Unfolding by Jonathan Friesen was a difficult book for me to finish, partly because of how frustrated its poor representation of epilepsy made me but also because I just didn’t enjoy its story. It is full of clumsy Biblical metaphors and flat archetypical characters, alternates between grasping at magical realism and blundering through a brief Holes homage, and ends with a reveal that raises more questions than it answers. But I will narrow in on the epilepsy representation for this review (which will contain major spoilers).
Unfolding is about a teenage boy, Jonah Everett III, who lives in the depressed former mining town of Gullary, Oklahoma, which harbors a dark secret. It also harbors a teenage girl who arrived in the town as an infant in a cradle, blown in by a tornado and landing safe and sound in the front yard of Jonah’s next-door neighbors. They name her Stormi.
Stormi grows up to have mysterious powers of foresight. Jonah is in love with her, but he feels that he cannot be with Stormi and will never be good enough for her for a few reasons: The first being that he has severe scoliosis which has given him a hunchback (I will leave commentary on the portrayal of scoliosis to someone more qualified) and the second being that he suffers from epilepsy. Or, as he calls it, “Old Rickety.”
The main question I wrestled with over the course of the novel was whether or not Jonah’s seizures were of a magical nature. Having now read it twice, I believe the seizures were magical, but because of the book’s confusing nature I had moments where I felt just as strong that they were not. This was not helped by their heavily metaphorical qualities, which lent them a magical air.
For example, when Jonah and Stormi go on an impromptu road trip, his seizures initially wane the further they get from town. And as Gullary’s dark secrets are revealed, they get more intense. Also, following a scene where Jonah stands up to his father and the entire town about mistakes they made covering up a terrible crime, he has a seizure – but he’s able to stop it halfway through by sheer force of will. So, once Jonah proves his emotional strength, he can apparently be free of seizures.
This made me sick.
In fact, I think that describes my feelings towards almost everything in this novel’s portrayal of seizures and the experience of living with them. There were times when I had to put the book down and wait a day before going back because I was so angry. At one point I considered emailing my friends here at Disability in Kidlit to tell them that, as much as I wanted to help, I simply could not finish reading this book. But I made myself finish out of the hope that maybe I would be wrong, Friesen would redeem himself, and I would leave happy. This did not end up being the case.
Jonah’s seizures were, for the most part, clinically accurate. He experiences different kinds, which is entirely possible since epilepsy is a very personal condition and takes different forms in different people. I personally experience tonic-clonic seizures, which people may know as Grand Mal. This is also the type that Jonah most often experiences, but a few times he has what could be atypical absence seizures. I am curious if Friesen chose to have Jonah have multiple kinds of seizures because he knew it was a medical reality, or if this was just a way to present Jonah’s life as even more uniquely insufferable. The magical and mystical qualities Friesen gave to Jonah’s seizures has me leaning towards the latter. Jonah sees himself as a monster because of his disabilities, and the narrative isn’t always clear on whether it wants the reader to agree.
In regard to medical treatment, a great deal was left out. Friesen rarely included information about doctors Jonah has seen or who prescribes the medication he takes. The book seems more interested in the scoliosis as a medical condition, whereas the epilepsy is just a bad thing that happens to Jonah. His medication doesn’t work, but no alternate treatment options for the seizures are considered.
I realize now that this was all likely because Jonah’s seizures were not intended to be part of an actual epileptic experience, but rather as a metaphor for the emotional shortcomings that he must overcome.
The only time we see Jonah seek medical attention is when he and his father drive to a hospital in a major city to discuss Jonah’s options for scoliosis surgery. While there, Jonah meets with a group of other young people with epilepsy. Before things went quickly downhill, I actually related to the conversation they were having. They were discussing their experiences using humor and competitiveness as shields against their vulnerability. But then suddenly each teenager in the circle began to fall off their chairs one by one until everyone in the room was having Grand Mal seizures in sync with each other in a “communal jerk-and-writhe session on the floor.” Immediately afterwards, Jonah’s father decides it was a waste of time and they return home. I searched each passage in vain to try and determine what possible narrative purpose this could serve, but I am resigned that it was merely there to shock readers and manipulate them with a frightening and violent aesthetic.
