Sunday, August 30, 2009


(on launching my last child into college)

Your partner provides the balsa wood,
the sturdy glue, the engineering
You find some bright tissue paper in the
box where you collect gift wrap,
sparkle stickers
and feathers

You build it together and
When you've done the best you can
You drive to a windy spot
A beach where the ocean rolls and rolls like time
and bees circulate, looking for something
in the late summer heat

Your partner has remembered to bring the string,
He secures it, knowing,
where to tie the knots at the corners of the frame
He hands you the kite

You hold it out before you,
admiring the delicate colors, the fine tail you fashioned
Out of memory-light silk,
The precision of its construction,
the graceful curve of its spine.
It tugs at your hands, already caught in the wind

You turn, and start walking
Faster, then running
as your kite,
fills with freedom
you let go

It takes off
Unsteady at first, it wobbles up,
dipping this way;
and that;
a tipsy bird, a bit of loose newspaper blown down the beach

You walk backwards, squinting against the sun as
It climbs,

Your partner holds the spool,
which unfurls, demanding more string, more length, more line
as it finds its place,
bright diamond against the vast blue sky

- for Katie

Friday, August 28, 2009

These are the gifts

“You work hard, Amy. I watch you,” Barbara says, when she delivers my fruit salad to the table. As she walks back behind the counter, I notice the slight limp, the way her well-padded body lists slightly to the right, compensating for some pain in the back, perhaps, some bunion, some pebble in the shoe.

I do work hard. So does she. I write and I write, looking for the loose thread, the truth the truth the truth, like a person running through the rooms of a house in a fury, hurling aside the furniture.

Barbara works behind the counter, earning the grocery money--and the gifts she lavishes on the family she adores--since her husband went on disability..

“Everyone’s disabled,” my father says. “Some of us wear it on the outside; everyone else spends their whole life trying to pretend they’re normal.”

We overreact, we beat our children, we lie to the boss. We binge and purge. We watch porn, we talk to too much, we don’t know how to love. We’re addicted to drink, pill, caffeine, approval and haunted by our shortcomings: the stutter, the cleft palate, the fat ankles.

We talk about people behind their backs, living in terror that our secret shames will bleed though, bleed out and everyone will find out that underneath the masks and mirrors, we are…. What?

What are we afraid they’ll see? That we’re imperfect; that we’re wicked, weak, out of control? Do we fear they’ll find us uninspiring, unsophisticated, naïve, ill-informed or ignorant? Or are we all really terrified to be average—just a regular Joe, a living, breathing human who is sometimes happy, sometimes sad; sometimes up and sometimes, trying to get up, after falling down.

Oh, the peeled back self, the exposed and vulnerable truth of who we really are. Oh, how we run from it… when we should be running toward it with everything we’ve got. That’s where the juice is, the joy, the LIFE! And yet, how quickly even this becomes a homily, more new age blah, blah, blah to be Twittered ‘round the world.

The truth is…
The truth is…
The truth is…
I have no idea what the truth is.

It’s all just smoke and mirrors. We're all just pretending to go along. The Emperor has no clothes! Pay no attention to that man behind the curtain! The President is just another human, doing the best he can.

And you know what I mean.

How’s your ADD, your Anorexia, your Autism, your Food allergy? How's your Asperger’s, your PTSD, your PPD, your POS?

The truth is, every day we are born and die again. Just like everyone else.

I met Joe, a gregarious 70-something, at the cafe where I write and where, every morning, he meets two or three friends for coffee, a long talk about God and politics and some flirting with the pretty girls.
The other day, Joe sat himself down at my table and launched right into a conversation about dying.
“My brothers and one sister are already gone,” he told me. “Just me and one sister are left—and she’s got Alzheimer’s. I keep wondering, why am I still here? What’s so special about me? One day, I’m not going to wake up.”

Just yesterday, my father and I had been talking about the same things: Dying, being special. We’d decided that dying might be like being born backwards. “I imagine it would be a kind of dissolving,” I tell Joe. “Losing our singularity, our individuality and merging with God.”
Joe smiled. “I knew you were a deep thinker.” Then, he sighed. “I’m not scared of death,” he said. “It’s dying I’m afraid of. The whole dying thing—it’s too hard, too long.”
“Go in your sleep,” I suggested.
“I’m trying,” he laughed.

Dad says, “Everyone’s got a little post traumatic stress disorder. Life is hard.” And it should be, it’s meant to be. Not hard in an Oh-poor-sensitive-overwhelmed-me way. Hard in the way that a knife is at its best after meeting a sharpening stone. Hard in a good way.

Everyone is haunted by shadows, everyone has shit in their childhood that they are constantly working through, working on, dealing with. Each of us must manage our dark side, must deal with things we would rather stuff under the bed.

My grandmother was born with a huge blueberry stain on the left side of her face. Her father, a prominent physician tried to burn it off with acid.

“He was a 33rd degree Mason, you know,” Mom says. We’re sitting in the parking lot at Macy’s. Since we started talking, the sun has dropped behind the Mobil station across the road, rush hour traffic has ebbed away. “Back then, many people still believed that disfiguring marks like these were the sign of the devil, wages of sin.”

“How could he have done that?” I ask into the darkened car. Mom shifts in the passenger seat. “Oh, what fucked up, twisted things people do to each other,” I sigh, dropping my forehead to the steering wheel.
Mom pats my hand. She’ll be 80 this year., 60 years older than the day she fled Springfield, Illinois, and escaped the tangle of pathology that was her family. It’s only recently that she seems to have stopped running.

My father was born with cerebral palsy. He was also born with a good mind, a ravenous appetite for sports, for physical activity. He had a beautiful face and well-proportioned body. Yet his CP was the defining fact of his life. We might say, how sad, he had so much potential. But maybe the CP was the greatest potential of all. Who can say?

