Mary
Carmel
July 16, 1932 – May 25, 2020
Curious, fierce, and full of life — Mary Carmel Garvey lived with an unbreakable spirit. A voracious reader, devoted mother, and courageous fighter, her legacy inspired a movement to illuminate Charles Bonnet Syndrome for all.
“Her legacy has inspired us to cast her light on CBS, educate the public and medical community, and empower those living with CBS to live with dignity, grace, and inclusion.”
A Curious Spirit from the Start
Mary Carmel was born on July 16, 1932 in Jersey City, NJ to Jack and Kitty Garvey. From the day she arrived, Mary was a curious human — always investigating her surroundings, reading any material she could get her hands on, and poking her nose into anything that caught her eye. Her curious nature would serve her well throughout her remarkable life.
Mary dealt with visual challenges from the time she was a toddler. Her vision took a critical turn in 1963 when she received enormous amounts of Prednisone to treat ITP. Back in those days, there was no effective treatment, and it cost her a significant portion of her visual acuity.
Love for the Written Word
Mary never allowed her vision to define her. She had a voracious love for the written word — she read the Webster dictionary several times (the big old dictionaries), loved to work any crossword puzzle you could give her, read her daily newspaper word for word from beginning to end, and devoured every book or assignment given to her children in school.
Mom wrote poems about and for every person she loved. She wrote about her pain, her anxiety, her fears, her triumphs — and about the perplexity of life, love, and death.
She journaled daily, wrote for the local newspaper, and authored three children’s books (awaiting publication). She was intelligent, outspoken, quick-witted, and a human sponge that absorbed everything she experienced.
Battling Charles Bonnet Syndrome
Mary lost her vision completely through Angle-Closure Glaucoma. Her CBS became more intense as her vision diminished. Her hallucinations ranged from innocuous to extremely disturbing — patterns, large print and text on imagined walls, parades of people, Nazi soldiers, children in period clothing, thieves and burglars, bugs on food and clothing, clowns, funeral processions, and many more.
As caregivers, it was heartbreaking to watch her battle not only blindness but CBS. She was given an erroneous diagnosis of dementia by a doctor who did not take the time to conduct a proper assessment — a diagnosis that caused her enormous emotional stress. That doctor later retracted the diagnosis.
Almost a year later, a neurologist in Charlotte, NC expunged Mary’s dementia diagnosis. It was one of the happiest days of her life. She felt vindicated and validated.
With renewed energy, she decided to learn braille and receive Cognitive Behavioral Therapy to combat her CBS — “take her mind off of things,” she would say. Mary bravely fought her battle with CBS until she left us on May 25, 2020.
Mary Carmel’s life was filled with curiosity,
a love for the written word,
and an unbreakable spirit.
Even in the face of Charles Bonnet Syndrome, she bravely refused to let CBS defeat her. Her legacy has inspired the launch of a nonprofit in her honor — Mary Carmel’s Light — to cast her light on CBS, educate the public and medical community, advocate for and support those living with CBS, and empower them to live with dignity, grace, and inclusion.
We miss you, Mom. We hope we make you proud.
Support the Mission