Our Recommended Book List for Grievers

Maybe it’s just us, but we keep seeing lists of books, such as Best Books of 2016, Bestsellers Lists, Books to Read in 2017, posts of what people learned in 2016, and their goals for future reading. We want to get in on this! As we look back on 2016, we realize that we learned many things and laughed often from reading. Below is our own unique list of books that have helped us in our healing. We have previously recommended some of these books in past blog posts and on our resources page but wanted to revisit a few and share some of our favorite parts and quotes. In no particular order…

It seems appropriate to start with this New York Times bestseller When Breath Becomes Air, which brought to the forefront the subject of death and dying and was groundbreaking in that it is from the perspective of the patient, or the person dying. Paul Kalanithi as both a physician and a patient contemplates, “What makes life worth living in the face of death?” At a young age, just like our sister, he was forced to face his own mortality. It is difficult for us to choose just a few favorite quotes, because surely we would be sued for copying the entire book. We previously discussed this book and others like it in our post "At Least America Is Reading About Death." Many can learn from his wise words and his insight into changing the medical field’s view of the dying and how to help them:

“Amid the tragedies and failures, I feared I was losing sight of the singular importance of human relationships, not between patients and their families but between doctor and patient. Technical excellence was not enough…..When there’s no place for the scalpel, words are the surgeon’s only tool.”

In Fly a Little Higher, Laura Sobiech brings us on her heart wrenching journey of her son’s battle against osteosarcoma which he unfortunately lost. We related to many parts of her book- the ups and downs of cancer, the scenes of her tight knit family dealing with such tragedy, the siblings' heartache, the awe of watching the patient face it all with such grace. When she talks of her children, she refers to them as “a team...and they worked best when together.”

Laura even allowed us to laugh a few times. One of those times was when she is talking about how people aren’t sure what to say and can’t imagine dying young. She says:

“I’d often fantasized about writing a tutorial entitled ‘What Not to Say.’ It would be very basic, just a couple of hard and fast rules:
1. If the sentence you are about to say starts with the phrase ‘have you’ or ‘should you’, don’t say it.
2. Unless you have had a child with the same disease and you’ve been through the exact same thing, don’t offer advice.
3. Don’t tell me about everyone you have ever known who has either battled cancer or died from cancer.
4. Don’t tell me to be grateful.”

This list should be printed and handed out to the masses. Thank you, Laura.

Not to give away too much of this novel, A Window Opens by Elisabeth Egan, some great advice and insight comes after a death in the family. She deals with the brutality of having to return to work and the real world:

“One by one, the guests left my mom’s house. They promised to check in soon and made us promise to let them know if there was anything they could do. News flash: nobody is going to give you an assignment. Just do something.”

And we laughed out loud when the main character returns to work and is asked by a coworker if she received the Edible Arrangement: “‘Yeah, definitely.’ Translation: ‘Actually, not so much. Pineapple impaled on a toothpick doesn’t make anybody feel better, ever.’”

Nora McInerny Purmort’s It’s Okay to Laugh: (Crying is Cool Too) was just what we needed - to laugh during our grief. We related to her sarcasm and felt like we could be friends. She struggled with a run of terrible things that happened to her in a short period of time and shares it all in a very real way. There are too many good parts so you really just need to read it, but we loved the chapter where she discusses her relationships with her siblings. Of course, it is funny, and we appreciated the little tidbits like how she describes herself as a “knockoff of her sister...but taller.” When her husband entered hospice, she talks about how her siblings helped her and were with her:

“She [Nora’s sister] was ...perpetually cleaning my kitchen, raising my child, and giving me healthy pours of white wine to anesthetize me at night."
Her brothers were present too and you can sense the type of unwavering sibling support that they provided.:
"When I went to bed, I heard him [Nora's brother] saying good night to Aaron [Nora's husband]. 'It's okay, buddy,' he told him, 'I'll take care of them. You did good. You did real good... We learn as we get older to appreciate the people we love for who they are, and for how they love us.”

In The Rainbow Comes and Goes, Anderson Cooper and his mother, Gloria Vanderbilt, publish their correspondence over the course of a year in which they discuss their lives and losses, including Anderson’s father and brother. They talk about grief and death honestly, and their fears and hopes, as when Anderson writes: “I haven’t told you this before, but I’ve always assumed I would die at fifty because that is how old Daddy was when he died.” We related to Anderson explaining that he never expected to lose his brother, instead expecting to have more time together:

“My greatest regret is not making more of an effort to be closer to Carter, not talking with him about feelings or experiences we may have shared. Perhaps it would have made a difference in what happened to him. I always imagined we would be closer as adults, once we had lives of our own. I thought there was plenty of time.”

