Duality: Why We Need to Learn to Live with Opposing Truths

I am the primary caregiver to my seven-year-old daughter, JJ, who has Rett Syndrome. I have watched Rett take away her independent steps, hand use, words, and much of her swallowing ability. Recently, it has even begun to curve her little spine. At first, when her losses were coming fast and furious, I only felt the negatives—the anger, grief, unending terror, and bottomless heartache. It has taken many years, but happiness, contentment—even flashes of joy—have now reentered our lives. Like many Rett parents, I now live in a place made up of both terror and hope, of beauty and sadness.

Medical and disability parents live in a world full of contrasts and conflicting emotions. But even though it takes time, caregivers like me can eventually learn to live at the intersection of two opposing truths. We can both adore our loved ones and hate their disease. We can fear our uncertain future and enjoy the present. We can long for the person we used to be and feel proud of who we have become. The more we learn to live with the idea of two simultaneous truths, the more comforted many of us feel.

Unfortunately, even though life is full of complexity, nuance, and change, our current culture often pushes us to accept only one truth at a time. This is particularly true on the internet—a place where many people peddle their own particular message, product, or “brand.” Often, these are juxtaposed with other, opposing messages or brands.

The world of disabilities is no different. There are many people who think you must believe only one thing or fall into one particular “camp” or the other. Yet, life is not this simple. People can be warm-hearted and well-intentioned, while still using hurtful words or phrases. Neurodivergent people can be shaped in wonderful ways because of their neurological differences, but these differences can also cause them physical, mental, and/or emotional suffering.

People in the disability and medical parenting community are certainly not the only ones who could benefit from learning to embrace life’s dualities. Our world is ever more polarized, with people entrenched in their opposing sides. We could all stand to learn how to think in more nuanced ways. What if, for example, we could disagree with someone politically but still respect them? Read something that makes us angry but still consider the author’s point of view? Identify with a certain group but recognize that all groups have many things in common?

As I dove into the idea of duality for this post, I discovered an entire branch of therapy based on the idea of holding dual beliefs and truths. DBT (Dialectical Behavioral Therapy) teaches people how to engage in dialectical thinking—accepting conflicting ideas and emotions. This type of thinking is key for dealing with grief, loss, and life’s larger-scale struggles. Anyone who has experienced these things needs to learn to hold space for how their losses have shaped them—both for better and for worse. In fact, many mental health professionals consider the ability to think dialectically as a sign of maturity and growth.

Dialectical thinking is not only important for grief and loss, but also incredibly useful when facing life’s uncertainties. My daughter has a progressive disease that can cause sudden, heartbreaking losses, but there are also new drugs and therapies that have the possibility to halt or even reverse some of these losses. Because of this, my family faces an overwhelming number of unknowns. Sometimes I feel full of hope; other times I’m drowning in anticipatory grief. But thanks to my hard-won ability to acknowledge both the good and the bad, I have found ways to live with multiple visions of our future—ones in which my daughter’s life is filled with joy and progress, as well as the ones in which she suffers greatly from, or even succumbs to, her disease.

While writing this post, I read the book Bittersweet by Susan Cain and was inspired by much of its content. Cain’s book examines the “bittersweet” mental state in which we recognize that “light and dark, birth and death—bitter and sweet—are forever paired.” I connected deeply with this idea because caregivers like me inhabit a permanent place of bittersweetness. With grueling regularity, we experience life’s most breathtakingly joyful moments, as well as its sharpest disappointments. I never quite know what to do with these two ends of the emotional spectrum, except to try to accept them as they come.

At one point in the book, Cain digs into the idea of poignancy. When we feel poignant, she explains, we feel both happy and sad. This particular emotional blend serves to heighten our awareness of life’s impermanence. In fact, researchers who study it have termed impermanence “the richest human state.” There is indeed great beauty to be found in embracing the bitter and the sweet in all of our lives. Though it has taken me time, I can now recognize that my magnificent, terrible, poignant, complicated life with my youngest daughter is one of the richest things I have ever experienced.

I might never get to a place of complete acceptance, but life with JJ has taught me to coexist more peacefully with opposing truths and strange blends of emotions. Her volatile, progressive disease means that my family continually operates within a cloud of grief and joy. Now, several years after Rett Syndrome first entered our lives, I can both appreciate our cloud’s silver linings, while also wishing I could just come in out of the rain.