It was a warm autumn, which meant that even late into October, the trees still held on to most of their leaves. But the storm changed that. After the storm, whatever remaining leaves the trees had were gone. Climbing out onto my fourth-story fire escape, I could peer into the distance and see things that were not visible before—storms are like that sometimes, revealing the invisible. Looking south, I could just begin to make out the gray buildings of Boston’s skyline.
I felt for the trees that autumn and every autumn after. At the mild age of 30, I was losing pieces of myself faster than I could replace them. My childhood, my relationships, my hopes for the future, and at times even my sense of humor.
I did my best thinking on my fire escape. All my thoughts (good, bad, and ugly) would come and go like “passing clouds,” just as my therapist had suggested I observe them. Of course, I hadn’t seen her since I moved from Pennsylvania last June. She appeared to be my age, but with impressive calmness and wisdom. She listened and pondered and witnessed my journey, which in hindsight must have been an incredibly emotional experience for her. During our last session, she finally disclosed, “I have a parent with early-onset Alzheimer’s too.”
My mom was also losing pieces of herself faster than she could replace them. Her memory, her home, her language and emotions. She hademotions, but as time went on they seemed less and less grounded in reality. At times, she was expressionless and still, other times irritable, other times she was sad for all the injustice of the world. Sometimes she displayed this childlike sense of bliss and cheerfulness, skipping down the halls of her memory care facility. She was in a dream-like state. Observing her made me feel as if I was in a dream-like state. Some days I could help her try to put the pieces together; other days I was grateful she remembered my name.
“It’s me, mom.”
“No, Ann Marie.”
“Oh, of course! Ann Marie! Hi honey, how are you? Carolyn… can you help me with this?”
Some people think Alzheimer’s is simply a disorder of forgetting. That if you merely remind the person of the relevant facts or details, then you can set things right. But the confusion extends far beyond this. Alzheimer’s (from what I have inferred from my mom’s perspective) is like trying to navigate through a new city. You get lost. At night. And then your headlights go out. Then you ask for directions, but someone answers in a foreign language. Then you find a map, but you lose your glasses. And suddenly “north” is a concept too difficult to understand.
You never find your way home.
She started declining when I was in graduate school. I remember sitting in lectures about the brain, about cognition and perception and the various “dementia processes.” My professor would recite the symptoms without inflection in an emotionless black-and-white tone, as I lived them in colors that were all too vivid.
Sometimes I wonder if I am jaded by my education. Some people talk about how a person with Alzheimer’s chooses to “let go” or “decide when it’s their time.” I wait patiently for this serendipitous moment, unsure if it will even come. All I keep thinking about is how my mom’s brain is shrinking, tiny neurons dying one at a time like fading stars in a dark night. She will never find her way home.
In Boston I am part of a support group with people who live their lives with amazing compassion and courage. I hear their stories about coming home to rotting food in the fridge, laundry that has stagnated in the washing machine, and wads of cash in odd places. Stories of feeling so alone and yet being too raw for human connection. These stories resonate with me.
Sometimes losing pieces of yourself can be beautiful. You can lose the pieces that no longer fit, that prevent you from growing, that weigh you down. We are not bound to a single moment in time; we can grow and let go. The trees do it so vividly every autumn. But we are not trees. When someone you love has Alzheimer’s, losing these pieces is never-ending and devastating. There is always something left to lose, something left to grieve.
From my fire escape the city is vibrant and my life is ostensibly normal. Since moving here, I have learned to embrace small joys in life. I have explored new restaurants with friends on a quest to find the best lobster roll in Massachusetts. I have returned to tap dance on Saturdays. I play the acoustic guitar. Since findings lights and a helmet, I have taken to riding my bicycle in the city streets, on bike lanes and “sharrows.” I drink coffee and paint.
When I walk through the Boston Public Garden, I am almost overcome by the sounds of children and street performers, by the sight of willow trees and swans near the water. I see old couples on park benches. Statues and fountains and roses. And there is me… a cliché with skinny jeans and blond highlights and a Starbucks latte. But the city is alive, and I am a cog in its beautifully poetic machine. It is quite the contrast to a sleepy memory care unit with quiet bingo and “easy listening” hits on repeat. I wish she was here. She should be here.
We should be shopping on Newbury Street and swimming in Walden Pond and sharing cannoli at Mike’s Pastry. Instead, I learn about which grocery store isle has the Depend Underwear and ponder whether it will matter if I visit her on Thanksgiving Day or the day before. Sometimes I write her letters she will never read. Sometimes I read old letters from her and realize that there was so. much. love. There cannot be grief of this magnitude without it.
Looking out from my fire escape, I try to find it: the reason why all this had to happen. It is so hard to look at the trees during winter and imagine the bright spring colors growing within them. But they are there. Through immense loss, we are also able to choose which pieces we keep. When there is nothing else left, I choose to hold on to love. After the storm, after we lose all the pieces of ourselves we are meant to lose, there is still love underneath snow and brittle bark.