Yet, ultimately, knowing that “the rainbow comes and goes” - a phrase from Wordsworth - is what Gloria tells Anderson that she finds so reassuring:

“In every life, you have moments of blinding beauty and happiness, and then you land in a dark cave and there is no color, no sky. Then the rainbow returns, sometimes only briefly, but it always does come back. You have to believe that it will, even in the darkest of times. That belief is what is really important.”

At Least America Is Reading About Death

If it feels like everyone is talking about Paul Kalanithi’s book, When Breath Becomes Air, it’s because they are. In fact, there are several recent books and articles about the hot topic of death as this New York Magazine article points out. It is interesting that books about mortality - including Paul’s book, Michael Kinsley's Old Age, and Atul Gawande’s Being Mortal - made it to the New York Times’ bestseller list. We have a particular interest in these topics after our sister’s death from cancer, but, surprisingly, it looks like we are not alone even among death-phobic Americans. And here we almost named this website (sarcastically) “another f***ing blog about death.” We are so relieved. We don’t want to be the ones known as “the weird sisters that always talk about death.” #theyarealwayssad #alwaystalkingaboutdeath

Even grumpy cat wants to... Visit  www.grumpycats.com  for more about grumpy cat.

Even grumpy cat wants to... Visit www.grumpycats.com for more about grumpy cat.

Maybe a culture change is happening and Americans are more ready to face difficult topics, such as end of life, death, and grief. As the article notes, 90% of Americans in the Conversations Project survey felt that end of life discussions are important... yet just 27% of them went through with it. We completely agree that these are important discussions and hope that some are even happening ahead of time, to prevent undue stress when someone is dying. But if we’re not ready to truly tackle these issues, at least we are reading about them. We get that reading about death for leisure seems odd. Why would we be drawn to dark subject matters to fill our precious “down time?” We aren’t suggesting that you focus on these sad themes while on your beach vacation, but signs pointing to a shift away from a “death-avoidant culture” and towards an increased focus on end of life care are positive and we encourage it.

When our sister was dying, we found it incredibly difficult to have the necessary conversations and did not find much guidance regarding how best to handle it. Even doctors have a hard time giving their patients a straightforward prognosis and helping them prepare for death. Atul Gawande has brought to light the areas that are lacking as we approach death. Although Being Mortal is focused on aging and senior living, many of his ideas resonated with us, especially his call for medical professionals to focus on well-being, figure out what the patient values and how they want to live, nurture their independence, and not just fight and cure disease.

After our sister learned that there was no further treatment available to fight her cancer, we discovered that many people could not wrap their minds around a young person’s mortality. People continued to tell her and us that she was so strong, that they knew she could beat it. Paul Kalanithi’s When Breath Becomes Air provides an account of a young person coming to terms with death. You can understand his confusion - “what tense am I living in now?” - and his reaction to people making plans at a college reunion to see each other at the next one - “it seemed rude to respond with ‘Well… probably not.’” Like our sister, he was a doctor and a patient. His doctor gave him one of the greatest gifts we can imagine for someone like Paul and like our sister - she told him she was happy to have his input but also happy to just be the doctor. As Paul explained: “While being trained as a physician and scientist had helped me process the data and accept the limits of what that data could reveal about my prognosis, it didn’t help me as a patient…. Like my own patients, I had to face my mortality and try to understand what made my life worth living.”

When our sister died, we were shocked by how many people were at a loss for what to say or how to help us. This seems especially true for us young adults who may not have much experience with death and grief or have not really had a reason to stop and examine mortality. Perhaps at our young age, we feel invincible or feel that we are far away from dying. But as Paul’s wife Lucy wrote in the epilogue to his book: “[Paul] wanted to help people understand death and face their mortality. Dying in one’s fourth decade is unusual now, but dying is not.” The point of being more comfortable with death and mortality is to accept the inevitable in hopes of living a better life now. We also felt more sensitive to these subjects after caring for our sister and being present for her death. After our experience, it was jarring to witness conversations where people joked about terminal illness or death - friends in their 30s and 40s being dramatic about their minor ailments. We too frequently take for granted that others around us may be grieving. We also take for granted how valuable it is to LIVE life and to feel good.

For us, reading these books is a little like reliving the tragedy that we just experienced. We can only read them in small doses, but we are so impressed that these authors were able to draw attention to tragic yet important topics in such beautiful ways. We will all experience death and grief in our lives - and also perhaps caring for someone at the end of their life. You can face it head on, figure out how to deal with it, and some day it will change you and teach you more than you could ever imagine. Paul and Lucy Kalanithi opened up and shared genuine and brilliant thoughts on the meaning of life and death and in return, we are all benefiting. Paul's most powerful and breathtaking advice on life's meaning is directed at his infant daughter:

“When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.”