Book review: A story of life, care and dying
There are multiple angles from which one could approach Leslie Swartz’s latest life writing publication, How I Lost My Mother: A Story of Life, Care and Dying.
The narrative affords insight into mother-son relationships, the dying body, or the aspect of care, just to mention a few. The subject of this book is the author’s mother, Elsie Swartz (nee Cohen), “born in Johannesburg to immigrant Jewish parents” (Swartz 1). As the narrator of the story, Leslie Swartz plays the role of the “proximate other”, telling a narrative “in which the family members are rendered as either equal in importance or more important than the reporting self”.
Axel Honneth observes that the family unit is central for the individual’s recognition, through the way that people get treated within the family. Swartz plays this function, engaging in an act of recognition for his mother, even after she has passed on.
At the same time, while reading the text, it becomes all too obvious that the story is not about her alone. It is also about the author, his sister, his wife, his grandmother, the doctors, the caregivers, and various other people who touched his mother’s life in one way or another, positively or otherwise.
The book has three sections, but it is truly the two first sections, “Finding” and “Losing”, that are bulky, and that contain the main narrative.
The first part details the mother’s life prior to the diagnosis of her ailment, whereas the second part focuses on the cancer diagnosis, illness and caregiving experiences. The final section, “Afterwords”, is, unsurprisingly, focused on the author’s thoughts after his mother’s passing.
One of the main points in defence of the medical humanities, or other disciplines that blend the literary with concerns about physical or mental health, is that a narrative offers those in the medical profession an alternative perspective towards a patient.
Narratives offer the opportunity for health professionals to recapture a humanity that is often assumed to be lost through the labour of study, countless consultations, and surgeries that have inured them to the human dimension of the patient. This may be an oversimplification, but it is also an impression formed by most patients when they consult a doctor who seems readily armed with a prescription, instead of taking time to listen to the patient.
Reading about the visits that Elsie makes to various doctors, this thought comes to mind. The author does not really dwell on his mother’s health problems until the second half (“Losing”) of the book, but when he does, he presents material that reminds us of why the medical humanities matter. One of the chapters in the book, “Avoiding Surgery”, for example, details the misdiagnoses that the family experiences, and the author’s commentary on the bedside manner of different doctors that the family encounters
In the midst of inexplicable pain, Elsie consults several doctors, one of whom is “gruff and distant”, taking her for “a neurotic old lady”, and another who “spoke to her as though she was five years old and not too bright with it”
When Swartz writes of his mother being “admitted to hospital […] where she was fully examined, X-rayed, prodded and poked, and sampled for blood to within an inch of her life”, it is clear what he feels about how the patient should be treated
Caregiving is one of the author’s central concerns, as he tells his mother’s story. Swartz writes about how the caregiver is also a human, one who gets frustrated, tired, and angry at the patient. As the author writes, “[p]art of the problem of care [is not] the care itself, but the wholesale failure of imagination about what care is”. There is really no way for one to prepare for caring for an ailing, dying relation, and it is almost impossible to imagine what those who offer care go through.
One of the main objectives of How I Lost My Mother, the author states, is “to talk about the problems we have in our invisibilisation of, disavowal of, the realities of care”. This is particularly true of paid caregivers. Swartz holds that “the complexity of intimacy and exploitation, the layers of dependency, the gentleness and the violence that are intertwined with the employment of paid carers have not been thought about enough”.
However, what must be noted is that this is not just a book about caregiving, but it contains many intertextual elements. This is not just an author who – to use a phrase he employs in the text – has a lot of skin in the game [of caregiving], but also one who is careful as he practices the craft of writing.
In fact, literature – both its consumption and production – is central to the author, and is tied to the life (and death) of his mother. With a mixture of recall from memory and imagination, the author creates links between his mother and writers such as Nadine Gordimer and Anne Frank, creating various intertextual moments that also include the excavation of his mother’s published short story from the Johannesburg Public Library. It is one of the more memorable intertextual moments in the narrative, and contributes to the aspect of recognition evoked earlier.
For a long time after I finished reading the book, I kept asking myself if my enjoyment had been influenced by the fact that I closely read his previous life writing publication, Able-Bodied: Scenes from a Curious Life, a memoir about his father. I would readily answer in the affirmative, as I went into the newer text seeking to fill some gaps that had been created by the previous book. However, How I Lost My Mother is also a narrative that is complete in its own right, and will be appreciated by readers who may not have encountered the first book. -https://blogs.bmj.com/medical-humanities.