My Brilliant Life

<blockquote> <i> <b>Books were everything to me—a grandmother who told me stories all night long, a teacher who imparted all the knowledge in the world, a friend who shared their secrets and problems.</b> </i> </blockquote><br /><br />According to <a href="https://rarediseases.info.nih.gov/diseases/7467/progeria#:~:text=Statistics,-Listen&amp;text=It%20has%20been%20estimated%20that,the%20world%20have%20this%20condition." rel="nofollow noopener">The Genetic and Rare Diseases Information Center (GARD)</a>, an estimated 1 in 4,000,000 babies are born with progeria, and about 1 in 20 million people in the world have this condition. If you look up progeria online, you may recognize what it is based on the pictures of individuals with this disease, but if you are/were like me, you may not have known what the disease was called. As of 2020, Tiffany Wedekind of Columbus, OH, is believed to be the oldest survivor of progeria at 43 years.<br /><br />In case you didn't know, progeria is a rare condition that causes children to age rapidly. Symptoms, such as hair loss and slow growth, usually start to occur when they are two.<br /><br /><blockquote> <i> <b>Sometimes in life, the answer we search for so avidly reveals itself elsewhere, and the question we ask is born from a context that has nothing to do with the answer.</b> </i> </blockquote><br /><br /><i>My Brilliant Life</i> follows the life of a South Korean boy, Areum as his condition of progeria develops. His parents had him at the young age of 16 and found out about his condition when he was two. Told through past and present memories and moments, Areum tells us much about his childhood and how he developed. He hopes to finish up a manuscript he is writing of his parents and give it to them as a present before his 17th birthday. He also has many conversations with his 60-year-old neighbor, Little Grandpa Jang, and soon finds himself sharing secrets and memories with another individual who is also sick. <br /><br /><i>Why do people have children?</i><br /><br />This is a question Areum asks himself.<br /><br />Is it because they want to find happiness in someone else?<br />Is it because they want to grow up?<br />Is it because they want to experience what it's like taking care of another human being?<br />Is it because it helps with governmental finances?<br />Is it because they love children so much they want their own?<br />Is it because they want to start a family of their own?<br /><br />Is it all of the above? Is it none?<br /><br />I asked my parents why they decided to have children (my brother and I). My dad said he didn't think about having children when he was young, but as he grew older and you started a life with my mom, his mindset changed as well. He became more mature, and he started thinking differently. He also didn't want the blood to end, and he feels as if the world would end if we didn't have children.<br /><br />I don't have children, but I think about how beautiful they can be. I also think about how frustrating they can be. My parents always tell me so many stories of my brother and I when we were young. A lot of their frustration was caused by my brother, as I have always been the obedient and introverted child, while my brother was always the rebellious extravert. But every time I recall older memories, I think about how carefree and beautiful life was. Life is still beautiful, just a lot sadder and difficult. Areum was the complete opposite of this.<br /><br /><blockquote> <i> <b>Maybe that was why people had children. To relive the life they don’t remember.</b> </i> </blockquote><br /><br /><b>Areum has a message for all of us, and that is to live in the moment.</b> How much longer do we have until our life is taken away? Life is borrowed, not forever. We don't know exactly when and at what point we will die, even if we have an idea. Life is too short to drink bad coffee, but it is also too short to dwell on the past too much. Whether we're 15 or 25, 35 or 50, 70 or 80, we should try our best to live in the present moment we have. Who knows when we will get the current opportunities we have in life right now.<br /><br /><b>But that is also why I thoroughly enjoyed this.</b> Areum is carefree. He knows he is going to die, he knows the weird and strange glances people give him are because of his appearance, and he knows he won't be able to do everything other kids his age do. Yet, he doesn't let any of this stop him. He starts to lose his eyesight, he grows weaker day by day, and he becomes dizzy the more active he is, but he still tries his best to remain optimistic, living every minute he still has.<br /><br /><blockquote> <i> <b>“That’s what happens when you’re young. Your heart races over nothing special and you’re devastated over nothing special.”