About Mary Carmel

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 or interest. 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 for ITP and it cost her a significant portion of her visual acuity. 

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, not the little pocket dictionaries), loved to work any crossword puzzle you could give her, read her daily newspaper word for word – beginning to end, and every book or assignment we were given in school. Mom loved to write as well. She journaled daily, wrote for the local newspaper, and authored three children’s books (awaiting publication). Mom wrote poems about and for every person she loved. She wrote about her pain, her anxiety, her fears, her triumphs, and the triumphs of those she loved. She wrote about the perplexity of life, love, and death. 

Mary was intelligent, outspoken, quick-witted, and a human sponge that absorbed everything she experienced. She could have pursued and been successful with any career she chose…and she was; she chose motherhood. Her path proved to be unpredictable, stressful, and challenging, riddled with twists and turns that most humans would find difficult to endure. Mary Carmel was determined, strong-willed, and a true survivor. Her sense of humor, her zest for life, and her love for her children fed her warrior spirit until the day she chose to leave.

It was that determination and strong will that served her well in her battle against Charles Bonnet Syndrome (CBS). Mary lost her vision completely through Angle-Closure Glaucoma. Her CBS became more intense as her vision diminished. Mary’s hallucinations would range from innocuous to extremely disturbing. She experienced patterns, large print, and text on what she imagined to be the walls in her room. She saw many people all the time. The people she would see could be pleasant to downright scary. She saw Nazi soldiers, children in periodic clothing, and what she thought were burglars or thieves. Sometimes she saw bugs on her food or her clothing. She saw parades of clowns, people laughing at her, funeral processions……and many, many more visual images. 

Mary Carmel’s life was filled with curiosity, love for the written word, and an unbreakable spirit.

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 was not qualified to give the diagnosis and who did not take the time to give our mother an assessment that is mandatory to accompany a dementia diagnosis. This doctor later retracted the diagnosis – it was all disconcerting for our mother and caused her emotional stress and anxiety. 

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 her new 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, love for the written word, and an unbreakable spirit. Even in the face of Charles Bonnet Syndrome, she bravely fought her battle to not let CBS defeat her. Her legacy has inspired Kevin and I to launch a nonprofit in her honor – Mary Carmel’s Light – to cast her light on CBS, educate the public and medical community, advocate and support those individuals living with CBS, and empower those with CBS to live with dignity, grace, and inclusion. Mary Carmel’s life serves as an inspiration to us all – to never give up, to always fight, and to leave a lasting legacy of love, kindness, and compassion.

We miss you, Mom! We hope we make you proud.