Susanne Marie Gravelle of Westport died Sept. 14 after a long battle with bvFTD. She was 45.
Her natural beauty and signature laugh will not soon be forgotten.
Susanne “Susie” was born Feb. 10, 1974 in Garden City, New York to Philip and the late Nancy Rodilosso. Susie had fond childhood memories of family travel, especially a cross-country escapade, and great times with the Mahland family.
She often reminisced about her childhood summers, biking and boating around the North Fork of Long Island with her sister Lisa, cousins, and friends.
Susie graduated Garden City High School in 1992 and headed north to the University of Massachusetts, Amherst to pursue and expand her love for the arts and painting. She really enjoyed Amherst, the Berkshires, and college life in general.
In her senior year, she met a sophomore named Jeff, who turned out to be her future husband. Upon graduation from UMass in 1996, Susie moved to Boston and pursued a Master’s degree in art education.
Long distance challenged Susie and Jeff’s relationship at that time, and Susie stayed in Boston to finish her degree from Mass College of Art in 1998.
The following year Susie moved to New York to teach art at the Churchill School on 29th Street, and absolutely loved having an impact and helping shape creative young minds.
Jeff and Susie were finally in the same city at the same time, reunited, and married on Aug. 9, 2003 at the New York Botanical Gardens in the Bronx. By December of 2004, they said goodbye to TriBeCa and headed for the suburbs of Connecticut.
Susie’s home on Pequot Drive in East Norwalk became the summer congregation place for their family and friends. Susie always loved a great party, and many late nights and memories were created around the pool and the warmth of the firepit.
She was proud of her home and the time and effort that went into their construction projects, design, and decorating. Susie used the rooms of her home like a canvas, and painted pieces that added personal touch and comfort.
Her greatest works, however, are her boys. Susie gave birth to Gavin Philip in 2007 and to Julian Michael in 2008. She referred to them as munchkins and adorned their rooms with paintings that reflected her playfulness and love for animals.
Planning daily art projects and activities came naturally for Susie, so she and the boys were usually found around the activities table in the playroom. Susie was a proud, involved mother and actively participated in fundraising and event planning for A Child’s Place, where the boys attended preschool.
Susie was a very accepting, practical woman and proud of her frugality. She enjoyed simple daily pleasures like a chai latte, trash magazines, and a great penne Pomodoro.
Working out, eating well, finding the next anti-aging serum, and polishing her pearly whites were a reflection of someone who made a real effort to take care of themselves.
She did have guilty pleasures though, and a sweet tooth for Swedish fish, Balducci’s raspberry gum drops, and apple martinis.
Her love for animals was pervasive and often reflected in her art. She especially loved her dogs Frida and Stella, and accumulated a wardrobe for her pups that kept them warm and humorously stylish.
Something changed though, around 2010 and 2011, and no one in Susie’s life could quite put their finger on it. Indifference, selfishness, and denial were not characteristics that anyone had ever used to describe Susie.
After moving over the border to Westport in 2012, relationships and boundaries with friends and family became strained, and her marriage ended in divorce.
The escalation of behaviors that were out of character for Susie seemed to pile up by 2013 and especially 2014.
Jeff and Susie’s family took action at the end of 2014, and after more than a month of testing at multiple facilities, the Menninger Clinic in Texas diagnosed Susie in February of 2015 with the behavioral variant of FTD (Frontotemporal Degeneration-Dementia).
No one in the family had ever heard of FTD, but even a cursory review of symptoms assured Susie’s family that the diagnosis was correct. By the time Susie returned home from Texas, her ability to process this terrible news or even get upset about it was gone.
Susie spent the remaining four years of her life at the Maplewood facility at Stony Hill, in Bethel, Connecticut. Susie’s family rallied around her, and Jeff and her boys visited most weekends.
She still maintained a childlike sense of humor and the Gravelles made the most of their time spent being silly, playing catch, and watching movies.
Throughout the various stages of her disease, and until Susie lost the ability to speak over 18 months ago, there was one thing she always made clear; Susie never failed to mention that she loved her boys.
Even after she lost the ability to communicate verbally, her innate maternal instincts overpowered a disease that strips its victims of emotions. Susie’s eyes lit up and she never stopped hugging and kissing her boys.
Susie enjoyed frequent visits from friends and loved her caretakers from Maplewood. She was surrounded by love and truly cared for every day by her trusted aide, Iris, and others with whom Susie had a profound effect.
Fortunately for Susie, the effects of this cruel disease that stole her essence, freed her from fear, upset, and wondering, ”why me.” She was happy and smiling until the end.
Susie leaves behind her two sons Gavin and Julian, her ex-husband Jeff, her father Phil, her sister Lisa, and nieces Catherine, Abigail, and Ellot.
Her family has chosen to celebrate her life with a private ceremony.
In lieu of flowers, her family has set up a GoFundMe to raise money as a gift for those caretakers at Maplewood who helped Susie around the clock, as well as a donation to research in her name at AFTD, and finally a small memorial. If interested, please visit http://www.gofundme.com/susiegravelle.
The hallmarks of bvFTD are personality changes, apathy, and a progressive decline in socially appropriate behavior, judgment, self-control, and empathy.
Unlike in Alzheimer’s disease, memory is usually relatively spared in bvFTD. People with bvFTD typically do not recognize the changes in their own behavior, or exhibit awareness or concern for the effect their behavior has on the people around them.
FTD’s estimated U.S. prevalence is around 60,000 cases (Knopman 2011, CurePSP), and many in the medical community remain unfamiliar with it. FTD is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis.
Recent 60 Minutes Feature Story: “The Cruelest Disease You’ve Never Heard Of”
For more information on FTD visit: http://www.theaftd.org