Awake

by Elizabeth Graver

"Once a painter, a traveler, a lover of light, Anna Simon has been living in the dark ever since she gave birth to Max, a child with a rare genetic disease for whom even an hour in sunlight could prove fatal. For years, Anna has homeschooled Max and structured her life around his schedule, despite the fact that her husband, Ian, favors mainstreaming and wants Max to attend school with his older brother. When Anna learns of a camp in upstate New York for children with light-sensitivity disorders, she sees room for a compromise between her own and Ian's approaches - a sanctuary for Max, a place where he can interact with other children and be both safe and free." And so the summer that Max is nine, the family heads off to Camp Luna. At first, the place seems like the answer to their problems. But as Anna is drawn into life there and gets to know Hal, the camp's charismatic founder, freedom and safety soon prove to be complicated things. What begins as a novel about a family with a sick child quickly becomes an intricate, moving examination of one woman's identity, as - given sudden breathing room - Anna looks around at her life and finds that she has lost track of essential pieces of herself. What, exactly, Anna comes to wonder, are safety and freedom? And at what cost - to one's self and to the people in one's life - should they be protected and pursued?

Genres: Fiction, Disability, Literary Fiction, Contemporary

308 pages, Paperback

First published April 7, 2004

About the author

Elizabeth Graver’s novel, Kantika, is a multigenerational saga that moves from Istanbul to Barcelona, Havana and New York, exploring displacement, endurance, and family as home. Inspired by the life story of the author’s maternal grandmother Rebecca, Kantika was selected by the New York Times as a 2023 Best Historical Novel and Notable Book of the Year, and by NPR as a Best Book of 2023 and translated into Turkish and German. Kantika was awarded a National Jewish Book Award, the Edward Lewis Wallant Prize, the Julia Ward Howe Prize and the Massachusetts Book Award.
Elizabeth Graver's previous novel, The End of the Point, set in a summer community on Buzzard’s Bay from 1942 to 1999, was on the long list for the 2013 National Book Award and a New York Times Notable Book. She is the author of three other novels: Awake, The Honey Thief, and Unravelling. Her short story collection, Have You Seen Me?, won the 1991 Drue Heinz Literature Prize. Her work has been anthologized in Best American Short Stories, Prize Stories: The O. Henry Awards, The Pushcart Prize Anthology, and Best American Essays. Her story “The Mourning Door” was award the Cohen Prize from Ploughshares Magazine. The mother of two daughters, she teaches English and Creative Writing at Boston College.

Reviews

[Sarah · Rating 3 out of 5]

Anna is the mother of Max, who has a rare genetic disease called xeroderma pigmentosum (XP) that results in light causing extreme pain and cancer. So he lives in the dark, and she does too, while her husband and other son thrive in the daylight. Attending an XP summer camp seems to a way to help Max experience a slice of normal life. But given the chance to relax, Anna is drawn to the camp founder.

When I first started reading this, I thought I'd get a chance to learn about XP. I only learned the bare bones because Max's story is not the focus. This story is all about Anna, who goes through a midlife crisis, depression, and commits infidelity, with all its repercussions.

The writing itself was beautiful. There were lots of beautiful phrases and descriptions. Very dreamy and image evoking. Which makes sense when you consider the story is told from the viewpoint of an artist. As I was reading, I kept thinking that the book was gray. If a book could be represented by a colour, this one would be grey, in all its varying shades. There is very little joy or happiness, mostly sadness and depression, which I guess I see as gray.

As a character, Anna was very self-absorbed and selfish, which I associated with a midlife crisis. She can't see past the mundane details of her life, and how unhappy she is. The only thing she seems to be able to think of is her desire to escape. This leads to bad decisions, and hurt feelings all around.

There were some graphic sex scenes, but not in the steamy, passionate sense. Fitting with the overall feel of the book, the scenes were factual and stark, which made them seem more vulgar.

Overall, this is not a light read. It is dark and depressing, and leaves a slightly bad feeling in your mouth. But if you look at the writing itself, it's beautiful. Quite a contrast filled book.

[Erin · Rating 2 out of 5]

The subject was interesting, but did anyone else find the main character to be so whiny and self centered that you were bored to tears by it all?.... had high hopes for this book, ended up skimming it and was disappointed.

