Reflections on health and familial love.
By Molly Leahy
Home: where the passage of time is marked by proliferating stacks of empty quart-sized Carvel containers in our kitchen cabinet. Mint chip ice cream is the only food my mom consistently eats. Other foods either make her brain dysfunctionally foggy or her stomach feel like it has knives in it. Often, she experiences both symptoms along with a strange amalgam of others.
It started with her eyes. Then her joints. Lungs. Muscles. What we thought would be a single visit to the eye doctor turned out to be years of visits: to hospitals, private practices, universities; generalists, specialists, functional medicine doctors, integrative medicine doctors; psychiatrists and psychologists. Everyone in the medical world says that my mom’s immune system is dysregulated, but no one can agree on why—only that it’s getting worse.
The last two years have been the hardest as her symptoms become increasingly unbearable. Tensions run high; and we never know what kind of day she will have. She slept the night before. We go outside. She is more energetic and hopeful. We talk about all the things we want to do when she gets better, all the places we want to go: Paris, Savannah, Buenos Aires. She may even crack a joke, usually about the absentmindedness of my teenage brothers. She seems good today.
But some days are bad. She didn’t sleep. She spends most of the day curled up on the couch, wrecked by pain. Our conversations revolve around her illness, whether anything’s changed, how she’s feeling physically and emotionally. We look ahead to upcoming appointments. We consider options. We try to be hopeful. This isn’t forever, it can’t be forever.
The most debilitating symptom of my mom’s illness is the silence. Silence from her. Silence from us. Silence at home.
Before she got sick, the voices of James Taylor, John Mayer, Vance Joy—and her own—would often greet me at the door. My mom loved using her sunflower-shaped plate, seashell bowls, and quirky cheese knives to create decadent cheese boards that friends and family would sit around and enjoy for hours. For a really good time, she’d break out Telestrations—and it never failed us. Most games would end in sore abdominal muscles and tear-stained cheeks, all from our roaring laughter. Before she got sick, my mom and I could talk about everything, losing track of time, commitments, thought patterns.
But attempting to recall how we had jumped from one topic to another is futile. Music isn’t played anymore. Telestrations sits buried in our game chest. And we find ourselves unable to talk about the one thing that is on all of our minds.
Silence has infiltrated our home: once a visitor, now a dweller. It signals the end of what once was—ease, comfort, joy in its most fundamental form—and the progression of what is: fear, sadness, and excruciating uncertainty.
I can tell when my mom is at her lowest based on the state of the kitchen cabinet. Sometimes it’s orderly, with neat, stable stacks of the red Carvel containers. Other times I open the cabinet and the containers avalanche out, swallowing me up.
I’m losing my life.
…
Our home is a container of its own. On the inside is my mom at her most honest and vulnerable: sick, isolated, angry. Stuck in a time loop of pain and confusion, she is unable to move forward with her life, unable to get answers. On the outside, life goes on and time progresses at a standard pace. Friends and family drop in but then they go, leaving our world behind and reentering theirs. No one but the six members of my family remain inside long enough to see the weight and darkness of illness on full display.
When my mom exits our home, she leaves the darkness behind. She changes out of her pajamas, puts on mascara and a smile, and musters the strength to be “herself” again. And she is. She is beautiful, with deep blue eyes popping underneath her dark lashes. She is engaging, with a gift for asking questions that make people feel sacred. She is fun. At a wedding last fall, she joined us on the dance floor, winning the night with our coordinated moves to “We Are Family.” To an outsider, nothing is wrong at all. Our closest loved ones are unable to comprehend the weight of my mom’s illness. Even we can’t.
My mom loves to feel like a person again. She is desperate to be herself again, permanently, for her sake and for ours. But being herself comes at a cost: the darkness is never too far behind.
I know that my mom puts up a front for us. I often wonder how tall that front is and what it’s hiding. For a few days around Christmas, it really felt like we had our mom back—like silence had finally moved out and, at last, we had a grasp on what once was. She played her favorite Starbucks holiday playlists. We baked monkey bread and went out for oysters (a Christmas tradition on my dad’s side). She even wore her holiday pins: a ceramic wreath and a silver reindeer, her late mother’s.
But once the holiday passed, she was on the couch for days, exhausted from expending so much energy trying to make it special for us. Exhausted from pretending like her body is okay. I know she felt sick during those days but said nothing about it, suffering in silence. Are you sure you feel up to it, Mom?
What can you do when you want to say everything, but all you can say is nothing?
My mom is silent about her illness when she thinks something is at stake. Usually the well-being of her family. She knows that home isn’t the same anymore, and family time, like her, has taken a different form. She worries that it’s her fault.
I don’t feel good. I’m so sorry.
I know that my mom feels these things because she is not always silent. Some days are so hard that she can’t be silent.
I worry that I’m the reason why my mom doesn’t talk openly about her illness. The truth is that I don’t know what to say anymore when she does. My family tries to be as supportive as possible in as many ways as we can, but lately it feels like we’re running out of options. Validation is not enough at this point. Neither are expressions of love and gratitude. I know what medications and treatments we’re trying, what doctors we’re seeing, what paths we’re considering. I know that the Mayo Clinic rejected her application. I know that she feels like a bad mom. I know that she’s scared. I know that it’s unimaginably awful.
I don’t know what’s happening to me.
I tell her over and over again that she is not a bad mom. I don’t know if she believes me. Often, our conversations just repeat what has already been said.
So we default to silence. I’m so sorry. But I wonder if those words are losing their value, and if the ensuing silence stings or if it communicates something else. I love you, I am with you. I wish I could make it say those things.
What do you say when you’ve said everything but silence stings?
I don’t want my mom to be silent. I want her to feel entitled to her sadness and her anger, her frustrations and her fears. I want her to feel that she can say what she needs to say, even when I don’t know what to say.
I don’t know how to navigate the silence at home and I don’t think I ever will. The only thing I know for sure is that when my mom is silent, it’s because she loves us.