How important is a hug? What's the value of 'precious beauty' in a world full of atrocities and deceit?
"[It's] the only way, I think, for all of us to persevere through the atrocities and the hate and the lies." —progressive activist Ady Barkan
Healthcare and social justice campaigner Ady Barkan, who rose to national prominence as as an outspoken critic of the Trump administration and Republicans in Congress even as he suffered from the debilitating disease known as ALS, answered that question late Friday night with an eloquent, heartbreaking, and very personal thread on Twitter that also served as a reminder to other progressives about the human side of the political battles waged in Washington, DC and far beyond.
The topic: the best hug ever from his young child.
He wrote:
The worst part of my ALS, by far, is how it constrains my ability to be the father Carl deserves, the father I want to be. pic.twitter.com/0Fsm4AzKdH
— Ady Barkan (@AdyBarkan) March 23, 2019
One hundred times every day, I despair at my inability to tickle and chase him, to help him build towers and train tracks, to bellow and headbang alongside him, to make messes together and then clean them up. . . .
— Ady Barkan (@AdyBarkan) March 23, 2019
to read stories and tell jokes, to comfort him in the middle of the night, and to scold him when he dumps his dinner plate for the fifth evening in a row.
— Ady Barkan (@AdyBarkan) March 23, 2019
And yet we still manage to love one another.
Yesterday when I went to daycare to pick him up, Carl, unprompted, climbed up over the arm of my wheelchair and into my lap.
He wrapped his arms tight around my neck and hugged me, and kept hugging me, and kept hugging me.
— Ady Barkan (@AdyBarkan) March 23, 2019
“That was the best hug I’ve ever had,” I told him when he was done, trying more than anything to sear it into my mind’s eye.
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— Ady Barkan (@AdyBarkan) March 23, 2019
Because when the daily grind of living a nearly paralyzed life becomes too much, when I am exhausted and depressed and hopeless, I want to return to that hug. I want to imagine that there are similar hugs in my future.
— Ady Barkan (@AdyBarkan) March 23, 2019
That’s also the only way, I think, for all of us to persevere through the atrocities and the hate and the lies.
We have to hold on to the precious beauty, to the moments of triumph, and fight in the hope that there are more victories to come, more beauty and love in our future.
— Ady Barkan (@AdyBarkan) March 23, 2019
The disease from which Barkan suffers, Amyotrophic Lateral Sclerosis (ALS), is an incurable and degenerative condition that effects the nervous system's ability to control muscles. ALS makes moving arms, legs, and other extremities increasingly difficult (and later impossible), and ultimately attacks involuntary muscle systems that control breathing and the heart.
While Barkan operated in politics prior to his diagnosis, he entered the national spotlight fighting against the effort by Trump and congressional Republicans to dismantle the Affordable Care Act in 2017. Subsequently he joined the fight against Trump's nomination of Brett Kavanaugh to the U.S. Supreme Court and also launched the 'Be a Hero' Fund, a group that organized to defeat Republicans nationwide during the 2018 midterm elections.
In response to his overnight thread, many let Barkan know how much the message meant to them and thanked the activist for his tireless and inspiring activism.
"I just awoke and this is the first thing I saw, as I lay in bed with my 2 yr old daughter between my wife and I. I hope it brings you even a little bit of comfort to know that your story and words are inspiring humans all over the world to be more loving and more human," said one respondent. "Thank you."
Said another: "You can't fake love or courage. Kids see through you. Carl is a lucky kid as you don't have to fake either."
