Now and again, I'll be blogging stories from the book. My first is from Tom and Susan LaBarbera.
An aversion to carpeted seats, lonely strip mall highways and bus drivers that scream so belligerently at passengers they pant reaffirm how truly far a 30 minute ride to Jersey feels. I huddled in my seat to Pinebrook to meet Tom LaBarbera, one of the few people I'd meet with Primary Progressive MS- the version writers lazily script for nightmare episodes of SVU, the one that you think of first when you hear someone has it.
Stepping up to Susan and Tom’s sloping yard, I admired the idyllic quiet, the green, the ambitious mosquitoes. 3 generations- Susan and Tom, daughters Amanda and Kim, their husbands and kids- were converging in Susan’s kitchen. It was an unlikely classroom, setting for a lesson in the silent language of empathy when words aren’t always accessible. I wouldn’t have known it from the noise, though. The fridge door slamming, toddlers yelping and the family discussing optic neuritis apace with lacrosse tryouts and gardening at chaotic speeds and volume. Except when Susan, Reiki master and matriarch talked- then it became quiet. The kitchen was silent as we all sat together over lunch, as Susan emphatically described the day she and Tom learned of his diagnosis: “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”.
cold hearing this, don't you? Not even a death sentence, just a flat,
disintegrating plain. This was 1979. She visited the library afterward
and there was nothing- not a pamphlet, not a recommendation. Nothing.
She sobbed in the reference room’s bathroom, the book next to her, a
pivotal moment in the life of a couple who had been inseparable since
they were teenagers. 1979, with its wispy and hard-to-find research, some ghoulish case
studies. I sought out medical journals and books about coping with
neurological disease from throughout 20th century to see what baffled,
terrified people read.
From Foster Kennedy (who also advocated for euthanasia for severely retarded children over 5 years old), 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.”
A 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.”
Tom, the provider, the athlete, didn’t read these books, and he struggled. He was angry. He hid the disease from his family for years. She began to help him get dressed, then get onto the toilet; rituals I know. She worked full time and did these things in the morning, at night. The disease was never spoken of, those 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 while their daughter Amanda played nearby. Not the most saccharine approach, but its what people have to do sometimes.
“This was the life I was supposed to live,” she told me. One’s inclined to call her a saint- that’s what people said about my father- but that’s not very fair to either Susan or especially Tom, whose wheelchair sat outside the cluster at the kitchen table. He said little and his speech was labored, but he smiled a lot and his grandchildren beamed at him with that crazy pure love. It's not fair to call her a saint because he is still a person, if, in some ways, changed and diminished. But he is adored.
“At the time, in our experience, in my circle, we didn’t have this.” I wanted to ask more, didn’t. I think I was afraid to ask a man what it's like to lose his power, especially when it was so integral to his identity. He finished, “It turns out now... its not so rare.”
I imagined them as teenagers, supernaturally wholesome, 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 saw him,
still sees him, in that moment. Tom wore a cardigan and stood next to a
booth. Surrounded by his friends and an air of masculine promise, she
fell in love with him, her husband and the father of their daughters. I
imagined this. 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.”
Her candor stirred me. Unadorned chemistry isn’t a particular feature of a chubby, sarcastic Long Islander teen’s life in the 90’s. My first kiss was at 14, on an Orlando Hyatt bathroom floor during a high school choir trip with the lights on. I wrote him a note in regards to the certainty I possessed that we were meant for each other. He, a senior, handed it back to me and gently suggested I go to college and find myself. We met up again Thanksgiving break my first year in college; he tried to have sex with me in his parent’s den and I blurted out I didn’t want to get herpes (a de rigeur STI reference for college freshmen). That's the story of my first kiss.
So I was impressed by Susan’s teenage instincts which, against our understanding of the age group, tend to be horrible. They were married after college and started a family 3 years later. His symptoms started right after. But she can still see Tom, a generous and whole young man, at a fair in a sweater. What does my father see? My mother, healthy, with a jet black bouffant and gleaming brass necklaces, hitting on him in a Long Island bar long, long before that unbearable end? This was a few years before Susan and Tom took secret snapshots of each other in front of a carnival booth. 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 live, so I suppose they do.I saw Tom that day, speaking slowly, diminished in physicality but no longer locked in rage. I saw Kim and Amanda’s eyes on their father whenever he spoke, Kim nodding with a different understanding. She, diagnosed with MS in 2009, is the second generation with this disease. With her appealing 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, written about decades before, the one we can’t blame, fight, or predict. They were, are, nonexempt.
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 for
their safety. He no longer can read. There are little pleasures- he
uses the phone, cheers for his sports teams. But there is less and less
to do everyday.
But that’ s just today. “To be afraid of the unknown is really ridiculous. There will never be a guarantee for anything. And everything is mixed.” 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.