Marissa Moss shares the journey through ALS.
Instead of brightly colored images, the pictures are rendered in black, white, and shades of gray. The art depicts emotional family gatherings and lonely hospital scenes as well as the frightened, angry, terrified, or trying-to-look-normal faces of the couple and their three sons, then ages 6, 10, and 13. Most poignant are fragile self-portraits: Moss appears tiny on a sofa in front of an enormous glass window—clutching a blanket as if to shield herself from a “thud” that has jolted her from sleep and is the sound of her husband collapsing to the floor for the last time. Most surprising and uplifting are the final scenes: Moss, arms in a halo above her head, joining women in Morocco upon the arrival of a newborn in their family to dance and re-enter “the world of the living.”
Remarkably and ultimately, Last Things is equally hopeful and cautionary. It is an affirmation that life and especially death are messy, but in family connections there is strength. The warning to savor last things comes in stark form: “Harvey and I share a lot of lasts, and we don’t even know it,” Moss wrote.
“Funny, I never envisioned something other than black and white,” Moss said in an interview about her choice. “I even turned our family photos that were in color into black and white. It was a gut reaction. It wasn’t a colorful book.”
In the beginning, it wasn’t even a book with pictures. Moss started writing it in prose form 15 years ago. It felt claustrophobic, she said. The graphic novel boom caused her to realize she was fighting format—and her instincts. “The publishers who initially turned it down said it was too negative in prose,” Moss said.
Even so, the decision involved selectivity. The bureaucracy of the medical health system was monumental, but talking heads and phone conversations make for boring art. Moss pared those scenes while aiming for frank exposition and to dispel myth-making. “Going through medical trauma, you’re supposed to be a saint. I now know the feelings and thoughts I had were normal. You’re not having an amazing epiphany: Caregiving is hard work. There’s nothing romantic about it. That story needs to be told.”
Most difficult to draw were the moments she still wrestles with: when Stahl had to have a tracheotomy and was most vulnerable; a father-son experience that “blew up in our faces” when Stahl’s irascible, surly, ALS-related attitude surfaced and her youngest boy was traumatized. “And leaving Elias alone with Harvey on the ventilator and then my yelling at him after Harvey almost died—that part was hardest to write, because I still feel guilty.”
Her sons, now 21, 25, and 27, read the book before it was published—she asked for their approval before proceeding—and are supportive. “The hardest part for them was to read the notes their father had written, to see his pain. To them at the time, he was just an angry man. ALS affects executive functioning. We didn’t know that at the time.” The book hasn’t made their relationships closer, because Harvey’s death already did. “Once you lose one parent, you can’t afford to lose another,” Moss said. “His death meant I felt more responsible and the burden of having to be alive for them. The death made our family connections very strong. I didn’t want death to make us fall apart. I wanted us to come out of it whole.”
Moss said writing the book is expiation, self-atonement. “I was forgiving myself. How are you to not make mistakes? You’re in crisis mode, doing the best you can. I’m still not entirely off the hook. By reliving it with distance, I see that there was no way to do this without causing pain to people.”
The response from readers is clear. In emails from people whose loved ones suffer or have succumbed to ALS, they say that they feel heard, seen, validated. Friends of Stahl are deeply saddened because they never knew the degree of suffering the family endured. Moss hopes the book crosses generations because “there are kids in the book and kids experience deaths of people close to them too.” For children whose loved ones have a “good death,” it’s still important for kids to know it’s OK to feel relief (if the person was in pain) and to not feel guilty or alone. For adults, she said she hopes Last Things will diminish social stigma that isolates people with critical illness or makes people treat a widow like a pariah. “It’s as if you did something wrong; you made a bargain that didn’t work and your husband died.” Or, people offer Moss’ two least-favorite comments: “You’re going to be OK,” painting unreality on the experience, or, “God does this for a reason.” Instead, Moss suggested, “How are you doing today?” Or, “What can I do for you?” It doesn’t have to big; it can just be going to the store. “A jug of milk means a lot,” she said.
Last Things: A Graphic Memoir of Loss and Love by Marissa Moss (Conari Press, May 2017, 184 pp., $18.95).
Published online on July 13, 2017 at 8:00 AM