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Entre toi et moi, le monde

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Chaque pas lui ôte des forces, mais Alice est décidée à se battre pour celui qu'elle aime. Elle a beau être malade et confinée dans son lit, Alice sort de sa chambre tous les jours. Ce miracle, c'est la plate-forme Stream Cast qui le permet. La jeune fille y suit différentes personnes par caméra interposée et vit à travers elles. Jusqu'au jour où, sous ses yeux, un streamer est tué dans un accident.
Traumatisée, Alice va pourtant suivre un nouveau streamer, Rowan. Grâce à lui, elle arrête peu à peu de vivre par procuration et donne une chance à la vie, la vraie !
Seulement, Rowan aussi a un secret. Un secret qu'il n'avoue pas à Alice, ni à lui-même...

384 pages, Paperback

Published January 19, 2023

14 people are currently reading
491 people want to read

About the author

Sarah Ann Juckes

8 books58 followers
Sarah Ann Juckes writes books for young people. Her YA debut Outside (Penguin) was nominated for the Carnegie Medal Award 2020, shortlisted for Mslexia’s Children’s Novel Award, and longlisted for the Bath Novel Award.

Her latest novel, The World Between Us will be published by Penguin in March 2021 and has already sold in three other territories (Germany, France and Italy).

She works with writers from all over the world via Jericho Writers and is on the board for Creative Future – a charity supporting under-represented writers.

She collects old editions of J. M. Barrie's 'Peter Pan and Wendy' and feels most at home in the middle of a forest.

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Displaying 1 - 30 of 69 reviews
Profile Image for Izzie.
703 reviews105 followers
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December 13, 2021
I have honestly been deliberating this review for weeks. I am genuinely torn, as this book does some things so well, and some things just don’t feel comfortable to me as a disabled person.
I’m going to start this review off by clarifying that I am a 22 year old person who has been bedbound for 2 years, and mostly housebound for 4. My health has been declining significantly since I was 11, but I was born with my condition. This book is about a bedbound teenage girl, however it is not own voices and I do feel that that is quite obvious in how the book is written. However, I do not speak for all disabled people, so please understand that this is simply my opinion. I’m going to start off with the positives:
- someone wrote a book about a bedbound MC. I’ve never read a book with a character bedbound, and only a handful of books with disabled/chronically ill MCs. I’m really happy that this book was written and published, even if it’s not exactly what I wanted, as I hope it opens doors for more opportunities for people like me to write our own stories.
- There was a lot of aspects that were accurate in terms of the thoughts/feelings/difficulties that come along with being chronically ill. The way people forget about you and friends get bored, the frustration that people don’t take your condition and needs seriously, the guilt of constantly feeling like a burden to those around you and especially your parents. That resonated with me, and her relationship with her mum is similar to my own.
- I guess this is kind of spoiler-y? So skip this point if you don’t like any spoilers, I guess? But I liked how when both Cecilia and Rowan “found out” about Alice’s condition, they loved her for the Alice she used to be (in Cecelia’s case), as well as the Alice she had become due to her chronic illness. They didn’t want her to be something she couldn’t be, they were okay with her just the way she was. It made me feel a little hopeful for myself.
Now onto the negatives, which as I said, I’m still conflicted about:
- The first one is kind of small, but the use of “spoons” was quite unrealistic to me. I like the “spoon” metaphor which essentially helps to communicate how much energy/capacity a disabled person has to get through the day. You may start the day off confidently with 10 spoons, but then a shower unexpectedly used 5 spoons instead of the normal 1 and suddenly you have to get through your entire day with the energy levels to maybe get dressed. However, throughout this entire book, Alice almost always knew the exact amount of spoons she had. Sometimes activities took more spoons than she expected, but she was always able to quantify her remaining spoons whenever she was asked. Maybe I’m just not a skilled disabled person😂 but I’m hardly ever able to actually give an exact spoon count, I’m usually only able to tell if I’m at like 10 spoons or 1 spoon, so the two extremes for me. It’s a small gripe, but it just felt very inaccurate to me as a chronically ill person.
- Onto my biggest issue. A main message throughout this book is that no matter how much Alice WANTS to do something, she physically can’t. And I appreciated that. It challenged the narrative of “if you only tried harder” or “you just don’t want to do it enough” which is something us chronically ill folks have to deal with a lot. So for maybe 70ish% of the book, we were constantly shown that even when Alice desperately wanted to do something, if her body said no, then she simply couldn’t. That is how chronic illness and disability tends to work. Especially for me, there are some things that are simply impossible for me to do. I can’t sit up from lying down. Even if I was literally in a burning room, I simply can’t do it. Maybe I could roll onto the floor or something, like idk I’d try not to die but… the point is my body wouldn’t magically be able to do it even if it was in life threatening danger. However, Alice, for the first time in years (I’ve forgotten exactly how many years it was, sorry!) walks down the stairs, goes on a car ride, walks/gets carried to a playground, sits at that playground and gives well spoken advice. And, in my opinion, for a ridiculous reason. I won’t say what the reason was, just so I don’t ruin the whole book, but it’s certainly not something that was necessary. She continually comments that she doesn’t know how she’s doing it/she knows she shouldn’t but wants to/decides it’s worth doing something that we have been told is physically impossible for her? I’m very aware that chronic illness and disability is flexible and everyone’s ability fluctuates all the time, but this was just ridiculous. And it completely undermines the entire message of the book, and makes the very important comments that the book made previously almost obsolete. It seemed like she wanted to do it badly enough so she could! Which is the exact message most of the book contradicts! It was also extremely unbelievable that her parents would help and enable her to do this. My mum also read the book and said that that was the part that stood out to her the most, as she would never help me to do something so dangerous if it wasn’t 100% necessary. Which it wasn’t.
Now, at that point, I had no hope for the book, but it did redeem itself in a way. We’re going to discuss my last gripe before I say how this book saved itself from the entirety of my wrath.
- This whole book, Alice talks about wanting to Live. She spends her time watching other people “live”, and her internal monologue is very much centred around the fact that she is surrounded by people who are Living. Where as she is not. This felt disappointing to me. Just because my life is not the same as able bodied people, does that mean that it is not a life at all? I’ve worked hard to build a life that brings me joy, and it looks a little like Alice’s. However, no matter what, I am alive, I am Living, and it felt like the way I live was dismissed.
-Back to how the book saved itself: Alice’s trip outside leaves her in the hospital for weeks (I’m not exactly sure why she was in the hospital and not at home because they didn’t actually seem to be treating her? But I guess that’s just me being pedantic😂). She faces big consequences for her actions, and it really does make her reevaluate her life. She does start to realise that her way of living is valid, and that she doesn’t need to live her whole life vicariously through others. Alice does think what she did was reckless and I think she did learn a lesson from it, and her outlook definitely changed. It doesn’t entirely make up for the fact she was able to do what she did in the first place, but at least it showed that serious things can happen when chronically ill people push their bodies.
So that’s it. I will not be rating this book as I truly cannot decide whether the good balances the bad or even what I would rate the book on. I just wanted to lay out my opinions as an own voices reader, to allow you to make your own decisions whether to read the book, or if you’ve already read it, to examine your view of the book. Maybe you’ll be annoyed by the things I was annoyed by, maybe you won’t. I’m happy if any disabled/chronically ill people found solace in this story. And that’s just as valid as how I felt about the book! And remember that I am only one disabled gal, so please don’t take my opinions as a representation of the entire disabled community. Thank you for reading this if you got this far, I worked hard to write this review, so I really appreciate it!
Profile Image for Muffinsandbooks.
1,724 reviews1,338 followers
January 20, 2023
Un beau roman, atypique dans la forme et très original. C’est touchant car on parle notamment de maladies chroniques et assez poétique dans la manière dont là protagoniste aborde le monde. J’ai toutefois trouvé que la romance allait un chouïa trop vite et je ne me suis pas attachée autant que je l’avais espéré. Je n’étais sans doute pas vraiment dans le mood pour ce roman, il n’empêche que c’est une belle histoire !
Profile Image for Anniek.
2,562 reviews883 followers
April 12, 2021
Many thanks to the publisher for the reading copy!

