When Breath Becomes Air

dr paulDr. Paul Kalanithi is a brilliant young neurosurgeon in the midst of his residency when he is faced with a terminal cancer diagnosis. When Breath Becomes Air is his memoir, his exploration and examination of what makes life worth living. And indeed, this harrowing yet exquisite account of his life and musings as he shuffles ever closer to his inevitable death is well worth reading.

Educated Americans love nothing more than a doctor who can write and Dr. Kalanithi is one of those rare souls who excelled both in the operating room and on the page. In the first part of his story, we learn about his upbringing and his genius – he has a master’s degree in English literature and one in philosophy and considered being a writer before opting to take the more difficult path of becoming a surgeon. In his own words, “The call to protect life – and not merely life but another’s identity; it is perhaps not too much to say another’s soul – was obvious in its sacredness.”

It was not a decision taken lightly and he throws himself into his training with eyes wide open. As he writes, “The cost of my dedication to succeed was high, and the ineluctable failures brought me nearly unbearable guilt. Those burdens are what make medicine holy and wholly impossible: in taking up another’s cross, one must sometimes get crushed by the weight.”

What is remarkable is that Dr. Kalanithi continues his residency while undergoing harrowing treatments for his cancer. The grueling training required to succeed in one of America’s most prestigious hospitals (Stanford) would be impossible for most high functioning, healthy individuals. Paul has unfathomable grit and tenacity and keeps inching towards his goal even as his body deteriorates and betrays him.

This book is not for the faint-hearted. Tears rolled down my cheeks at many moments, especially as he enters his final days at the tender age of 37, just months after his baby daughter is born.

Dr. Kalanithi passed away before finishing his manuscript (oh and he was also writing this book in addition to everything else) and the last part is pieced together by his wife, Lucy who is also a doctor. In the epilogue she writes, “Although these last few years have been wrenching and difficult – sometimes almost impossible – they have also been the most beautiful and profound of my life, requiring the daily act of holding life and death, joy and pain in balance and exploring new depths of gratitude and love.”

Indeed, one of the most heartfelt aspects of the book is how Dr. Kalanithi navigates the uncertainty of his predicament and how he must recontextualize his life and the way he must now improvise given so much uncertainty. As Janet Maslin writes of the book in the New York Times: “There is so much here that lingers, and not just about matters of life and death: One of the most poignant things about Dr. Kalanithi’s story is that he had postponed learning how to live while pursuing his career in neurosurgery. By the time he was ready to enjoy a life outside the operating room, what he needed to learn was how to die.”

The tragedy of this story is of a brilliant man who is unfairly and senselessly taken far too soon (although is there any other way?), leaving behind a grieving wife and eight month old daughter. The beauty of the story lies in Dr. Kalanithi’s ability to express in words his experience, to take charge of his own narrative even as he has so little control and power in the face of his own death. I, along with millions of others, am eternally grateful to have been able to bear witness to his life and death through his writing.

 

The Anti-Romantic Child

gilmanOver the past year I have read Priscilla Gilman’s memoir, The Anti-Romantic Child, twice. As a former English professor, lover of Romantic poetry and current writer, Gilman writes lyrical, mesmerizing prose. Her story, which is, in part, about her own childhood and upbringing, is mostly about her relationship with her first son Benji who is diagnosed with autism. It is told intimately and sincerely.  In the prelude to the book Gilman writes:

“This book began as a lump in the throat, as a homesickness for the magical world of my childhood and for the home life I was looking forward to with my child. It began with a sickness of love for a child I adored but did not understand, a love searing in its intensity, overwhelming in its sense of longing and vulnerability, a love I feared would never be reciprocated, and worst of all would never make an impact…at its heart, this book is a love story: a story of two very different people learning to accept and affect and make space for each other in mysterious and powerful ways.”

Gilman, exceptionally smart and beautiful, hails from the American East coast upper crust. She dated Mia Farrow’s son, attended Yale as a student and worked there as a professor. Her parents were well known among New York’s intelligentsia. While it could be easy to write her off as privileged and entitled, her openness about her wounds and disappointments means that the reader is always on her side. An idyllic, fairy tale childhood, for instance, is ripped away from her when her mother divorces her beloved father. “It became clear to me…that my father had had another life, another side, a secret life of affairs and indulgence in drugs and hard-core pornography even as he was playing the role of the good family man and daddy who watched Sesame Street with me and presided over my innocent imaginative world,” she writes.

Throughout the book, Gilman weaves a rich tapestry of her triumphs and failures. She puts her all into her academic studies, obtaining her doctorate and giving every ounce of herself to her research, writing, teaching and her pursuit of tenure. Until it dawns on her that academia is not for her. Gilman becomes increasingly dissatisfied and disillusioned – the cut-throat competition for the few jobs in her field, the direction of her field, the insecurity of academic life, the way all it impinges on and threatens her well-being and family life. Set amongst the perilousness and instability of her career is the birth of Benji. Not only does Gilman struggle with being a working mother, but it soon becomes apparent that her son has special-needs, adding another layer of complexity to her life.

Benji comes to be known as ‘brilliant but quirky’. Gilman and her husband struggle to support him and find themselves pushed to the limits in their never-ending quest to meet his needs. His unpredictable nature and inability to cope with new situations and in new settings takes its toll on the family. Despite access to the best doctors, psychologists, therapists and teachers, it is only after myriad visits to such specialists and exhaustive research that Benji is given a diagnosis of autism.

This is set against the chaos of the birth of Gilman’s second child, her increasingly strained and rocky marriage, the long illnesses and eventual death of her dear father and in-laws and a transition to a new career working with her mother as a literary agent. In a short space of time, they move house, cities and schools. Over time, and with unflagging commitment and persistence, Gilman is able to find the right care for her autistic son and care for her family as a single mother after she and her husband separate. She begins to think about their experience as a journey, one in which she doesn’t have a map but is dedicated to scoping out the territory as she goes, never giving up, always finding a way to be resilient and keep on moving forward. Gilman revels in the unexpected delight of her son’s intelligence and musical talent. She never sees him as a burden, but as a precious gift. Eventually, while not part of the book, Gilman soon remarries and becomes an advocate and spokesperson for autism awareness.

After both readings of this text, I was struck by the fact that while Gilman had access to what is probably the best care in the world for a special-needs child and the resources to access it, it took so much time, effort, energy, persistence and sacrifice on her and her family’s part to find the right combination of care that has allowed Benji to thrive. It is a sad reality that many special-needs children around the world do not have access to the same care and are therefore unable to achieve their potential.

Gilman concludes her story by writing that: “In parenting Benj, I have gotten more in touch with a profound kind of romanticism; I have been given access to a transcendent sense of mystery and awe and wonder…While initially Benj presented as the contradiction of romantic ideas of childhood – he defied and rebuffed every expectation I had – ultimately he has reaffirmed, in a deeper and truer way, my romantic ideals and given me ‘more than all the other gifts’ [to quote Wordsworth].”