</b> </i> </blockquote><br /><br />Progeria is a very rare condition. It cannot be treated, but medication can be prescribed to lessen the effects. Areum was the type of person who had accepted his fate and knew he and his family could not do anything to prevent what was happening, but he continued to live his life the best he could. I found him to be strong and resilient. He taught himself many things from reading books, grew curious about his parent's relationship, wondered how many words he wouldn't be able to learn, thought about how different his experience would be if he was able to go to school, was curious about everything in the world, and didn't care about what others thought about him. I found his life and descriptions of his condition to be hopeful but tearful. The story itself can be read as emotional, mostly because Areum somehow always manages to treat it as if it is no big deal. For me, it wasn't until the end that I started tearing up as I imagined the scene in my head. <br /><br />It's easy to feel sad for Areum simply because we know what he wants, but we know he can't get it. The most hopeful but emotional parts of this story are those such as Areum's crush on his pen pal, his wish to attend school again, his small but blissful moments with his parents (especially his dad, such as when he's on the trampoline or when he went to the arcade with him). It shows how easily it can be to experience some sort of connection with someone else, as well as see yourself through someone else. Areum knows he will not be able to experience some sort of romantic love and attraction with someone, so his crush on his pen pal is the furthest he can get. It shows how difficult love can be for some to get and how easy it is for others. Those moments also show how easy it is for someone to experience joy in their life and how grateful they are for the smallest things.<br /><br /><b>Areum's experiences made me realize how ungrateful many of us are of life.</b> If he could, Areum would switch his life for anybody else's. He would do it to live their life, no matter how difficult it could have been. I found him to be really brave and courageous as well, especially since he knew there would be many people around him to would look at him strangely.<br /><br />The only minor quality of this book is the length of it. It barely surpasses 200 pages, and while I found it to be a quick and easy read, as well as an emotional one, I wish it could have been a little longer. I was really interested in Areum's life, but the author did not provide enough backstory about him to know him even more. I thought this could have changed, as it would have made the story even more emotional if we had read more about what Areum did growing up. I also would have liked it if we knew more about his life before his parents found out about his disease. There was a little bit about Areum that we learn about, but not enough was explored and recalled. I wish there would have been more about his life, such as his education and school moments, his life before finding out about his condition, and how he was coping.<br /><br />With that being said, <i>My Brilliant Life</i> showed me what the advantage of life really means and how many of us should appreciate the little things more often.<br /><br /><blockquote> <i> <b>This morning I was reading a science magazine. It said that a person would explode in space because inner forces are more powerful than the outer ones. I wanted to tell you that. That we might all be stronger than the outer forces.</b> </i> </blockquote>

I feel this story is an honest portrayal of our complex thoughts and emotions when we face with something unfamiliar and complicated, when things turned out to be so physically and emotionally trying to the point of getting numb, and how we try to deal them with all we have. It really doesn't matter how young or old we are. When life hits with answers for questions we never asked, the best is being there for each other. <br /><br />(First of all, I didn't even know I had this book.<br />Second, I haven't heard anything about this book.<br />Third, I had no idea what the book's about when I picked it up today.)<br /><br />I was just browsing through my unread piles of books and there it picked me. Out of nowhere. And I even thought I was in a reading slump for the past few days.<br /><br />And I'm so glad I read this book. It broke my heart into pieces yet it's so beautiful.<br /><br />The story is kind of weird. It should have reminded me of Benjamin Button but (thank the reading gods!) it didn't much.<br /><br />I loved how easy was to get into the book yet my heart was getting more and more sad because of the situation the characters were involved in.<br /><br />"You shouldn't feel guilty."<br /><br />"How come?"<br /><br />"Because it's a privilege for someone to be sad for someone else."<br /><br />I felt so connected to the character here. More so because he's an avid reader, rather to fill up the void but I know what he meant.<br /><br />Born to clueless teen parents, Areum came to this world amidst all the rumours and the unexpected family around. But as he grew up, an irreversible condition gripped his life and his last moments were expected any day since he celebrated his sixteenth birthday.<br /><br />What I love more about the writing, the story and the characters is that they focus on parent-child bond and what parents see or feel when their children are growing up. It touched my heart and made me feel so loved.<br /><br />A part of the story talks about how the family struggles for hospital expenses and what they had to do to make things work.<br />Another part of it also deals with an old neighbour suffering from dementia.<br />The entire story is a beautiful reading experience. It's subtle yet it hits you differently with its different parts, more so towards the end.<br /><br />And yes, I believe in this too:<br />"Writers are the coolest."