Alice is chronically ill and bed-bound. To help her cope, she watches Stream Cast, a program where people can stream their lives and other can check in and see what they're seeing for a while. This works well for Alice, until she watches her mother's coworker get hit by a car through Stream Cast.

Soon after, a new person starts streaming: one of her mother's coworker's students, Rowan. He takes her on adventures and they start to become friends, which develops into a slow burn romance. I loved Alice as a main character: she was passionate and I admired how she could see the beauty in small things, as I think that's one of the most important skills in life. I also found the story to be very engaging; I really couldn't put it down.

What I loved most about this story is how they both helped each other. Between Alice's disability and Rowan's secrets, they both have things making their lives harder than it is for most people. This book is mainly about making something good out of your life in the way that works for you. That's something I'm personally trying to do, so it really resonated with me.

I'm not an own voices reviewer for this book in a specific sense - I'm not chronically ill or bedbound - but I am autistic, and I could really relate to Alice's energy levels varying and her having days where she can do a little more than usual and days where she can hardly do anything at all. The way everything extra, even if it's fun and/or you desperately want to do it, can really take a toll on you. I can't speak on the accuracy of the rep, but I think it was done respectfully and I did get the impression that it was handled well. I would love to see some own voices reviews about this!
Profile Image for Marieke (mariekes_mesmerizing_books).
714 reviews862 followers
March 3, 2021
Imagine being chronically ill, bed-bound, not going to school, or parties, or just outside. Imagine watching the world through cameras on other people’s chests. This is 16 yo Alice.

I was just a few pages in, and tears were leaping in my eyes. Not because of the cold I had, but because of what happened in the story. Alice’s story. And Wesley’s, Hana’s, Roy’s, and finally Rowan’s. Rowan who gives light to Alice’s bed-bound life.

Alice’s world is small, consisting of her parents and Cecelia, the only friend she’s left. But she lives in the outside world through other people’s eyes. People she doesn’t really know. Who wear a camera and stream their daily life. Until one of them dies, and it’s almost like Alice dies too. Because she saw what happened. Through the camera, through Wesley’s eyes. But then her mom asks one of Wesley’s students to stream, and Alice’s life changes. Because Rowan is different, He talks to her, and Alice talks back. And Rowan takes her on a journey Alice will never forget while Alice is learning about Rowan’s problems.

I have mixed feelings about this story. At first, I loved it because Sarah Ann Juckes’ writing is active, smooth, and descriptive. It draws readers into the story and doesn’t let go. Sometimes it’s so fast paced that I was figuratively out of breath. I liked the way she used Rowan’s POV, just as a part of Alice’s POV. But then I got a little bored and irritated. Because the sentences: ’And then we’re walking’ passed by a little too much. And I didn’t buy some things like Cecelia not knowing about Alice’s illnesses and Rowan’s problems; nobody noticed? And then suddenly, I had tears in my eyes again because I cared for Alice and Rowan.

So, while I was sure at the beginning that this was going to be a 4 or 5-star read, in the middle of the book, my rating dropped to 3 stars. In the end, I settle for 3.5 stars, rounded up to 4. Because I can’t rate a book 3 stars, that made me cry multiple times.

I received an ARC from Penguin Random House Children’s UK and Netgalley in exchange for an honest review.
Profile Image for Nadine Schrott.
682 reviews65 followers
November 30, 2022
Hmmm....ehrlich gesagt habe ich mir anfangs mit diesem Jugendbuch sehr schwer getan.....
Doch dann hat mich die Geschichte um die schwer kranke Alice doch noch gefangen nehmen können....!

Alice leidet an einer schweren chronischen Krankheit, die ihr Leben und das ihrer Eltern bestimmt. Sie kann das Haus kaum verlassen und ist an ihr Krankenbett gebunden. Sie teilt sich ihre Energie in "Spoons" ein...doch diese reichen kaum für die Teilnahme am normalen Alltagsleben.
Deshalb organisieren ihre Eltern Online Web Cam Streamer, die Alice so ihr Leben ins Krankenzimmer bringen.
Doch einer dieser "Augenträger" verunglückt....und Alice ist schwer traumatisiert.
Rowan übernimmt den vakant gewordenen Platz....doch auch dieser junge Mann verursacht Probleme....

Anfangs war ich regelrecht genervt von dem zähen, langweiligen Leben von Alice...doch dann hat mich ihre Geschichte doch noch gepackt....und schlussendlich muss ich dieses Jugendbuch mit schwerem Thema doch empfehlen...!