Coming to terms with yourself as a person with a disability is complicated, and Jonah’s relationship with his seizures is fraught. There were moments I related to, such as when Jonah approaches a river and thinks that “it would be a bad site for a seizure,” or when he gets frustrated with Stormi’s ability to go on adventures on a whim because she doesn’t understand that spontaneity is different for him. And, though his concept of himself as a person with a disability is more linked to his scoliosis, his seizures also make him distinctly and publicly separate from his family and his peers. He constantly refers to himself as a “monster” or a “beast” and comes up with grotesque Latin-sounding ways to refer to his conditions like “deformicus” or “infirmicus.”
There were two contrasting scenes in the story that are the most telling about how Jonah characterizes his disability. Both concern camps for young people with similar conditions, and both appear in loose flashback form.
The first takes place at scoliosis camp – before Jonah’s condition becomes pronounced. While there, Jonah distances himself from the other kids, thinking of them as deformed and making blasé comments about them to Stormi. She tells him that he may be treating them unfairly, especially since he might be about to become one of them. Friesen then hammers home the tragedy of Jonah’s situation by following this up with Stormi’s mother remarking on how good-looking Jonah is and how he is certainly going to grow up to be tall and strong.
The second event is when he attends a camp called Boundary Waters, which is supposedly a safe option for young people with epilepsy to experience camping and hiking. When Jonah first arrives, he refers to the other epileptic children as “able-bodied,” clearly indicating that he does not consider epilepsy to be a disability. But if these other teens are able-bodied, then why are they too in a situation where they must pursue alternate ways of experiencing the world, and forced into constant supervision with the lack of independence and privacy that Jonah rails against? The narrative is so focused on isolating Jonah from his peers, from his family, from everyone but Stormi, that it completely disgraces the epilepsy community. Once, Jonah has a seizure on a hike. When he comes to, bruised and battered, he finds that one of his fellow campers – who must also have epilepsy if she is on this trip – is laughing and taking a video on her phone.
I was appalled. The only people who truly understand the vulnerability and humiliation of a public seizure are other people with epilepsy. Community is sacred when you are living with a disability and depriving Jonah of that by never allowing him to relate or to connect with other epileptic people is truly unfortunate. But it serves what seems to be Unfolding’s ultimate narrative goal, which is to equate the seizures with weakness and set Jonah up to overcome them in the finale. For this to work, Jonah must be different than the other disabled people who are, by the novel’s implicit definition, ultimately weak. Jonah must be the Better Disabled Person, because otherwise how could the novel justify his magical ability to stop having seizures using just his own will? This is a reward only he achieves, and so he must not be like the rest of us who must live with our petty, weak, monstrous selves.
Then we get to Stormi, who can see the future. She is in many ways a victim herself: of her circumstances, her family’s abuse, and her magical powers. And while Unfolding occasionally understands and explores her as a fully realized character outside of her primary purpose as part-love interest, part-plot device, her character experiences a major disservice at the hands of the story, which is riddled with victim-blaming, misogyny, and a strong belief in the Friend Zone. But that’s a review for another day.
Jonah is in love with Stormi, but he is so wrapped up in self-loathing that he could never imagine a girl like her sharing those feelings for a boy like him. Their childhoods were spent exploring the local woods together, where they would reenact scenes from The Lord of the Rings. Stormi uses her foresight to warn Jonah if he is about to have a seizure and he thinks of her as his “soldier, the one battling the creature caged in my skull.” And yet, disturbingly, there were moments where she is clearly frustrated with him or casually blames him for his seizures. For example, once, he tries to jump into the river to retrieve her lost ring but has a seizure halfway there. When he wakes up, “Stormi…stared down at me, her face disappointed. She never wore [the ring]again.” But still Jonah worships her to the point where his primary drive is to become the version of himself that won’t embarrass Stormi and will finally be strong enough, handsome enough, smart enough, or magical enough to be with her.
One of her visions, this one triggered by a hunch from a mysterious escaped prisoner, leads Jonah and their friend Arthur out of Gullary and toward a camp of older men atoning for terrible sins yet to be revealed. Stormi already knows how it is all going to end and what it will take to get there. And for it to work, she needs Jonah to be who he is right now: insecure, love-struck, and willing to do whatever she wants at a moment’s notice. It makes me wonder if those moments of frustration and disappointment were intentional by Stormi to subvert his confidence and build up his shame to reinforce the sense that he owes her, that he has let her down somehow and doing the next thing she asks will be how he can make it up to her.