When we meet Areum Han he is a sixteen year old South Korean boy living in a small village with his impoverished parents. He doesn't go to school but has a huge curiosity about everything around him and reads voraciously to learn as much as he can. He makes the most of his life, finding out about his parents early lives, talking to his neighbour and only friend sixty year old Little Grandpa Jang and keenly observing all he sees. His parents were only sixteen themselves when he was born and have struggled to raise him, especially after discovering at the age of two that he was born with an ageing disease that will kill him in his teens.<br /><br />This is a tender and poignant story about what it is to be alive, to be a boy who will age and die before his parents, never knowing what it is to have friends his own age or to kiss a girl. However it is never over-sentimental; Areum has cooly accepted what is ahead of him and has too much going on in his inner life to spend much time thinking of dying. He is mainly concerned for his parents and their love for him. Originally published ten years ago, the translator <a href="https://goodreads.com/author/show/7588360.Chi_Young_Kim" title="Chi-Young Kim" rel="noopener">Chi-Young Kim</a> has made a fine interpretation of the author's prose to retain its simplicity and beauty. <br /><br /><i>With many thanks to Forge Books and Netgalley for a copy to read</i>

Audiobook.....read by the author: 5 hours and 34 minutes<br /><br />Oh boy....<br />I have mixed feeling....<br /><br />Here’s the synopsis:<br />“Despite being house-bound due to an accelerated-aging disorder, <br />Areum lives life to the fullest, vicariously through the stories of his parents, conversations with Little Grandpa Jang— his sixty-year-old neighbor and best friend, and through the books he reads to visit the places he would otherwise never see”. <br /> <br />“For several months, Areum has been working on a manuscript, piecing together his parents’ often embellished stories about his family and childhood. He hopes to present it on his birthday, as a final gift to his mom and dad; their own falling-in-love story”. <br /><br />My thoughts....feelings....and chatter:<br /><br />At the start of “My Brilliant Life”, I found it totally enjoyable, personal, unique, and sweet. <br />For several chapters I thought ...”My God, this must be THE MOST HEARTFELT book of the year”.... <br />Could a child get more loving, kind, optimistic, understanding, appreciative, accepting, happy, thankful, and be the most overall mind-blowing unreal kid of the year? <br /><br />And then.... I started to feel a little ‘over it’.....but listened to the end. <br />I thought: <br />“YES, this kid is unreal....his parents unreal&gt; sure loving and inspiring ....<br />But....<br />not every aspect of their lives can possibly be seen through rose colored glasses - the struggles, the challenges, the grief, the fears, [every aspect of their lives was sugar coated].