Lesenswert!
Profile Image for Polly.
64 reviews8 followers
March 8, 2021
While there is a necessity for books exploring the spectrum of ability on young readers’ bookshelves, their presence is sadly far and few between. For this reason (among many many others), The World Between Us, is a much needed addition to our YA literary canon...and, oh, what a welcome it deserves! Narrated by 16-yr-old Alice, this title illustrates what it is like to navigate life with an undefined chronic illness. Bedbound by a sparsity in energy, Alice lives vicariously through the lives of others via a site called Stream Cast. Streamers, that her mother has enlisted, wear cameras on their chests while going about their everyday lives and allow Alice to leave her bedroom, without ever having to leave her house.

As Juckes mentions in her book, around 15 million people are currently living with a chronic illness here in the UK. Sadly, not all illnesses are clearly diagnosed and there are many like Alice who have to find new and innovative ways to live around their condition. Alice, as a protagonist, is a very positive person and, while she of course struggles with being left behind by friends, she is a strong advocate for making the most of what you’ve got. Her life is different and there are difficulties, but there is still joy and happiness to be found from the comfort of her bedroom, such as watching marine documentaries on her better days. The idea of Stream Cast is unique and it offered a glimpse of a reality I have seldom thought about. It showed me that it is so easy to take our health and ability for granted, and I am glad that young people like Alice can see themselves, or those they know, reflected back at them in literature. I have several friends that are bedbound most days of the week, and this book really opened my eyes to how they might be feeling on a day-to-day basis. I hope that this book will promote a greater understanding and inclusivity around these conditions, as no one should have to fight to be believed or seen. Using spoons to describe the energy one possesses is a brilliant, yet, simple way of articulating ones needs and managing others' expectations.

There is much to celebrate in this book, however, I think Alice’s slow burn romance with the new streamer Rowan is one of the best elements. Rowan is the first streamer that she is able to communicate with and I think, in many ways, offers her a semblance of the life she had before she got ill. Rowan is the primary carer for his little brother – both his mother and father have walked out on them – and he regularly ditches school. Although an incredibly talented artist, Rowan thinks little of himself, until he starts streaming for Alice. So, enamored by the snippets of the world she gets to see through Rowan, she begins to show him the light in the darkness. The typology is unique, with Rowan’s perspective and speech written in italics within Alice’s own perspective. Juckes cleverly stylises the words on the page to underscore meaning and replicate the interaction at hand e.g. when Alice falls, the word falling gradually falls off the page. I think the relationship with Rowan was developed realistically and I loved that in the end Alice exerts her own agency and does not expect to be saved by anyone – she is the keeper of her own happiness.
Profile Image for Mira123.
669 reviews10 followers
August 9, 2022
Dieses Buch habe ich an einem einzigen Tag gelesen, während ich parallel etwas ganz anderes gemacht habe. Wann auch immer nur eine winzige Pause bei meiner anderen Aktivität entstand, habe ich wieder ein Kapitel verschlungen. Und ganz ehrlich: Es war gut, dass ich es schnell gelesen habe. Denn sobald ich das Buch für eine Sekunde unbeaufsichtigt ließ, schnappte es sich meine kleine Schwester. Ich befürchte, dass ich diesen Roman so schnell nicht mehr wiedersehen werde.

In diesem Buch wird ein Leben beschrieben, dass ich mir überhaupt nicht vorstellen kann. Alice ist chronisch krank. Im Alter von zehn Jahren hat sie sich mit irgendeinem Virus angesteckt, der gerade in der Schule herum war. Doch während es ihren Freundinnen und Freunden schon bald wieder besser ging, blieb Alice krank. In der Zwischenzeit ist das seit mehreren Jahren ihre Realität. Alice kann nicht in die Schule gehen oder ins Schwimmbad. Sie kann nicht auf Geburtstagspartys gehen, sie kann keinen Spaziergang machen und sich noch nicht mal selbst waschen. Selbst sich in ihrem Bett aufzurichten, kostet ihr enorm viel Energie. An einem guten Tag hat sie vielleicht zehn Spoons. "Spoons" sind Energieeinheiten, die ein Mensch zur Verfügung hat. Dieses Wort wird vor allem in der Community der chronisch kranken Menschen genutzt und bezieht sich tatsächlich auf Löffel. Ihr könnt euch das bildlich vorstellen. Während ich als gesunder Mensch eine imaginäre Besteckschublade mit so vielen Spoons zur Verfügung habe, dass ich eigentlich fast nie dazu komme, sie alle aufzubrauchen, hat Alice eben nur so um die zehn Löffel, die sie sich einteilen muss. Verschiedene Aktivitäten kosten ihr unterschiedlich viele Spoons: Sich im Bett aufzusetzten, was in meiner Energiebilanz wahrscheinlich nicht mal aufscheinen würde, kostet ihr beispielsweise einen Spoon. Ein Bad zu nehmen, kostet fünf. Auch das gehört zu den Dingen, über die ich nicht mal nachdenken muss. Während ich aber mit Spoons um mich werfen kann und mich auch dann nicht vor Konsequenzen fürchten muss, wenn ich mich mal richtig auspower, muss Alice stets ihr aktuelles Energielevel im Blick behalten, denn wenn sie über ihre Grenzen geht, bezahlt sie das mit Migräneattacken und Brainfog. Gerade der Brainfog wird in diesem Buch sehr verständlich gemacht, indem an den Stellen, an denen Alice gerade an Brainfog leidet, nur wenige Worte auf einer Seite gedruckt wurden und zwischen diesen Worten viel Abstand herrscht. Das entspricht auch der Beschreibung, die ich zum Thema gefunden habe: Das Denken ist verlangsamt, die Konzentration beeinträchtigt und das Bewusstsein getrübt.

