[*Note: This article was first published on the public account "Rare Diseases of Pansy" (qisejinhanjianbing), please contact the original author for reprints]
I shrug, staring out the window at Cassiopeia. According to Greek mythology, she's chained to a throne, forever stuck there as punishment for her boastfulness and vanity. I wonder sometimes if I did something to deserve XP, something terrible that requires me to do penance in my house and my room all day, every day, until the sun sets.[1] (I shrugged and looked through the window at the constellation Cassiopeia in the night sky. In Greek mythology, Cassiopeia was the king of Ethiopia The incarnation of the queen of Kepus, Cassiopaia, because the queen boasted of her beauty and unbridled vanity, the gods made her turn into a constellation and stay in the sky forever, as a punishment. Sometimes I think , did I also make a big mistake in my previous life, so the old man punished me with xeroderma pigmentosum, locked me in my room during the day, and taught me to wait for the sunset day after day)
Title: Midnight Sun
Genre: Drama/Romance
language: English
Director: Scott Speer
Screenwriter: Eric Kirsten / Bando Kenji
Main cast: Katie Price (Bella Thorne), Charlie Reed (Patrick Schwarzenegger), Jack Price (Rob Riggle), Morgan (Quinn Shephard), Barb (Jenn Griffin)
Film length: 91mins
Release Date: March 23, 2018, in the United States
The 2018 American teen romance film "Midnight Sun" directed by Scott Speer is based on the 2006 Japanese film "A Song to the Sun".
The film mainly tells that Katie Price, who was born with xeroderma pigmentosum, had to reverse her work and rest day and night because she could not be exposed to the ultraviolet rays of the sun, otherwise she would die of skin cancer. She loved music since she was a child, and cherished the time when her mother played the guitar and sang for her most, so she often played and sang to the world outside the window to entertain herself. In addition, she has been secretly in love with Charlie Reed, the boy who passes by the window every day. By chance, Katie happened to meet Charlie while singing by the platform, and the two started dating and quickly fell in love. During her date with Charlie, Katie experienced the joy of being an ordinary girl, but she was slow to tell him about her rare disease. Unfortunately, Katie didn't get home in time for a date, and the day's sun fell on her, and her condition deteriorated rapidly. At this time, Charlie, who learned the truth, suddenly realized that he finally understood why Katie always used the excuse of being busy during the day and only dated him at night.
Katie doesn't have much time left, and her heart has been struggling with how to break up with Charlie. However, to his surprise, Charlie did not give up on her, and rented a recording studio with the money he was going to buy a truck. Katie recorded "Charlie's Song" for him and spent the happiest and last summer of his life with him.
As director Scott Speer said: "No matter what the situation is, music is easier to arouse each other's emotions than words."[2]
The plot of the film is basically close to the novel "Midnight Sun" of the same name written by Trish Cook. Although the narrative style is flat and the camera skills are lackluster, the music and guitar playing throughout the film also add a lot to the film. Through the heroine Katie's personal emotional route, the audience can appreciate the relationship and contradiction between the rare disease itself and the patient. The tragic turning point in the emotional climax of the whole film reinforces the psychological conflict between the self-reconciliation and identity-seeking of rare disease patients, as well as the medical and social difficulties faced by patients in the social environment. In short, this film opens up a new perspective for healthy people to understand the inner world of rare disease groups.
[*Note: This review contains a lot of spoilers, read as appropriate. ]
The film follows the classic three-act linear structure:
From the opening to 20 minutes and 50 seconds, when Charlie invites Katie on a date for the first time, it is the first act;
At 53 minutes and 22 seconds, when Charlie found out that Katie had XP, it was the second act;
Until the end, Charlie apologized to Katie's father Jack and made a final goodbye. Jack gave Charlie the lyrics book, which contained a letter from Katie to him, for the third act.
The film opens with Katie's dream. Katie's mother is sitting on the beach with a guitar, and the young Katie is snuggling in her arms, holding the handle of the guitar and learning to play. In real life, Katie's mother died in a car accident when she was young. Suffering from a rare form of xeroderma pigmentosum, Katie was forced to study in a home with UV-blocking windows, and on her high school graduation day, her father Jack gave her her mother's relic guitar as a gift. This stark contrast between reality and reality establishes the dominance of music itself over emotion, and it also sets the direction for Katie's love for music, an important thread throughout the film.