[Jody · Rating 5 out of 5]

This is a beautifully written book narrated by Anna, whose son Max is the victim of a genetic disorder that makes sunlight fatal to him. Max's illess, and her role as his primary caregiver, have become the defining characteristics of Anna's life. When she finds a summer camp that allows Max to have some semblance of a normal experience with other children affected by the disorder, the lessoning (or her perceived lessoning) of Max's dependence on her leads Anna to unravel, ultimately destryoing her family. Her actions also destroy the camp as a happy place for her son. Other reviewers have disliked the book because of Anna's poor choices, but I think that Elizabeth Graver has crafted a haunting story that explores the gifts and burdens of family, as well as the balance between the responsibilty to self and to those we love. The ending was masterfully rendered, leaving us unsure of the fate of Anna's family, but with a feeling of resolution that I found lacking in The Honey Thief.

[Rebecca · Rating 3 out of 5]

I guess it's a testiment to a book if it's able to evoke a strong emotion in you. Any emotion. I was filled with such disgust after reading this book. I have no tolerance for cheating as it is, but this book centers around an unhappy family- one of the sons was born with a disease that makes him allergic to sunlight. In an attempt to give him a normal childhood, the family attends a summer camp for children with the same disease. While there, the mother falls in love with and has an affair with another man. I won't give away the ending, but by the time I was done, I was completely disgusted with her as a character. But in a good way I suppose, the rest of the book was very good.

[Lisa · Rating 5 out of 5]

Elizabeth Graver is one of my favorite novelists. She is ultra-talented at evoking place, creating an atmosphere, and exploring the inner workings of the minds of a variety of different kinds of characters.

This is one my favorite books by Graver.

[Christine Irvin · Rating 5 out of 5]

Anna’s son, Max, has XP (Xeroderma Pigmentosum) a rare skin disease that prevents him from being in the sun (at all) or under any type of light that contains UV rays. Because of this, Anna’s family lives a rather strange life: She and Max spend most of their daylight hours indoors, sleeping, while her husband and her other son, Adam, go about their normal life at normal hours. To be sure, everyone has made sacrifices to keep Max as healthy as possible, but Anna feels like she has lost the most.

In an effort to make life a bit more “normal” for Max, Anna finds a special camp, Camp Luna, that is set up for kids with XP. They do all the normal things that kids do at camp - swim, take hikes, play volleyball, do crafts, etc. - but they do them at night, when the sun has gone down. The whole family spends three weeks at the camp. Max is finally able to be with kids who are just like him, and he blossoms at this camp.

Anna finds something there, also, a man, Hal, the one who owns the lodge and runs the camp and has a young daughter with XP. Hal is good looking, charismatic, wealthy, and a widower. The attraction is mutual, but the relationship is platonic the first summer at the camp. When Anna’s family goes back to camp the next year (minus Adam, who goes to a separate soccer camp), the relationship is anything but platonic. Anna knows what she is doing is wrong, but she can’t, or maybe just won’t, stop herself. Her new relationship with Hal changes the entire family dynamic. When she realizes she has made a mistake, can she find a way to make her family work again?

This is a story about love and marriage and family and relationships. It is also an informative narrative about XP and what it must be like to have to deal with the malady on a daily basis.

[Katie Kitchpanich · Rating 3 out of 5]

Decent book, but I read it WAY too young (in 6th grade at 11 years old). It taught me things about sex and heroin that I never could have imagined prior to this book. It also taught me what Xeroderma Pigmentosum is though, so a win is a win I suppose.

On re-reading as an adult, I still found it to be a very good book, and extremely well written, though it's hard not to hate the main character, Anna. Graver does a great job making us feel as empathetic towards Anna as is possible -- I understand that having a medically complex child, especially one with a disease that is likely to be terminal, is VERY difficult, both for the child and for the child's parents and siblings. But Anna had an affair and tore her family apart in the interest of simply being completely selfish and self-serving. She had a wonderful husband who was a great father to their children and provider of their family, and she ruined that for all of them because she was feeling like she'd lost herself. Which is fair, for her to FEEL that way, but acting on it in that manner was disgusting and not okay on any level.

Worse yet, the man she has the affair with is the owner and proprietor of the camp that they attend for their son Max in the summers, the ONLY place where Max can live like a normal child with other people like him, and Anna ruins that for him. The whole book she chastises her husband Ian and older son Adam for them apparently not understanding how important the camp is, both for Max and for their whole family, and then she sabotages the one place Max could feel normal. Again, I feel for her up to that point, I understand how unbelievably difficult it was for her and Ian to give up their dreams and passions for their life to revolve around their sons, who live such completely opposite lives due to Max's illness, but imagine how it is for Max and Adam! Ian didn't complain or abandon his family, nor did most of the other parents of the XP kids at the camp, but Anna did, and I really feel like that is unforgivable under these circumstances.