Der einzige Weg für Alice, von der Welt außerhalb ihres Zimmers etwas mitzubekommen, sind Livestreams. Ihre ehemalige Babysitterin nimmt sie nach Tokio mit, ihr Cousin filmt sich dabei, wie er Videospiele spielt und einen Arbeitskollegen ihres Vaters begleitet sie so zum Kickbox-Training. Alice verbringt viel Zeit mit diesen Streams, was für mich gerade zu Beginn des Buchs eine Stimmung erzeugte, die mich fast an einen Science-Fiction-Roman erinnerte. Doch erst bei ihrem neuen Streamer Rowan ist es ihr möglich, auch mit diesem Streamer zu sprechen. Also tut Alice genau das: Sie spricht mit Rowan und bittet ihn darum, Dinge zu tun, die sie aufgrund ihrer Krankheit nicht tun kann. Dass sie krank ist, hält sie allerdings geheim. Und auch Rowan hat Geheimnisse, die er Alice nicht verratet. Kann diese Geschichte gut ausgehen?


Die Autorin zeigt bei der Beschreibung der Protagonistin und ihrer Krankheit, aber auch bei den anderen schwierigen Themen, die sie anspricht, viel Fingerspitzengefühl. Offensichtlich hat sie viel Recherche geleistet. Zumindest gehe ich davon aus, da ich weder im Buch noch online einen Hinweis darauf gefunden hätte, dass Juckes selbst von einer chronischen Krankheit betroffen wäre.

Mein Fazit? Großartiges Jugendbuch darüber, wie sich ein Leben mit einer chronischen Krankheit anfühlen kann.
Profile Image for eirignis.
231 reviews7 followers
June 6, 2023
3,5⭐️ J’ai eu beaucoup de mal à me mettre dans cette lecture mais il y a un moment où les choses s’installent vraiment et on veut se battre avec Alice, c’était très touchant et c’est surtout un beau messsage pour toutes les personnes atteintes de maladie chronique 💞
Profile Image for pizza boy.
254 reviews2 followers
May 19, 2022
הרעיון לספר מדהים, אך הביצוע גרוע.
Profile Image for Elsie.
42 reviews7 followers
February 24, 2021
READ THIS IF... you like young adult romance, using art to understand the world, and books that speak honestly about disability and chronic illness.

THE STORY... Alice is a 17 year old wannabe marine biologist. She’s also bed bound. StreamCast allows her to live through other people’s lives, but new streamer Rowan helps her take control.

THE WORLD BETWEEN US… has some very important things to say. As someone whose family is affected by chronic illness, this felt like a window into parts of my reality. Sarah has done such a good job of explaining what day to day life with a chronic illness is like: from using ‘spoon theory’ to explain limited energy, to showing the frustration of trying to find a diagnosis for an unexplained illness, and the fear of being perceived as not trying hard enough to get well.

The slow-burn of Alice and Rowan’s relationship was captivating. I loved how strongly they believed in each other even without ‘meeting’. The unique typesetting of scenes where Alice and Rowan were virtually ‘together’ was such an imaginative way to convey their different personalities, and their growing feelings for each other. Sarah has a beautiful writing style, with wonderfully descriptive scenes, and outstanding lines that made me stop to re-read them more than once.

NOW… I’ll be recommending this to all my fellow YA lovers - and hyping this up a lot when it’s released! Whether you or someone you know has a chronic illness, or if you use your reading to broaden your horizons (which surely is the point of reading!) this is a book you need to pick up.
Profile Image for Kimysmile.
898 reviews36 followers
January 25, 2023
J'aime tellement ce type de roman Young Adult ! Ceux qui diffusent des messages, des valeurs et du cœur. 💛 Sarah Ann Juckes nous propose une histoire particulièrement originale et forte autour de la thématique des maladies chroniques et même plus précisément autour des barrières, celles que l'on se met soi-même et celles que la vie nous impose. Et j'ai été profondément touchée par la manière dont tout ça est abordé et je ressors ravie de ma lecture.⠀

Nous suivons ici Alice, souffrant d'une maladie chronique. Elle a beau être malade et confinée dans son lit, Alice sort de sa chambre tous les jours. Ce miracle, c’est la plate-forme Stream Cast qui le permet. La jeune fille y suit différentes personnes par caméra interposée et vit à travers elles. Jusqu’au jour où, sous ses yeux, un streamer est tué dans un accident. Traumatisée, Alice va pourtant suivre un nouveau streamer, Rowan. Seulement, Rowan aussi a un secret...⠀

Cette histoire est très émouvante. C'est une ode à la vie, au courage. C'est une histoire qui fait la part belle aux parents d'enfants malades, aux adolescents faisant face à des responsabilités plus grandes qu'eux, à l'amitié et à l'amour. J'ai aimé toutes les facettes de ce roman. ⠀

J'avoue, il m'a fallu quelques chapitres pour entrer concrètement dans l'histoire parce que la narration est un peu atypique (mais rythme tellement bien le récit). Mais une fois tout bien en place dans ma tête, j'ai été embarquée avec Alice et Rowan. Et selon moi d'ailleurs, la qualité du roman augmente au fil des pages, et même si mon petit cœur n'a pas été totalement comblé par la fin, j'en suis ressortie le cœur gonflé d'espoir et d'ondes positives !⠀

Vraiment, c'était trop bien. Je recommande. ♥️⠀
Profile Image for Steph Warren.
1,759 reviews39 followers
May 6, 2021
*I received a free ARC of this book, with thanks to the author and Penguin Random House. The decision to review and my opinions are my own.*

I am so excited about this book because the books which feature a main character with a chronic illness, especially one so very similar to my own (ME/CFS), are few and far between!

Alice is a teenager but spends most of her days trapped in bed, watching and listening to other people out there living life. She does get some visits from friends, but most of her vicarious living comes via a livestream where friends (of her parents, mostly) can show her their activities – cycling, exploring Japan, gaming. It is a safe way of experiencing what she is missing out on. Until she ‘meets’ her new streamer, Rowan, who is her age and has problems of his own. Rowan forces Alice to think about life and her illness in different ways, and eventually to step out of her comfort zone and back into life again.

That’s not to say, for any fellow spoonies reading this, that she meets a boy and is magically cured and able to go back to ‘normal’ teen life! The author clearly either has personal experience with chronic illness, or has done VERY extensive research, because Alice’s experience are realistic and raw, and there is no magic solution that will turn her from a very poorly person into a fully-recovered one over the course of the story.

What is important here, is the insight into how it feels to be trapped in a sick body, with no answers, no treatment, and no visibility on the outside of how broken you feel. Alice talks about spoons and pacing, losing friends/dreams/hobbies, feeling like a burden, sudden crashes/flares. Yet this isn’t a book about being ill. It is a YA love story.

