If this story doesn’t speak to you, you are lucky. If this story doesn’t speak to you yet, it will.
According to the Alzheimer’s Association, more than 6 million Americans are living with Alzheimer’s Disease, the most common form of dementia. A progressive brain disease, Alzheimer’s actually starts decades before the first signs appear. Symptoms are caused by the damaged or destroyed nerve cells or neurons in various regions of the brain involved in cognitive functions, such as memory, learning, and thinking. In later stages of the disease, as other neurons get damaged or destroyed, patients will be unable to control movement, such as walking or swallowing, or respond to the environment, requiring around-the-clock care. Alzheimer’s disease is fatal. In 2019, the mortality rate due to Alzheimer’s reached 37 deaths per 100,000 people.
“A horrible, horrible disease”––as a coworker said when she had to institutionalize her beloved dad after he had pushed his wife off the second floor staircase.
Fact sheets, reports, and statistical data all fail to inform the public about the actual nature of this disease. That the mild memory problems will eventually progress into a total eclipse. That your loved one might wander away one day, only to get lost in the familiar neighborhood. That they might do that while driving. That they will yell obscenities at the medical staff. That your loved one’s behavior will change and they may suddenly sucker-punch you in the face. That the trains are running on the wrong track.
“I wish I had known more about this dreadful condition”––as heard from those who eventually lost family members to Alzheimer’s after the incredibly steep descent of its full-blown horror ended. Death can come as a relief.
In her progression from moderate to advanced stage of her Alzheimer’s journey, the narrator’s mother slips in and out of confusion in Otsuka’s story. Although symptoms vary from patient to patient, the signs of serious damage are pronounced. She remembers. She doesn’t remember. The inventory expands into early childhood and being interned with her Japanese-American family in World War II, structuring the story so as to separate short-term and long-term memory.
“She remembers the number assigned to her family by the government right after the start of the war. 13611.”
At this stage, details from the distant past overwrite more recent events, and recalling current information or communication is becoming more and more difficult. Nobody is home and the lights are fading, too.
Narrative medicine, i.e., medicine practiced with narrative competence, is an initiative assisting clinical practice, aiming at building empathy in physicians, healthcare workers, and home care providers through developing affinities and understanding towards patients and their disease.
Trying to “translate” a literary text helps make sense of the story. Translation in this sense means our own interpretation of the narrative. Whatever the story tells us, it does through us reading and interpreting it, adding our thoughts and feelings, impressions and reflections, either by just contemplating on our own or discussing it in a group.
Narrative knowledge is what one uses to understand the meaning and significance of stories through cognitive, symbolic, and affective means.
The mother in the story remembers a Latin phrase, Diem perdidi. I have lost a day. A phrase in a foreign language, learned by rote as a child. “Я к вам пишу––чего же боле? Что я могу еще сказать?” No translation needed, insert your own if you have a foreign phrase that has stuck with you.
Think of the subtle nuances in how one can describe memory: she remembers versus “she hasn’t forgotten that…” or “she hasn’t forgotten to …” She doesn’t remember versus “she forgot that she had …” or “she forgot to …” Now think of the nuance in how different languages describe memory. Translation from one language to another might take the reader to a different realm, adding the intricacies of another lexicon to explore the depth and variety of how we are able to relate to a text.
“When you ask her your name, she doesn’t remember what it is. Ask your father. He’ll know.” ––Papa tudja, in my translation.
Either way, the text will bring about feelings, positive and negative, as well as our own memories and experiences. As such, it will serve as an opportunity to have meaningful conversations with others, which, in the long run, helps make sense of the world around us while enriching our own experience. Bibliotherapy at its best.
“The hallmark pathologies of Alzheimer’s disease are the accumulation of the protein fragment beta-amyloid (plaques) outside neurons in the brain and twisted strands of the protein tau (tangles) inside neurons”––2021 Alzheimer’s Disease Facts and Figures.
Until a cure is found for this cruel and insidious condition, there is a lot to think about. Alzheimer’s Disease is only one example of how disparities impact health and health care; see more in Race, Ethnicity and Alzheimer’s in America.
Until a cure is found, whether insurance companies are willing to cover the $4,000 to $5,000 brain scans or not, the questions remain the same. Do you know what your loved one would want in a situation like this? Do you realize that every little step will be your decision once they are unable to communicate their needs? Do you think you can be the decision maker?
Until a cure is found, one has to wonder: if there were a genetic indicator for developing Alzheimer’s later in life, would you want to know?
Reading Otsuka’s Diem perdidi triggers painful memories in some. It also reminds us all of our own vulnerabilities and mortality.
And another phrase in Latin: Memento mori
- Read the full text of Diem Perdidi, by Julie Otsuka
In: Living in the Land of Limbo, Edited by Carol Levine, 2014, p.11. (Rutgers-restricted)
Check out our guide on Julie Otsuka for resources from Rutgers Libraries and more