‘End of Your Life Book Club’ Review
When Mary Anne Schwalbe received her terminal pancreatic cancer diagnosis, it shouldn’t have come as a surprise to her family that her coping mechanism would be reading. Throughout her life, whenever she was sad, confused or out of sorts, Mary Anne would seek solace within the pages of a good (sometimes bad) book. As her son Will wrote in “The End of Your Life Book Club,” for his mother, “Books focused her mind, calmed her, took her outside of herself.”
Birth of “The End of Your Life Book Club”
Described and slated as a memoir, “The End of Your Life Book Club” is truly more of a biography of Mary Anne’s life. The book begins in the waiting room at Memorial Sloane-Kettering’s outpatient care center. Will accompanies Mary Anne to her chemotherapy appointments in order to keep her company and spend as much time as possible with her. Mother and son, both avid readers, often shared books and compared notes about their thoughts and feelings. And so the two-member book club is born.
Each chapter of this book is titled with a book selection. Books were a common bond, but they also served as a distraction from the reason why they were sitting in the waiting room. He notes in the fourth chapter, “Marjorie Morningstar,” the following: “That’s one of the things that books do. They help us talk. But they also give us something we all can talk about when we don’t want to talk about ourselves.”
While the author touches on various aspects of the selection—novel, play, book of poetry, short stories—and the ensuing discussion with his mother, he deftly weaves in glimpses of the family and their lives over the years. Oftentimes mid-chapter, mother and son play the “remember when” game. For instance, the reader learns how Will and his brother would use an engrossing read to shirk chores that weren’t to their liking. The key was looking and being completely immersed in a book, as just flipping pages didn’t count to get them out of the task at hand.
Seeking Palliative Relief
As time marches on in the book, the reader begins to see more and more how Mary Anne is affected by her illness. She manages to soldier on by setting goals for herself—what family events she wants to be around to attend.
Mary Anne has a wonderful and caring physician who guides her with understanding and wisdom throughout her end-of-life journey. Dr. O’Reilly and Mary Anne are on the same page for the primary goal of making life worth living, which also means alleviating pain. This is where the two differ. More often than not, Mary Anne is not truthful about her pain level. In fact, she refuses to even use the word “pain” and instead will only admit to “discomfort.”
It isn’t until Thanksgiving, two months after her diagnosis, when Will’s mom admits she isn’t doing well and will not make it for dinner. Nevertheless, Mary Anne is always thankful for her “good days,” and invariably finds the “not-so-good days” frustrating.
Throughout the book, there are times when life and the literary work of art meld into one. For example, when the mother and son are reading “Gilead,” they discuss one of Mary Anne’s favorite lines that poses an important question, and she now sees it in a new light. The question appears within the following passage: “When you encounter another person, when you have dealings with anyone at all, it is as if a question is being put to you. So you must think, what is the Lord asking of me in this moment, in this situation?”
In the past, Mary Anne would keep this question in mind when she met new people in her professional life (primarily at Harvard University as the dean of admissions and financial aid, and as the founding director at the Women’s Commission for Refugee Women and Children), but now she contemplates the answer with a different mindset. As she comes in contact with other patients, nurses and doctors, it helps Mary Anne conclude that the answer is different for each person and each situation. Additionally, it makes her remember that people aren’t here for just her—everyone is here for one another.
End-of-Life Wishes
Will recounts how the family was fortunate as both Mary Anne and her husband, Douglas, were well-versed and educated about the hospice movement and its palliative benefits. The couple’s wishes were known and documented well in advance of Mary Anne’s cancer diagnosis. Will and his brother and sister know their parents have completed Do Not Resuscitate orders and living wills. Figuratively speaking, the siblings will not have to squabble over what the elder Schwalbes want when the time comes.
Mary Anne and Douglas know there would be no heroic efforts to save their lives, and they emphatically want to die at home. With the picture of how they want to die in their minds, it is easier for everyone to discuss dying, death and what needs to (or not) be done. For her family, as the end draws near, Mary Anne’s philosophy about her terminal diagnosis makes it easier on those loved ones left behind. Hospice care is brought in to help meet her needs.
Will makes a point of describing how hospice care differs from his mom’s prior healthcare. After greeting the family upon arrival, shortly thereafter his mom’s hospice nurse directs all conversation to Mary Anne and takes his mom’s hands in her own. In the past, other healthcare providers would speak to the family and not his mother (even when she was there), and most assuredly avoid touching her.
Mary Anne definitely makes the point that she is “living while dying and that whatever time she had left was not to be turned into a rolling memorial.” Mary Anne’s family is grateful and blessed for having such a wonderful wife, mother, mother-in-law and grandmother in their lives. And for the rest of the world, Mary Anne is a unique champion of the forgotten, mentor and friend.
Mary Anne knew what she wanted her ending to be (and it will come as no surprise that she had a penchant for always reading endings first). Even though the End of Your Life Book Club was primarily composed of two members, we’re all in the book club whether we acknowledge and accept it as such. Mary Anne knew that. Every book we read could be our last (there were 174 books read and discussed by Will and his mother). We should cherish every moment as we make the most of life.
At Chapters Health System and its affiliates—Good Shepherd Hospice, HPH Hospice and LifePath Hospice, every day is devoted to educating our patients and keeping them in the place they call home. We are dedicated to ensuring that patients, young and old alike, and their families are able to make educated decisions about important healthcare matters. For more information, please call our helpful Chapters Health team at 1.866.204.8611 or send an email to info@chaptershealth.org.
About Phoebe Ochman
Phoebe Ochman, Director of Corporate Communications for Chapters Health System, manages all content and communications for the not-for-profit organization.
Trends in Books: Little Free Library
In 2009, at the end of his driveway in Hudson, Wisconsin, Todd Bol set up the very first little free library. He never realized that this simple concept would morph into the worldwide phenomenon that it is today. Currently, there are more than 60,000 registered little free library book exchanges in all 50 states and 80 countries around the world.
What is a Little Free Library?
A little free library is exactly what it sounds like—a small and free place to either take a book, leave a book or both. They can be as low-tech as a plain weatherproof box to ornate works of art (castles, bed and breakfast replicas, cars, etc.) You can purchase kits from the non-profit Little Free Library organization or do-it yourself.
Little free libraries can be located anywhere. If you would like your library registered with the ability for the location to be discovered on an online map, you just need to register it with Little Free Library. Once the registration is completed, you will receive a small sign that you can put up on your library saying “Take a Book, Leave a Book.”
These newfangled libraries tend to pop up in various communities: neighborhoods to parks to even nearby places of worship and businesses. The goal is to encourage a love of reading while at the same time build community bonds and increase access to books for all reading backgrounds and ages.
Is the Lofty Goal of the Little Free Library Successful?
According to a recent Little Free Library survey:
- 74 percent of people shared that they read a book they wouldn’t normally read were it not for a Little Free Library in their neighborhood;
- 73 percent of those surveyed met more neighbors because of the exchange; and
- 92 percent of people said their neighborhood now feels friendly because of their little free library.