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How my mother's illness made me a healthier ally

Strength In Vulnerability

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Vulnerability and openness do not come easily to me. Not infrequently, people have said that they were initially hesitant to engage with me, that I give off an air of impenetrable aloofness, something I've worked hard over the years to cultivate. If you've seen me around town, you might remember me as the fashionable woman whose carefully selected yet seemingly insouciant ensemble, or impossible lip color or whatever fabulous distraction I armored myself in that day, you may have admired. It's taken a long time for me to be honest enough to admit this, but the persona I've created is meant to deflect, not to draw in, to keep people at sequined sleeves' length because connecting with people beyond an exchange of compliments scares the shit out of me.

And in a way, I think this fanciful defense mechanism I've created is unfair not only to me, but to you: my readers, my acquaintances, my friends that I would like to be closer to but am unsure exactly how. My aim with this column has been to start uncomfortable conversations, to move distracting, untrue narratives in a more authentic direction. So I've decided that maybe I should be a little more human, more accessible.

Last week, I had the humbling and beautiful opportunity to do so as part of Writers Resist at PURE Theatre, where poets and community activists came together to speak jaggedly and messily and precisely as a heartbeat sometimes skipping about how life feels and moves against the new Trump regime. At this event, I decided to talk about my mom, about the upending of something I've always believed — that she is invincible because she is my mother. But in 2015, I learned that this necessary fiction I've clung to my throughout my life is nothing but a flimsy opening line, as so many things are.

In the summer of 2015, my mom was diagnosed with Waldenstrom macroglobulinemia, a rare non-Hodgkins lymphoma that has no discernable cause and affects only one in a million women — perversely suiting as mom is a true rarity, a woman of immense beauty and resilience, a woman who, while raising me near singlehandedly and taking care of her own mother (who also had cancer because genetics and life are funny like that), obtained her GED through her master's degree in a mere seven years, a feat that continues to astonish me as a bachelor's took me almost six.

When she was diagnosed, many well-intentioned friends and acquaintances who have not had someone they love face an incurable disease would assure me that everything was going to be OK, tell me about this one person they knew who used to be really sick but is totally fine now, say I shouldn't worry myself over things I can't control or change. Nothing made me feel more alone than hearing those who had no clue what I was going through tell me I didn't have the power to do anything about it, something I inherently — and devastatingly — already understood. Though their words were meant to comfort, they magnified my greatest fear at a time when I felt unsafe and uncharacteristically vulnerable. And sometimes they made me feel guilty about my own fear and grief, as if I didn't deserve those feelings, even though they belonged to me.

But from this, I learned a valuable lesson about being an ally: If I can't or haven't experienced something, I shouldn't tell people who have how they should feel. And I shouldn't pretend that our experiences are the same, because they aren't. I should listen when others more courageous than I offer a glimpse of what it is to be them and, perhaps most importantly, not immediately respond with instances in my own life I feel are similar. Ultimately, the urge to compare your life to that of someone who is oppressed in ways you can't understand can exacerbate their suffering by further ostracizing them, pushing them farther into the margins.

And these realizations are why I write this column, why I read your sometimes invigorating but typically withering comments, which I suspect are because you're scared too. And that's OK. Truthfully, I'm afraid whenever I write for you, every letter on the keyboard a tiny shudder. But maybe if we can just be more open with each other, less defensive, we can begin to be a little more understanding, a bit kinder, and much braver. I promise to try, though I'm never giving up sequins.

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