Books about death, dying, and grief.

It's been a long while since I posted here but I felt like maybe this could be a useful post for people searching the internet for books about these subjects. Earlier this year, someone I loved died after a six month battle against terminal cancer. Grief wasn't foreign to me, nor was cancer, or even death at a younger than expected age. But as things go, this affected me more than anything in my life had before.

Not long after he was first diagnosed, I stopped being able to read anything fictional. Even my favourite authors, my favourite books. My brain was too focused on one thing to be able to get involved in a fictional tale, no matter how amazing it was or how beautiful the writing. So I started reading about death or, more specifically, how to help the dying.

In the weeks, months, or even years after a grief, you may have a compulsive desire to read about grief... Grieving people tend to read to put their minds squarely on their pain. they start ingesting books, articles, stuff from the internet, spiritual matter - anything to feed the empty space in their understanding. Anything with the word 'grief' grabs their attention. it's as though greiving persons are trying to make up for lost time, like cramming for a test they haven't studied for. [About Grief, by Ron Marasco & Brian Shuff]

My stepmum died from breast cancer six years ago, but it was never terminal. It was never you are going to die from this and there's nothing we can do. I've never had to deal with that in someone I love before and certainly not in such a short timeframe that he was given. I wanted to be there for him properly. I wanted to help as much as I could and especially wanted to be someone he could talk to about what was happening if he wanted to. But what do you say and what do you do when someone you love is dying? What do they want and need?

So I started reading.

Initially it started with the internet and reading articles about the type of cancer he had and blog posts from people with terminal cancer and what they want other people to do for them, but then I needed full books. I downloaded most of them on my Kindle, as that was easier to read on public transport and I didn't particularly want to deal with any strange looks from other people if they noticed I was reading books about dying. But I also ordered a bunch of books from Amazon that weren't available on the Kindle.

One of the things I wanted to know was how comfortable he would be talking to me about dying - was that something he would even want to do? Do people that are dying want to talk about what they're going through or do they want to avoid it? When is the right time to discuss these things and when is the right time to talk about other subjects? I wanted him to know he could talk about whatever he wanted with me, without feeling like I was asking questions he didn't want to answer. Most importantly, I wanted to be mentally prepared for those conversations, because the idea of him dying actually scared me more than anything and the last thing I wanted was to make him feel like it was too much for me to be able to discuss these things.

A dying person's world shrinks, narrowing to a few important relationships and the progress of his illness. When dying people aren't allowed to talk about what is happening to them, they become lonely, even amid loving, concerned people. [Final Gifts, by Maggie Callanan & Patricia Kelley]

This 'being unsure' didn't last long because I realised he was happy to talk about anything with me and I asked him countless questions about everything. I think he liked that I wasn't scared or uncomfortable talking about these subjects. I feel like I was able to give him someone to talk to who wasn't as close as his parents or siblings (so there was a level of him wanting to 'protect' them), but was also close enough to understand things like how heartbroken he was when he said, "I don't think I'm going to be able to come back to work," the first time I visited him in hospital.

Some of the books I found most helpful in trying to figure out how to help someone who is dying and understand what they need:

• "Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying" by Maggie Callanan and Patricia Kelley
• "One You Love is Dying: 12 Thoughts to Guide You on the Journey" by James E Miller
• "Nearing the End of Life: A Guide for Relatives and Friends of the Dying" by Sue Brayne
• "Facing Death and Finding Hope" by Christine Longaker
• "After the Darkest Hour" by Kathleen Brehony
• "Dying Well" by Ira Byock

Often a dying person wants to make sense of their time on earth. they want to feel their life has mattered and their influence will not be forgotten. You can play a critical role by treating their memories as important and their reflections on life as valuable. [One You Love is Dying, by James E Miller]

One of the things I am most appreciative of is that I had the chance to tell him what he meant to me, how much his work inspired me, how much his training helped me, and how incredible I thought he was in his work when his work was such an important part of his life. I loved all of our conversations about life and death, learning so much about his life before I knew him, and all of the humour and talk about books and travel in between. Plus, getting to hear stories from his childhood and things like that was something wonderful to share. Being a close part of the last six months of his life will be something I will forever be grateful for. 

