- Fragile X-associated Disorders
- Treatment & Intervention
- Support the NFXF
Patricia J. Heavren
As long as I can remember, I’ve been on a journey to discover the extraordinary in the everyday world—especially extraordinary people, the home-grown “stars of life” with that elusive “X” factor. My search has led me not just to those who have been applauded for exceptional abilities, but also to the opposite extreme: those with “sub-average” intellectual capacity (at least according to certain kinds of measuring instruments).
When I heard of the recent death of Jim Cuzzocreo, a man with fragile X syndrome who lived in a group home I managed 25 years ago, it hit me hard. Besides his FXS, Jim had the additional “X” factor I mentioned above.
Jim was exceedingly good-humored and unafraid to make a mark in the world. He left an impression wherever he went. He also had a masterful ability to quickly capture the essence of someone’s personality in a stunningly accurate “pet” name that followed them thereafter.
Jim referred to me as “Judgie.” While I liked to think it referred to my job as director of the agency, I secretly knew better. Jim was much keener than that. He intuitively knew that I loved to have the last word and to be in control—essentially to hold court.
Jim had a knack for teaching me to break out of my guarded, in-charge demeanor by showing me an up-close, living example of unabashed self-expression. I remember a time when I stood next to him in an Atlantic City casino as he pulled the handle of a slot machine, jumped up and screamed, “I won a million dollars!!” as six quarters trickled into the coin reservoir.
After the gathering crowds dispersed and embarrassment drained from my face, it dawned on me that I was in the presence of a true master. Jim showed me those places in myself that preferred blending into the woodwork rather than courageously self-expressing. He challenged me to look at my milk-toast caution and invited me into the possibility of being comfortable with the kind of enthusiasm that could draw a large crowd.
Jim’s identical twin brother and four cousins are also affected by FXS. Many others receive diagnoses that judge or measure functioning or intellect outside the curve of what is considered average or normal. I wonder how many of us who fall in the middle of that bell curve continually miss the great value and contribution of those whose lives evolve differently than our own.
Jim was a teacher for me, with skills and capacities for expression I may never procure easily. Fond of super-heroes, he frequently donned a red cape or pointed an invisible super-weapon in my direction.
Twenty-five years ago I thought that was “inappropriate behavior,” and tried, along with many others, to guide him toward more socially accepted ways of being. While there may have been some merit in that, I now have a slightly different view. I wonder, if those of us working with him could have seen him for the truly great capacities he had, whether he would have needed to “act out” his super-hero qualities so literally in the world.
Jim was in his 20s in 1983 when his parents and the parents of some of his peers undertook the challenge of establishing a not-for-profit organization in Connecticut where group homes were just beginning to dot the state map and deinstitutionalization was in its early stages. I think Jim was fond of super-heroes because he came from a family of them—the early movers and shakers of the community-based group home movement when “not in my backyard” was very much a resonant theme in our culture.
The issues were the same then as they are for many parents of children with an FXS diagnosis today: How will my son/daughter be cared for after I am gone? What mark will they make on the world?
In speaking with Jim’s mom after his death, she told me two things. If she ever had a doubt—which she never did—about the enormous value of her son’s life, the 500 people who came to his wake were a testimony to the lives he touched.
And she shared one of her most treasured memories: the day that Jim presented his oncologist in 1986 with the gold medal he had won in Special Olympics, after a full remission from cancer. He told the doctor, “You saved my life, Doc, it’s yours.” That doctor’s life was but one of the many Jim touched with his heroic heart.
As a life-long scout for the extraordinary, I’ve had great luck. It is with confidence that I can assure parents of children with FXS today that their children will indeed leave legacies of great goodwill. I know this because I have known someone with the “X” factor.
Like Jim in Atlantic City so many years ago, I too, have “won a million dollars,” and hold nothing back when shouting this to the heavens. After all, a great star showed me how.