Social media unearths old pain, plants seeds of healing
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There is a place inside my emotional being I don’t touch. It is deep in my soul and rests there like a stone. It is quiet and confusing.
When I was 2 years old, my younger brother was born with Down syndrome, a disorder that causes developmental and physical delays. While Sam brings boundless joy to all of our lives, his birth and subsequent diagnosis was, and remains, painful for my parents. That is why our recent Facebook experience was such a tremendous gift.
Having a brother with Down syndrome has given me some of my greatest assets and been the source of some of my strongest pain. Growing up, there was so much I wanted when it came to Sam. I wanted desperately to know the real Sam. As if, somehow, Down syndrome was only a mask, behind which my true brother existed in all his “normalcy.”
I wanted other children not to stare at him, and other grown-ups not to condescend to him. I wanted to protect Sam. I wanted to understand him. I wanted to know he would grow into an independent adult. I wanted assurance he would survive beyond 40.
When I saw him in pain, I wanted him to be able to know it was only temporary. When teenagers laughed at him, I wanted Sam to react angrily rather than enjoy the attention. I wanted God to be with Sam, to envelop him and hold him and shield him. In Samuel 1:3 we read, “and the youth Samuel grew, and God was with him.”
All this wanting. And then there was the guilt. The guilt of knowing my own future was practically guaranteed. The guilt of feeling jealous when my parents rejoiced at Sam’s very banality or worried about his future. The guilt when I wondered if my life was enough, or if I had to be extraordinary in order to pay back the absurd gift of my intelligence. I wanted a guarantee that Sam was not chosen to have this over his other three siblings, that it was random. Without this guarantee, I felt I could never live up to having been spared.
I could not find a way to express my desires and my guilt. They lived on silently and hardened into this solid stone, untouched and unyielding inside of me. Over the years it has become a lonely place. As public and extroverted as I try to be, this is a place I seldom share.
Which leads me to the miracle of Facebook.
As most people in my generation do, I took to Facebook, complaining about discrimination. And after a colleague shared my plight in her Twitter feed, Virgin America not only rectified the situation, but has gone out of its way to make sure Sam’s experience is pleasant and respectful. The story was so moving I decided to write about it, especially as February was Jewish Disability Awareness Month.
But that isn’t the whole story. When I wrote about my brother and my family’s treatment at the hands of an ignorant supervisor, my secret solid rock began to leak. The old sadness steamed out and spread against my soul like fog. My simple Facebook update about bad customer service triggered my emotional third rail and left me spent and exposed. Immediately after I posted, I panicked. This lonely, private place of guilt and desire was laid bare for all my “friends” to see. What was I thinking?
And then the responses poured in. Support, suggestions, advice, concern. And with these responses, a little light crept in, shining for a brief moment against the darkness of Alone. And it felt good.
You cannot stand with me inside this oft-hidden place. I know that. But what I found on Facebook was that you can peer in and smile. You can wink. You can see. And by seeing, you can lighten the weight of this solid stone. You can, for moments at a time, relieve my soul of this extra heaviness. Now that’s some powerful social media.
Rabbi Andrea Berlin is the Congregational Network Director-West for the Union for Reform Judaism and a former rabbi at Temple Sinai in Oakland, where she lives with her husband and family.
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