My friend’s daughter died last Wednesday, Feb. 12. She was
only six years old. She died of an incredibly-aggressive brain tumor called
DIPG. I have been awash in feelings –actually, I’ve been awash since October of
2013 when Jennifer Lynn Kranz was first diagnosed and given the life expectancy
of six to nine months, and her mom first began
blogging.
Jennifer only got three and a half months after diagnosis.
At one point, her mom Libby linked to the blog of a mom who
had already lost her child. That woman wrote about how she couldn’t read novels
anymore, that they required her to mentally leave her world, and she couldn’t
bear to leave the world in which her child had once lived.
That made me worry that that was true of all parents who
lost children—because Libby loves to read. She is a member of the Book Club I
loved dearly until I had to move out of town. I loved hearing Libby’s take on
the books we read and always learned something from her perspective. And it turns
out she is an incredible author, from her stripped-raw words on the
blog about her deep love for Jennifer and
her bewilderment at the situation they had been placed in.
In the last three and a half months, I have taken solace in
reading. I have traveled, as I always do when I read, to stalk other
landscapes, eat in other people’s homes, sleep on their pillows, fight their
fights, kiss their lips. I’m fervently grateful for books. They have been my
escape route.
I typically do a seasonal book recommendation, but this time
I’d like to recommend books that truly transported me. These weren’t all the
books I read recently; they’re all the books I loved recently.
In no particular order:
1. We Are All Completely Beside Ourselves by Karen
Joy Fowler.
In this book that probes how we interact with animals and
feel about our own animal selves, the main character reflects back on a life in
which she was raised alongside a chimpanzee. Ostensibly a scientific experiment
to see if/how the chimp could learn language and communicate with humans, the
concept also involves how the human learned from the chimp and what unexpected
effects arose. I’m not doing the plot justice, but I also want to avoid plot
spoilers. I found this absolutely graceful, kind and thought-provoking.
2. Don’t Turn Around by Michelle Gagnon.
Disclosure: Michelle and I were in the same writers group
eons ago, but that connection is not why she shows up on this list. I
absolutely loved her young adult novel about a girl who wakes up in the middle
of some sort of malevolent experiment being done on her, and she must escape,
figure out what she has become entangled in, and assist others. It’s fast-paced
and plotted so well. The character is really likeable and you ache for
her disrupted childhood.
3. The Archived by Victoria Schwab.
I picked this out for its incredible cover, but fell in love
with what was inside. In this young adult novel, a girl helps usher confused,
newly-dead to their next destination, the Archives. I will say that although
the Archives are essentially libraries (some of my favorite places in the
world), they are bleak –and this may not be a comforting book for anyone
thinking concretely about life after death. But the story is touching and
incredibly well-told nonetheless.
4. The Tragedy of Arthur by Arthur Phillips.
I loved this novel so much I assigned it to my community
college English students. Its conceit is that Arthur (Phillips) has come into
possession of a lost Shakespearean quarto and the novel is really his
introduction to Random House’s publication of this play. He tries to--at
length-- convince the reader that the work is a forgery, and the book
culminates in the play itself. I’m surprised this book didn’t get more
buzz/acclaim (it’s already in paperback): I really consider it Pulitzer
material.
I feel like there’s a fifth book I’m forgetting.
Forgetting is a good thing. We read to forget.
Jennifer’s mom asked us—the community of the web, as well as
those she knows personally—to share, tweet and link to the following
video. It’s only one minute long and although she addresses President Obama
directly, it isn’t a political video. It’s a video in which she asks that the
funding for cancer be more fairly distributed—not that more funding be
allocated, but that children get more than four percent of the already-allocated
funding.
Were you aware that pediatric cancer only gets four percent
of cancer funding in this country? I’m not sure what precise percentage of the
population children actually represent, but it’s around 24 percent. And
pediatric cancer is so dramatically unfair: these kids haven’t had a chance to
live their lives.
We know as much about DIPG as we did 30 years ago. If
research had been tunneling along for the last three decades, Jennifer might be
alive today.
Libby filmed this video Feb. 1—less than two weeks later,
her daughter had died. Please share, tweet and link to it. Let’s get the
money and the advocacy rolling, so the next child with DIPG may survive.
Twitter: #love4jlk
Facebook: Love4JLK
Web: www.love4jlk.org
And if you would like to donate directly to the Jennifer
Kranz Research Fund, click
here.
. . . . .
Next day:
I remembered the fifth--and I feel awful for forgetting it because it honestly was my favorite of the bunch. In fact, I had just finished the book at night and had been intending to email the author a long, glorious, happy, praise-filled message in the morning, but the next day was the day Jennifer died.
The book was
Illuminations by Mary Sharratt. I previously ran a
Q&A with Mary in November, but I hadn't had a chance to read the book. When I did read it, I found that every page brought beauty. The novel tells the story of Hildegard von Bingen, a young medieval woman who was walled up into a cell of the church as an Anchoress--actually, she was a girl at the time, and it was not her choice. She went into the Anchorage with Jutta, an older girl who felt called by God to remove herself (and Hildegard) from the secular world. As
Illuminations progresses, we learn the reason for Jutta's life-changing choice, and we see how Hildegard makes the most of her life in seclusion. She fights and advocates, both for herself and for other girls destined for the Anchorage, such that she becomes a world-renowned visionary and author/composer whose work endures to this day.
Sharratt's writing is so drenched with beauty, and she makes something .... well,
illumined out of the stark life Hildegard lived. I felt that I lived Hildegard's life with her, and can so very visually see the confines of the cell, the small courtyard they were allowed, the slitted window through which they could see the monks at prayer in the monastery. I felt the book was actually quite cinematic, which is quite the feat for a book whose "footprint" is so small. I'd love to see this on the big screen in the hands of someone like Cary Fukunaga.
I sincerely loved this book and felt something I rarely feel...pending sadness as I approached the end. I didn't want it to end, and that's an emotion I don't feel usually while reading. I like to read to the end, find out, and move on. With this book, I wanted to linger. I saw from the old Q&A linked to above, that Mary had to delete 40,000 words of the originally much-longer manuscript. How I wish we could have a "director's cut" and see those deleted but doubtlessly valuable scenes.
A gorgeous book, and my most recommended.