Hal is also to blame for making the camp no longer a safe space for Max, and potentially for the other parents and children who became aware of he and Anna's affair. I think Hal cared about Anna more than she cared about him, in that he was falling in love with her and asked her to move to be with him instead of Ian, but he is extremely selfish and self-serving too. Asking her to split up her already (by that point) broken family just so they could be together, which would also impact the friendship his daughter Alida and Max had formed was an insane suggestion, and not one made out of love. However, Anna is downright cruel to Hal on more than one occasion, and is much more wishy-washy and hot/cold regarding him and their affair than he is.

This book is definitely worth the read, in my opinion, for how well written it is, and the very unique setting and storyline revolving around kids (and some adults) with XP, but be prepared to hate Anna and possibly Hal too by the end of it. I am tempted to write a piece of fanfiction continuing the story and giving it a "better" ending.

[Ashley · Rating 4 out of 5]

I always enjoy Graver's writing. She writes with originality and heart, getting deep into her characters. This novel tells the story of a mother of a child for whom sunlight is deadly; all caregiving occurs at night. Then she starts an affair at a summer camp, convinced, for the time being, that her true self is being freed. But those things are extraneous--this is really a tale of the Role of Mother, which was extremely convincing, layered, and convoluted. Pretty much like motherhood. At times the main character's internal monologues went too long, and there's an episode in France that was a bit cliché to me, but overall: very much recommended.

[Jan · Rating 3 out of 5]

The story shows how a life-threatening illness affects everyone in a family and every facet of their lives.
....a rhythm is developed for their days and nights, which in this case are reversed. Their child has a very rare disease and cannot be in daylight at all, so he lives at night and sleeps during the day. The mom, Anna, homeschools Max and creates a lifestyle for both of them.

A chance opportunity for some freedom, in the form of a special summer camp, leads to consequences for all - many not good ones.

[Cathy · Rating 3 out of 5]

Very interesting insight into someone in the throws of depression, yet also a terrific story about a family dealing with a child with an "orphan" disease. Their entire world is turned upside down. The family dynamic is also shattered. That Graver can write about all this and yet still entertain and captivate is quite remarkable.

[Jan · Rating 4 out of 5]

This book gives good insight into how the care of a special needs child impacts the entire family

[Jessica · Rating 3 out of 5]

Beautifully written but messy at the same time. "Like a scar healing or water closing up around a skipping stone, the house will seal itself again."

[Vicki · Rating 2 out of 5]

I can't decide if this is just a story about an emotionally dishonest person, or this is an emotionally dishonest story about an emotionally dishonest person. Awake by Elizabeth Graver starts out as the book equivalent of a well-intentioned and relatively well-made disease-of-the-week TV movie. It's told from the point of view of Anna, married mother of two boys, the youngest of whom is afflicted with a rare illness that is essentially a severe, potentially fatal allergy to natural light. Overly telegraphed plot developments early on suggest that someone has a penchant for the dramatic, but throughout the book, I tussled with whether this was Anna or Graver herself.

The story of a mother and a family coping with a sick child - including how all of the relationships within the family are affected, not to mention household routines - gets railroaded fairly quickly. Anna finds a summer camp designed especially to accommodate sufferers of her child's disease and their families. The family's first visit ostensibly gives all of them new freedoms they have never experienced before. We really only follow Anna's personal pursuit of freedom, however. It would be acceptable to realize that this was really a story about Anna only and how she's been affected and what she's sacrificed and compromised and all the rest, but it all happens too quickly, both in the framework of the book and in presumed calendar time, to emotionally and realistically buy into it and accept the shift in focus. Essentially, the children and husband seemed to be dropped pretty precipitously and remorselessly.

To try to be sympathetic, perhaps Anna has become a bore *because* she has sacrificed so much for her family. But it still just makes for a tedious account of a person rationalizing her selfish, self-absorbed secretiveness, as her current behaviours morph into transgressions. However, when she starts to confess that she's had a somewhat furtive and untrustworthy track record all along - and therefore her current family situation is not what is driving her to be dishonest for the first time - all sympathy goes out the tinted window.

