating their desire to live. A desire that they may not have always had. And I’m grateful. 

I’ve only been to one pride parade. It was September 2016 in Tucson, AZ. I had been invited to march with Mormons Building Bridges. Those who march with Mormons Building Bridges wear their Sunday best to let the LGBTQ community know that as Latter-day Saints we want to be at the forefront of expressing love and compassion. I was hesitant to go. I decided to go and then decided not to go a few times. I recall discussing whether or not go with my straight friend Josh. He told me that if I decided to go he would go with me. I even emailed my stake president asking if it was okay for me to march in a pride parade. His simple response was, “I trust you.” About an hour and half before the parade started I felt compelled to go. I texted Josh, we both put on our church clothes, and drove over to the parade area. 

There were only 14 of us in the Mormons Building Bridges group. One of the women who came was from the Spanish branch I was attending. She didn’t speak English and told me that her son had just come out to her and she wanted to walk in the parade so that he knew she loved him. While we were waiting for our turn to march the organizer of the parade greeted us all. She said she had grown up Mormon, but had left the Church in her 20s. She told us how touching it was to see us there. 

Josh and I were asked to hold the Mormons Building Bridges banner. As we walked down 4^thAvenue I distinctly felt the presence of the Holy Ghost. Spectators shouted “The Mormons are here!” and we were cheered and cheered. It was a deeply moving experience for me to be in a pride parade dressed as a Latter-day Saint. We could have easily been booed, but instead we were welcomed and praised for our participation. We belonged the least of any group there and yet we still belonged. And those who saw us were adamant that we belonged and that they were glad we were there. No one was ashamed of our presence. One of the parade officials took a group picture of us after the parade. She said, “Thank you, thank you, thank you for coming.” I hope that any LGBTQ person who attends church will feel as welcomed as I felt at that pride parade. 

I don’t think I’ll be hanging a rainbow flag outside my house. I probably won't wear a rainbow tie to church like my dad does. That doesn’t really feel like my thing. The way I show my pride is by telling my story. I show my pride by allowing myself to be seen. I show my pride by inviting others to walk in my shoes. 

BYU Museum of Art

And if the word pride makes you uncomfortable, here are some synonyms that might be easier to relate to—dignity, self-respect, honor. Gay dignity means that I am comfortable being myself around others. Gay self-respect means that I welcome all parts of me as important ingredients to who I am. Gay honor means that I no longer want to die because of my orientation.

June is a healing, celebratory month for so many people. I hope that we can celebrate our lives and who we are and who we want to become throughout the year. And I hope that every person, especially those who have been previously weighed down by shame, feel an overwhelming sense of dignity, self-respect, and honor.