This excruciating and beautiful experience we call life, and where literacy fits in

I lost my dad on September 18, a day after his 82nd birthday. I was fortunate to spend the last month of his life with him. My sister and I traveled from our homes in California and Montana, respectively, to support my parents through my dad’s final journey. This journey started well before this last month of his life, over eight years ago, with a diagnosis of stage three esophageal cancer. He had several years of remission in between that first diagnosis and his last month. But the last six months were – as my graduate advisor, Dr. WO, said to me – “excruciating and beautiful.” 

Watching my dad waste away because he wasn’t able to eat, lose his voice, lose his balance, lose his joy, and take his last breaths. Watching my mom suffer along with him because she was losing the love of her life, her husband of sixty years. And now worrying about my mom, almost 82, living alone. These are the excruciating parts.

Being part of the experience. Telling my dad over and over again how much I love him. Sharing memories with my mom and dad, sister, and brothers. Sharing the burdens of worrying, providing physical care, and suffering. Watching my dad take his last breaths as I, my mom, my sister, her husband, and my oldest brother all sat with him, holding his hands, kissing his forehead, telling him we love him, sharing his final moments. And continuing to share memories, concern, and love with my mom and three siblings. These are the beautiful parts. 

How do we prepare for such life events? Are we ever truly prepared? Until we actually live through the event, I don’t think we can fully understand what it will be. But I do believe that through the stories we encounter, we can at least anticipate and plan for the event. This is where literacy is essential. To be able to interpret these stories, critically “read” all that we experience with an open mind and an open heart, and make meaning of it all, we must be literate.

I’ve been learning about literacy theories and current literacy issues, including Rosenblatt’s transactional theory of reading and writing, The New London Group’s pedagogy of multiliteracies, and Freire’s critical literacy theory. These theories have given me the language to express what I’ve intuitively known about literacy. How we approach a text, whether for personal or work-related purposes, and how our experiences have informed our current knowledge, inform how we make meaning of the texts we encounter. Literacy enables us to move beyond cursory readings towards being critically engaged with the texts, in whatever form they take, from textual to oral to visual to digital and more. Literacy gives us the skills to perceive the meaningful and to struggle through the tedious and the difficult. Through these skills, we expand our knowledge, gain new perspectives, and build upon our authentic understanding of the world. 

In 2020, the National Council of Teachers of English (NCTE) updated its definition of literacy to account for the continuous emergence of new technologies and the revised ways we conceive of literacy. NCTE’s definition states that to be successful, literate participants in a global world, we must: 

• Think critically and authentically. 

• Navigate complex and diverse texts and technologies.

• Advocate for social justice and diverse ways of being and thinking.

• Responsibly create and use information. 

I would add to this list:

• Apply our literacy skills to critically “read” all we encounter and experience. 

We live in a world divided by wealth, access to resources, politics, religion, race, culture, sexual orientation, and so much more. We live in a world threatened by a climate crisis, for which our human behavior is at least partially responsible. But we also live in a world of beauty and wonder, love and compassion, and the potential for renewal. I wholeheartedly believe that literacy helps us know our world, and if we choose, to improve it. By applying our literacy skills to being critically engaged, thoughtful, and inclusive citizens, we can work towards building a socially and environmentally just future. A future that is not built on division and hate, but that is built on compassion, cooperation, productive dialogue, and community. 

Of course, we each choose how we “read” our encounters. We can choose to allow the continuation of disempowerment through practices such as censorship in an effort to avoid the discomfort of that which is different. Or we can choose to resist such detrimental policies and bias in an effort to renew our commitment to becoming thoughtful, authentic, empathetic, and collaborative global citizens. We can embrace the discomfort of ambiguity and difference. We can become empowered by seeking to understand the unknown and by realizing that what we don’t understand doesn’t make it wrong.  

In a class discussion post, I used the example of an assassination to illustrate this point. When we learn of the assassination of a public figure, we can choose to engage with the stories that strengthen our own opinions about that violent act. We can choose to seek out the stories that bolster our current perspective, listening more attentively, reading more thoroughly, and watching with more interest. And we can choose to dismiss and even vilify the opposing perspective, finding gaps and faults with what doesn’t align with our story, enhancing our narratives to further discredit the stories of others.

But what if we were to critically engage with the other side’s perspective? What if we allowed ourselves to empathize with the other perspective and see the humanness in it? Could we then reach a more reasonable assessment of the event? Could we soften our stance and reach a hand across the figurative aisle to say, “I see your worry, your pain, your suffering, and for this, I am sorry.” And by expressing this compassion, could we begin to rely on our authentic interpretations of all we encounter, rather than rhetoric, to break down boundaries? Can we choose to apply our literacy skills to evolve as a world, rather than to devolve into catastrophe?

I’ve witnessed death throughout my life, from movies to books to personal experiences. When I was eight years old, I woke up one morning to my mom coming into my bedroom in tears because her mom had passed that night. When I was thirteen, my paternal grandma lost her life to cancer, and then only a day or two later, my paternal grandpa took his own life. My dad was the one to discover his father’s body. When he came home, he was changed in my thirteen-year-old eyes. I remember my dad telling me and my brother the story of what happened, how he discovered grandpa’s body, and why grandpa took his life. My dad didn’t try to hide the excruciating parts of life from us. He wanted to teach us that these events are part of life, but that we can survive them. He wanted to give us the skills to navigate these events. 

As an adult, my father-in-law was diagnosed with stage four lung cancer, only a few short months before my dad’s diagnosis. My husband was shattered by the news, while he tried to carry the burden of his father’s pending death for his mom and sister. When my father-in-law passed, my husband continued to carry this burden of grief. It took years for him to recover, and he still grieves. But I’m not sure we ever stop grieving over the loss of those we love most. 

Before my dad’s death, I witnessed our 11-year-old labradoodle completely waste away in just two short, excruciating weeks. It was heartbreaking to see our family member suffer, to witness his last hours of death. When I told him goodbye, he looked at me in a way he’d never looked at me before, as if he were saying: “It’s okay to let me go. I’ll be at peace. I know you loved me, and I love you.” He was a wise soul.

Did all of these experiences, my perception and interpretations of them, completely prepare me for the last month of my dad’s life? No. But they gave me the skills I needed to understand what was happening and to accept the ambiguity, fear, pain, and love through it all. And as a way to help me interpret, internalize, and make meaning of my dad’s passing, I’m writing through it. It’s part of my literacy process. 

Life can be excruciating. In moments, we can be fully vulnerable, causing us to fear what we do not know or understand. But life can be beautiful when we embrace vulnerability, seek to understand the unknown, and grow into more authentic versions of ourselves. By being literate, we are better equipped to navigate the pain and heartbreak, to turn the excruciating moments into something beautiful because we seek to understand and perceive them in a new way.

My dad during his last month of life