When introducing the lives of the two protagonists Katie and Charlie, the film uses the expression method of parallel montage, and takes Charlie's personal experience through the dialogue and interaction with other partners. It's worth noting here that the director didn't hide the fact that Charlie was "not perfect" from the audience, and Zoe's ordinary fights with him brought the reason why Charlie couldn't get a swimming scholarship to go to Berkeley school directly in front of the audience. As Katie wrote back to Gabby when she asked for help in the original book: " Everyone has more or less bad things, but not everyone wants to talk about it (Everyone has their shit sandwich. The only difference is some people aren't willing to talk about it). ”[3]
Male and female are due to objective reasons and barriers to feel social environment, even in the eyes of a near-perfect Charlie Katie is not "absolutely perfect", his identity unexpected change for a swimmer ordinary boatman, because of each other in the body itself and Those who have similar experiences in terms of psychological trauma can empathize more with each other's difficulties. The arrangement of this plot not only paved the way for the later encounter between Katie and Charlie, but also paved the way for the whole film to eliminate Ableism.
From the first part, the exaggerated pathological background, unpretentious character lines, straightforward and slightly deliberate plot development do not have many highlights that can attract the audience.
But from another point of view, when Katie repeatedly begged her father Jack to allow her to go out to sing alone, Jack was very cautious, not only asking her to go home on time, but also asking her friend Fred to ensure Katie's safety, which was the same as Jack asked Katie later. Same prudence with meeting Charlie and questioning Charlie. This series of detailed arrangements fully reflects the sensitivity and caution of rare disease family members to the patient's physical condition and personal safety. Excessive desire for protection sometimes conflicts with the patient's own social and other demands, and it is easy to control the disease itself. Make family members bottom out or even ignore these demands.
At midnight, Katie sang at the train station, and inadvertently met Charlie, a boy who had a crush on her for many years. Because she was in a hurry, she forgot the lyrics book she was carrying at the station. The film enters the second act.
The second act begins when Katie's best friend Morgan suggests she invite Charlie to the party. In this film, the role of Morgan, in addition to being the best friend of the heroine Katie, also acts as a turning point in the storyline. From making Katie and Charlie meet again, inviting Charlie to a party to telling Charlie the truth about why Katie can't go out during the day, Morgan starts from the beginning. In the end, it was the only person Katie completely trusted.
The importance of Morgan's role reflects that rare disease patients are prone to fall into irrational thinking logic due to the disease itself when faced with choices and self-reconciliation. At this time, fully credible psychological support and advice are essential, and also Due to the serious impact of the disease itself on the patient's socioeconomic status, basic rights to education, and social life, there are very few people the patient can really rely on or trust.
Katie attended parties with Charlie and even had the courage to attend a party hosted by Zoe Carmichael, the girl who verbally bullied her in first grade, mainly because she felt "normal" under cover of night. Her identity is no longer a rare disease patient, but an ordinary person. As Jack pleads, "Being someone more than just a disease," she begs when she expresses great concern that Charlie doesn't know about her condition.
This plot setting reflects that when the clinical manifestations of the disease itself are not obvious or will not affect life under certain conditions, patients with rare diseases are more willing to abandon the pathological attributes and choose to conceal, because informing the other party that they have a rare disease often It means potential identity prejudice and loss of subjectivity, which is caused by cultural differences or cognitive differences, and this is also reflected in Charlie's self-report.
Although the night wind is cold, Katie and Charlie's relationship is rapidly heating up. After learning that Charlie has a chance to return to the swimming team and go to Berkeley, the two took the train together for thousands of miles to the city that never sleeps, and spent a romantic time in Seattle. night. The dating process is covered by a youthful and energetic episode. The film only focuses on two of them. One is Katie's impromptu singing on the side of the road, attracting passers-by to stop and listen. .
In the book, as Katie and Charlie lie on the shore, Charlie remarks: " I don't know who I am anymore, and everyone else is overwhelmed. We've been classmates for so many years, and they just think of me as the one who can swim. Boy, if I can't swim anymore, I'm nobody else to them (I didn't know who I was. At all. Neither did anyone else. I've been in school with these people for years, and they just see me as the guy in the pool, then when I wasn't in the pool anymore, it was like I was no one to them.)” [4]
In the original book, Charlie repeatedly mentioned the change in other people's attitudes towards him after his accident, whether it was the owner of the shipyard or his classmates. Although Charlie is not a rare disease patient, he has experienced social difficulties and other issues caused by his identity change. trouble. Identity is related to the objective environment and life function of the individual, and is endowed by the external world, and often cannot be controlled by oneself. And that's exactly what Katie worries about.
Unfortunately, this time Katie and Charlie had so much fun on their date that they forgot the time, and when Katie realized it was too late, she desperately tried to get home before sunrise. However, it was eventually exposed to the sun. Looking at Katie fleeing home in a panic, Charlie has no idea what's going on, until Morgan informs him that Katie has xeroderma pigmentosum, and the film enters the third act.
In addition to Katie and Charlie's emotional line, the film has a plot worth noting, that is, Jack has been closely following the University of Washington research on xeroderma pigmentosum. Jack finally burst into tears when Dr. Fleming informed him that the research had been interrupted due to lack of funding.
