I don’t want to join your club!

I shivered as I stepped off Crown Heights’ bustling high street into the dimly lit stairwell. The Brooklyn night was frigid, but the tremor that ran through my body wasn’t from the cold. 

I hesitated in front of the metal door. I didn’t have to open it. I could have stepped back into normality to join old friends at a lively farbrengen two blocks away. 

I opened the door.

The basement shul was warm and bright. A large table laden with food filled the centre of the room. Men of all ages sat huddled in two distinct groups on opposite ends of the oversized table. They chatted and laughed as they snacked on herring and sipped vodka. Both groups appeared to have an awkward camaraderie- a kinship forged in pain. 

Sholly, the evening’s host bounded over to welcome me. “I’m glad you came; I know this isn’t easy”. 

Boy, was he right!

Sholly runs an organisation that assists Chabad emissaries who have children with disabilities or medical syndromes. A mutual friend had introduced us a few months earlier, and Sholly had already helped us with invaluable assistance for Shaina. When I told him that I’d be in New York for the Kinus- the international convention of Chabad rabbis- he invited me to his annual get-together for dads of children with health challenges.  

Without Sholly’s effusive empathy and gentle nudging, I would not have had the courage to arrive that night. 

Above ground, scores of black-hatted rabbis hurried to join the dozens of lively get-togethers around the neighbourhood. The Kinus convention is high-powered and inspiring. I had stepped into the secret society of the rabbis who carry heavy personal burdens. In all my years of attending the Kinus, I had remained blissfully unaware of this group and its meetings.  

Sholly guided me over to the smaller of the two groups of men- the English speaking crowd. 

“Welcome to the club”, a dad boomed wrily. I immediately recoiled. My head screamed, “I don’t want to be part of your club!”. I didn’t belong here. I should have been at one of the dozens of spirited shindigs happening around the neighbourhood. Dread diseases happened to other families- to people I would counsel, not to my family. 

Each member of the “club” introduced himself with his name and that of his child’s diagnosis. Rabbi One’s child had Down Syndrome. Rabbi Two was ambivalent about his club membership because his child “only” had chronic diabetes. The group’s in-your-face cynic simply stated that his toddler’s syndrome meant that she would not survive to elementary school. 

“What about you?” they wanted to know. Well, it had only been one week since we had met with Shaina’s neurologist. I had no idea what our diagnosis meant and was battling cerebral indigestion. I couldn’t yet bring myself to use the term “BPAN”, so I simply described Shaina’s extreme seizures. The looks on the faces of the others reflected a rare empathy. 

I had been inducted into the “club”.

That evening drained me emotionally. Kinus always inspires me, but the magnitude of Shaina’s diagnosis overshadowed its magic. 

As I collapsed into bed, I swore that I would never attend another meeting of this club or any club like it. I didn’t want to hear people’s dire stories nor share my own. I didn’t want anyone to know about Shaina’s prognosis, not even my family. I wished it all away and, if it wouldn’t go away, then I would hide it away. 

People needed me for counsel and inspiration. They needed me to be strong and focused and available and compassionate. Naomi and I would soldier through Shaina’s challenges together. We would not become one of those families that people puppy-eye and whisper about. We’d manage, and we’d be strong.

Or, so I thought. 

Unbeknownst to me, when I had opened the door that night, it had opened a window to a whole new type of strength. 

At the kinus grand banquet 2019

Published by rabbiarishishler

Husband, father and rabbi of Chabad of Strathavon in Johannesburg, South Africa.

3 thoughts on “I don’t want to join your club!

  1. Rabbi Shishler! You are Such An inspiration for all of us. The way you are not afraid to share your vulnerability and how with the ‘akinderworldnow’ project embrace Shaina’s condition, empowering her in the process. THANK YOU for sharing and making us aware of BPAN. Please G-d may research find a way soon!

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: