download the PDF version - Noble and Greenough School

Marian Williams Steele(left) painted a portraitof her daughter, Pam,and grandson, Banker(at right).After her initial diagnosis, Pam kepther illness a secret, referring to it only as“her memory issue.” Pam, who workedas a counselor at Milton Academy formany years, had always espoused tellingthe truth.White’s documentary, filmed over thecourse of three years, is beautiful andlyrical. And though it does not shy awayfrom the difficult truths of losing a lovedone to a degenerative brain disease, it isalso full of tender, joyful and even funnymoments.In the film, a friend and former colleague,Jane Brewer, recalls meeting Pamin the 1970s, when Pam was a model andactor in commercials, including one forArrid Extra Dry, which is included inthe film. A painting of Pam, hair blowingin the wind, appeared on the cover ofYankee magazine. Her youthful exuberanceand charisma are palpable from thearchival footage and paintings of a youngmother in love with life.Another close friend says to the camera,“She was a wonderful friend.” Thefriend immediately corrects the “was”to “is,” clearly shaken by her error andfighting back tears.White captures on film his mother’sdifficulty in finding the correct sleeve inher jacket, her confusion in identifyingbasic objects and her struggle to rememberwhat year it is. White shows hismother talking about her husband as her“knight in shining armor.” “He’s so nice.And so funny,” she says.Pam’s husband, Ed, is her primarycaregiver. “I have to remember thephenomenal life she’s given me,” he says.“I sure as hell owe her this even if it getsfrustrating.”Threaded throughout the story areanecdotes about “Mana,” as the familycalls Marian Steele, and images of someof her 500 paintings, many of whichhang in the family’s Dedham, Mass.,home. Pam remembers of her mother,“She always kept a sense of humor.” Pamlived with her mother after her parentsdivorced; during Pam’s early childhood,she lived in a New York City hotel, whichher father owned.“I didn’t choose to make a film aboutAlzheimer’s. It was just a reaction towhat was happening in my family,” saysWhite, whose previous feature documentaryprojects include Sierra Leone’sRefugee All Stars, an award-winningstory about musicians in a West Africanrefugee camp who find hope throughmusic. The Genius of Marian is the firstfilm co-directed by White and his wife,Anna Fitch.White says that one of the challengingaspects of making the film was tohonestly portray the brutal realities ofAlzheimer’s disease while portrayinghis mother with dignity. “My goal is tocreate a film that finds light and beautyin a place often shrouded in shame andconfusion,” White says. “My motherhas taken care of people her whole life,and I am proud that this film gives her aplatform to continue to do so.”The film uses a broad palette of visualtools to tell its story. White has madecreative use of his family’s home moviesfrom the 1950s and ’60s and has incorporatedmany of Marian Steele’s paintings—seascapesand family portraitsat the beach, many set at Salt Island inGloucester, Mass.White is committed to using TheGenius of Marian as a teaching tool.White’s brother, Luke, is a medicalschool resident studying psychiatry atColumbia University. His sister, Devon,has been developing an outreach andengagement strategy and a discussionguide for the film. Resources are indevelopment for general audiences,K–12 and clinical purposes. The film willeventually be available for purchase onThe Genius of Marian website (www.geniusofmarian.com).Together, Pam’s children are buildingawareness and aiming to improve careand support for people with Alzheimer’sand their families. Luke, for example,helped build a seminar around thefilm for other medical students at hispsychiatry program. “This is ‘narrativemedicine,’” says White. “That’s a crossdisciplinaryacademic term for looking atthe whole picture of a disease.”Part of that whole picture is thecomplexity and cost of arranging caregiving.“My father has done an absolutelyamazing job,” White says. He explainedthat both of his parents had to give upfreedoms and independence as theyadjusted to their “new normal.”“Mom was initially consumed by36 Nobles spring 2013