Kennedy Ryan novel ‘Reel’ offers real representation of lupus
Book strengthens bond between columnist and close friend
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There is a term used often in publishing and media to acknowledge when a community, a niche group, or a marginalized people are included within a broader context of an issue or story. When an author is inclusive of a person or a group, it is intentional “representation.” We are familiar with the word in a political sense, and for all intents, it is used in nearly the same way or within the same context as political representation.
Most fictional characters are representatives of real people or groups. For example, an avatar in N.K. Jemisin’s sci-fi book “The City We Became” can represent residents of Brooklyn, New York, collectively, and Peter Pan can represent eternal youthfulness.
A few years ago, I read a bestselling novel with a main character who — deep within the storyline — faced a health crisis and was diagnosed with systemic lupus erythematosus. It was the first time I’d ever seen lupus in mainstream fiction.
Yes, there are many nonfiction books, memoirs, and children’s books where the main character has lupus or a family member does, but this depth of representation is a first for me.
The way Kennedy Ryan writes the character Neevah in the novel, “Reel,” is an impeccable representation of the quiet, painful, invisible — then abruptly visible — battle of lupus. I shared the book through my lupus library as part of my reading hypnosis.
Book conjures flood of memories
The book’s accuracy is tear-dropping.
It makes you pause, take a deep breath, close your eyes, and just ride the quake of memories. You’ll remember the first symptom, then the barrage of symptoms that were disconnected and easy to justify because of lifestyle or stress or another preexisting health condition. You’ll remember the diagnosis, then the denial, and the fierce fearfulness of the future. You’ll remember how breathing became difficult at the thought of organ damage and vision loss. Finally, you’ll remember the sorrow in the eyes of family who, like you, had no idea of what lupus could change and how it can end lives.
Ryan’s writing captures the heart-wrenching feelings of losing hair, a first of many quiet symptoms. She delivers powerful reflections and experiences of lupus pain. Lupus is aggressive, and Ryan doesn’t protect her characters from its realities. She is intentional in presenting the urgency of care, contrasting opinions on how life should continue, and the struggle of protecting organs.
I will leave it at that and not spoil the ending, but trust me, “Reel” is an all-time favorite.
A friend like very few others
More than offering this reading trance, “Reel” brings awareness through the powerful medium of fiction and imagination. Once readers feel connected to Neevah, they connect to lupus as well. As a writer, I believe that was one of Ryan’s intentions, and it was executed superbly.
How do I know? Because a friend of mine paused her extremely busy workday the night after finishing “Reel” to apologize for not understanding how it was impacting me. She felt like she could have researched lupus more in order to be available to me. Part of her not understanding is not only because I didn’t look sick many times that she saw me, but that I also celebrated not looking sick.
The other parts of her not understanding have so many layers and reasons, and reading “Reel” gave feeling, if not clarity, to those. I reminded my friend of the times she cooked meals for my large family when I was in too much pain to sit up and feed myself. I reminded her of the writing projects she hired me to complete, although she was unaware that it filled a financial gap that sickness and medical bills caused. I reminded her of the trips she initiated to find alternative treatments for the pain, even though she “had no clue of what it is” (her words). She may have felt like she could have done more or understood more, but the truth is, she’s been a friend like very few others.
It took Kennedy Ryan’s “Reel” for her to see the depth of lupus and for me to celebrate this friendship I have.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.
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