<br /><br />The one dimensional expression of love .... was just too sweet for my taste. <br /><br />“My Brilliant Life”, was originally published with the title “My Palpitating Life” in South Korea in 2011 and then adapted into a film in 2014. <br />The movie trailer goods great — The actors are gorgeous— and the ‘emotions’ ( watching the trailer), felt more authentic - consistently in the film more than this book did to me.<br /><br />I hope I’m not a complete Debbie-downer turd. I mean, I’m clear that a diagnosis of the rare genetic disorder, progeria, comes unsweetened.....<br />So....compliments to author Kim Ae-ran for infusing the nectar.<br /><br />4 stars .... good, worth reading, with a few of my own ‘style-ish’ biases.<br /><br />

<b>I have not read the English translated version but please, read this beautiful and deeply sorrowful book.</b><br /><br />이 책을 읽다가 부끄럼도 모르고 기차에서 울었다. 보통 클리셰스러운 '질병 있는 아이' 설정엔 딱히 마음이 동하지 않는데, 작가가 너무 이야기를 잘 풀어서 홀딱 반해 버렸다. 이상스럽고 신비한 그녀의 언어에 난 그만 경도되어 버렸다.<br />이 작품은 여러모로 <a href="https://goodreads.com/book/show/2187.Middlesex" title="Middlesex by Jeffrey Eugenides" rel="noopener"> Middlesex</a>를 떠올리게 했다. 어린 화자의 재치, 작가가 각각 자신과 다른 성의 서술자를 설정한 것으로부터 오는 유머의 공통점과 차이점, 다세대의 이야기를 그리고 있다는 점...<a href="https://goodreads.com/book/show/2187.Middlesex" title="Middlesex by Jeffrey Eugenides" rel="noopener">Middlesex</a>도 내가 정말 좋아하는 책인데, 비슷한 이유로 이 책 또한 가장 좋아하는 책들 순위에 들 거 같다. <br />김애란 작가의 작품들이 기대된다. 23.5.9<br /><br /><u>Quotes</u><br />-어른이란 단어에서 어쩐지 지독한 냄새가 난다는 건 알았다. 그건 단순히 피로나 권력, 또는 타락의 냄새가 아니었다. 얼마 전까지만 해도 막연히 그럴 거라 예상했는데, 막상 그 입구에 서고 보니 꼭 그런 것만도 아니었다...그것은 다름아닌 외로움의 냄새였다...한번 빨려들어가면 다시는 헤어날 수 없을 것만 같은 무엇이었다.<br /><br />-글쓰기는 매순간이 결정과 선택의 연속이었다. 그런데 그걸 내가 잘하고 있는지 확신이 서지 않았다. 참으로 막막하고 무시무시한 순간이었다. <br /><br />-터무니없단 걸 알면서도, 또 번번이 저항하면서도, 우리는 이해라는 단어의 모서리에 가까스로 매달려 살 수밖예 없는 존재라는 생각이 들었다.<br /><br />-너와 나의 세대가 마지막이면 어떡해<br />또다른 빙하기가 찾아오면 어떡해<br />긴 세월에 변하지 않을 그런 사랑은 없겠지만<br />그 사랑을 기다려줄 그런 사람을 찾는 거야<br />우우우우우우우우우<br /><br />-그게 정답은 아니더라도, 누군가의 대답 속엔 누군가의 삶이 배어 있게 마련이고, 단지 그 이야기를 듣는 것만으로 당신들의 시간을 조금 나뉘갖는 기분이었다.<br /><br />-나는 내가 도망치려 했던 '시작'이 다시 내 앞에 놓여 있다는 사실에 설렘과 두려움을 느꼈다.<br /><br />-우주에서 사람이 터져 죽는 건, 우리 내계의 험이 외계의 험보다 커서 그런 거라더라....그러니까 우리 모두는 대부분 우리 바깥보다 힘이 센 존제들일지도...<br /><br />-나는 어둠에서 폴려나 새 어둠에 갇혔고, 그걸 다시 다른 어둠으로 가렸다. 그러곤 깊이를 알 수 없는 바닥으로 침잠해갔다.<br /><br />-'너한데 자식을 주겠다. 대신 두 가지 중 하나를 정해야한다. 첫째 아프더라도 오래 산다. 둘째 짧게나마 건강한 삶을<br />누린다.' 그러면 어떡하나 꽤 오랫동안 고민했었거든요.할아버지라면 어떡하시겠어요?.... <br />그걸 선택할 수 있다고 믿는 거, 그게 네 나이야. 질문 자체를 잘못하는 나이. 나는 아무것도 안 고를 거야.<br /><br />-어릴 때 나는 까꿍놀이라는 결 좋아했대. 아버지가 문 뒤에서 '까꿍!' 하고 나타나면 까르르 웃고, 감쪽같이 사라진 뒤 다시 '까꿍!' 하고 나타나면 더 크게 또 웃었다나 봐. 그런데 어느 책에서 보니까, 그건 아이가 눈에 보이지 않는 사물도 사라지지 않는다는 기억을 저장하는 거라더라...나는 처음부터 내가 나인 줄 알았는데, 내가 나이기까지 대체 얼마나 많은 손을 타야 했던 걸까. <br />...오늘은 네게 꼭 할 말이 있어 편지를 써. 어쩌면 앞으로 네게 메일을 못 보내게 될지도 몰라. 며칠 전 나도 중환자실에 들어오게 됐거든. 그렇지만 다시 나갈 때를 대비해 이곳에서 나, 항상, 네게 쏠 편지를 궁리해두고 있을게. 그리고 이곳을 벗어나면 제일 먼저 너에게 소식을 전할게. 그러니 당분간 내가 네 눈에 보이지 않는다 해도, '까꿍' 하고 짓궂게 사라진다 해도, 어릴 때 우리가 애써 배운 것들을 잊지 말아줄래?

