Yesterday afternoon I sat talking with a friend. Ok, maybe said ‘friend’ might be more accurately described as a ‘therapist’, but let’s not get caught up in details. Though when I tell you that he is a man and he actually actively listens to me for AN HOUR – like sixty minutes IN A ROW then I guess you can come to your own conclusion about the nature of our relationship.
Anyway, said paid-to-listen-and-offer-helpful-advice ‘friend’ made an observation. He said that I tend to be very open. That I share a great deal of myself and my family’s story here every day, but that I also seem to be pretty damn open in real life as well. I couldn’t argue. I’m a sharer.
But there’s a reason for that, I argued.
By way of illustration, I told him about a post I wrote not long ago called I See Myself in which I described the visit to my doctor that ultimately led me to find a friend to whom I give money to listen to me talk for an hour at a time.
I told him that in that post I had laid bare the painful realization that many of my daughter’s challenges were also my own. That I’d admitted to my guilt – as irrational as it may have been – about the overwhelming similarities.
But then I told him about the response to that post. The nods of recognition and understanding that poured into the comments that day – the ones that then led me to write another post the next day called Me Too. The one where I said the following.
for when we dig the deepest
reach and reach to the farthest corners
to unearth the darkest treasures
give words to the whispers
lend them a loud, clear voice
and only then
do we take steps toward the light
and when we take that treasure, dark and cold as it may seem
so god damned heavy
how could anyone possibly understand this thing?
and plop it down
in the middle of the village square
here it is, damn it
this thing i’ve found
here it is
it drops with a thud
shakes the earth
kicks up the dust
yes, here it is
a voice in the distance says
i have one of those too
and with a thud
another drops to the ground
yes, and me!
and suddenly it’s not so precious anymore
no, it’s just one of hundreds
but not solitary
never to be alone again
To everyone who said Me too.
To everyone who dropped their treasure in the village square.
You – WE – are not alone.
And I told him how much I think that means – that moment of awareness that we are not alone. That moment when we make a connection and recognize ourselves in someone else’s story. And how much more it means when we live the lives that we do – so often so dramatically different from everyone we come across – so alien to those we meet in our brick and mortar lives. How the moment that someone says, “I live this too” can be life-changing.
And the thought brought me round yet again, as it always done, to our kids. To THEIR need for connection. To THEIR need for that precious awareness that THEY are not alone. And how much more that means when THEY live the lives that THEY do – so often so dramatically different from everyone THEY come across – so alien to those THEY meet in their brick and mortar lives. How the moment when someone says, “I live this too” can be life-changing for them too.
And I thought again about the words that so many people still contort themselves to avoid assigning to their children, to themselves – Autism, Aspergers, PDD – the words that they dance around and replace with others that they find less threatening – developmentally delayed, sensory challenged. And I thought again of how reclaiming the words – using the labels not to ostracize nor set aside but to connect, to create, to provide a roadmap to a village of their own might not just be life-changing, but life-saving.
Last night a friend posted an article by a young autistic man named John Scott Holman
, who had gone undiagnosed for years. His journey had led him to abuse a wide variety of street drugs, ultimately depositing him somewhere just west of Hell. He had attempted to kill himself because he had become convinced that he “was a waste of oxygen in a cruel and meaningless world”.
And then – finally – finally – he was given the single word that led to his salvation.
“Discovering my autism has been my saving grace,” he said. “I will never forget the overwhelming emotions that poured over me when I first read about Asperger Syndrome in the DSM-IV. I’m not broken. I’m not bad. I’m just autistic and that is alright! Since being formally diagnosed, I’ve come to understand and embrace myself for the remarkable person I am.”
In the word, he found himself; he found his purpose; he found a community.
Last week, my friend Sara shared a favorite Shel Silverstein poem. I’ve read it countless times over the years, yet this time it brought tears to my eyes. Because in eight short lines – in thirty-one little words – it says it all.
This is why I believe in disclosure, why I share what I do and why it is so important to me for my girl to know exactly who she is, scary words and all.
Because those masks look awfully heavy, don’t they?