Last week, my son moved into his first apartment. Tomorrow my daughter, my youngest, heads to college. It hurts. I'll get through it. I will regret what I did not remember to do. I will remember, with joy, and an overflowing heart, what joys we managed to squeeze in. She will come home, we will share new ideas, new challenges, new sufferings and discoveries.

Fate and Destiny walk hand in hand. We have what we have—everyone must struggle out of some sort of poverty, some sort of disability, some disfigurement. Every moment of every day, a person with a disability must push against it, master it, against the context of a world designed for the able bodied. He is seen by others this way, placed into context by others this way. Treated this way, called “special”.

We are all so very special. We are all defined by our disabilities, by what we lack as much as by what we have. These are the rocks against which each human being must hone the blade of his life.

These are the gifts.

Tuesday, August 25, 2009


My question: How can we use Twitter to recalibrate the planet to love? As a tool for eco-development? As an Indra's Net, glittering with jewels of light?

Monday, August 24, 2009

Maybe I'm not....

Maybe I'm not special after all.

Maybe I'm not going to be a published author or a teacher. Maybe I won't ever finish a book, attain enlightenment, get a college degree or figure out my marriage, my family of origin, or what the freak to eat.

Maybe, just for a moment, I could set aside these lofty goals, these shoulds and coulds that have hounded my steps for so long, and just be...

Just for a moment.

What would be left? Who would I be? Add what, without them, would I become?
What if I just... let... them... go?

What then would I add to the conversation--to the flow of the world, to the people around me, to my community, to life itself, to God? Because I so desperately want to contribute.


This time, as my life cleaves open, one phase--motherhood--passing into the next... (and what that next is I don't yet know)... This time, as I stand at the lip of another cavern of possibility, what if, instead of filling its void space with busyness, fear-based projection and fantasy, I just let it be there.

What if, after we sit together for a time, this cavern and me, I see what it has to teach me?
What if, instead of racing ahead of life, I just sit here and listen?

Wednesday, August 12, 2009

My letter to the New York Times

Thought this might make a good story:

There's a resident at the Hebrew Home in Riverdale named Ray Ozarow. Right up front, I should probably disclose that he's my dad. He's been there about two years now.

What makes Dad's a story worth telling is this:

He's kind of a hero.

My father was born with cerebral palsy in Bayside, in 1927. His parents, founders of the first Orthodox congregation in Bayside, had two other sons already. At the time, there weren't many services for kids with DAd's physical challenges but my grandmother was determined to mainstream her son. She did, often bullying other parents into play dates. Though doctors said he might never walk or talk, Dad did both--going on to play sandlot baseball, compete on his high school track team, and off to college--NYU and Hunter, where he acheived two masters degrees: One in Social Work and one in Phys. Ed.

He met my mother at Welmet Camps, and they were married and raised three healthy (and beautiful, if I say so myself!) girls in Great Neck, NY. They owned a lovely home, celebrated holidays, vacationed in Cape Cod.

Dad accomplished a great deal in his life--he ran a summer camp for disadvantaged kids from the Lower East Side for many years--worked as Self Advocacy Coordinator for United Cerebral Palsy. More recently, he received a lifetime achievement award from Governor Pataki.

But that's not where the story is...

You see, now that he's in a nursing home, Dad's observing people who've been able bodied all of their lives and are suddenly thrust into the institutionalized care setting, without any training or resources to deal with the devastating impact of all they've lost. As lovely as the Hebrew Home is, and it is a gorgeous, comfortable setting, Dad says, "These people are coming from family homes, from a culture of holiday meals, of working for a living, of taking care of themselves. They aren't used to being disabled. It's a terrible loss for them and very disorienting. But I've been dealing with this all of my life. I can help them."

When he started talking this way, I thought he was just musing-as the elderly sometimes do, reviewing his life, wishing he'd done more, cataloguing accomplishments and regrets. But last year, Dad drove his power wheelchair down to the office of the Director of the nursing home and planted himself there until the director agreed to meet with him. Then Dad offered his services. "I can help set up programs and procedures that help better meet the needs of the residents," he said. "I've done this before."

It's the most frustrating project of his life-Dad can no longer use his hands to write or operate a telephone or recording device, and like all institutionalized care facilities, the HH is layered with entrenched and unworkable methods and procedures (and deep cuts in funding). Still, he's beginning to help.

Through his dogged (and I mean dogged) determination to communicate, he's talking with social work staff, offering his wisdom and suggestions about realigning every layer of the HH homes staff to the same mission.

On a personal level, he's created a way to reach out to our family across the country, by dictating emails, once a week, to a wonderful volunteer named Joan. Cathy Chandler, his social worker, receives and delivers our email messages back to him. And he's collected a whole notebook of emails from nieces, friends and of course, daughters.

Every time I visit, people stop me to say how Dad has inspired them. This is nothing new, it's happened all my life--like other people with disabilities, Dad inspires something in the able-bodied. A kind of, "If he can do it, maybe so can I."

But now, observing how Dad manages to offer comfort and a listening ear to other residents, helping them cope with life in a nursing home, impresses me most.

What impresses me is the way that Dad, bent over with spinal stenosis, facing his own challenges every day, manages to wake up every morning asking: HOw can I help people today? What can I do to be of service?

To me, that's the story of a hero. And I thought you might be interested in telling it.

Monday, August 3, 2009


I dont really expect that you wonder about me when no posts arrive in your mail box for a while. Still, I feel responsible to keep up my end of the communication.

For the time being, I'm completely wrapped up in sending my youngest child to college and all of the assorted shopping, worrying, paying for things and crying that goes with that.

Rest assured, once she and her older brother are safely tucked away at school, I'll be back to chew your ear again.

Happy rest of the summer!