انقدر غمگینم کرد که واقعاً حرفی برای گفتن ندارم...

We've seen this story before - a young child with a tragic condition armed with a buoyant outlook on life, sprinkled with a preternaturally wise sense of the world. It's Wonder's Auggie Pullman or more recently (and Korean) Almond's Yunjae.<br /><br />Here we have Areum. Diagnosed with progeria, Areum ages at an accelerated rate so at sixteen he's inhabiting the body of an 80 year old teetering on the brink of death. His parents, pregnant at 16, find themselves barely over 30 and faced with mounting hospital fees and the unavoidable certainty of their child's imminent death.<br /><br />Areum is determined to write his own story and reconstruct the life of his parents meeting and having him. His tale also includes a quirky 60 year old neighbour and best friend, an inspiring TV spot and a secret admirer and Areum's parents just trying to do the best they can. The whole plot is almost its own genre and the story hits the expected beats with a few twists delivering just the right dose of heartwarming and hopeful without veering too far into misery and mawkishness. All you can hope for really. <br />

#qotd: I read somewhere that you can age but you need not grow old and I believe it’s absolutely possible and true. Do you? <br /><br />My Brilliant Life by Kim Ae-ran is “the story of the youngest parents and oldest child in the world.” Sixteen-year-old Areum is born to teenage parents and is soon diagnosed with the rare disease of progeria. Although Areum knows he is rapidly fading he chooses to live in the moment. In the time he has left, he spends his days putting together the story of how his parents met, writing emails to a girl he met online, and cracking jokes with his 60-year-old neighbour and best friend Little Grandpa Jang. Areum keeps the reality at bay most times but it’s not long before some truths become too hard to bear.<br /><br />Areum seems to be wise beyond his years, perhaps a result of being aware of how short his time is. He has a wicked sense of humour but is also given to reflection. He is given some of the best lines in the book and I loved the depth and simplicity in them<br /><br />“I didn’t read for the love of knowledge but rather with the anxiety of someone who would be the sole survivor when the world ended.”<br /><br />“Why does a child always look like a child, no matter how old he is?<br />A sudden thought flashed through my head. Maybe that was why people had children.<br />To relive the life they don’t remember.<br />That made sense. Nobody remembered their early years. You couldn’t remember anything that happened to you from before you were three or four, so you wanted to experience it through your child.”<br /><br />The first half of the book was charming and delightful. You almost forget that Areum is special. The latter half of the book falters a little bit with the email exchanges between Areum and his online friend. This section felt more apt as a tv series screenplay where I could visualise the scene very vividly. Somehow, the momentum gets disrupted here. <br /><br />That apart, My Brilliant Life is a tender and poignant read. In some ways, it reminded me of Flowers for Algernon, a book that really moved me. Aeran’s sensitivity to the passage of time, his celebration of quotidian events, and his quiet acceptance of life as it is, are some of the reminders he leaves behind for us readers even after he is gone. <br /><br />Thanks to NetGalley and Macmillan-Tor/Forge for the ARC!<br /><br />PS: There’s a movie based on the book and has got good reviews. Curious to see how it has been adapted!<br />