So, despite all of her health issues, Alice meets Rowan. And through Rowan, we see another side of such issues, as he is a young carer with the weight of the world on his shoulders and no support. Their blossoming friendship and mutual support gives hope to young people in both situations, that there is help and understanding available if you can bring yourself to reach out for it.

This is an uplifting book – not in an ‘inspiration-porn’ way, but because I felt SEEN and represented and cannot overemphasise how good that feels. I immediately began planning to get my friends and family members to read this too, so they can get that glimpse into what life is like when you’re living from your bed.

My final thought is a pondering about the use of virtual reality and live streaming in the story: could this be the future for an enriched, bedbound life for the #MillionsMissing? I’d like to think so!



'By the time I’m upright, I’m already out of breath.
Mum slides off my headphones. ‘How many spoons are we starting with today?’
‘Ten, I think,’ I say, although I said that yesterday and I was spent by eight.'

Sitting up in bed = 1 spoon

– Sarah Ann Juckes, The World Between Us


Review by Steph Warren of Bookshine and Readbows blog
https://bookshineandreadbows.wordpres...
Profile Image for Katrina.
142 reviews6 followers
February 23, 2021
A truly beautiful book.


Sadness. Heartbreak. Grief. Hopelessness.
But then,
Creativity. Humour. Happiness. Hope. Love.


I raced through this book, could not get enough. I loved the insight into the world through the eyes of Alice, her day-to-day struggles, and hopes for the future. I can’t imagine how it must be to lose your ‘spoons’ so quickly, through the simplest of activities (to others) then be utterly drained, have the mental fog, and the ‘floating’ for hours or days after. Even with all this in her life, Alice remains positive, puts on a brave face for her parents and friend Cecelia.


Then Rowan comes along and allows Alice to live a Life. To make some choices. Have different experiences. The love that grows between them is so precious. Rowan has things going on in his life that he feels he cannot share, and Alice sees this and wants to support him. Their love story is beautiful but tragic.

By the end, I had tears in my eyes and my heart leaping out of my chest. Whilst the resolution to their stories is realistic, in my head, I have pictured further into the future for the two of them and where their story may lead.


Thank you to Penguin Random House for the proof copy.

Profile Image for Kat.
1,176 reviews3 followers
February 6, 2021
Oh by goodness I am in absolute pieces after reading this wonderful,brilliant book.
So this was read that right from the beginning I knew I was going to love it was heartbreaking and sad and yet at the same same time filled with so much love, humour and hope and I read it in almost one sitting. I forgot everything around me whilst I was reading it was just me in Alice’s world and it had everything you would wish for in the most beautiful story I have read in a long time.Sarah Ann Juckes has excelled herself in both the writing and crafting of this impossible to describe book it really is an astonishing read.
In this scary time and world we are living in at the moment this book had the ability to take you away from all that and for that I have massive praise for Sarah and look forward to reading her next book.
Please do yourselves a favour pick this book up it really is one not to be missed its sensitivity is sublime and a joy to read, I loved it this damn book so much !!
My thanks to Sarah Ann Juckes, NetGalley and Penguin Random House for giving me the chance to read the ARC in exchange for my honest opinion.
Profile Image for Svenja.
30 reviews3 followers
April 28, 2023
Ein Einblick in eine Welt die sich ein Mensch mit lebendigem Leben kaum vorstellen kann.
Alice lebt mit einer chronischen Krankheit die sie ans Bett fesselt. Jedes Gespräch, jede Bewegung nimmt ihr kraft, von der ihr am Tag nicht viel bleibt.. übers Internet kommt ein Junge ( Rowan) in ihr Leben.
Es ist eine ganz andere Liebesgeschichte & die zeigt wie wertvoll die kleinsten Dinge sind & die aktive/ lebendige Menschen oft übersehen oder als selbstverständlich empfinden.
Leseempfehlung!
This entire review has been hidden because of spoilers.
Profile Image for jente.
192 reviews
July 12, 2022
even if this was not as relatable for me as i expected, it is an important and unique book. i do feel like the characters and the romance could've been more developed tho
Profile Image for Mag.
497 reviews26 followers
May 8, 2024
3.5⭐ un roman important pour faire ouvrir les yeux sur les maladies invisibles.
Profile Image for Graine Milner.
335 reviews9 followers
July 29, 2021
Perfect for fans of The fault in our stars and Five feet apart
Profile Image for Bee.
102 reviews12 followers
March 22, 2021
The World Between Us by Sarah Ann Juckes is one of the most gut-wrenching and hauntingly beautiful novels that I’ve read thus far this year, and it hits the nail on the head of what it means to be chronically ill. That is why I have to rate it 🌟🌟🌟🌟🌟 (5/5) stars!
Alice is a teenager suffering from an unnamed chronic, invisible illness and she sees the outside world only from her bed with the help of a streaming app, which has become her lifeline. But when a tragic accident happens and sends her life even more topsy-turvy than it already is, she is left unsure of where to turn, where she can go to escape her illness and who she can trust. That is, until, a new streamer is suggested to her - Rowan. Alice doesn’t want to like him; she doesn’t want to trust him with her secret, but she likes him. But he has his own secrets, too.
I really wasn’t sure, initially, how I felt about Alice as a main character, or how the book was written, but as it progressed I found myself loving it. It captured the essence of chronic illness and what it’s like to only be able to see the world through other peoples eyes perfectly.
One of my favourite parts about this book is that it wasn’t romanticised. Rowan never pitied her, and their relationship didn’t change because of her illness. It was just a part of it. That means so much to me.
Genuinely cannot recommend this book enough! If you read one book this year, let it be this one. Truly beautiful, it has left a mark on my heart.
Profile Image for Célia Mrtns.
94 reviews30 followers
February 15, 2023
Je ne m’attendais pas à ce que ce livre devienne pareil à un livre « doudou » pour moi.
Dans ce roman, on suit une jeune fille du nom de Alice, souffrant d’une maladie qui l’empêche de vivre comme elle le souhaiterais réellement.
Entourée de parents aimants, elle passe la plupart de ses journées sur une application, « Stream Cast » sur laquelle elle peut suivre des personnes de son entourage et vivre à travers eux.
Chaque effort qu’elle fait nécessite un nombre de cuillères (d’énergies). Quand elle fait la connaissance de Rowan, un peu par hasard, elle a l’impression de revivre de nouveau.
Amour & amitié sont au premier plan de ce roman. La maladie chronique dont Alice souffre est abordée de façon douce tout en restant réelle et puissante. Néanmoins, ce livre est porteur d’espoir et je ressors de ma lecture en ayant laissé échapper quelques larmes… difficile de trouver les mots justes. ♡
Profile Image for Sonia Donelli.
2,513 reviews115 followers
June 26, 2021
http://www.esmeraldaviaggielibri.it/i...

