AMA Journal of Ethics^®

My mother, Midge, died in 2004, after about six years of suffering from Alzheimer disease. She was just 60 years old. Her diagnosis had been a complete shock; she was young and healthy and there was no family history of the disease.

As soon as I realized that something serious was wrong with Mom, I started writing about it in my journal, driven by a need to record the strange and scary changes that were happening to her. It wasn’t just that her memory was failing; everything was changing—her speech, the way she held herself, the way she moved through space, even her facial expressions. As our family travelled through the heartbreaking and bizarre world of Alzheimer disease, I continued to record as many details as I could.

Soon I knew that I wanted to do more than write in my journal; I wanted to publish my writing. Over the years of Mom’s illness, I experimented with telling the story through poetry, autobiographical fiction, and “lyrical nonfiction.” None of it felt right. Writing a straightforward nonfiction account felt closer to what I wanted to achieve.

After Mom died, I went through my journals. They contained not only written entries, but also small sketches of incidents that had happened, and the last journal included drawings I’d made of my mother the night before she died, recording what I knew would be my last glimpses of her. I realized I wanted to combine the text and images and write a graphic memoir, i.e., a comic book.

I’d published a few short comics, including one about the things that people said to my family when they found out that Mom was sick [1], but it’s fair to say that I really didn’t know what I was doing. For some reason that didn’t stop me. Over the next four years I worked on the book that eventually became Tangles: A story about Alzheimer’s, my mother, and me, published in the US in 2012.

Before I talk specifically about Tangles, I want to mention just a few of the amazing comics that inspired me—all of them about serious issues, many about illness and death (my favorite kind!). The book that introduced many people to the idea that comics can be weighty and complex is Maus by Art Spiegelman, which is about Spiegelman’s father’s experience during the Holocaust and their father-son relationship. Maus won a Pulitzer in 1992 and really is required reading for anyone who wants to understand the power of comics. Cancer Made Me a Shallower Person by Miriam Engleberg, Mom’s Cancer by Brian Fies, and Epileptic by David B are all excellent examples of “graphic medicine,” the recently coined term for comics about medical issues [2]. Numerous works by Lynda Barry and Aline Kominsky Crumb showed me the power of simple expressive drawings combined with frank, gritty prose.

I read as many comics as I could, as well as books about comics and how they worked, including Scott McCloud’s Understanding Comics and Will Eisner’s Comics and Sequential Art. I took a lot of writing classes, but mostly figured out the drawing part on my own. I ended up with a simple style of pen and ink drawing that I often refer to as “scruffy.”

In his recent book MetaMaus, which is exactly that, Art Spiegelman discusses his decision to use the comics form. He argues that comics lend themselves to direct communication and clarity: “For me, it’s an art of compression that breaks narrative events down to their most necessary moments” [3].

I certainly found this to be true when I was creating Tangles. I lived across the country from my mother—she was in Fredericton, New Brunswick, and I was in Vancouver—so I visited a few times a year. I experienced her deterioration in short, intense encounters, which were full of pain, along with many moments of unexpected joy and tenderness. Comics, with their short bits of text and economical, gestural drawing style, felt completely appropriate to convey the force of these short but packed-full encounters.

As I read more and more comics, I developed a preference for very simple, sketchy drawings; I found them much more powerful than detailed, “realistic” artwork. This was borne out by the theory that I read, particularly Scott McCloud’s discussions of how comics readers identify more immediately with pared-down drawings, how they can more easily imagine themselves as the main characters and insert themselves into the stories. This ability to engage the reader is particularly valuable for comics about difficult and painful experiences. When I look back at Tangles now, I wish that some of the drawings were more polished or skillful, but I wouldn’t make them any less sparse.

Using comics also allowed me to convey multiple layers of a single experience, like conflicting emotions or contrasts between thoughts and speech. With both text and image at my disposal, I could use one to enhance the other or create juxtapositions that were jarring or darkly humorous. For example, the words in a character’s speech balloon might be completely different from those in her thought balloon. Or the caption for a drawing of a tragic situation might inject some edgy humor. Our family was often laughing and crying at the same time, and I think this is a common experience when loved ones are seriously ill or dying.

The excerpt shown in Figure 1 is about the first time I had to deal with intimate personal care for my mother. There were many ideas that I wanted to convey. First of all, just the sheer horror of finding my mother sitting in the tub, completely oblivious to the feces in the bathwater. Then the mechanics of the situation—what I had to do to get my mother clean; this sort of figuring out of logistics is a big part of why it’s so exhausting to care for someone with this disease. I also wanted to show some of what this meant for our relationship, what it meant for me as her daughter to do this kind of caretaking. And finally, I wanted to convey that this incident was a key part of my realization that I needed to grow up, and fast, if I wanted to be a real help to my parents.

In comics, words and pictures combine to form something new, a condensed and potent medium that has the ability to convey complicated stories and intense emotion. This is what I love about comics and what I tried to achieve with Tangles.