On sharing grief and "The Fault in Our Stars"

I read “The Fault in Our Stars” last fall.  It’s about a sick girl who falls in love with a boy and they have adventures and fall in love.  I had intentionally put it off for a while.  I tend to not like stories about illness, for the same reason I tend to get irritated watching science-based television shows: it’s hard to enjoy the story when it is so inaccurate.  A lot of my friends had loved it and felt that I would like it if I read it. 

The majority of books or other media with sick characters do not accurately relay the experience of chronic illness.  There’s a new show out about a reporter with cancer and the first episode was painful to watch.  That’s not what it’s actually like.  It’s actually like… life.  It’s like life with medications and injections and lots of vomit, and also friends and boring errands and nice weather and victories.  There is this quality in a lot of stories about illness that life stops when you get sick.  It does not.  A lot of living with illness revolves around managing mundane details.  You can’t just run away from your life and have adventures when you get sick for real. 

So I read the book.  I read it very quickly and finished it on the train to work one day.  I literally bawled hysterically on the red line train while people stared at me.  It took me a few days to talk about it.  It was the only fictional book I have ever read that accurately described the experience of being sick.  It addressed the overpowering guilt you feel when you are seriously ill, the omnipresent worry that if you die, you will ruin the lives of those you love.  It addressed the awkward interactions between parents and their sick children.  And it also realistically depicted what happens when your disease progresses to a point that you lose control of your body, both physically and mentally. 

The change of seasons as fall became colder and less colorful was the backdrop to my disease progressing last year.  I read “The Fault in Our Stars” a few weeks before my bone marrow biopsy.  It affected me in a way few other books ever have.  It was heartbreaking both for the ways my story was similar and the ways it wasn’t.  It amplified the loneliness I felt in my damaged relationship.  It both validated my experience and reminded me that I was alone. 

I saw the movie yesterday with one of my oldest friends.  She has been on this journey with me from the very beginning.  It is weird to be a sick kid, watching a scene about eulogizing a sick kid, while sitting next to one of the people who will eulogize me.  It is weird to see my feelings depicted in a Technicolor teenage love story.  It made me remember things in my own life and feel them all over again.

When the movie trailer came out, I commented that I wanted to see it but wasn’t sure if I could.  I wasn’t sure I could handle it, especially as a big part of the book is being loved even when it gets hard and my relationship was so recently over.  As the opening of the movie drew closer, a lot of my friends told me that they wanted to see the movie with me. 

When you are friends with someone, you share a lot of things with them.  We share a lot of happy memories, and now I am sick, and we share that, too.  It feels lonely sometimes, but really my disease is a group experience.  Wanting to do this together is, in some ways, an expression of the fact that they are with me and they still love me even though it’s hard, and that they will keep loving me even when it’s harder.  It is a way to feel this pain together in a confined space. 

It’s funny the things that become meaningful in the context of your life.  To some people, it’s just a movie, but to me, it’s a metaphor for all the things that have happened to me.  It’s a way to share that experience with the people I love and grieve together for a little while.

 “Grief does not change you, Hazel.  It reveals you.”  John Green, “The Fault in Our Stars”