Il mondo tra di noi di Sarah Ann Juckes, young adult in uscita oggi, 8 giugno, grazie a Rizzoli.

Rizzoli ci sta donando degli young adult splendidi, io amo particolarmente il genere, apprezzo le tematiche che vengono affrontate, amo immergermi in storie così lontane da me e vengo rapita quando sono raccontate con così tanta grazia. In questo caso Sarah Ann Juckes pone sotto i riflettori le malattie croniche e l’abbandono di minori e lo fa con una delicatezza e una sensibilità che rendono Il mondo tra di noi un libro adatto dai 12 in su. Non dovete porvi limiti, non dovete pensare ‘non fa per me perché i protagonisti hanno sedici anni’, sbagliereste su tutta la linea. Questo libro mi ha fatto lo stesso effetto di Colpa delle stelle, nonostante le difficoltà dei protagonisti mi ha lasciato tanta serenità e il cuore stracolmo di gratitudine. Non è facile parlare di malattie croniche, molti non sanno nemmeno che esistono, minimizzano la loro gravità, proprio perché non sanno cosa significhi misurare la propria giornata in cucchiai di energia. Non capiscono quanto sia brutto sentire le forze venire meno e faticare perfino a scendere al piano di sotto o parlare con la propria migliore amica. Eppure queste malattie esistono e sembra impossibile trovare una cura perché, nonostante i mille esami affrontati, non si riesce a trovare la causa scatenante e quindi non si può intervenire.

Tirarsi su in posizione seduta = 1 cucchiaio I cucchiai sono unità d’energia. Quando sei costretto a letto da una malattia cronica, come me, le unità non possono essere molte.

Quando ti svegli avendo a disposizione solo dieci cucchiai vuoi che ciascuno di quei dieci abbia il suo valore.

Alice è costretta a letto da quando la Malattia le ha tolto ogni energia, passando da un virus da cui non guariva, all’impossibilità di seguire le lezioni a scuola o uscire di casa, fino a non riuscire più ad alzarsi dal letto. Alice è viva ma non può più fare niente di quello che amava e cerca di avere un contatto col mondo esterno grazie alla sua migliore amica Cecelia l’unica a non averla abbandonata, ma a cui non ha mai avuto il coraggio di dire davvero in cosa consiste la sua Malattia, e a Stream Cast: un sito di streaming a cui può collegarsi in qualsiasi momento con il computer e vivere in diretta ciò che gli streamer stanno trasmettendo. Proprio mentre è in bicicletta con Wesley lui ha un incidente che gli costa la vita. Per Alice è un duro colpo che la porta a interrogarsi su molte cose, dalla sua condizione alla vita stessa, una perdita che le darà modo, starà a voi scoprire grazie allo zampino di chi, di entrare in contatto con un nuovo streamer: Rowan. Rowan che è incasinato, parecchi incasinato, lui è uno studente, un artista ed è soprattutto un bravissimo ragazzo che si prende cura del suo fratellino.

Alice non riesce a resistere e il rapporto con Rowan non è come quello con gli altri streamer, con lui comunica, si raccontano a vicenda, ma non ha il coraggio di dirgli della sua Malattia, certa che altrimenti lui se ne andrebbe. Alice non vuole essere trattata diversamente, non vuole essere compatita, ha già perso troppo, ma le bugie si sa hanno le gambe corte e così un giorno Cecelia si rende conto della gravità di quello che Alice sta passando. Questa ‘confessione’ all’inizio le allontanerà, Cecelia si vergogna per essersela presa con Alice per non essersi presentata alla sua festa di compleanno, e sarà proprio l’intervento di Rowan a farle capire che Alice senza di lei è persa.

Ho amato l’evoluzione del rapporto di Alice e Cecelia e mi è piaciuto che l’autrice abbia dato così tanto spazio a questo personaggio secondario, così come ho amato i genitori di Alice e il fratellino di Rowan. Un corollario di personaggi positivi in grado di toccarti il cuore.

Voglio Rowan. Lui non si limita a lasciarmi guardare: mi raggiunge oltre lo schermo, mi prende per mano: è una sensazione elettrica. Mi fa sentire che qui, in questa stanza, le mie decisioni hanno importanza.

Rowan e Alice sono una coppia dolcissima, sono in grado di spronarsi a vicenda, di darsi forza, di far desiderare all’altro qualcosa di meglio della vita che sta vivendo. Sono certa che, se darete una possibilità a questo libro, ve ne innamorerete com’è successo a me perché Il mondo tra di noi è uno di quei romanzi young adult che difficilmente di possono dimenticare.
Profile Image for Carole.
1,965 reviews62 followers
January 23, 2023
4.25/5

https://my-bo0ks.over-blog.com/2023/0...


Contrairement à ma lecture précédente, ce n'est pas la couverture de Entre toi et moi, le monde qui m'a donné envie de le découvrir, mais le pitch et le fait qu'on l'associait à Everything Eveything. Et comment vous dire à quel point je suis heureuse d'avoir découvert ce roman, puisque qu'à l'inverse du précédent, j'ai adoré ma lecture, malgré une couverture qui n'était pas à mon goût. Et oui, il ne faut pas juger un livre à sa couverture (j'y travaille).

Dans Entre toi et moi, le monde, nous faisons la connaissance d'Alice. Alice qui, depuis quelques années subit les aléas de sa maladie. Une maladie chronique qui lui coûte chaque jour un peu plus. Imaginez qu'un simple sourire, vous coûte une cuillère. Une cuillère, une unité d'énergie. Désormais, son quotidien se résume à sa chambre, son lit. Alors pour s'échapper un peu, elle va sur une plateforme qui lui permet de suivre des personnes (des connaissances de sa famille) dans leur quotidien par le biais d'une caméra qu'ils portent en continu. Ainsi, Alice suit Wes, un prof et collègue de sa mère dans ses balades à vélos. Jusqu'au drame. Un événement traumatisant qui va l'amener à rencontrer Rowan sur Stream Cast et s'ouvrir de nouveau au monde.

