Marissa Moss

Berkeley author Marissa Moss has published more than 75 books, but none was harder to write than her newest, Last Things: a Memoir of Loss and Love.

Moss is best known for her illustrated series, Amelia’s Notebook, which tracks the inner thoughts of a young girl from fifth grade to middle school. The books have been incredibly popular and turned Moss into a literary superstar for the younger set.

Last Things could not be more different than Amelia’s Notebook or any of the other children’s books Moss has written and illustrated. It deals with the last seven months of her husband Harvey Stahl’s life and the impact his ALS had on Moss and her three young sons. It is Moss’ first book for adults.

The story ­– and the book – are devastating. It opens in 2001 when the family is in Rome on a yearlong sabbatical. Harvey, a professor of medieval art and the former chair of art history at UC Berkeley, has been researching and writing a book about King Louis IX’s personal prayer book for 16 years, as long as he and Moss have been married.

When the family returns to Berkeley that fall, Harvey starts to see a series of specialists to find out why he is tired all the time. The last “perfect” moment they have together as a family is the October bar mitzvah of Simon, the oldest son. Then in November, the terrible diagnosis comes: Harvey has ALS. Specifically, he has Bulbar ALS.

ALS, also known as Lou Gehrig’s disease after the talented and popular Yankee baseball player who contracted it, is a fatal disease that atrophies the body’s muscles. At the end stage of the illness, amyotrophic lateral sclerosis sufferers have no control over their bodies. They are in wheelchairs, completely immobile. They cannot speak but must communicate by blinking. When the diaphragm muscles finally weaken, people with ALS can no longer breathe.

Bulbar ALS has a different, but more deadly progression. It weakens the tongue and throat muscles first but leaves the legs and arms alone. Those with Bulbar ALS usually die within two years because their lungs give out.

What makes Harvey and Moss’s story so tragic, besides the obvious sadness of a fatal disease, is that the Bulbar ALS almost instantly changed Harvey from the loving and supportive man he had been for 60 years into a cold, distant and judgmental person. Fifteen years after his death, Moss and Harvey’s doctors now understand that Bulbar ALS strips some people of their empathy and the distancing is a major symptom of the disease. But in 2001, few knew this.

So when Harvey was diagnosed, Moss at first thought that they would confront and deal with the disease together. Instead, he shut Moss and the boys out, snapped and criticized constantly, accused Moss of bad intentions, and stopped hugging and talking with love to his sons. He didn’t want to tell his sons, friends, family or the university that he was ill. All Harvey seemed to care about was finishing his book and teaching more classes. So Moss had to deal simultaneously with her husband’s dying and the end of a once-loving marriage.

“At first I thought it was stubborn denial and if I could shake him out of it we could reconnect,” said Moss. “I knew he would die. I thought there would be some kind of chance to come together as a couple to face his death with our powerful love. But it wasn’t like that at all.”

Sadly, Harvey remained aloof, refusing even to write goodbye letters to his sons, Simon, 13, Elias, 10, and Asa, 6, that they could read after he was gone. During the seven months of his illness, there were only a few moments when the “old” Harvey briefly returned. Moss draws those moments in Last Things, and they are poignant.

“It was like being hit by a truck; it was so fast,” Moss said about Harvey’s illness and death. “It was like living in a war zone.”

If the story of a fatal illness, one without the redemption of bringing people closer together before death, seems depressing, it is. And that may be why it took Moss 14 years to find a publisher for the book.

She started writing about Harvey and his illness two weeks after he died in June 2002 at the age of 61. Moss, then 42, had a friend who invited her to a writing class so she could work through her grief with words. Moss wrote down a detailed description of the progression of Harvey’s illness: his slurring words; when he got a tracheotomy; admitting he needed a handheld ventilator; the times he almost suffocated because gunk clogged his lungs; his bouts with pneumonia. She wrote about one of her major regrets: not acceding to Harvey’s request to light the Shabbat candles on one Friday. Moss was tired and furious at her husband because he had checked himself out of the hospital against doctors’ orders. She just didn’t do it. Harvey died that night and Moss has always felt guilty about her decision.

Moss, whose bestselling middle-grade books are all illustrated, first wrote Harvey’s story as a traditional memoir. She sent it out to numerous publishers, all of which said it was too depressing to publish. They were not willing to take a chance on the book even though Moss had sold more than five million copies of Amelia’s Notebook. Those rejections, Moss believes, reflect America’s denial of death, its unwillingness to confront disease and mortality.

“There’s heartbreak in these pages, but also profound love,” Moss writes in the preface to Last Things. “We all think we know how to lead good lives. What’s trickier is how to handle death, how to be with the dying and hold their pain and fear in our hearts. And then let them go.”

It was not until a few years ago that Moss decided to rewrite the manuscript, this time as a graphic book. And the decision seems to have made a significant difference. Somehow the drawings of Moss, her three sons and Harvey provide “relief” from the sad story and make it more bearable. The result is a poignant and moving book.

Moss’ “simple drawings reveal the pain and anguish her characters don’t know how to express in words, making the format a perfect choice for the story,” Marika McCoola, the New York Times bestselling author of Baba Yaga’s Assistant, wrote in a blurb.

“Moss uses simple line drawings with ink-washed grays for this poignant account…from diagrams of [her husband’s] breathing equipment to frank descriptions of patient denial and stigma,” according to a review in School Library Journal. “Perhaps the first graphic memoir about a spouse’s death, this personal human drama touches on experiences that everyone has sooner or later. An eye-opener for adults and teens concerned about health care.”

Conari Press acquired the book, which was published May 1. And in a strange way, the book is timely. Sheryl Sandberg, the COO of Facebook, has just come out with Option B, a book about the untimely death of her 47-year-old husband, Dave Goldberg, the CEO of Survey Monkey. So the airwaves, internet, and newspapers are filled with articles about a young woman who loses her husband prematurely and how she helps her children find the resilience they need to cope.

Moss’s sons are now 27, 25 and 21. Their father’s death has been a defining part of their lives, said Moss. All of them have been private about their father’s disease because they have not wanted people to regard them with pity, said Moss. She did show them the graphic book before it was published. They all gave their approval to make the family story more public.

Moss has forged a new life for herself after Harvey’s death. In addition to writing many children’s books, she started Creston Books, a children’s book publisher in Berkeley. It was a small press, Triangle Books, that took a chance on publishing Amelia’s Notebook, thereby helping Moss achieve critical approval and widespread adulation from children. Triangle Books, like many other small presses, closed down. Moss was concerned that as three major publishers began to dominate children’s publishing, small quirky voices, like the ones she offers, would be silenced. So she started Creston. The press, which Moss runs out of her Berkeley Hills home, puts out about eight picture books a year, many from debut writers. There have been some notable successes, including In a Village by the Sea, written by Muon Van and illustrated by April Chu. It won numerous awards, including the Northern California Book Award.

Moss has since remarried, but that, perhaps, is another book.

Moss will hold the book launch for Last Things on May 6, at 5 p.m, at Laurel Bookstore, 1423 Broadway, Oakland. She will also appear May 7, at 4 p.m. at Book Passage, 51 Tamal Vista Blvd, Corte Madera, and on May 11 at 7 p.m. at Books Inc, Opera Plaza, San Francisco. Visit Moss’ Facebook Page for details.

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