On a Monday night this time last year, I know what I would have been doing after the kids went to bed and I had finished any remaining work for the day—I would have been sitting down with my big bowl of ice cream watching Dancing with the Stars (as long as it didn’t conflict with the Bruins). I used to love that show—the costumes, the music, the personalities, the mysterious romances, the awkward female host, and obviously, the dancing. As I watched, I fell into an alternate universe of beautiful, tan, athletic bodies; where usually, the contestants’ biggest worry was whether they could learn the dances in time to perform that week.
One year later, things have changed a bit. Last night, after the kids went to bed, I sat down to read and to write. I haven’t followed Dancing with the Stars this season or last, and surprisingly, I haven’t missed it.
Yesterday morning on the train I started reading a book that had been recommended to me by more than one person—Emily Rapp’s The Still Point of the Turning World.
As the author explains on page one, “This is a love story, which, like all great love stories, is ultimately a story of loss.” She goes on to explain that on January 10, 2011, she and her husband “received the worst possible news: that our son, Ronan, then nine months old, had Tay-Sachs disease, a rare, progressive and always fatal condition with no treatment and no cure.” I know. This was some heavy reading for a Monday morning, or for any time, really.
To be honest, when I bought the book, I never intended to read it. I had planned on skimming through it quickly to find a particular passage that I had read in a book review that my aunt had mailed to me. In this passage, the author describes how writing helped her through the tragedy of caring for her dying son. I wanted to find this passage to provide supporting evidence for the mission of Writing Saves Lives. On my most superficial level, I wanted to be able to say, “See! I told you so!” But I had absolutely no interest in reading any more of that book. Even the cover made me sad. Why would I ever want to read a book about my worst nightmare—about a parent watching her child die? Why would I ever want to inflict such pain onto myself? I didn’t.
But in the last few days, something changed. A young woman, Ashley, who I met back in November while I was hospitalized at the Brigham started to slip from a bad place into a worse one. Unfortunately, Ashley knows serious medical issues better than anyone. In her short life, she has battled cystic fibrosis, respiratory failure, a double lung transplant, two or even three subsequent strokes, multiple brain surgeries, and so much more in between. Now, Ashley is battling an infection in her heart. From the information I have read on the Facebook blog that her mother (Joy) loyally keeps (entitled, Air for Ashley), I can see that Ashley needs a miracle.
Yesterday morning, immediately after I parked my car in the commuter rail lot, I visited Ashley’s blog. I was stunned by the news that Ashley had to be intubated the night before as her ICU team fought to stabilize her. She awaits open heart surgery this week or next, but the surgery is incredibly risky. From what Joy has written, clearly they have no choice.
I had been carrying Emily Rapp’s book in my work bag for a few days, hoping I’d find the time to locate that particular passage. After I boarded the train with a lump in my throat over Ashley’s news, I decided that the book might actually hold something that I needed. I’m half way through it and I can already see that it holds just that. For instance, it holds this passage:
We all avoid death—we don’t want to see it, talk about it or think about it. But digging into the experience of loss is not only deeply profound but artistically at some points, absolutely electric. People want (and sometimes encourage) the griever to numb it or erase it or at the very least ignore it, and all a writer can think to do is to pull it closer and wrap her arms around it and dig in her fingernails and hang on. “Don’t write if you don’t feel up to it,” people cautioned me when I told them I had started to write about Ronan. But it didn’t matter if I felt “up” to it. It was my responsibility; it was just job. It ordered chaos, focused energy, provided a way of “bearing up” that no period of restfulness could possibly accomplish. In other words, rendering loss was a way of honoring life. I brought my whole self to the page and used my whole heart to consider what I was writing. I let go of my old fears about how my work would be received, how I was or would be received, and just created. There was nowhere to go inside Ronan’s diagnosis, but on the page my mind could move, and I was, for that brief period of time—an hour, four hours, three minutes, five seconds—free. …
When I sat writing with Ronan on the couch, there existed inside this helpless, frantic sadness exquisite moments of pristine happiness and an almost-perfect peace. I propped him against my chest and circled my arms around him to get to the keyboard on my laptop. I stared at him and tickled him and kissed him and wished that my words, anything, could save him. But no, writing would not save Ronan. But, I thought, it might save me.
I believe, with every cell in my battling body, that writing can saves lives. I believe that it saved mine. I believe that Joy’s words in Ashley’s blog will save others, and that they will save Ashley's courage and kindness -- her story -- for the world to see. I believe that every person has a story and that those stories are worth sharing. I believe that the truth is worth telling.
Last night, I crumbled and told Brian all about Ashley. He had no idea I had stayed in touch with this family, and he had no idea what to say in response to my hysterical tears. I still don’t really know what he was thinking. Probably something like, Why is she putting herself through this? Doesn’t she have enough to worry about? But he let me cry and that was what I needed. Then, I needed to write.
As I wrote, I realized how much my life has changed in a year. TV shows with beautiful dancers have been replaced by books about dying children. I check Facebook not for baby pictures or gossip but to find out what Ashley’s doctors have planned to save her. I draft work emails about complicated legal concepts that feel simple compared to the last email I wrote to my oncologist asking him a question about my cancer.
In the last year, I was shaken to my core (as a new friend much more eloquently put it). Then I looked around and realized that lots of other people have had that happen, too. Now, I often find myself drawn to those people. Even if their stories cause me pain.
I believe that there is absolutely a place for “escape” and when I have more time, I will likely return to watching Dancing with the Stars again. I may even go back to peeking into The Bachelor like I used to every now and then. But cancer has given me insight into an alternate universe where many people suffer great pain (yes, even bigger than not winning the Mirror Ball Trophy or not getting a rose). I believe that we’ll all be jolted into that universe at some point. A stroke, a bomber, a tornado, a terminal illness. The loss of someone we can’t live without. No matter how much we try to avoid it, we’ll all end up in a place from which we feel we can’t escape.
And when we’re there, we will all have to figure out how to cope; how to order our chaos and focus our energy. I write because when I write, a world that felt totally overwhelming starts to feel more manageable. I can see beauty, even if it's dark and sad. I can see light, even if just a glimmer. And I can find truth, even if I can’t find justice.