Most adults are familiar with the topic of Alzheimer’s disease, but how many of us have had the opportunity to sit down with someone with Alzheimer’s and learn about their personal experience with the disease?
Wendy Mitchell set about changing the narrative around Alzheimer’s with her memoir, Somebody I Used to Know. At fifty-eight, she was diagnosed with Alzheimer’s disease. She was working full-time and mothering her two twenty-something daughters, and as soon as she got the diagnosis, she began documenting her experiences with the disease through a blog called “Which Me Am I Today?”
Her memoir is a summary of her experiences that starts with her diagnosis in July 2014. The book is written from two perspectives: First, Mitchell details her day-to-day life from a first-person perspective, then she juxtaposes her memories against a second-person narrative of her present experiences. The differing views provide an intricate and amplified perspective of what it’s like to live with Alzheimer’s.
Mitchell’s story slowly unfurls by describing the initial symptoms that appeared — tripping while running, losing words periodically. As things progressed and more tests are run, she is finally diagnosed with Alzheimer’s.
Mitchell’s true character is revealed when she begins volunteering and getting involved with Alzheimer’s support groups and research. Not only does this provide insight into who she is with or without Alzheimer’s, but also provides further insight into some of the gaping holes in research, support and care for Alzheimer’s patients.
One of the most helpful points in Mitchell’s memoir is her description of Alzheimer’s. She asks readers to visualize an individual’s memories as books on bookshelves. The books are in a particular order on each shelf, and each shelf is in order with the rest of the shelves, similar to what you would see in a library.
Now imagine that Alzheimer’s is like an earthquake that causes all of the bookshelves to shake. Once the shaking is done, the books have fallen onto other shelves, have mixed their order, or fallen off the shelves completely. When we consider this description, perhaps it is easier to understand why a patient’s ability to remember and function vary wildly from one day to the next.
For those who have little exposure to patients with Alzheimer’s, Mitchell’s memoir provides a wealth of education. For instance, Mitchell describes how her new home became a frightening environment where closed doors suddenly held perilous mysteries behind them. To combat this fear, Mitchell removed doors that were not necessary or labeled them so she knew what was behind them. I was also surprised by how her hearing became more sensitive. The noise of the world outside her home became overwhelming and painful. But Mitchell thought creatively about the situation and purchased bright pink earplugs that allowed her to hear but blunted the noise to a survivable degree.
Mitchell’s memoir was unabashedly honest about her struggles but also humbly descriptive of unending creativity to solve or mitigate some of the issues caused by her condition. In almost every circumstance where her disease caused a new, unexpected issue, Mitchell would quickly develop a new approach to handle the situation.
In one instance, she was preparing to email a friend when she realized she could not remember how to type words. The letters on the keyboard suddenly lost meaning, but she was still able to read her friend’s email. Mitchell responded to her friend’s email with random letters. After some back and forth, her friend started coaching her through email to copy the letters she was seeing and practice typing until her brain recognized the letters and remembered how to type.
The one thing that struck me the most was the overwhelming emotional burden Alzheimer’s seemed to bring. It was not just the grief of losing a life she knew, but also the guilt she felt about becoming a burden to anyone. With adult daughters who were only just starting their independent lives, Mitchell was keenly aware of the burden she could become. She described several interactions she witnessed between patients and their caregivers and mentioned more than once the guilt that was visibly apparent on the patient’s face.
Somebody I Used to Know is an in-depth memoir that draws a reader in quickly. Wendy Mitchell is a natural storyteller with integrity and vulnerability, and her description of her experience is more than thorough; it is poignant and touching.
Somebody I Used to Know
Ballantine Books, January 2018
Paperback, 272 pages