It is incredible how much happiness we sometimes had together after all hope was gone. How long, how tranquilly, how nourishingly, we talked together that last night! And yet, not quite together... You can't really share someone else's weakness or fear or pain. [A Grief Observed, by C. S. Lewis]

After he died, it switched from how to help him to how to help me, because no matter how much I tried to 'prepare' myself for it, I wasn't remotely ready when it happened. So I started reading about grief. It felt strange to me to feel so lost and unsure about how to deal with these emotions when I've felt true grief before: when my stepmum died and when two young lifelong family friends had died in tragic accidents. But this was somehow more difficult for a variety of reasons, one of which was dealing with work (which is how we met as colleagues originally) when normally work is an escape and "something else" to focus on for a while when you're dealing with a loss.

No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning... At other times it feels like being mildly drunk, or concussed. There is a sort of invisible blanket between the world and me. I find it hard to take in what anyone says. Or perhaps, hard to want to take it in. It is so uninteresting... I dread the moments when the house is empty. If only they would talk to one another and not to me. [A Grief Observed, C. S. Lewis]

Some of the books I found most helpful in the first few months of grief were:

• "About Grief" by Ron Marasco and Brian Shuff
• "How to Go on Living When Someone You Love Dies" by Therese A Rando
• "A Grief Observed" by C. S. Lewis
• "Healing Grief, Finding Peace: 101 Ways to Cope with the Death of Your Loved One" by Louis E LaGrand
• "From Grief to Peace: Mourning Your Loss" by Alexander Risten
• "Experiencing Grief" by H Norman Wright
• "Transcending Loss: Understanding the Lifelong Impact of Grief and How to Make It Meaningful" by Ashley Davis Bush (I recommend only reading this one after the acute grief stage has passed)

Another book I read was "Splitting the Difference: A Heart-Shaped Memoir" by Tre Miller-Rodriguez after I found her blog online and had a chat with the author. I loved this book, I loved Tre's writing, and I loved reading about her frank, brutal, and beautiful experiences of grief after her husband's sudden death at the age of 40 when she was just 34. The author had previous experience with loss when her brother died at the age of 18 as well. I definitely recommend this is anyone that has lost their significant other/someone they're in love with, but as long as you're not offended by a bit of swearing and adult content.

I've since been able to read a few fiction books, although mostly relating to death and grief as well. I re-read some of my favourite books: "The Fault in Our Stars" by John Green and "Paint it Black" by Janet Fitch and "The Time Traveler's Wife" by Audrey Niffenegger and "If I Stay" by Gayle Foreman. One new fictional book I read that really stood out to me as amazing is a young adult book, "Me Since You" by Laura Wiess. I've read a few of Laura's books before and always found her writing and her stories to be incredible. One thing I particularly loved in "Me Since You" was the protagonist's description of grief:

It's the perfect storm... and it hits like a wrecking ball, coming out of nowhere and slamming into your brain. It destroys everything. Your emotions are in shambles: one minute you're crying, the next you're laughing, the next you can barely lift your head for the agony. Life narrows: you don't care about stuff that used to matter and you overreact to the stuff that matters now. You need to be held, but you want to be left alone. Your short-term memory is shot. Every step is like slogging through a mud pit. Exhaustion hits at random and all you can do is sleep. You second-guess yourself constantly. You can't meet anyone's gaze for fear you'll see blame there, or suspicion, or judgment. You feel small, weak, guilty. You think weird thoughts, do strange things. Every nerve in your body is raw, but your brain is a foggy, unreliable mess. You can't see from crying and food has no taste, but all of a sudden you can smell a dirty sock three rooms away. Your moods are up, down, down, up, like a crazed, speeding, out-of-control rollercoaster you can't get off of, no matter how long or how awful the ride. And that's just the first three months.

Grief is such an isolating, lonely thing and I really found books (as well as reading blogs and becoming friends with the bloggers) have helped me immensely in my journey through it this last year or so. Yet another reason I am grateful to books and so glad I love them as much as I do.

The act of living is different all through. Her absence is like the sky, spread over everything.

Wonder by R.J. Palacio

Release date: 15 February 2012
Rating: 10/10

If I found a magic lamp and I could have one wish, I would wish that I had a normal face that no one ever noticed at all. I would wish that I could walk down the street without people seeing me and doing that look-away thing. Here’s what I think: the only reason I’m not ordinary is that no one else sees me that way.