Jonah also has a difficult relationship with his parents, who always seem to think about Jonah’s seizures in context of themselves, especially his dad. He is upset that Jonah isn’t the ideal son he dreamed of, and Jonah once overhears him playing catch with Stormi’s brother and inviting him to go fishing because he “can’t really risk [Jonah] on open water.” And at the end of the novel Jonah’s father confides in Jonah that he sees the seizures and scoliosis as having been “sent to smite. Curse for what’d been done on your grandpa’s watch, left undone on mine,” referring to the terrible crime committed years ago that town leaders covered up and have been riddled with guilt over since. Jonah’s response – “My seizures aren’t a curse. They just are.” – sounds reasonable and thoughtful, but in light of the rest of the book and its themes, you can understand my mistrust.
Jonah’s parents alternate between smothering him and disdaining him, and Jonah sees it as them thinking of him as “castrated,” which is a decent showcasing of the dehumanization and desexualization that many people experience because of their disabilities. Jonah internalizes all of these negative things he hears about himself.
I would have enjoyed a story of Jonah overcoming this mindset and going on to save the town because of his empowerment and knowledge of his self-worth, to prove that he is a hero no matter what he looks like or how many seizures he has had.
But instead, he is cured. Old Rickety makes a nighttime appearance to Jonah right at the start of Unfolding’s climax. This seizure is different because Jonah enjoys it “in the way I imagined a kid loved a vomit-inducing roller coaster.” Then he taunts the seizure, asking for more, and treating it with “a lack of respect” until a sound is able to pierce through the haze and he pulls himself out halfway through. And then in the final pages, Jonah informs us that after that fateful day he never had another seizure again because he is a hero and now Old Rickety can leave him alone.
But being a hero and having seizures are not mutually exclusive experiences. And neither is being strong or being dynamic or being successful. In fact, just the other day I went to my job in higher education where I planned a major recruiting event, went home and checked in on the status of my law school applications, then went to bed and had a seizure. But I’m still here. Planning more events, raising money with my colleagues for charity, getting accepted to law school, and still having seizures.
Jonah’s epilepsy is an experience that drives his character towards many of his decisions and adventures, but there is no meaningful engagement within the text regarding his experience. They seem to exist purely because seizures are physical and scary and having them makes Jonah pathetic.
I have spent much of my life giving people the benefit of the doubt when they make tasteless seizure jokes, or giving TV shows wide berths when they inaccurately portray first aid. It’s a complicated condition, and it’s hard to get something so varied right every time! But I just can’t do that anymore. According to the Epilepsy Foundation, 1 in 26 people will develop epilepsy in their lifetime. Almost everyone knows or will know someone who has seizures and the more we let people get away with getting it wrong, the more they will just keep getting it wrong.
Unfolding got it wrong, but we can use it as an opportunity to start getting it right. If you choose to read this book, don’t be afraid to question the moments that don’t feel quite right. You can also take time to consider why epilepsy was chosen and how your understanding of the condition is affected by this representation. There is a fine line between something being an important part of the plot versus something being meaningfully explored in the narrative and Unfolding doesn’t find its way to the latter.
And for current and budding writers out there, let this book be a reminder that research and accuracy are just as important as creativity and imagination when placing real situations into fantastical stories. Foresight isn’t real, so Unfolding could treat that however it wanted and utilize it whatever way fit the story best, but epilepsy is real and cannot be altered or played with in that same way. Understanding where books like these went wrong is a great opportunity to learn how you specifically can be the one who gets it right.
Because people with epilepsy are varied and thriving and complicated and we deserve better than this.
Thanks for doing the work of reading this book and explaining its problematic content, giving many examples, even though it was a painful experience. Needless to day, I’ll skip this book. “Because people with epilepsy are varied and thriving and complicated and we deserve better than this.” Very much this.
Do you reccomend any books with positive views and good writing in regards to living with epilepsy?
I know this comment is about a year after the original, but I just stumbled upon this great website. I am a Library Science student. I found this list on Goodreads…might be something with a positive depiction of epilepsy among these books. There are adult, juvenile and YA on the list.
Thank you so much for doing a review over this book. I have never heard of it , but I it sounds very insensitive and problematic to a topic such as epilepsy. It’s very sad and disappointing that his own parents thought those things about their own child. People with epilepsy do live thriving lives even though they experience seizures on the daily or out of the blue.
I believe having epilepsy is one difficult thing to live with and it becomes more difficult when family and friends are not supportive enough. People living with epilepsy deserve more love and care and also resources to manage this condition. Recently, Science has researched more on Epilepsy and I don’t think anyone should be classifying it as magic or anything. There are better ways to manage the condition now with the help of science.
Jonah’s situation is terrifying knowing the very people who should love him are not caring much.