Entre toi et moi, le monde est un roman terriblement poignant. Clairement, on est sur des émotions tout du long. Malgré une part de drame assez importante puisqu'Alice est malade et subi cela au quotidien, ce roman n'est pas pour autant déprimant. Car Alice est entourée de parents aimant qui font tout pour lui donner le sourire, même quand ça ne va pas. Un papa en or qui fait des blagues, une seule et uniquement amie qui reste malgré les années et Rowan, un garçon qu'elle n'a jamais rencontré en vrai et qui ne sait rien d'Alice si ce n'est ce qu'elle laisse entrevoir. Ce qui les pousse tous les deux à aller plus loin encore. Ainsi, à quelques pages du début, j'avais déjà pouffer de rire puis été émue aux larmes.

J'ai trouvé particulièrement bien traité le sujet de la maladie d'Alice dans ce roman. On sent que l'autrice s'est documentée et ne s'est pas cantonnée à rester sur la surface pour son histoire. Clairement, je me sentais totalement dedans, aux côtés d'Alice, dès les premiers chapitres. Alice est une héroïne attachante, courageuse et qui affronte chaque journée comme elle peut. Au fil des chapitres, on comprend que chaque geste du quotidien, chaque effort (même minime) demande de l'énergie, une cuillère ou plus. Cela pousse le lecteur à réfléchir à tout cela tout en montrant la détermination d'Alice et de ceux qui en souffrent à ne pas baisser les bras malgré les difficultés. Car oui, des difficultés Alice va en traverser et ça ne sera pas de tout repos.

La relation Alice/Rowan arrive doucement mais surement. D'inconnus, à "correspondants" à travers leurs rendez-vous de stream, ils vont se confier l'un à l'autre sous couvert d'une sorte d'anonymat. Tout en se poussant l'un et l'autre vers le haut, ils vont nouer une relation d'amitié très forte pour se tourner ensuite vers de l'amour. Et mon cœur de guimauve a littéralement fondu pour ces deux-là. Une romance toute douce, qui ne prend pas toute la place et met un peu de baume au cœur dans cette histoire.

Clairement, je suis passée à pas grand chose du coup de cœur. On passe du rire, aux larmes, de l'émotions à la douceur tout au long de ce roman. Les sujets abordés sont vraiment important et notamment en romans young adult. Les maladies chroniques sont encore trop peu abordées dans littérature et je trouve d'autant plus intéressant et important que cela se fasse. Je n'avais pas envie de quitter Alice, Rowan et les autres et j'avoue que j'aurais plus de pages sur la fin pour une conclusion encore plus belle mais quelle claque ce roman ! A découvrir sans attendre !

Profile Image for lifefullofwords ✨.
201 reviews5 followers
September 24, 2022
Nach langer Zeit habe ich mit diesem süßen Buch mal wieder ein Jugendroman gelesen. Im Mittelpunkt steht Alice, ein chronisch krankes Mädchen mit einer unklaren Krankheit, die sie leider ans Bett fesselt. Sie hat nur wenig Energie am Tag übrig, die sie in „Spoons“ einteilt bzw. einschätzt und so auch mit ihren Eltern einen Weg findet, die sie durchweg so so süß unterstützen.

Auch wenn Alice in ihrem Zimmer bleiben muss, l e b t sie, indem sie ein „Fenster“ nutzt, der ihre vier Wände quasi zu einem riesigen Ozean und der großen weiten Welt macht. Mehrere Menschen schnallen sie über einen Stream durch eine Kamera an ihre Brust und sie verfolgt quasi das Leben draußen durch ihre Augen. Die Streamer werden für sie ein Fenster in die Welt.

So lernt sie eines Tages auch ihren neuen Streamer Rowan kennen, der alles verändert. Nicht nur, weil sie bei ihm keine stumme Teilnehmerin ist und mit ihm reden kann, sondern vor allem, weil sie eine Wellenlänge finden und immer wieder zusammen tolle und bewegende Dinge erleben.

Alice hat eine blühende Fantasie und eine große Liebe für den Ozean, den sie sich im Zusammenhang mit ihrer Situation, ihrer Krankheit und für ihr Leben ausmalt. Der Titel passt für mich daher zu 1000% zu dem Buch, was ich so so süß finde.

Mir wurde schnell die Tiefe hinter dem Buch bewusst. Nicht nur, dass das Familienleben und ihre Beziehung zueinander durch Alice‘ Krankheit geprägt ist - es ist einfach herzergreifend, wie ihre Eltern auf sie achten und alles geben, um mit der Situation zurechtzukommen und eine Lösung zu finden. Es ist berührend zu sehen, wie Alice verzweifelt beobachtet, wie andere Menschen durchs Leben huschen, ihre Handy anstarren und das wesentliche übersehen - die große weite Welt da draußen aus den Augen verlieren. All die schönen Dinge, die für sie nicht möglich sind.

Das Buch erzählt nicht nur eine wahnsinnig süße und ergreifende Geschichte - es gibt durch die bedeutungsschwere auch Gedankenanstöße für mehr Achtsamkeit für kleine Momente und die Wunder, die die Welt täglich bereithält. Auch die Bedeutung und der Zusammenhalt von Familie bekommt hier nochmal einen richtigen und vor allem wahnsinnig schönen Fokus. Für mich stand das alles viel mehr im Vordergrund, als die Liebesgeschichte zu Rowan. Auch wenn ich die Geschichte und das kennenlernen zwischen ihnen niedlich fand, habe ich es vergleichsweise weniger authentisch wahrgenommen, weil es mir etwas zu schnell und unrealistisch vorkam. Der Umgang mit Alice Krankheit hat mir dagegen sehr gut gefallen.

Eine so so ergreifende Geschichte, die ich wärmstens empfehlen kann!

✩✩✩✩, 5 / 5 Sterne
Profile Image for Lucie.
1,059 reviews38 followers
March 1, 2023
Ce livre m'a agréablement surprise et cette couverture ne rend pas justice à cette histoire qui véhicule un beau message.

