Each and every family is unique, and not one of us can claim we are a perfect unit. Though each one may have its skeletons and attributes not all families are blessed with a member like an Uncle Paul.
An entity in and of himself, I learned through him at a very early age that social barriers and expectations are merely suggestions that, given the right attitude and frame of mind, can be stripped complete away.
Paul has never cared about what the clothes on his back look like, whether his hair is combed right or if people are looking at him askew. He loves simply and well, straight from his soul without hesitation and with the innocence of a little boy.
In the late 1950s Paul was born to my grandparents late in their lives (both were well into their 40s). Either from their age or unknown circumstances, he was born with Down’s syndrome, a chromosomal defect that has inhibited his cognitive and physical abilities throughout his life.
Back then, there were no social services to help my grandparents raise him at home. They were told from the start that “people like him” were locked away in an institution ”¦ that’s just what you do.
Determined to not let their youngest child and only son leave their home, they tried the best they could for as long as they could to care for him at home. But with no professional guidance, social services or even access to research on how to take care of a special-needs child (keep in mind it was the 1950s) they faced the most daunting decision of their lives.
As time wore on, it became clear to them that they couldn’t care for him the way they thought he deserved and ultimately sent him to live at Pineland Farms, a Maine “school for the feeble-minded” located in New Gloucester. My grandparents, aunts and mom would make the drive there to visit him as often as they could but his absence was always felt by all of them.
They still tried to be a part of his life in any way possible. My grandfather, a mesmerizingly talented singer, gave Paul his love of music. To this day he still remembers lyrics his father sang to him when he was just a boy.
In the late 1970s it became public that the institution was widely neglecting their wards, along with wide-swept accusations of just about every form of abuse known to man. Paul had even been “quarantined” for approximately a year and a half, allegedly due to a bout of hepatitis. None of his family were allowed contact with him during that time.
After the scandal hit the media, Paul was removed from the institution and placed in a smaller, more innovative facility.
With the help of some amazing personal care workers at the Independence House in Freeport, Paul blossomed into the pint-size man he is today. Using patience akin to martyrdom, they taught him how to communicate more through sign language and encouraged his lifelong love of music.
The Paul I grew up with, and the one I still know today carries none of the shadows of one who lived through any of those nightmares. Blessed with a selective memory and limited cognitive skills, he’s managed to make it through over five decades of life without attaining bitterness or carrying any guilt, sadness or remorse. Even though he lost both his parents years ago (he always grouped as “MomDad” regardless which one he was speaking to), he still has the unbelievably contagious grin of a toddler.
The so-called experts claimed he wouldn’t live much past the age of 30 because of heart problems, but possessing the stubborn streak that runs rampant in our family he’s proven that theory ridiculous. Now in his 50s he’s still with us, albeit a bit more gray around the temples.
These days, my mother and my aunt are still close to him and would travel the earth just make sure he’s safe, happy and well cared-for.
After a recent visit with him, I was reminded how simple life can be when you strip away expectations and worry. His innate ability to live in the here-and-now is admirable.
Over the years I’ve always looked at some people with a morbid sense of awe, kind-of like watching a car wreck, as they spend all their time and energy trying to maintain an image of someone they’re just not. All that wasted energy, money and irreplaceable years of their life creating an image of who they would like to be instead of finding peace in who they really are.
Although I’ve tried to empathize with many of them and spent a cold and lonely stint of my own life trying to be someone else, I’ve decided its just too ingrained in who I am to just be myself, the good, bad, less-than-perfect and a-OK being I’ve morphed into. I’ve been blessed with an amazing role model of how to live life as the real you.
”“ Elizabeth Reilly can be reached at elizabethreilly1@yahoo.com.
Comments are not available on this story.
Send questions/comments to the editors.
