March of 2014 in Michigan was one of those crisp, snow-covered, shockingly cold days but with the clearest blue sky you could imagine. I’d forgotten how beautiful Michigan was in the winter. It had been almost 15 years since I’d been back. With my grandparents gone and my dad reluctant to return, there hadn’t been a need to visit. Until now, to meet Juli.
It wasn’t until I was in my early twenties that I knew about Juli. “I have another sister,” my Dad casually mentioned. He was sorry he hadn’t said anything, but couldn’t bring himself to tell his own three children what happened. And then he asked us to keep it quiet. So goes the story of a family secret.
The weight of silence
Carrying burdens can be harmful to your health. Studies have documented their connection to anxiety and depression. And Columbia University professor Michael Slepian found keeping secrets can carry a physical burden too. Medically, secrets actually stress the cortex in your brain. Neurosurgeon Gopal Chopra calls this the “complications of emotional burden.”
And yet many of us carry the burden of a family secret. From illnesses to arguments to sexual orientation — there are legitimate reasons people hold back information or hide the proverbial family skeletons. But I never considered the health value lifting such an encumbrance could really have.
Our family secret was Juli. Born in 1958, she was a surprise. My grandmother hadn’t planned on having a late-in-life baby. My dad was 14, his other sister 10. When the doctor delivered Juli, he immediately told my grandmother something was wrong. You can’t keep her, he said. My dad met Juli briefly after she was born and never saw her again.
In the 1950’s, little was known or said about Down syndrome. Babies looked different and were expected to have limited lifespans and serious health problems. So like the famous novel, Memory Keeper’s Daughter, Juli was given away, first to a family and then to a caregiver and a group home.
The impact on my father’s family was tremendous — the emotional toll, stress and pressure of this choice affected them seriously. So much so, that my dad swore my mom to secrecy and never told me or my two siblings. And even when he finally did, it was clear the secret was to remain.
Lifting the burden
More than 5o years had passed since my dad had first met his sister. On a solo trip to his 50th high school reunion, he finally felt the need to lift the weight. In the sunset of his career as a college president and an empty nester with grandchildren of his own, he made one of the most important decisions of his life.
“I just decided I was going to do it,” he told me. He called the group home where she lived, got permission to visit and just days later lifted a burden he’d held for over five decades.
“She was sitting at the end of the living room with her caregiver,” my dad reflected. “She jumped up and yelled: ‘Oh! That’s my brother!’ She runs to me and wraps her arms around me and we both start crying. We spent ten minutes like that, just hugging and crying in the middle of the living room.”
With all of the challenges of Juli’s disorder, it also brought a blessing: Juli hadn’t carried a burden, a grudge or heartache. She was simply happy to see her brother, happy to get a hug and happy to have love from him, in that moment, on that day.
From then on, my dad and Juli built a relationship. They visited, sent emails back and forth and shared stories. He brought my mom to visit, and my siblings and I begin communicating with her too. She didn’t know how many years it had been. All she knew was that we were her family and we loved her.
You don’t know what you’re missing
What we didn’t know was the life she had all of these years. Her room in the group home was full of photographs with her boyfriend Gary, concert ticket stubs and albums of her many adventures. She had a life — a full one.
You see, secret keeping isn’t just physically and mentally taxing — it keeps you stuck in the place you were. For my dad, it was realizing Down syndrome isn’t the way it was described in 1958.
Mac Mascovits, Executive Director of the Rocky Mountain Down Syndrome Association, sees dispelling those myths as key:
“People with Down syndrome are just that: people. They have dreams and desires, emotions, goals and expectations. They feel love, pain, joy, and sorrow, just like anyone else. When treated as equals and given a chance, more times than not, they will exceed your expectations.”
As for Juli, she sure surpassed the expectations my dad had.
“She really loved life,” he said, “and she lived it with love and positivity.”
An impact never imagined
It was that cold day in Michigan when I met Juli for the first time. Unfortunately, she was in a hospital bed. Her organs were failing and her time was short. At 55, she had already exceeded the lifetime expectation for a woman with Down syndrome. But in the few years my dad had to get to know her again, she did more for him than he could have dreamed. She not only helped him lift the weight of the secret, she lifted his spirits in a way I’d never seen before.
My dad wasn’t thinking about science when he let go of the burden of his own secret. He probably didn’t even consider that revealing secrets is correlated with both physical and mental health improvements. But as he now battles the early stages of an Alzheimer’s diagnosis, I’ve noted that he’s handling his disease with much more grace and lightness than I’d ever imagined he would.
While he wishes he’d found Juli again sooner, he’s glad he had the relationship he did.
“It changed my life in many respects,” he told me recently.
Mine too Dad, mine too.