The Bright Hour and other books

After reading Paul Kalanithi's memoir When Breath Becomes Air (twice), I searched for other books written by people in similar situations. Come to think of it, before Kalanithi's book I read What Remains, by Carole Radziwill. Some might read this book for insight on the Kennedy family and its tragedies, but I was captivated by Radziwill's account of her 5-year marriage to Anthony Radziwill, a cousin of John F. Kennedy, Jr. Anthony's terminal cancer encompassed their entire marriage and he died at age 40. Carole Radziwill wrote bravely about her experience as a care partner in a terribly difficult situation. I've since checked this book out two or three more times. I picked it up again while Chris was in the hospice house. Her honesty took my breath away; I found a unique resonance in her words.

Of course there is Nora McInerny's on point memoir It's Okay to Laugh (Crying is Cool, Too). In it, she describes the brain cancer journey she accompanied her husband on. She has an outstanding podcast, Terrible Thanks for Asking, that I discovered on NPR when she started it. Now, I listen to every new episode shortly after it drops. Might be a bit dark for some, but I'm in a place where I crave the stories of people facing extreme, unexpected difficulties. These stories are like oxygen for me. Last spring I used my library skills to secure Nora's book via interlibrary loan and devoured it in a few hours. I laughed, cried, feared for the future, and felt understood while my children marveled over the book jacket. "This book is for people who have been through some $h*t." MOM what are you reading?!?! A kind, anonymous person just sent me my own copy. I can't wait to read it again. Thank you! Nora has a new book that I'm not quite ready for, No Happy Endings, but I will get to it.

For a week or two this fall I spent commutes listening to Sheryl Sandberg's Option B. It was probably too soon; I wasn't ready for fully contemplating after but I couldn't stop myself... I needed some sign that the kids and I would survive, and I found reassurance from Sheryl. Now that I am in the after, I remember some of the nuggets from her book and am putting them into practice.

After that, I listened to Being Mortal by Atul Gawande as a I drove to and from work. Wow. Now that Chris has died, I think about this book and I hope that Chris felt our decisions at the end of his life reflected what was important to him. 

Somehow I learned about The Bright Hour, by Nina Riggs. Our library had it as an e-book and I added my name to the long wait list, then forgot about it. In mid-December I got a notification that I had a new e-loan. Late at night after Chris was asleep I read this book, my iPhone a tiny light in the darkness getting splashed with tears. Oh my. This memoir is everything the reviews say - gorgeous, unforgettable, life-changing. Nina was diagnosed with breast cancer at 38 which never responded well to treatment and quickly became metastatic; she had a wonderful husband and two young sons. Her book is organized by stages of her cancer. Nina wrote about living with cancer while accepting her fate, trying to wind things down and lamenting over leaving her sons. She also wrote about the concurrent loss of her mother.

Nina's writing is truly exquisite. She probed her illness and examined her reactions with an honest clarity. Her book came to me at a difficult time but it was the right time. As I turned to the part titled Stage 4, it was well past midnight. I knew that Nina died and the memoir came out posthumously, but I was now invested in this book and I could not accept that her brilliant, beautiful voice was actually silenced. Suddenly I could not read through my tears so I got up and took my phone out to the living room. I made a nest on the couch and in the glow of the Christmas tree, I cried harder than I can remember. I knew that Chris would die soon and I could hardly believe it. It is just so unfathomable that vibrant, young parents die. Bad things happen to really good people who have so much more to offer the world.

Once I could read again, Nina's words resonated deeply as she grappled with dying:

"I want all of it - all the things to do with living - and I want them to keep feeling messy and confusing and even sometimes boring. The carpool line and the backpacks and light that fills the room in the building where I wait while the kids take piano lessons. Dr. Cavanaugh sitting on my bedside looking me in the eyes and admitting she's scared. The sound of my extended family laughing downstairs. My chemo hair growing in suddenly in thick, wild chunks." 

Chris, too, wanted all the things. He packed lunches and checked backpacks for snacks, he wanted to see more baseball games and hear more piano lessons. He wanted more laughs with family and, especially, Christmases. He had come to terms with his disabilities and didn't let them get in the way of interacting with his important people. He just wanted the fundamentals, the things that a healthy person might not even think would be important at the end of life.

Chris and I talked extensively, deeply, and earnestly over the last difficult year. We had left nothing unsaid, tackled the important and difficult conversations, and spent a great deal of precious, quality time together. Chris knew it would be hard, but I sensed that he was at peace about leaving me because there was no question in his mind that I knew him completely, we loved each other fully, and I would know these things, too. The kids, now they were different for him. Chris struggled mightily with how to leave them. They are so young and just beginning to come into their own selves. Chris saw them grow and change  during that last difficult year, and he was painfully aware that they would continue evolving long after he died. He wished he would be able to come back and see how they turned out, to know them as adults. Chris worried that they would not know him, that they would miss out on many things by not having a dad around, and he worried that they would not know how much he loved them and how much they meant to him. 

Nina Riggs struggled with leaving her sons, too. Like Chris, she found it within herself to be able to let go of just about everything else, including her husband, but could not consider her children in the same way. She wrote: 

"Their very existence is the one dark piece I cannot get right within all this. I can let go of a lot of things: plans, friends, career goals, places in the world I want to see, maybe even the love of my life. But I cannot figure out how to let go of mothering them."

At the hospice house, Chris asked for the kids frequently and each day was focused around when they would come to visit. He told the kids that they were the hardest to say goodbye to. On the last visit, he could not really speak but he touched their faces tenderly. He loved them so much. It was beyond wrenching for me to watch...

Now that he's gone, I can hardly believe that everything happened. It's dumbfounding. Chris actually did die, he did not beat the abysmal statistics for GBM. We never thought he would and we never carried false hope, but still, at least I could not actually imagine how it would be when he died and then was gone. Why do I have a hard time understanding this? It bothers me a lot that somehow I felt surprised by Chris's death. I found Nina Riggs' memoir so helpful. She seemed to struggle with the incredulity of the trajectory of her illness, too. At least two times she quoted a passage written by Michel de Montaigne, a French philosopher who was never afraid to ponder death:

"Did you think you would never reach the point toward which you were constantly heading?"

Apparently this thought process has been around for centuries. I now concede that it is part of human nature to grapple with dying. Every one of us must walk our own path toward acceptance of the mortality of ourselves and the ones we love.

I've been going to the library a lot. It's partly to feed my obsession with the show Homeland and continue my nightly ritual of drowning out the thoughts in my head with an episode or two of the spy thriller (not on Netflix, yay libraries and DVD collections). The other night I brought my laptop during the kids' basketball practice and wrote for an hour. But most often I seek out familiar shelves, finding these books I mentioned and paging through them to find the most resonant passages. It's a need that is deep, I truly need to read those resonant lines to feel sane. I brought The Bright Hour home in hard copy and read it through again, crying often, wanting more after the last sentence of the afterword by Nina's husband. It's a book I will purchase and underline, highlight, put sticky notes in, and recommend to anyone. Read this book. Be astonished. As Nina did so well, love your days - all of them - the best you can.