Merino, Jose G. MD
“Once we lived in a house made of words,” writes Diane Ackerman about her marriage with the writer Paul West. “Just as some couples mainly relate through their children, we had related through our rowdy family of words.”
Ackerman and West are gifted writers, and a shared love of language and wordplay has sustained their marriage for over 40 years. Language is central to their life together — they invent words for fun, create ‘an intimate bestiary’ with codes for shared experiences and pet names, flirting puns, poems, ad-lib songs, and develop a personal dialect of love. When West has a stroke that leaves him globally aphasic, one of the foundations of their marriage is broken.
In her beautiful memoir, One Hundred Names For Love, Ackerman explores how the stroke changes them, as individuals and as a couple. She addresses important questions: What happens when illness attacks the core of who we are? How does illness affect a couple, particularly when it deprives them of their favorite ways of being together? What is the role of creativity and imagination in the recovery from a devastating neurological injury?
When West has his stroke, Ackerman, a well-published author, is on tour, promoting her book An Alchemy of the Mind, an exploration of how the brain forges the mind. A naturalist, novelist, essayist and poet, she has researched and written about the brain and the ravages of acute neurological illnesses. In One Hundred Names for Love, she writes about “the full cartography of loss” left on the wake of the stroke: loss of identity, independence, family life, and couplehood. “What had vanished.... Our history?” she asks in a moment of despair.
Early in this memoir, Ackerman describes her anguish in seeing her husband in the hospital in the first weeks after his stroke. She poetically evokes the daily rhythm of the hospital, with its “cacophony of caregivers,” and the loneliness and isolation of patients in the hospital and their families who go home alone at night. Her overwhelming sadness is palpable as she observes her wordsmith — the author of 50 books — reduced to repeating a single syllable (mem, mem, mem…), unable to express his frustration at being treated as a child. She fears her loss of independence, of “[vanishing] into his illness,” of becoming a role (caregiver) instead of a relationship (wife, friend, companion), and her guilt for harboring such fears. She grieves for him, for her, and for their marriage.
Ackerman knows the importance of a stimulating environment to promote recovery after brain injury. She hires a talkative and intelligent young nurse to help care for her husband when he comes home, and encourages non-stop conversation. In speech therapy, he does fill-in-the-blank exercises, links words with pictures, and answers right-or-wrong questions. He is bored and frustrated.
Over time he has five therapists (who all use the same methods) but West makes little progress. Things change when Ackerman notices that despite his difficulty with everyday words, he uses uncommon words correctly — tesseract, plebian, postillion, cherubim, tardigrade — language his therapists sometimes deem nonsensical. Ackerman hypothesizes that his language will improve if his exercises are “tailored to his lifelong strengths, words and creativity, exercises with a little fun, little flair, and not condescending, a sort of madcap MadLibs that provided some much-needed humor.” Instead of asking if water can freeze she asks why smoke is coming out of a man's ears; “sitting in tub full dry ice,” West answers.
Encouraged to use language in creative ways, West starts talking more and becomes, as Ackerman tenderly describes him, the “king of malaprops and a geyser of neologisms.” Wordplay returns to their lives, and West is once again able to “find ways to describe the combinative zest for life.”
West's creative urge survives despite his difficulty with words, and he enthusiastically agrees when Ackerman suggests he write “the first aphasic novel, or a memoir.” Because writing is difficult, he dictates it, and Liz, his nurse and Ackerman write exactly what he says. The process is slow, but it constitutes excellent speech therapy. Published in 2008, his book The Shadow Factory (Lumen Books), describes his experience of the first months living with aphasia.
After his stroke, West cannot recall the secret playful pet names he and Ackerman had given each other — “romantic, frisky hobgoblins” — and this deeply saddens him. But as his language improves, he starts inventing a new sobriquet every day. Creating these names Paul finds that “aphasia's merry-go-round of words could be welcomed in a colorful and creative way. Instead of trying to block wrong words from popping out, he made space for them.” The ritual of creating and enjoying these names for love reaffirms this couple's common bond through language: “Little Moonskipper of the Tumbleweed Factory,” “Romantic Little Dew-Sipper,” “Spy Elf of the Morning Hallelujahs,” “My Little Spice Owl,” “The Epistle of Paul to the Rumanian Songthrushers,” “Goddess of Abstract Conversation.”
Ackerman's vivid metaphors recreate the wonder of things that after years of practicing medicine may appear mundane. Can there be a better description of arrhythmia than the “the jazz I heard in his chest when we curled up in bed?” Or a more beautiful picture of the middle cerebral artery than “the river of blood that supplies nourishment to a vast terrain of hills and ridges?” When looking at brain scans, I will always think of “the CAT scan's chiaroscuro world,” depicting “small graveyards of cells.” And from now on, I will remember that the left hemisphere is “the chatterbox, the storyteller, the fictioneer, the conman, the liar” and the right, the “juggler, puzzle-solver, and artist.”
This memoir poignantly explores the process of recovery from a devastating neurological injury and is a testament to creativity in the face of the loss of language. It reminds us of important therapeutic principles: always treat a patient with dignity and without condescension, be mindful of the effect of their illness on their partner and family, be realistic about possible outcomes but do not extinguish hope, and be flexible when prescribing treatments. But more than a memoir of illness, this book is a moving intimate portrayal of a couple that after forty years of marriage grows closer in the face of adversity, nourished by a shared love of language. I will be thinking about it for years to come.
Dr. Merino is a neurologist with Johns Hopkins Community Physicians and director of the Suburban Hospital Stroke Center in Bethesda, MD.