Nous faisons la connaissance d'Alice qui souffre d'une maladie chronique qui l'empêche de vivre pleinement sa vie. Chaque geste du quotidien est une épreuve et chaque journée lui coûte chaque jour un peu plus. Elle l'explique très bien elle-même, mais chaque interaction, chaque geste et chaque respiration lui coûte une cuillère ou parfois plus. Et quand ces cuillères sont épuisées, elle n'a plus aucune énergie et ses batteries sont à plat.

En quelque sorte prisonnière de sa chambre Alice s'évade sur une plate-forme de streamer qui film leurs exploits. Ses vidéos c'est son échappatoire et sa famille ayant validé les streamers elle peut suivre le quotidien de ces personnes sans avoir peur d'images qu'elle ne souhaiterait pas voir. Après drame impliquant l'un des streamers, sa mère arrête son choix sur Rowan un jeune homme captivant qui va lui redonner le goût de vivre.

J'ai trouvé le sujet de la maladie très bien traité et j'ai pris conscience de son invisibilité dans la littérature. Alice peut compter sur le soutien sans failles de ses parents, toujours prêts à redoubler d'inventivité et honnêtement ses parents sont exceptionnels et lui prépare de belles surprises sans jamais baisser les bras. Cette maladie fait partie de son quotidien, mais sans trop savoir pourquoi elle est parvenue à cacher la gravité de son état de santé à sa meilleure amie. Tout comme elle va inconsciemment tenter de le cacher à Rowan.

De son côté le jeune homme à ses propres démons à surmonter et ses moments avec Alice vont également lui faire beaucoup de bien. Ils vont développer des sentiments l'un envers l'autre et on va les voir doucement tomber amoureux. J'ai trouvé qu'il se dégageait une certaine maturité dans leurs échanges ils ont tous les deux un passif qui les fait savourer les choses simples.

Je me suis laissé complètement porter par l'histoire, la plume est agréable a suivre et les personnages m'ont immédiatement touché en plein cœur. Les chapitres sont courts et la lecture est fluide. Difficile de rester indifférente à cette histoire et aux nombreuses émotions qu'elles véhiculent.

Ma chronique : my link text
Profile Image for Taylor Healy.
65 reviews1 follower
August 18, 2021
4.5 stars.

I found this book to be so inspiring and beautifully poignant. I was so pleasantly surprised by this read - I thought it would be quite slow but it totally captivated me.

The World Between Us is about a young woman named Alice, who is bed bound by a virus she contracted when she was ten. However, Alice refuses to let this virus beat her and experiences life vicariously through others through a streaming service. Until, one day, there's a new streamer on the platform, a young man named Rowan. Rowan takes Alice on various adventures and, as their friendship grows, a slow-burning romance develops. But Alice doesn't want Rowan to know the extent of her illness; and Rowan has a few secrets of his own. Together, they'll overcome their darkest secrets together.

This book took me by surprise completely. I truly, truly loved it. I found Alice to be so strong, so inspiring - I've never encountered a character quite like her. I haven't read many own-voices stories but, after reading this book, I can't wait to explore more. Although she couldn't explore things physically, she still saw the world so vividly and truly appreciated the world's beauty from her bedroom. She was just such a wee cutie. And Rowan. UGH. He was amazing, too. He was so patient and caring towards Alice, it was so inspiring and just so lovely to read about. His relationship with his younger brother also reminded me a lot of Jack and Matty's relationship from What Beauty There Is. Cecelia was also a really fun character to explore.

When I read the synopsis of this book I was worried I would get bored about halfway through it but I couldn't have been more wrong. I found the whole book captivating and I feel like I learned a lot from it. It put a lot of things into perspective for me and I have found a new sense of gratitude in my life. I felt Juckes really captured what it's like to live with a chronic illness and handled it both sensitively and beautifully.

Bottom line: Just read this beautiful book.
Profile Image for Sophie Jones.
484 reviews6 followers
January 7, 2022
Alice has a chronic illness which means she cannot go out without suffering episodes. To help she logs into stream cast and watches friends/family live their lives in the outside world. However, after one of her streamers dies she starts following someone new. Rowan is hiding a secret and when he starts streaming for a mystery person as part of a project for school, he feels like she is the only one he can talk to. And so Rowan and Alice start helping one another and through the stream, both lives are healed.

Things I liked:
- Nice focus on chronic illness and what it's like to live bedbound.
- The characters were all really nice! (that's rare in YA).
- I enjoyed how Juckes focused on beauty and how beautiful the world is. This was highlighted as Alice mentioned all the aspects of the outside world that Rowan had taken for granted. Was refreshing.

Things I didn't like:
- The way the story was told was a bit odd at times. Rowan's sections were in italics and when that voice cropped up it did throw me and confuse me for a while.
- Due to the nature of the book, there wasn't a lot going on. There was a lot of filler and waiting around till the characters spoke again.
- The connection between Rowan and Alice felt a little quick.

A YA romance that sheds light on what it's like to suffer from chronic illness. An easy read with a plot that's not complicated to follow. It has a nice message and will please romance fans. For me, there wasn't enough story to be completely engaged. The plot was a bit weak which left plenty of filler pages. Not my favourite but not bad. 3.5.
Profile Image for Elena.
44 reviews14 followers
July 20, 2023
Quotes:
"The world is packed full of beautiful things with hidden gold, if only you look at them in the right light."

"I would be Living. With a capital L. I would be swallowing the world whole. I would dive to the bottom and climb to the top. I would squeeze the earth in my fists and plant myself down and let my roots clutch at everything, from the everyday to the extraordinary."

'And I feel that Living breathing on my toes. I feel it hard under my back. I smell it as something cold and freshly cut.'

'But there are different kinds of cures. Cures for worries.'

'I'm choosing colour because with Alice it's there.'

'I very much want to hold your hand right now, but I can't, so you're just going to have to do it yourself.'

'He pinches his eyes and I see the same worry lines on his face that I see on mine in the mirror, always hiding what we are. What we're really feeling. Always pretending that we're stronger than we are, when sometimes-sometimes- we perhaps aren't. And it's okay, isn't it? It's okay to show someone that you're disappearing. Especially if that helps them find their own lines.'

'We kiss and the world spins and swims and melts away, so we're caught in between space and time.'

'She kisses me like she's trying to fit a whole lifetime into each brush of her lips.'
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