Home Is Burning
by Dan Marshall
Dan Marshall's life was pretty heavy on privilege. A self-described spoiled white kid with money, he grew up in Salt Lake City and then graduated from UC Berkeley, and was busy enjoying his first real job in Los Angeles and his first real girlfriend, Abby. His family--mom, dad and four siblings--wasn't perfect, but they were happy, loving and shared a strong if quirky sense of humor, based on fart jokes and four-letter words. His mother had had "terminal" cancer well managed for nearly 15 years. Then came the phone call, while Dan was on vacation with Abby, announcing that his capable, marathon-running father had been diagnosed with something called ALS.
ALS stands for amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's disease. It's a terminal neurodegenerative disease that kills off motor neurons, eventually depriving the person affected of the ability to move his own limbs, eat, speak, and breathe. Dan was slow to accept the gravity of the diagnosis, but under pressure from the family, after several months, he takes a leave of absence from his job to move home at age 25 to help out around the house. Home Is Burning is his memoir of caring for two terminally ill parents at once while dealing with a houseful of rowdy siblings with problems of their own. His story is unavoidably terribly sad, but peppered with sex, drugs both prescribed and recreational, copious foul language, lots of alcohol, and deep and abiding love, the Marshall family saga is surprisingly sweet and funny as well.
Although Dan describes them as spoiled and rich, the Marshalls have had their fair share of misfortunes, from mother Debi's cancer diagnosis and years of chemotherapy treatments to cerebral palsy and Asperger's syndrome among the children. The eldest sibling, Tiffany, who took over some parenting duties as a teenager when Debi was sick, had become an overachiever apparently teetering at the edge of a nervous breakdown. Greg was a successful college student in Chicago, enjoying his freedom after finally coming out of the closet. Still in high school were Chelsea, a socially awkward ballerina and serious student, and Michelle, a budding alcoholic in a disturbing relationship with her soccer coach. Dan was the second child, and the last to move back to Salt Lake City for their father Bob's remaining time, which would more likely be measured in months than years.
Dan lingered in the denial stage of the grief process. With the whole family, he'd watched Bob run his last marathon in Boston, in a time nearly twice that which he'd run to qualify. But when Dan moves home, he is dismayed to see how much his father has already deteriorated. With Tiffany living nearby but on her own, "the little girls" still in high school, and Debi inconveniently faced with her toughest round of chemo treatments yet, the bulk of Bob's caregiving duties falls to Dan and Greg. Together they help him bathe and use the bathroom as he loses the use of his arms. They feed him through his gastrointestinal tube, and take him for walks in a wheelchair as his legs lose their strength. They hook him up periodically to his BiPAP (bilevel positive airway pressure) machine, which helps push air through his lungs. Bob chooses to delay his tracheotomy surgery--which would attach him to a respirator for the rest of his days, and quite possibly end his ability to speak--to attend his own mother's funeral; but the ill-advised delay ends with a rush to the hospital when his breathing fails, and the procedure takes place under emergency conditions. Happily, Bob retains his speech.
For all Dan and Greg's love and good intentions, their caregiving is sometimes alarmingly poor: Bob is dropped on the floor, his respirator tubes cracked and broken. He might be considered lucky to survive his family's care. The household begins to fall apart: Michelle passes out in her own vomit with increasing frequency as the cats pee all over their three-story home, which has been pulled apart by construction to install an elevator and widen doorways. Dan begins drinking more heavily; Abby breaks up with him; Greg takes a full-time job, putting more pressure on Dan; Debi's behavior grows ever more erratic, with the mental effects of her chemotherapy, her distress at losing her husband, and a new addiction to pain pills. Dan's outlook and storytelling throughout these mounting stressors is singular. He is remarkably candid about his frustrations and resentments: he loves his father enormously, calling him his buddy, his pal, his road map through life, and describing the effortless quality time shared and advice given--but he is angry to have his own social freedoms curtailed.
The tone of Dan's writing in this painful period, however, is astonishingly funny, loving, even lighthearted. As he moves back and forth between agony, grief and anger, he displays a fun-loving, off-color, morbid sense of humor and an almost apologetically sweet expression of love for his entire imperfect family and especially their hero, their rock, Bob. Dan interjects his narrative with fantasies in which Debi's hair grows back, Chelsea doesn't giggle inappropriately at looming death, Michelle doesn't marry her soccer coach, Bob stands up and takes himself to the toilet and goes for a good long run in the mountains.
Many stories have been written about terminal illnesses, degrading deaths, and families in grief; but the loving portraits painted here of outrageous and colorful characters joking in the face of ugliness may be unique. As Bob approaches his final chapter, readers will certainly cry, but they will laugh as well. Home Is Burning is a strangely packaged gift: love and pain, death and life, sex jokes, fart jokes and plenty of booze make up an extraordinarily heartwarming love letter from "a sad dude with a big heart who really loves his dad." In its sad ending there is unlikely joy. --Julia Jenkins