the soul at the center
My mom is not herself, yet more fully herself than ever before. In a way she’s holding two selves within herself, like she’s a Russian stacking doll. There is her most broken self, where the disease lives alongside all those ways she wasn’t perfect. Then there is the heart and soul of her, encased in a body.
Alzheimer’s Disease robs people of so much and it’s cruel, but let me tell you about a brilliant light I see flowing from my mom; from the innermost doll, the hearty soul at her center.
My mom has always been a person of faith. She grew up in the Covenant church and was a member of a Baptist church for her entire adult life. Growing up with her as my mother meant being surrounded by evangelical Christians, church two to three times a week, and bearing witness to my mom running (alongside others, of course) a huge Christian music festival. In short, we were steeped in evangelical Christian things.
For most of my life I was afraid to share much with my mom about my growth, my widening views, my understanding of and love for people. It looked different from her faith. It wasn’t perfectly biblical. It didn’t fit some of the verses. So I knew that I would have to sit in a really tense and reactionary conversation if I brought up my reasons for my more “liberal” views on Big Issues. I knew she would say things like, “We can’t pick and choose what we believe from the Bible.” It was all or nothing.
Talking to my dad was always different, though that made me nervous, too. I began to distrust how these conversations would go with any evangelical Christian, even my own parents, and I have reasons. So many reasons. So many experiences in the church when I was not allowed to question, to express some doubt about certain views on humanity. I would get cold stares, reactionary shaming remarks, or at the very least, my thinking out loud would result in a room gone coldly silent.
This is why some beautiful conversations with my mom in the depths of her struggle with dementia have blown my mind. Or not even blown my mind, those words are not big enough. If only I had come to her living room two nights ago with a pen and paper as I updated my parents about something I have been experiencing with Christians in our community, and the heartbreak and PTSD that have been triggered in me. My mom, in the middle of her usual sundowning time, when nothing makes sense to her at all, when she doesn’t really know who people are, or that the couch she’s sitting on is her own, was (almost) completely lucid. Her mind is beyond broken, but a conversation about how the church loves (or doesn’t love) others was her jam. She spoke with clarity, profound words that resonated deeply with my heart. We matched up. Our souls were screaming the same holy messages in some sort of spirit world that I will call the mysterious and broad work of the divine.
I don’t know how to explain it other than to say that my mom no longer has the capacity to weigh the “sin” of others. She no longer thinks like she once did. She believes in Jesus. She loves Jesus. That seems to be something she cannot lose as her mind erodes, growing smaller, the synapse no longer able to snap together to stream thoughts into beliefs into words. I recognize this as evidence of how dangerous it is to think, think, think our way into belief. To simply regurgitate a regulated world of ideas that cause a great deal of harm in the world. What is left is my mother’s heart, soul, and spirit, and what she speaks from that place is pure love. Love that is stripped of “We love them, but…”
Because I did not have a pen and paper or a recorder and could therefore only have her words written on my heart, leaving my mind like everything leaves hers, I can only paraphrase now before I forget. It’s this simple, and the simplest things are the truest. She talked about love in a fully encompassing way. She said things about how loving people means loving them just as they are and being in relationship with them without pushing your ideas on them, or having an agenda. She talked about how that’s not real love. She spoke of a divine love that should only make us seek to fully accept everyone, all people, all the time, no take backs, no expectations, just an embracing.
I could not hold back the tears.
It isn’t that she didn’t love people well before dementia, don’t get me wrong. But she was a part of something, a religion, where people are welcomed into churches, homes, or lives at a cost to them. The expectation is to live up to a version of biblical standards and if that doesn’t happen, there is a level of discomfort people can sense. Or there is an ask, a requirement, or even a demand. Relationships would end this way, or for the most part, people wouldn’t really even want anything to do with any of it in the first place and I fully understand why. I struggled for years with not feeling good enough, not Christian enough; all of this programming shaping shame deep within me. A Russian stacking doll with wholeness and worthiness only buried beneath layers of lies about what love really looks like.
Both my mom and I are in a place where the great magical mysterious divine has pulled apart these Big Religous Thoughts, one doll at a time. And keeping it simple has never been so sweet. When I was leaving my parents home the night of this profound and moving conversation, my dad hugged me, as he often does. My mom doesn’t often think to hug me goodbye, so I usually sort of force her. To be honest, she’s never been all that affectionate. But on this night when our souls connected more deeply than they ever have, she said, “Now it’s my turn” and came at me with her arms open wide. We said our I love yous and it felt truer than it ever has.