So when I was in my mum’s stomach, no one had any idea I would come out looking the way I look. Mom had had Via four years before and that had been such a “walk in the park” (Mom’s expression) that there was no reason to run any special tests. About two months before I was born, the doctors realized there was something wrong with my face, but they didn’t really think it was going to that bad. They told Mom and Dad that I had a cleft palate and some other stuff going on. They called it “small anomalies”.

Looks like I don’t have to write a book anymore, because this is the one I wanted to write.

Mom is beautiful, by the way. And Dad is handsome. Via is pretty. In case you were wondering.
 

While she was talking, I noticed Julian staring at me out of the corner of his eye. This is something I see people do a lot with me. They think I don’t know they’re staring, but I can tell from the way their heads are tilted.
 

She only hesitated for a millionth of a second, but I could tell the moment she saw me. Like I said: I’m used to it by now.
 

Mom always had this habit of asking me how something felt on a scale of one to ten. It started after I had my jaw surgery, when I couldn’t talk because my mouth was wired shut. They had taken a piece of bone from my hip bone to insert into my chin to make it look more normal, so I was hurting in a lot of places.
 

I hate the way I eat. I know how weird it looks. I had a surgery to fix my cleft palate when I was a baby and then a second cleft surgery when I was four, but I still have a hole in the roof of my mouth.
 

Rat boy. Freak. Monster. Freddy Krueger. E.T. Gross-out. Lizard face. Mutant. I know the names they call me. I’ve been in enough playgrounds to know kids can be mean. I know, I know, I know.
 

During every moment of reading Wonder, I felt like I’d been punched in the stomach, wanted to cry, felt significant amounts of anger at strangers, and happier than I have ever been purely for a book’s existence. The part where August gets hearing aids is my favourite part of the whole story.

 How can I describe what I heard when the doctor turned on my hearing aids? Or what I didn’t hear? It’s too hard to think of words. The ocean just wasn’t living in my head anymore. It was gone. I could hear sounds like shiny lights in my brain. It was like when you’re in a room where one of the lightbulbs on the ceiling isn’t working, but you don’t realise how dark it is until someone changes the lightbulb and you’re like, whoa, it’s so bright in here! I don’t know if there’s a word that means the same as “bright” in terms of hearing, but I wish I knew one, because my ears were hearing brightly now.

Quoting is the only way I can convey why this book means what it now does to me. This is the book I wanted when I was 12-15 years old. To feel less alone. To feel like I wasn’t the only one who was going through these things.

Everyone, of all ages, should read this book, because everyone's life would be improved for having known August Pullman.

Thank you, R.J., for writing Wonder for all children that have ever been born with birth defects and/or craniofacial syndromes. And thank you to Natalie, for making sure I knew about August - I love you for it. He really is a wonder.

“Mom? Am I always going to have to worry about jerks like that?” I asked. “Like when I grow up, is it always going to be like this?”

If I Stay and Where She Went by Gayle Forman

Release Date: May 2009 (If I Stay); April 2011 (Where She Went)
Rating: 9/10

Sometimes you make choices in life and sometimes choices make you.

These two books are definitely among my favourite young adult books written in the last few years. Or ever. If I'd read these books when I was a teenager, it would have made my I-want-a-boyfriend-that-understands-my-insane-love-for-music so, so much worse. Adam would've had my heart.

I realize now that dying is easy. Living is hard.

Both books are about love, family, loss, death, survival, grief, music, and the passions in life that keep you going. The frank discussion of the process of grief in Where She Went was incredible, like nothing I had ever read before, even in an adult fiction novel. When Adam says "what is competition it is" about grief and when Mia wonders who was there for Adam when Mia lost all that she lost, they were some beautifully poignant moments. I decided to read If I Stay when it was released because the story sounded like it would be an emotional and inspiring read, but luckily I was also given a book about music. Little references throughout it, and to a lesser extent in Where She Went, to all types of music, but particularly the little punk jokes Mia's parents make and Mia's inability to understand nor care about "rock talk" made me happy.

