Friday, January 28, 2011

Before I Die: Coming To Terms With Dying Too Young

Sixteen-year-old Tessa Scott is going to die. Soon. She has had acute lymphoblastic leukemia for the past four years, and now she's been told additional treatment will do no good. That's how Before I Die, by Jenny Downham, begins.

Tessa makes a list of the things she wants to do and experience before she dies, and the book is about how she moves through that list--and the final months of her life.

When I was on internship at The Children's Hospital of Philadelphia, I did a rotation on the oncology unit. I didn't work there very long, only six months, but it was an experience I'll never forget. I witnessed the struggles of families trying to remain close, to remain themselves, despite the disease that had twisted up their lives. Some were having to help their beloved children through the process of dying.

The question that kept coming up?

Nope, not WHY. I mean, there was that, but most families had a much more pressing concern:


How do you parent a kid who's dying? Can you set any limits and boundaries at all, or do you just let them do whatever they want (like Tessa, who wants to have sex and try drugs and drive a car even though she doesn't have a license)? How do you help when there's no fixing it?

And ... how do you deal with a kid who's just plain angry?

That one was the hardest. Right when loved ones wanted to be close, the kid was sometimes shoving them away.

In Before I Die, Tessa is angry sometimes. Inconsiderate. Even cruel on occasion. (She is also bright and generous and creative and curious and lovely.) I've read (a very few) reviews where readers said they didn't find Tessa that sympathetic.

I was stunned.

You're reading a book about a girl who's dying, and you expect her to be OK with it? You want her to be peaceful and loving all the time? Really? I mean, that would be utterly cheap (and boring), but leaving that aside ...

How would YOU feel if you were sixteen and your life was coming to an end? If you watched your healthy classmates live their lives with wide-open futures, and you'd been informed you wouldn't see another summer? If you'd found a boy who cared about you, who made you feel good, and you were counting the times he touched you, and wanting a lifetime of those feelings, and. And.

Tessa's supposed to be experimenting. Figuring out who she is and starting to solve real-life problems on her own. Exerting some control over herself and her choices. That's what sixteen-year-olds must do. And she does, all while coping with her failing body. Knowing her death is going to hurt people she loves and who love her, but needing them near her anyway, fighting with them anyway, getting closer to them anyway. How any kid, any person, wouldn't be  at least a little angry about that, I do not know.

Research shows that young people with cancer are actually reasonably well-adjusted in comparison to their peers. But those were kids in remission, not kids who were considered terminally ill.

At the beginning of Before I Die, I read out of curiosity. And admiration for Jenny Downham's tremendous gift for simple, powerful description. The novel is written in first-person, present-tense, and no other style could have worked--the immediacy of Tessa's experience is perfectly conveyed. If you want a lesson in adding detail and idiosyncrasy to a narrative to keep it grounded while at the same time rendering it unique, read this book.

So I marked (NUMEROUS) passages and reread them. And I liked Tessa. I thought she was genuine and believable. I was OK with what I knew was going to happen at the end of the book.

By the time I reached the halfway point, my curiosity and admiration were gone--in favor of feeling Tessa's fear and frustration and joy right along with her. As she negotiates a new and fragile relationship, as she has moments of hope and triumph, I was thinking:

Not yet. Not yet. Not yet.

Before I Die is a beautiful book, and also a painful one. But definitely worthy of a read.

How do you keep characters genuine and believable and relatable even when they're going through something that makes them miserable? Do you feel the temptation to soften them up to keep them sympathetic? Do you pull back from ugliness and anger because you worry you'll lose your reader? And when you read, what is it about a character that keeps you walking down that road, and turning those pages, with him/her? What makes you care about a character like this, and what puts you off?


  1. hi miss sarah! yikes! this was a pretty hard post for me cause that ALL is just what i got. i been in the hospital lots from three years and one time i almost got dead but god said not yet lenny cause you got stuff i could want you to do. then i got past being scared. just only a month ago i got a pretty good bone marrow but i gotta go in feb for another. ack! maybe i could need to read this book so it could help me get ready to die if thats what gonna happen. for sure its just real hard for family. my mom and dad are dead and its just my 4 brothers and my sister thats my support and i got a ton of cool blogger friends too. :) thanks for a cool post.
    ...hugs from lenny

  2. I haven't even heard of this one, but you make it sound pretty compelling. I may have to add it to my list. Thanks Sarah!

  3. My god I just saw Lenny's comment. I love that kid. Poor guy. You're in our prayers bud!

  4. I loved the book, and to have written Tessa any other way would be unbelievable. And Lenny's comment had me in tears.

  5. Wow. I would really love to read this book.

    I'm praying for you Lenny.


  6. Wow, I don't know if I could read a book like that. Being the mother of an almost teenager daughter would make question how I would handle something so horrific. How she would handle it. It would make me sad and I don't like sad.

    And here's a (hug) for Lenny.


  7. Wow. What a post. This books sounds great, though I'm not sure I could handle it. It does sound painful. You make great points though about being true. Often we "romanticize" characters to act how we think they should act in any given situation, rather than what is a more likely, natural progression of events.

  8. Moving this into "must read" status! Thank you for yet another great recommendation. If you just made a list of "must reads", I'd follow it! ;)

    I never knew Lenny's story, but (hugs) from me too! I'll be sending prayers.

  9. Lenny--it's very brave of you to share your story! Every person's path is different, and it's important to always have hope and to be around people who give you hope no matter what you're facing. It sounds like you have a lot of people who care for you--both in your everyday life and in the blogosphere--and it sounds like you are doing a great job of getting support from them. And that said, it might be a good idea for you to talk with one of your older brothers before reading this book, and maybe have one of them read it first and talk to you about whether it's a good idea for you to read.

    Matt, Misha, and Carolyn--this book is both well-written and emotionally powerful. I hope you get a chance to read!

    Jennifer and JD--you have to know what you can tolerate, so your hesitance makes sense! Know thyself, right?

    Stina--I'm glad you liked it, too, and that you understood Tessa! I agree that she wouldn't have been believable any other way.

  10. This does sound like a brilliant book that I maybe could not get through...

    Prayers for Lenny too.

  11. Oooh, interesting...not sure if I can read this one. I tend to go with fantasy books for the simple fact it's NOT real life and therefore not close to my day job in any way...

    I might have to make an exception for this one. ;)

  12. Sounds like a great pick! I love the idea of an honest protagonist who helps the reader feel the power of life even as it slowly slips away from her.

  13. This topic would have me in tears despite/in spite of my profession. Don't know if I can handle reading it.
    And Lenny--super big cyber hugs for you, my friend.

  14. Before I Die is my favourite book ever. It's remarkable how realistically Jenny Downham treated the subject of a dying teen. Tessa is one of the most unforgettable characters I've come across in YA fiction.

    This is a brilliant post.

  15. This post let me absolutely at aw. Amazing. Amazing post. I definitely want to check out this book now.

  16. Lenny...we love you...(((giant hug)))

    Sarah, I'll make sure that Lenny's brothers know about the book and your concerns.