The Beginning of Everything: The Year I Lost My Mind and Found Myself, the 2019 memoir by Andrea J. Buchanan, is a story of pain—intense, debilitating pain—and a slow crawl toward wellness. It is also a story of isolation, uncertainty, and finding beauty in the struggle of life.
In 2015, Buchanan suffered a spontaneous spinal cerebrospinal fluid (CSF) leak, meaning a hole tore in the dura mater—the tough outer membrane that encases the brain and spine—allowing the fluid that bathes and cushions the brain and spinal cord to leak out, resulting in a constant, excruciating headache that was somewhat relieved only by lying horizontal. Over the next nine months she struggled to get a diagnosis and tried various treatments, some of which even the doctors referred to as “voodoo.” Meanwhile, through her pain and appointments, she continued taking care of her two teenage daughters and went through a divorce.
I read The Beginning of Everything during the early weeks of the spread of COVID-19 in the United States, and it was interesting to note the parallels between the period of collective isolation and uncertainty that our nation was embarking on and the months Buchanan spent alone, lying flat on her bed, unsure what was wrong with her and unsure how, or if, she would get better. I couldn’t help but imagine the possibilities complications like Buchanan’s would add to the stress of the moment—what if you were under a stay-home order and going through a difficult divorce? What if you had a severe illness that forced you to spend time in doctors’ offices and hospitals when these places might pose a danger of infection? What if you were in so much pain you couldn’t worry about anything else?
Buchanan is consumed with what ifs throughout her illness. What if she hadn’t gone out to brunch that morning, with a slight fever, when she paused in the middle of a crosswalk and coughed so hard that something deep within her tore? “I try to trace back the origins of this leak,” she writes, “trying to find some kind of narrative, some series of reasons or theories or explanations to make it easier to accept.…” She concludes that this urge to explain, to understand, cannot change the outcome of events that are in the past: “Even if I could find my way back to the beginning of everything, find a way to explain it and make it all fit, organized and satisfying to the primal follow-through part of my brain that aches for completion, for order, it wouldn’t change where I am now, or make it better, or undo it, or go back in time to prevent this unraveling.”
Still Buchanan uses this storytelling impulse to try to make sense of her pain. She revisits the origin story of her illness over and over again, imagining alternate storylines in which she doesn’t tear a hole in her spinal covering. “I don’t know which story is more comforting,” she writes, “the story of a day when I imagined nothing bad or remarkable happening, or the story of a day when the bad thing that happened was, in the scheme of things, unremarkable.”
As Buchanan waits through the pain for a diagnosis, for treatments, and for recovery, she has nothing but time, yet there’s little she can do with that time. The few vertical minutes she has each day she expends in traveling to appointments or getting food on the table for her daughters. “What I didn’t get was the impotence,” she writes of this time. “The way time makes you a prisoner. The way you must lie there knowing that mail is being delivered, that dinner needs to be made, that appointments need to be kept, and you cannot get it or make it or keep them. The way time heals you in real time, and you can’t make it go faster.”
As she begins treatments, Buchanan finds hope in small, incremental improvements. She counts its progress when she can quantify headache hours in a day and number of headaches, rather than one long continuous headache: “I note it, tracking each day on an app on my phone, so that eventually I can see that what feels like stasis is in fact an evolution, my pain waxing and waning, ebbing and flowing, my fast and slow nerve fibers recalibrating themselves, until eventually, one day, it might even be gone.” At the same time, the progress does not move as quickly, or as directly as she might have liked: “If the defining feature of my nine months in bed with a spinal CSF leak was isolation and existential doubt, the focus of my nearly six months of recovery so far has been the strangeness of moving between the realms of the sick and the well. It’s not a linear progression.” I imagine that, months from now, we can expect this same halting progress and strange straddling of worlds as we make our way, collectively, from social distancing and sheltering in place back into a world where we can safely greet friends and strangers with smiles and handshakes.
Into the story of her CSF leak and recovery, Buchanan weaves other elements of her personal history—another instance of debilitating and inexplicable pain when she was in college, and the time her younger daughter was electrocuted (her exploration of the second incident was published in Literary Mama in November 2019 as The Accident), as well as the science of CSF leaks and their treatment. This science, from diagnosis to treatment, is clearly not well understood in the healthcare field. Buchanan had to travel to another state to find doctors with the right expertise to treat her case. This book can serve as both a source of information and a beacon of hope for others experiencing a CSF leak, but its interest and the lessons it contains extend far beyond an audience of CSF sufferers; Buchanan’s wisdom is of value to us all, regardless of what challenges we face.
Buchanan’s prose style is careful and deliberate, and, although The Beginning of Everything carries the weight of the scientific information and her pain, the writing is lightened by the very personal nature of her narrative and through the use of figurative language. For instance, in describing the role of cerebrospinal fluid, she compares it to an ocean: “All of us have a kind of primordial ocean in our heads, keeping our brains aloft on its current.” Like our understanding of the deep sea, she writes, “[the] history of cerebrospinal fluid has been centuries of murky guesswork, increasingly deeper dives, usually by solo divers, revealing glimpses of an alien landscape, the dark waters of a humanoid ocean floor patrolled by impossible creatures, the hulls of failed ships transformed into coral reefs, nature reclaiming its space.”
Her struggle to find help, and the tension between hope and despair, give Buchanan’s story its energy. A classical pianist by training, Buchanan writes of playing a Rachmaninoff piano piece in the early days of her CSF leak: “In a way, its beauty comes precisely from this struggle. This difficulty is the entire point of the piece, and to really play it, you can’t ignore that difficulty. You can’t make it smooth by glibly smoothing it over. Or, you can; but then the point is missed, then it’s just a melody that’s pretty and flows past you and then is gone. To really play it, to really understand it and make someone else understand it, you have to embrace the struggle of it.” Buchanan may be writing about playing a piano composition here, but her words apply just as well to writing a book or living a life.
To read more about Andrea J. Buchanan, click here.