 

Barrel of the gun, rounds one two three

She says I have to pick: choose you, or choose me

Metal to the temple, the explosion is deafening

Lick the blood that covers me

She’s the last one standing

Unbearable Lightness by Portia de Rossi

Release date: 1 November 2010
Rating: 10/10

I had to post a quick note about how incredible Portia de Rossi is. I have always loved her (especially her brilliance in  Arrested Development), but her book made her strength, inspiration, and beauty all the more apparent to me. It is not really a biography as such, to me, but the story of what it is like to live with an eating disorder, the reasons they can occur and the way a person in that situation thinks, as well as the way dieting can turn into 'disordered eating' without the person knowing.

I have never struggled with weight loss, been conscious of what I eat, or even considered any kind of diet. I was lucky enough to grow up in a house with a mother who instilled this within me, as eating was always a fun, healthy thing to do in our house. Despite this, Unbearable Lightness was inspiring to read and I deeply admire Portia, as being someone that doesn't like attention on her personally and is very self-conscious, for writing such a book and being so open about the struggles she had. I may not have had any kind of eating disorder, but I have been through other things that help me understand the mentality that goes into this kind of treatment of yourself, and the fact that Portia, as a "famous" person, has written such an honest account of her suffering when so many people will read (and judge) it is something truly amazing to me.

Portia made appearances on Ellen and Oprah regarding the book a few months ago. (I've been wanting this book for a while but couldn't get a reader's copy, and was just recently given a copy for my birthday.) Both are wonderful interviews. The Oprah one only bothers me at the end when Oprah says, "You're not crazy anymore". I don't like that term, crazy. Anorexia and bulimia are mental illnesses and you wouldn't say to a recovered depression sufferer that they're not "crazy" anymore, so I don't know why it is okay to do it in this case.

Here's some links to the Ellen interview, just because they're so cute.







"Breathtakingly honest, brutal, and beautiful." Jonathan Safran Foer

Note: If you are reading this post and currently suffering from an eating disorder or in the early stages of recovery, please don't read this book. It goes into great deal into things that could be a trigger.

Five Flavors of Dumb by Antony John

Release date: 1 November 2010 (United States)

Rating: 10/10

Eighteen-year-old Piper has got herself into a mess. Because of her big mouth, she has one month to get a paying gig for her high school's hottest new rock band, Dumb. In Piper's mind, the band couldn't have a more perfect name. Just look at the members: one egomaniacal pretty boy, one silent rocker, one talent-less piece of eye-candy, one angry girl, and one nerd-boy drummer - five discordant personalities who, when put together, seem ready to self-destruct at any moment. Getting them an actual gig seems impossible. Add to that the fact that Piper doesn't know if their music is good or not, because, well, she's deaf.

But Piper is determined to get the band a gig to show her classmates that being deaf doesn't mean she's invisible. And as she gets to know the five flavors of Dumb, some hidden talents, secret crushes, and crazy rock music emerge. She doesn't need to hear the music to sell it, but Piper wants the chance to feel the music too.

This is easily one of the best young adult books I have read in my entire life. I’ve been struggling to put together a review that conveyed this and I still don’t feel like I can do it well enough. But I have to write something, because this book is wonderful. For someone that music is essentially the most important thing to and as someone that not only has a hearing loss, but is studying Audiology, this story naturally connected with me on many levels. But besides that, I think it’s a fantastic read for anyone as it gives an insight into the world of the hearing impaired and also how music can change a life.

I just knew that when he met a girl for the first time, he didn’t have to worry about how his voice sounded or whether she was freaked out by the way he stared at her lips the whole time.

My favourite character was protagonist Piper’s younger brother, Finn, for his experiences as the younger brother (and older brother to baby Grace) of a hearing impaired person. When he has a conversation with Piper about how he learned American Sign Language for her, to talk to his sister, it honestly brought tears to my eyes. The isolation Piper feels breaks my heart and her growth throughout the book is inspirational. All of the characters of Dumb (the band) are fantastic and different in their own way and the development of most of them is incredible to see.

I felt exhausted, and it wasn’t just the strain of lip-reading in a room that echoed like a cathedral.

