Alexandra "Sandy" Lee (Cherpak) Schaming
(June 19, 1947 - May 3, 2012)
My work is heavily influenced by the illness my mother suffered from – a rare form of dementia called Frontotemporal Lobar Degeneration.
As defined by the Mayo Clinic staff, "frontotemporal dementia is an umbrella term for a diverse group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain — the areas generally associated with personality, behavior and language.
In frontotemporal dementia, portions of these lobes atrophy or shrink. Signs and symptoms vary, depending upon the portion of the brain affected. Some people with frontotemporal dementia undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally indifferent, while others lose the ability to use and understand language.
Frontotemporal dementia is often misdiagnosed as a psychiatric problem or as Alzheimer's disease. But frontotemporal dementia tends to occur at a younger age than does Alzheimer's disease, typically between the ages of 40 and 70."
All these symptoms happened to my mother. She slowly lost the ability to speak clearly and correctly. Eventually, she was left with a simple incoherent phrase – “You want one? At’s Tuesday!” – that became her casual declaration and sometime reply, if one was given, when someone would ask her a question. She stopped bathing, brushing her teeth and feeding herself. She became completely unaware of the way she looked and smelled. No longer could she be taken to the grocery store or a restaurant or anywhere in public. She was like a toddler ignorant of social norms. The person I knew when I was a child, the one who raised me and nurtured me, who was my protector, was gone. She became a monster, one of the walking dead.
When I would create my installations in the presence of my mother at my family's home in Pittsburgh, she would approach the work with intrigue and frustration. I was frustrated that she could not give me a verbal response to my work so, initially, I tried to fill this void by photographing her interactions with the installations. This eventually led me to photographing her – documenting her decline and strange behavior each time I would visit from New York.
At the request of my father I have added 6 photos to the end of this section, dated from the 1980s and prior, that showcase her physical beauty and vibrant personality – a time of normalcy.