Spoiler Warning!
This post talks about Everything, Everything by Nicola Yoon and Before I Die by Jenny Downham in detail. You've been warned.
Anyways, this is an essay that I wrote for my Masters' program after getting furious after reading a book. I would love to hear about more in the comments. Especially if you feel different. I would also like more book suggestions on YA with illnesses. Anyways, I hope that you enjoy this post.
As a teen, I wanted to find a book that
contained my experience as a teen battling a chronic illness, known as Common
Variable Immunodeficiency. In 2009, I had the pleasure of reading Before I Die by Jenny Downham. After
years of battling a chronic illness, I finally felt validated from Tessa’s
experience of battling leukemia. I believe that Before
I Die remains
the most genuine and accurate portrayal to my experience as a teen with an illness.
Earlier
this year,
I became excited to hear about Everything,
Everything, by Nicola Yoon, which is about a character with severe-combined
immunodeficiency (SCID). For
the first time, I would be able to read about someone with a similar experience
to my own. I found myself to be disturbed by the lack of research given to
Maddie’s character and
her illness;
a stark contrast to the author’s efforts in Before
I Die. Maddie’s narrative doesn’t create any sympathy for her as she
remains rather flat in her development over the book. Tessa’s narrative also contrasts
from Maddie’s by creating
a connection to the reader from the first page that develops from the
relationships in the book, because the supporting character reinforces the
reader’s perception of Tessa. Downham displays that illness affects more than
the patient, but their friends and loved ones. Lastly, Downham doesn’t discount
the reader and she gives the ending promised by her on the first page. Yoon
betrays the reader by taking the premise away from them and conveniently
changing the information to suit her need for a happy ending. Overall, the
difference between Everything, Everything
and Before I Die center around the
portrayal of illness, creation of character, and deciding on an ending true to
the story.
For
an author, the responsibility to provide books that reflect accurately upon
several experiences remains the most vital aspect to the storytelling. Downham creates a believable explanation of the illness from the first page.
Yoon fails at her attempt. Common symptoms remain absent from the narrative and
the author doesn’t ascribe the complexity displayed by people with chronic illnesses. The contrast is clear:
In
Before I Die, Tessa
distances herself out of fear of what she leaves behind. At the same time, she
wants to feel a connection to her family and friends. Tessa struggles in
letting Adam into her life as she recognizes her imminent death. She knows that
a relationship will adversely affect his life by creating a hole in her world.
Tessa shows this by her defense of isolation, “I hide under my hat again, just
for a bit, because I’m going to miss breathing” (Downham, 6). She knows that slowly her illness will take
away the simple things away from her. As the both the pain and prognosis
continue, Tessa remarks on more things that she will miss like breathing and
loved ones. Tessa also realizes that her condition has made certain
limitations, but she bothers with her list and she desires challenging these
concerns. After an adventure, Tessa’s mom remarks, “You slept for two days
solid when you got back” (Downham, 169). This remark shows a development of the
condition over time and how it alters the life of young adults. Downham allows
the reader to imagine illness with complexity instead of simplifying the
disease to basic language and actions.
On
the other hand, Yoon doesn’t allow her readers to
imagine the case in a complex manner. Maddie
explains her illness as, “Basically I’m allergic to the world” or “bubble baby
disease” (Yoon, 3). “Baby bubble disease” is a cultural explanation of the disease, while
in fact, this diagnosis requires several different doctors prior to diagnosis
of SCID. As someone with an immunodeficiency, I know that the experience varies
on the symptoms and subtype. SCID centers around minor infections becoming
severe due to the lack of immune response from white cells, B-cells, and
T-cells, which affects the responses to infections and allergens. Current gene
therapies and bone marrow transplants allow for the SCID to be treated with
minimal impact on the
patient’s life.
Yoon
also simplifies how germs interact with the
explanation of “she has to remain in the air lock until the filters have a
chance to purify foreign air” (Yoon, 29-30). Everyone carries germs both on and
in them. As would everything in their house contain some sort of germs. This infuriates
me, because a
basic Google search would’ve solved many of Yoon’s issues of portrayal. As
readers, this mistake is inexcusable.
Tessa’s usage of medical terminology conveys
her experience as a sick teen. For example, Tessa remarks, “Steroids did that.
High doses of Prednisone and dexamethasone” (Downham, 33). For people that have
been sick, they understand the complexity of medication as it becomes a part of
their vocabulary based on necessity. Maddie
feels more limited to her medical history due to the control of her mom, but
based on a device used by Yoon, Maddie should be able to research her illness.
The usage of ‘webdoc.com’ shows a familiarity and literacy of the medical world
(Yoon, 78). At the same time, she never uses the internet to find a possible
cure, a contrast to what happens in Before I Die, where Tessa refers to her
dad’s constant searching of the internet for some sort of cure. As a result, I
couldn’t believe Maddie’s acceptance of the fate to remain in the house of a
permanent basis.