A lot of people that have experience with being hearing impaired, knowing someone that is hearing impaired and/or has hearing aids, or works in the Deaf or hearing impaired community (as an audiologist, ENT, teacher for the Deaf, etc) probably read this and judge it compared to their own knowledge; I don’t think this is the important part. The crucial part of the story that Antony John got “right”, to me, is the small things. The frustration when someone turns away or walks off speaking when they know you have a hearing loss and then you can’t hear them anymore; the exhaustion that comes along with that extra effort it takes just to hear and to work out what is going on in a conversation; those little things that people that have had perfect hearing their entire lives generally take for granted because they have no reason not to. Whether Antony John got the specifics of what type of hearing aid a girl with a moderate-to-severe sensorineural hearing loss could have is irrelevant. He did a damn good job of conveying the experiences of a young hearing impaired person at high school and I know because I was one.

The painful truth was that each and every person who had sat on that seat before me had experienced music in a purer, more visceral way than I could even begin to imagine.

Although not significantly relevant to the storyline (so not a spoiler), I loved the part where Piper visits the house that Kurt Cobain died in and the park next door. Until that day, she didn’t even know Kurt had committed suicide, only that he was dead, and didn’t know why Nirvana were so famous. Piper sees all the messages in the park from Nirvana fans to Kurt and is saddened that she doesn’t understand how music could affect someone in such a significant way. This part particularly resonated with me. I love the fact that hearing aids these days have 'music' programs that are better suited to listening to music. There’s still a long way to go with them, but the idea of bringing music into a hearing impaired person’s life amazes me. I spent the first fifteen years of my life with a more significant hearing loss than I have now, but I still loved music (largely thanks to my mother’s obsession with it and later my brother’s). I just needed it loud, otherwise it sounded muffled, and even then I still got the lyrics all wrong and couldn't hear the instruments distinctly. The idea of a person’s hearing being too bad that music sounded like nothing worth listening is heartbreaking to me. I know there are plenty of people that music doesn’t matter to anyway, but at least they have the option to fall in love with it or not. I distinctly remember the first time I heard my favourite band with bilateral much-closer-to-normal hearing, even though it was eight years ago. It was indescribable.

She turned away. I couldn’t lip read anymore, and her words became indistinct – a really obnoxious thing to do to someone who’s hard of hearing.

I couldn’t read this book or write a review for it as anyone but someone that has a hearing loss. I know what it’s like to have the world sound muffled; the first fifteen years of my life I didn’t even know any different. But I still maintain that this book is incredible without my personal experiences and everyone should read it whom has an interest in music, life with a disability, or just a great young adult fiction story.

Please don’t put your life in the hands of a rock ‘n’ roll band.

Favourite Author Focus: Margaret Atwood

I would like to believe this is a story I’m telling. I need to believe it. I must believe it. Those who can believe that such stories are only stories have a better chance. If it’s a story I’m telling, then I have control over the ending. Then there will be an ending, to the story, and real life will come after it. I can pick up where I left off.

I first read The Handmaid’s Tale in one of the first English Literature units I did at university about six years ago. I would have loved this book anyway, because of its brilliance and creativity and intelligence. But getting the chance to analyse it in class and write essays on it was amazing; some books are ruined for me by analysing them but this one definitely made it even better. I’ve always been fascinated by books that are some kind of version of the future, which are not completely set outside the world we know. The Handmaid’s Tale is a scary look at the near future and my love for dystopian novels like this, Brave New World, and 1984 is ridiculously huge.

There is more than one kind of freedom, said Aunt Lydia. Freedom to and freedom from. In the days of anarchy, it was freedom to. Now you are being given freedom from. Don't underrate it.

Similar to The Handmaid’s Tale in terms of being about a version of the future, but without the feministic aspects, is Oryx and Crake and The Year of the Flood. I only read Oryx and Crake a couple of years ago, so didn’t have the six year wait between it and its follow-up The Year of the Flood that a lot of readers had. Since The Road by Cormac McCarthy became so popular, people said a lot about the similarities between The Road and The Year of the Flood, I think largely based on the fact that they were both simply bleak versions of the future, which I never really understood. The Year of the Flood is not so much a follow-on from Oryx and Crake, but not a prequel either – but it is set in the same future as Oryx and Crake, with some of the same characters. The Year of the Flood seemed to have received some negative reviews when it was released from people who loved Oryx and Crake, but I possibly liked it even more. I felt it was more optimistic than its predecessor, if that's possible in books such as these. On a side note, I also absolutely loved the cover of the hardcover version of The Year of the Flood; I even bought it in hardcover, which I almost never do because I’m really not a hardcover fan.