At least Anna's comeuppance has a bit of a twist to it. Sadly, that's not enough to redeem the book or the character. I'll try to give Graver some credit that she does think what her main character has done is irresponsible. However, it also feels like she cuts her a bit too much slack, lets her rationalize too much, and throws in a few convenient external excuses for her behaviour in the book's rather perfunctory wrap-up.

Maybe Anna is really just ill-suited for the life of a mother and wife, and she should have stayed on the rootless artist path she seems to yearn for. Or maybe there is a more clinical explanation for at least her more recent personal inconsistencies and inconstancy - she's just suffering from a variation of seasonal affective disorder, as she avoids the light almost as much as her afflicted child. But it doesn't explain away some of her earlier duplicity, and ultimately doesn't make for a sympathetic connection with the character and the book.

[Maurine Tritch · Rating 3 out of 5]

This book has a great premise: it deals with a mother whose nine year old boy Max has Xeroderma Pigmentosum or XP. XP, for those of you who don't know, is a severe allergy to sunlight. Think Nicole Kidman's kids in The Others. The solitary homeschooled world that mother and son inhabit, and later when we see the special camp for children who all have XP or some light sensitive disorder is fascinating. And all of this is set off by the gorgeous, gorgeous writing.

The problem comes in the middle when it becomes clear where this book is going. It turns into just another mid-life crisis book. It seems that whem men have mid-life crisis they buy cars and woo young women, when women have them they travel, pick up a vocation, have affairs and write about the experience in estatic, sympthetic prose. The world seems to treat such women better than the men, maybe because there's often a sacrifice made early on so the haring off into the wild unknown later seems like justice more than stupidity.

The mother, Anna, certainly had made her sacrifice, and now she gets to have her affair and voyage of self-rediscovery. But you can dress it up as much as you want: at the core, this is an ordinary story in extraordinary circumstances. Graver could have done a million things more compelling than this with what she had, but in the end the story was so banal and overdone that even a great premise couldn't save it.

[Cathy · Rating 3 out of 5]

I knew nothing about XP so just that aspect of the book was interesting and I was drawn in by the summer camp experience turned upside down by children who need to live in the dark hours and sleep while the world is awake.

There was a little too much navel gazing by Anna - not totally convincing in light of her choices - but hopeful that she will integrate her complicated past with her very full family life. I think she is more "Awake" in the end.

This book shares themes withDaniel Isn't Talking and Lisa Genova books especially Love Anthony

pg 154 "Use the whole spectrum, my art teach used to say. Excavate.Explore."

pg 192 "Even that loneliness I can remember, now, as something valuable, the sweet urgency of my need for people, the wide lap of my solitude, nights spent reading or sitting alone..."

[Victoria · Rating 4 out of 5]

I actually enjoyed this book a lot more than I thought I would. When I was in high school, and even part of college, I liked stories about affairs. But, as I have gotten older (and had real and more meaningful relationships), this type of plot appeals to me less and less. The sheer selfishness of these type of relationships are harder now to identify with. But, all that aside, I really did enjoy this novel. I wish that there had been a bit more about the disease at the heart of it, XP, but the way that the family's lives were drawn out gave this a very authentic feel to me.

The narrator, Anna, had a very distinct voice and even though I didn't always agree with her or her actions, I somehow could still identify with her throughout. We had nothing in common. But while the plot wasn't new, this story still feels so fresh. I greatly enjoyed it. I really enjoyed it so much more than I thought, and I am really looking forward to reading more from Graver in the future.

[Bailey · Rating 2 out of 5]

The story follows the mother of a child who has a rare genetic disease called xeroderma pigmentosum (XP) that results in light causing extreme pain and cancer. He lives in the dark, and the mother spends the majority of her time with him, while her husband and other son have more normal lives. They wind up attending an XP summer camp which is to give a normal life experience. When I first started reading this, I thought I'd get a chance to learn about XP. Sadly learning from this book was minimal and thought it wasn't a great deal of information I can't say that this was a terrible book. It was written well enough and it brought to light a very real disease that many people wouldn't even try to think about dealing with let alone and it did get me to go and research on my own time.

I could have done with out a whiny narration of a self absorbed lying cheater,and next time i need a fix of the type of drama involved, i'll watch a lifetime movie.

