In My Brother's Words, Susan Mercogliano

​The following is an excerpt from In My Brother's Words, a memoir of Susan Mercogliano told by her brother, Chris Mercogliano. He began writing it while she was nearing the end of her life last summer. He decided to tell the story in Susan's own voice because he wanted a vividly portray the story of developmental disability in America. 

Susan Memoir.jpg“My brother is telling my story because I can't. Born with a poorly formed left frontal lobe, I was never able to learn language of any kind. Instead, I communicate with a variety of grunts and other guttural sounds. Oh, and I can belly laugh with the best of them. Despite my predicament there are plenty of times when life is downright hilarious. I take great delight in letting you know how amused I am.
 
My reality has always been confined to this moment, which I suppose is both a blessing and a curse. Some people get stuck in the past, and others are constantly worrying about the future. They go to great lengths to learn how to be fully present in the here and now. Me, that's all I know. But being unable to refer to the past or anticipate the future forecloses so many possibilities. It makes it impossible to create the life you imagine for yourself. It's a little like playing poker in a casino. Most people, if they don't like the way the cards are falling, can pick up their chips and try a different table. I've never had that option. I was dealt the hand I was dealt, and I'm still playing with those same cards. There was never anything I could do on my own to change my luck.
 
But it hasn't kept me from living a life that is fully human, filled with triumphs and tragedies and everything in between.”
 
For a great many people as profoundly disabled as Susan, it is a story that doesn't end well. In Susan's case, the beginning was a bear due to family tragedy and the absence of support for developmentally disabled children in the 1950s. But thanks to the creation of Holly Center, an intermediate care facility in Salisbury, MD, Susan's adult life was as joyful, and meaningful, and productive as anyone's. Her death – in her own bed and attended to by caregivers she had known for decades – was as peaceful as any of us could ever hope for.
 
“Chris likes to tell people that Bill Gates couldn't buy better care than I'm getting here, and I couldn't agree more,” referring to her care at the Holly Center.
 
In My Brother's Words is also the story of Holly Center and the incredible difference it has made in the lives of some of society's most vulnerable members. It is a passionate argument for the utter necessity of shared living services like those offered at Holly Center, and for an increased commitment to address all of the needs of the profoundly disabled.
 
In My Brother's Words is currently under consideration by Beacon Press