Out of habit he looks at his watch — stainless-steel case, burnished aluminium band, still shiny although it no longer works. He wears it now as his only talisman. A blank face is what it shows him: zero hour. It causes a jolt of terror to run through him, this absence of official time. Nobody nowhere knows what time it is.

I have read a few other books by Margaret Atwood (such as Alias Grace, The Blind Assassin, and The Robber Bride) and loved them, but they haven’t resonated with me as much as the three novels mentioned so far. I think readers tend to either love or hate books that are written as varied versions of the future. If you love them, you’ll probably love Margaret Atwood’s dystopian novels. If you don’t, I wouldn’t read them but perhaps try her other novels. Her writing in general is incredibly original and intelligent to me, with brilliant satirical humour and creative ideas dissimilar to anyone else I’ve read.

Beware of words. Be careful what you write. Leave no trails.

North of Beautiful by Justina Chen Headley

Release date: 9 February 2009 (United States)

Rating: 10/10

As he continued to stare, I wanted to point to my cheek and remind him, 'But you were the one who wanted this remember? You're the one who asked - and I repeat - why not fix your face?'

It's hard not to notice Terra Cooper. She's tall, blond, and has an enviable body. But with one turn of her cheek, all people notice is her unmistakably "flawed" face. Terra secretly plans to leave her small, stifling town in the Northwest and escape to an East Coast college, but gets pushed off-course by her controlling father. When an unexpected collision puts Terra directly in Jacob's path, the handsome but quirky Goth boy immediately challenges her assumptions about herself and her life, and she is forced in yet another direction. With her carefully laid plans disrupted, will Terra be able to find her true path?

I only found out about this incredible book because my friend Jess at The Tales Compendium bought it while travelling in the United States and thought I would love it. Naturally, she was right. I usually try to avoid reviewing books Jess has already reviewed, because her writing blows mine out of the water, but I can’t not write a little something about this one.

And then I had to trust in the universal language of a smile. Jacob had told me to smile at all the starers, that ultimate act of disarming. As he said, it was the reason why so many doctors gave their time to cleft palate and cleft lip surgeries. Smiles biologically bonded mothers to their children, kicked in their mothering instinct. Fix the smile, save the child.

I think it’s an incredible shame this book is not available in Australia, as it could be such an important read for teenagers [outside the United States] who can relate to Terra’s self-consciousness. Although Terra has something specific “wrong” with her face, her general self-esteem issues and development throughout the book could relate to anyone going through high school and wanting to be accepted by their family and peers. I would have loved to have had the chance to read a book like this while going through school myself, for it may have made me feel a little less alone in my own issues with my face and the self-consciousness that is brought upon by “deformities” and the teasing and stares that go along with it.

It made no sense that I was actually considering his advice when I’d dismissed the very same thing from so many well-meaning people before. The difference, I suppose, was that he knew what it was like to be so obviously marked.

Although the book is overflowing with amazing characters and developments, the relationship between Terra and Jacob is at the heart of the story. They can identify with each other in a way that no one else in their lives has been able to understand before and that connection is crucial to the development of Terra’s self-esteem and acceptance of herself. Along the way we learn that Jacob has his own methods of dealing with the stares that come along with not only having been born with a cleft lip, but also with being adopted. His coping mechanism of giving people a ‘reason to stare’ is a powerful one to me and something a lot of people in his or Terra’s situation may relate to.

“So why Goth and not...?”

“Prep? Soccer guy?”

I nodded.

“Because...Because people stared at me whenever I went out with my parents. I mean, you might expect little Chinese girls to be adopted, but not boys. So I figured if people were going to stare at me anyway, then I would choose the terms of their staring. I can dictate what they see.”

The strength of this book is that it is not clichéd in saying that true beauty is what’s “inside” that counts; it is the acceptance of yourself and having confidence in that. The emotional development of the characters is incredibly powerful within the book and the entire story itself is simply beautiful. It has been a long time since I’ve not wanted a book to end this much.