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"1963: We hardly talked...but I still can see him standing there." -Susan of Tom

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Stepping up to the sloping front  yard, I admired New Jersey’s idyllic green and ambitious mosquitoes.  Inside, I could see 3 generations- Susan and Tom, their daughters Amanda and Kim, their husbands and kids- converging in Susan’s kitchen.  Susan came out to welcome me.

This kitchen was an impromptu classroom for a lesson in empathy’s silent language when words aren’t always available. You wouldn’t imagine it from the noise, though: fridge door slamming, toddlers yelping and a family discussing optic neuritis and lacrosse tryouts with equal ease, all at chaotic speeds and volume. Except when Susan spoke; then the kitchen went silent as Susan emphatically described the day she and Tom learned of his diagnosis in 1979. “This jerk neurologist. He got a phone call in front of us, talking about his oil stock, then he looks up and sees us still sitting there. He says ‘You’re diagnosed with MS and there’s nothing we can do.”  

 

Not even a death sentence, just a flat, disintegrating plain for a couple who had been inseparable for over a decade. She described to me a teen dream first meeting: I imagine them, supernaturally wholesome and cute, at the church fair where they met. He attended a private high school on a basketball scholarship,  and she was a shy junior high student pulled over to his group by a girlfriend. Susan still sees him in that moment,  in his cardigan, surrounded by his friends and an air of  masculine promise. She fell in love with him, her husband and the father of their daughters. She started a cheerleading squad for his basketball team.  He started walking her home, towering over the petite uniformed girl, bigger than life. What man could ever match this? “He would walk me to the gate, then to the bottom step, then the first step, then the second step, until the day we reached the top.  He kissed me after one year,  I was wearing stretchy pants. And I wet them. Nothing that happens to kids today can be that powerful, I am sorry for them.”

Amen.  My first kiss was at 14, on an Orlando Hyatt bathroom floor,with the lights on, during a choir field trip with a boy who told me to go “find myself” at college. That’s mine! Thus, I was charmed by their story, their romance.  They were married after college and started a family three years later. His symptoms started right after, and soon they were sitting across the from the chilly neurologist and his futile diagnosis.

 

She visited the library after the appointment; 1979 had merely hard-to-find research, some ghoulish case studies and besides that there was nothing. No pamphlets, no guides. Nothing. She sat sobbing in the reference room’s bathroom, hoping to save her husband and her life while her daughter Amanda played outside.  

 

Tom, the provider, the athlete, didn’t read these books, and he struggled. Angry, he hid the disease from his family for years. She began to help him get dressed, then get onto the toilet; humiliating rituals I understand well.  She worked full time and did these things in the morning, at night.  The disease was never spoken of, books bought but never read.  But she kept moving, working, the presence of unhappy inevitability hanging over them.  Plainly,  Susan chose numbness, never forgetting what she had read that day in the library. Not the most saccharine approach, but its what people have to do sometimes.

And one can understand. When I got home from Pinebrook that day, I read medical journals and books spanning the 20th century about coping with neurological disease to understand what Susan might have seen that day.  Foster Kennedy, who also advocated for euthanasia for severely retarded children over 5 years old, wrote in  1950: “The diagnosis of multiple sclerosis is not just a diagnosis.  It is also a prognosis, a prognosis of utter disaster to any human to whom it is given.” From a somewhat gentler publication, a guide to living with the illness, from 1976:  “One very important fact must be  faced when a diagnosis of Multiple Sclerosis is established. This is the necessity of living with uncertainty... The patient with MS, and the family, must confront the additional uncertainties of a disease of unknown cause, variable symptoms, indefinite prognosis or course, and no definitive cure. The burden of uncertainty is a heavy one, at time cruel.”

It’s awful to read something designed only to create resignation. However, that isn’t what I see, decades later, in Susan and Tom’s kitchen. I see grandchildren treating each other with tenderness, Amanda and her sister Kim’s husbands  joking with their in-laws. Altogether, there is wordless gratitude and support between all the generations.  “This was the life I was supposed to live,” Susan told me, simply.  A reflexive response to someone like her is to use the word ‘saintly’- that’s what people said about my father- but that’s not fair to Susan because love isn’t a favor.   It’s especially unfair to Tom, whose wheelchair sat outside the cluster at the kitchen table that day. He said little and his speech was labored, but he smiled a lot and his grandchildren beamed at him with that crazy, pure grandpa love.   He is adored, and after those years of anger and internalization, he speaks a little bit about his experience.  “At the time, in our experience, in my circle, we didn’t have this,” he told me.  “It turns out now... its not so rare.” He talks a little about his wife and smiles, and I wish I could see the picture he has of this beloved woman in his mind, of their 40 year romance.

Susan could still see Tom, a generous and whole young man,  by a carnival booth in his sweater.  What is my father’s private snapshot, when he remembers my mother that first time? Healthy, with a jet black bouffant and gleaming brass necklaces, hitting on him in a Long Island bar long before their unbearable end?  Do those pictures last forever for some people? And do they love the newer versions of each other just as much? Susan told me this was the life she was meant to have, so I suppose they do.

I saw Tom that day, speaking slowly, diminished in physicality but evoking paternal warmth.  I saw Kim and Amanda’s eyes on their father whenever he spoke, Kim nodding with particular understanding.  She, diagnosed with MS in 2009, is the second generation with this disease.   With that Jersey frankness, she summed how the family’s experience shapes the way she and husband Bobby raise Angelina, Ava and Robbie.  They were beginning lessons in life with that uncertainty of illness,  the uncertainty we can’t blame, fight, or predict. Tom’s grandchildren will be more educated in these realities as he recedes.  He used to take them for rides on his wheelchair, but he can't now.  He no longer can read. There are little pleasures- he uses the phone, cheers for his sports teams.  There is less and less to do everyday.  But that’ s only today.


“To be afraid of the unknown is really ridiculous.” Susan told me. “There will never be a guarantee for anything.” Mixed into the LaBarbera’s tight, loyal fabric are some terrible things. As much a part of this house as the kitchen, they demand inclusion, and are treated with patient, compassionate gestures. In my head, I mime them-  Amanda squeezing Tom’s shoulder from behind his chair, Ava and Angelina climbing into his bed and laying down next to him to talk. I secretly thieve these actions for amnesty one day.  I remember my mother, and the very real words we used, misfired, and avoided until the day it was simply too late and she couldn’t speak at all. I wonder how we might have communicated had I tried this vocabulary of quiet, acceptance; if I might still have a chance.