[Lori · Rating 4 out of 5]

This was a very well-written novel. I liked how it explored the dynamics of multiple relationships. The narrator is a woman in her fourties whose son, Max, has a rare disease that makes exposure to the sunlight harmful. She and her husband, Ian, and other son, Adam, take Max off to XP camp. There the narrator meets Hal, the camp director, a windower with a daughter and you can probably guess the rest. I thought the author's depiction of the narrator's thoughts and desires was interesting and realistic. However, at times the novel was a little melodramatic and I wanted to kick the narrator for making such bad choices. Still, I think the book is worth reading and I'd be interested to read other works by this author.

[Maggie · Rating 3 out of 5]

This was not quite what I expected; a story about a boy who has XP, his family and how they deal with the sickness. Actually, that is how it started (and the part of the book that I liked). I also enjoyed the descriptions of Camp Luna, the mountains the camp was situated in, how all of the activities were held in the dark (picture moonlight canoeing, trampoline jumping, hikes and swimming) and getting to know the other XP families.

But then it turned more into a story about the mom having sort of a mid-life crisis and I started to lose the interest that I had in the beginning. I wish the author had stuck with the original premise.

[Rebecca Curtis · Rating 1 out of 5]

The story is about a mother who has a son with a rare genitic disorder called XP. he is sensitive to sunlight and other light. it is about a time in her life where she is struggling to deal with her son's condition and her own self importance.

So I found myself not feeling empathetic to the Mothers cause at all but I was frustrated that she felt the need to treat her husband and her oldest child the way she did. she ignores them and belittles their hobbies and intrests. I could tell the ending and the story line after reading the first chapter. not a good sign.

[Lianne · Rating 4 out of 5]

I liked this book. Previous reviews indicated that people were mad at or didn't like the main character. I didn't feel that way about her. I empathized with her more, and didn't judge her based on her decisions. I appreciated her position, and just waited to see how her story ended. Relationships are complicated, and I can imagine this happenings in a similar situation in real life. This book is just another example of how beautifully flawed people are, and how ever evolving life and relationships are.

[Marilee Steffen · Rating 2 out of 5]

A mother of two sons, one with a rare genetic trait that may be fatal, has fashioned her and her family's lives around providing as normal a life for the sick boy as possible. She arranges for her family to attend a camp for children with this rare disease. While there, she realizes how restricted her life has become and how unhappy she is. She becomes involved with the camp's director and almost loses everything; her marriage and the respect of her children."Awake" is a story of human weakness and poor choices. I did not like it!

[Dale Harcombe · Rating 1 out of 5]

Well, didn't read to the end. Struggled to read it to begin with, even though the theme of dealing with a child who cannot go out in daylight is interesting. In the end, I could see where the story was going and I didn't really want to be taken there, largely because the main characters annoyed me. Anna, Hal and to a certain extent Ian all for different reasons. Others may have a different opintion but I couldn't stand any more of Anna and Hal in particular.

[Jill · Rating 3 out of 5]

This book was fairly good. Very interesting and beautiful writing. I am not overly fond of "love stories" and this has plenty of that, but it also has family dynamics and dealing with a tragedy.
Their son has a very rare disorder that make it impossible for him to go out in sunlight. They create a life in the dark but end up struggling with how much that limits them.

[Patrick Sheridan · Rating 4 out of 5]

Self-sacrifice becomes self-absorbtion? Compelling look into the life of a parent who is not allowed time to live that moves seamlessly into a stark analysis of the destructive force that is infidelity.

[Marguerite Hargreaves · Rating 2 out of 5]

I went looking for The Honey Thief at the library and picked this up in its stead. I like the premise, but found almost all of the characters annoying and stereotyped. The unraveling of the marriage seemed a relief, as did the end of the book.

[Carrie · Rating 5 out of 5]

I think this was a very good book because of how different it was. It still had the wife cheating on her husband and thats not original at all. I liked what was wrong with the boy and how unique that was. Even though there was adult content in it I still thoroughly enjoyed it.

[Katie · Rating 3 out of 5]

Does being dissatisfied with your life make an affair okay? I think not.
This author has a tendency to write a bit like Yoda speaks. Why? It doesn't make the subject any deeper/more important, just bugs me and makes me wish someone would just use the force already.

[Lauren Albert · Rating 4 out of 5]

Painful and honest--a woman has given up part of her identity in order to raise her son who has a rare congenital illness. Rediscovering that part of herself could turn her and her family's lives upside down.

[Rachael · Rating 2 out of 5]

Oh...I wish I liked this more...the last 50 pages were just a skim. I loved Ms. Graver's two previous novels: The Honey Thief and Unraveling. This felt predictable, done before...just with a different illness. The metaphors of light overdone.