In the Shadow of Memory

Right now, Rebecca Skloot is much in the news for her book The Immortal Life of Henrietta Lacks, which considers the legacy of an African-American woman whose cancerous cells, known to all of us as HeLa, revolutionized scientific research.  Skloot’s book is an important contribution to medical history and more importantly, medical ethics.  The HeLa cells were harvested at Johns Hopkins without Henrietta Lacks’ consent. Although the cells are still proliferating and being appropriated for research in the present day, her family has not benefited financially (or even been acknowledged) for her contribution.

I enjoyed Rebecca Skloot’s book and do recommend it to general and academic audiences.  Today, however, I want to promote the work of her father, Floyd Skloot.  A poet by trade, Skloot has written a number of books, but the one I think will be most relevant to those interested in the brain and/or language is In the Shadow of Memory.  This is Skloot’s account of his experience as a person with organic brain damage.   In 1988, Skloot’s life changed overnight when he contracted a virus (while on a business trip) that riddled his brain and left him with severe cognitive and physical disabilities.

In his poignant yet unsentimental narrative, Skloot describes what it is like to be a master of the metaphor on one day and a person who struggles to communicate effectively the next.  In this sense, it is a story of profound loss. However, it is also a story about the remaking of one’s life on new terms.   Skloot’s revision (if that is the right word) of dementia is a case in point.  If to be demented is to be literally out of one’s mind, Skloot describes the broadening experience of being unleashed from the controlling and limiting functions of the brain and more vulnerable to the type of emotional and sensory experiences that Jill Bolte Taylor has described –albeit in a different context and from a very different point of view.  For example, Skloot’s description of the confusion he feels in eating spicy foods, his heightened sensitivity to the air on his skin, and the overwhelming emotion he feels at seeing a grapefruit “neatly-sectioned” by his wife and waiting for him in the fridge draw immediate attention to the sorts of experiences that are so often inaccessible to the healthy brain. As he clarifies, the intensity of his experiences is not compensatory. Nor does his account offer an example of how to “mak[e] lemonade out of life’s lemons.”  Rather, as Skloot  explains, in the aftermath of his illness he must learn to “savor the shock, taste, texture and aftereffects of a mouthful of unadulterated citrus.”

Skloot also offers an insightful commentary on the way that disease reshapes our relationships to our friends, family, employers, colleagues and even the state.   His searing commentary on the public conception of the “disabilities racket” which he describes in the context of his attempts to re-confirm his status as disabled with the Social Security Administration is something that I will revisit at a later date.   (This chapter from the larger book was printed in short story form a few years ago and was awarded a Pushcart prize.)

This is definitely one for the brain/language archive as well as the literature-neuroscience archive.