This episode revealed a cruel and cold reality, that is, among the more than 7,000 rare diseases known in the world, only 5% have drugs to treat, and it is almost impossible to cure, and most of them require long-term medication to maintain the physiological function of patients . Due to the small patient base and high R&D costs, pharmaceutical companies are seldom willing to invest in the R&D of rare disease drugs, so patients with rare diseases often face the dilemma of having no drugs to treat. Under such circumstances, participating in clinical trials is the last hope for rare disease patients and their families. So when Jack knew the research had stopped, he was in tears because his last hope had also been dashed.
The plot at the end of the film is very romantic and dramatic. Although Katie's condition deteriorated rapidly due to exposure to the sun, Charlie did not give up on her or break up with her, and took Katie to watch him return to the swimming pool to participate in the competition, and he also used to buy a truck out of town. The money to play rented a recording studio for Katie, fulfilled her last wish and recorded the last song - Charlie's Song.
At the end of the film, when Charlie says goodbye to Jack and apologizes to him, he learns that he was able to return to the swimming team to attend Berkeley because Katie had contacted his coach in advance, hoping that he would reconsider Charlie. Jack entrusted Katie's lyrics to Charlie, and Charlie read Katie's last letter to him to the accompaniment of Charlie's song, recalling the good times the two had spent, and the film ended.
Although part of the plot arrangement is more deliberate, and the character setting is not handled properly, for example, the emotional line between Morgan and Garver will not leave too much impression on the audience. In the original work, the relationship between the two did not have too much ink. The author seems to use a healthy couple to compare with a special couple to show different cultural levels, but in the end, because the depiction is superficial, it cannot move people .
Overall, this is a great teen romance movie that teaches viewers that while xeroderma pigmentosum, Katie's way of life is somewhat different from her relationships with other characters, the priorities of her actions, etc. The above reflects some common commonalities of patients with rare diseases. Whether it is Katie, who was born with xeroderma pigmentosum, or Charlie, who is almost perfect, they are not perfect people, but they can be any member of the public, and through special role settings, the traditional sanity-centrism is dispelled narrative mode. Because everyone carries several or even a dozen disease-causing genes, we are not absolutely healthy individuals, so we should cherish every wonderful moment in life.
What is xeroderma pigmentosum?
Xeroderma Pigmentosum (XP) is a rare autosomal recessive disease that was first reported by Kaposi, a Hungarian dermatology professor in 1870, and then gradually discovered in countries around the world. The characteristic of XP is that after the DNA in the skin cells of the patient is irradiated by ultraviolet (UV), the DNA damage cannot be repaired due to the congenital lack of endonuclease, and it is prone to photodamage-related diseases and skin malignant tumors, often involving the skin and eyes. of the central nervous system, and almost all patients develop skin cancer. The incidence of XP is similar between men and women, and it has been reported in almost all ethnic groups on all continents. The incidence of XP is about 1:250,000 in my country, about 1:25,000 in the United States, and about 1:20,000 in Japan. Due to the high rate of consanguineous marriages in North Africa and the Middle East, Tunisia, Morocco, Libya, and Pakistan, the incidence rate has also increased significantly. [5]
XP can be caused by mutations in any of the XPA, XPB, XPC, XPD, XPE, XPF, XPG, XPV genes. At present, there is no effective way to cure XP. In addition to avoiding sunlight and ultraviolet radiation, there are still many treatment methods that can control the development of the disease, improve the quality of life of patients and prolong their life, such as drug therapy, surgery, photodynamic therapy, radiation Therapy, Enzymology and Gene Therapy. XP patients without neurological symptoms have a good prognosis with early diagnosis and strict protection from light, and their life expectancy is relatively normal; XP patients with neurological symptoms usually have a shorter life expectancy. The leading cause of death in XP patients is skin cancer. The median survival age for XP patients with neurodegeneration was 29 years, and for those without neurodegeneration it was 37 years. [6]
References:
[1][3][4]Trish Cook. Midnight Sun(2018). New York: Hachette Book Group.
[2]Bella Thorne, Patrick Schwarzenegger bring on-screen chemistry to 'Midnight Sun'. Retrieved Mar. 17 2018 from: https://dailynorthwestern.com/2018/03/07/ae/213414/
[5] Guo Yu. Current status and prospect of diagnosis and treatment of xeroderma pigmentosum [J]. Western Medicine, 2019 , 31(7):1145-1148.
[6] Ji Tengda, Qiu Haixia, Zeng Jing, Gu Ying. Advances in the diagnosis and treatment of xeroderma pigmentosum [J]. China Journal of Laser Medicine , 2019, 28(2):112-117.
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