Both books, Before I Die and Everything,
Everything, present their characters in 1st person point of view, which gives
the reader access to the character’s emotional state.. Tessa’s narrative causes
for the reader to hope for the best. The reader can also attest to many of her
feeling if they’ve experienced a similar issue. One part that struck me, “I’ve
been touched by so many people, prodded and poked, examined and operated on. I
thought my body was numb, immune to touch” (Downham, 211.) As someone with a
chronic illness and pain, this part linked me to Tessa. I know how this
disconnection between touch exist as hospital life separates from romantic
life. Tessa begins to experience love from an action that usually results in
pain. Downham begins to create a complex identity that the reader identifies as
recognizable to other people in their life.
Often, writer portray people with illness
as isolated and either blessed or damned. Tessa adores her family and friends, which
links the reader to her. Maddie didn’t have these links to the reader, which
made her seem flat. For example, Maddie obsesses over a boy and she doesn’t
think about the consequences of her actions. Carla expresses that Maddie might
have not met one of her “triggers” (Yoon, 185). Either way, Maddie unwarily
could’ve died. Olly allows these actions even though he loves her. As a reader,
I wanted for her death to happen to her so the book would end. Maddie doesn’t care about Carla
losing her job or her mom at this impactful plot moment. She selfishly risks
her life for a boy. Except Yoon betrays the reader by magically curing Maddie,“I am not sick and I never have
been” (Yoon, 275). As a reader with a very similar disability, I found for this
to be extremely problematic and offensive to possible readers.
The visibility of chronic conditions like
Primary Immunodeficiencies already creates skeptic of conditions. Yoon furthers
this thought, because she explains away the illness as an invention of a woman
trying to cope with the death of her husband and son. Maddie finds her happy
ending from this explanation, but most people continue to battle an illness
after getting rushed to the hospital. The fact that Yoon doesn’t give what she
promises as the author of the story made me furious. In Before I Die, Tessa dies as promised, but instead of writing about
how her life blessed others or forcing the reader to stumble through a funeral
or death scene, Tessa dies in the room that this story begins.
Unlike
Yoon, Downham depicts a relationship that allows us to
explore the dynamic between a couple where one experiences disability and the
other remains healthy. Tessa remains worthy of Adam even as she dies, which
contrasts with Maddie and Olly. Adam worries about hurting Tessa and he remains
aware of her condition throughout Before
I Die. Maddie becomes worthy of Olly after she is no longer ill. This
ideology expresses that only healthy people can date each other and find a
happy ending. As someone who is disabled, I found this rhetoric to express
unintentional ableism. People with chronic conditions often encounter stigmata
about their condition, but their ability to love others remains one of the most
crucial ways of survival. Tessa displays this throughout the book as her main
concern as she focuses her attention on how everyone else will survive without
her presence. Yoon should’ve thought about how damaging her story could be to
teens with SCID or similar stories, because the only way to have a happy ending
comes out of erasing their experience and the truth in their life. As a result,
Yoon invalidates the illness and she reduces the illness to just a plot
point.
As writers create fluid characters, readers
recognize themselves in the minor details of the condition. When
talking about a topic, an author's research remains essential to all
elements of the story crafted for the reader. Downham displays this into a
character with so much heart and connection. Before I Die expresses a period in my life of uncertainty and
doubt. Downham assures the reader that there’s a silver lining to even the most
tiring existence, because all humans remain more capable than they believe.
Yoon centers her story around love and she creates a promising premise that
would’ve exposed readers to an illness that remains unknown. Yoon discounts the
reader and the characters by not utilizing her premise to explore the
complexity of illness. Overall, writers need to think about the content that
they create and how their writing may be taken out of context.
This notion doesn’t mean to censor
writers, but it rather challenges authors to think about the voices that they
silence or invalidate by their plot. Books about illnesses deal with difficult
topics that exist in our lives, but being a good human means confronting these
truths. As writers, we decide how the world will interpret our craft by
creating unintentional messages within the text. In the relation of illness to young adult
literature, there needs to be more books that empower people often
underrepresented in books. When I think about the girl that I used to be, I
think about the impact that books like Before
I Die gave in empowering in my writing. On the other hand, books like Everything, Everything reveal the need for more education and
awareness of illnesses and disability. I didn’t feel valued in that book, in
fact I felt disposable like a plot device. Either way, readers need to be able
to recognize others with their illnesses and feel empowered by the stories.
Erasure of diseases in books doesn’t stop the people battling against the
condition, but it silences their issues.
Works Cited
Downham, Jenny. Before I Die. Oxford: David Fickling Books, 2007. Print.
Yoon, Nicola. Everything, Everything. New York: Delacorte Books for
Young
Readers 2015. Print,