❝ Books were everything to me—a grandmother who told me stories all night long, a teacher who imparted all the knowledge in the world, a friend who shared their secrets and problems. […]<br /><br />They made my heart race without having to physically run.<br /><br />——<br /><br />❝ Someone like you…”<br /><br />I was quiet, waiting.<br /><br />“… shouldn’t have to be sick.”<br /><br />I gazed at her with my sunken eyes that lacked eyelashes. I didn’t know what to say. “Mom, you know, someone like me…”<br /><br />“Yeah?”<br /><br />“Someone like me, who’s a really great kid…”<br /><br />“Yeah?”<br /><br />“… always comes from great parents.”<br /><br />——<br /><br />❝ That’s what happens when you’re young. Your heart races over nothing special and you’re devastated over nothing special.<br /><br />——<br /><br />❝ I’m the shortest mountain in the world, not even 140 centimeters tall, but I’ll examine what flowers are blooming inside me.<br /><br />——<br /><br />❝ I’m not religious but sometimes I find myself wanting to pray. Especially when I’m suffering, like you are. Then people ask, Who do you want to pray to? With the chilliest expression I say, To whoever.<br /><br />Whoever.<br /><br />——<br /><br />This novel was my first encounter with translated Korean literature, and I couldn’t be more dazzled. <br /><br />Ae-ran Kim’s writing is hypnotic, lyrical, and flows with the rush and force of a river. At times slow and steady and at times turbulent, you are nonetheless propelled forward into unknown waters. <br /><br />Everything shines in My Brilliant Life - the characters, setting, narrative. As a story that centers on a terminally ill teenager, Kim injects the perfect amount of heartwarming humor into the novel. <br /><br />Just as I was reading and enjoying myself, Kim did the unthinkable—she threw a wrench straight to my gut and yanked the rose-colored glasses that were sitting comfortably on the bridge of my nose. What a reality check. The truth is that kind, warm, intelligent, genuine people like Areum are so much more precious because of the abundance of cruel people in the world. This book reminded me of that. <br /><br />It’s a melodramatic, sentimental, and poignant debut novel; I loved every second of it. Ae-ran Kim is officially on my author watchlist/auto-buy list. I can’t wait for her next novel. I just hope it won’t take so long for the English translation this time. ?

<i> <blockquote>Nhưng tôi thì luôn tin rằng kỳ tích tồn tại trong những điều bình thường nhất. Với tôi, sống một cuộc đời bình dị rồi chết đi vào cái độ tuổi thông thường như bao nhiêu người khác, đó mới là kỳ tích. Trong mắt tôi, kỳ tích là bố và mẹ, hai người đang ở trước tôi đây. Kỳ tích cũng có ở bác trai và bác gái bên ngoại. Ở cả hai bác hàng xóm nữa. Kỳ tích cũng hiện diện chính trong mùa hè và mùa đông. Riêng tôi không phải là kỳ tích.</blockquote> </i> <br /><br /><u> <a href="https://goodreads.com/book/show/33275285.Nh_ng_n_m_th_ng_r_c_r_" title="Những năm tháng rực rỡ by Kim Ae-ran" rel="noopener">Những năm tháng rực rỡ</a> </u> là câu chuyện xoay quanh Ah Reum - một chàng trai 17 tuổi mắc phải căn bệnh lão hóa - khiến cho bên trong lẫn vẻ ngoài của Ah Reum như một ông lão 80 tuổi. <br /><br />Dưới lời kể của Ah Reum - những kỷ niệm và câu chuyện của bố mẹ cậu ấy - Dae Soo và Mi Ra; cũng là những khao khát, thắc mắc của Ah Reum về cuộc đời này. 40% của cuốn sách khiến mình cảm động. Câu chuyện của ông bà Dae Soo và Mira chứa đựng những điều khiến mình vừa vui vừa bồi hồi. Cách kể chuyện hài hước làm mình liên tưởng đến phim hài của Hàn :))) <br /><br />Tuy nhiên, 60% còn lại của cuốn sách không khiến mình hứng thú. Mình rất thương tiếc cho cuộc đời của Ah Reum - mình cũng yêu những người đã đến với cuộc đời của cậu ấy, kể cả những thắc mắc của Ah Reum mọi thứ. Nhưng có gì đó mình cảm thấy hầu như bình thường, mình cũng mất đi sự cảm động khi dần hoàn thành cuốn sách.<br /><br /><i> <b>“Hãy lớn lên và trở thành nỗi buồn của ai đó. Và khi buồn, con hãy khóc như một đứa trẻ.”</b> </i>