Taking Notes: A Love Story

In a world of Nicholas Sparks it’s hard to write something original about love.

Love is a well-traveled topic. One, I’m sure, you’ve taken plenty of notes on.

Love is patient. Love is kind. Love is engraved your heart and scrolled among the stars.

Love is in air. Love is an open door. And, if you find the right station, love is a battlefield.

Anytime you write about love you ink a fine line between cliche’ and Nicholas Sparks. So, in my attempt to avoid such fate, the only thing I can offer is a secret love story about love. So secret that when my wife reads this, she will know it for the first time.

I’ve written about my health issues and personal shame and failure but writing about love is something I’ve avoided. For me, writing about love is a little embarrassing. A little too revealing.

And plus, how do I write about love in such an authentic yet impenetrable way that it’s not the subject of dissection, comparison and judgment?

Truth is– you can’t.

It’s simple emotional physics (which should’ve totally been a 90’s emo band name).

To love is to want. And to want is to have weakness. Therefore, you can’t open yourself to love without subjecting yourself to dissection, comparison and judgment.

I fell in love with a girl when I was 16.

The first time I saw her standing in the blue painted threshold of the doorway to her biology class I just knew, with an absolute bone-certainty that I would marry her one day.

And 10 years later I did.

Even though that story is absolutely true, I understand you’re skepticism. And I don’t blame you.  It seems too easy and yet, at the same time, too impossible. Too Nicholas Sparks.

So I’ll tell you another story that’s more believable. Yet, in some ways, just as fantastical.

Cindy and I are sitting at large round table, the kind guests sit around at weddings. We’re in the back of a Las Vegas hotel ballroom, the kind couples rent for weddings.

Except instead of a DJ, there’s a UCLA professor at the far end of the ballroom. He’s standing on a stage, behind a podium. To his right is a movie screen holding an MRI of a human brain. A brain whose cerebellum is damaged. A cerebellum that looks a lot like mine.

The room is filled with people of all ages. Some people in wheelchairs. Some people clutching canes and walking sticks. The same haunted glow in everyone’s eyes.

We’re in Las Vegas attending the National Ataxia Federation’s annual conference for patients with neurological disease because seven months earlier I was diagnosed with cerebellar atrophy.

Cindy and I are surrounded by people of all ages stricken with rare neurological diseases. ALS. MS. Huntington’s Disease. Brain tumors.

Some people sit with their spouse. Some sit their parents. Some sit alone.

The UCLA professor is discussing advancements in stem cell research as a way of improving and repairing brain growth.

Cindy is beside me taking notes.

Her hand moves in small yet amazing ways. She is writing down what the professor is saying as fast as he is saying it.

Her penmanship is catholic school perfect. Her notes are well-spaced and organized and her margins are aligned.

It was a secret moment in my history. One I’ve never told Cindy about.

A moment of enormous fear yet as my eyes trace the ink-curls of her words, a small moment of enormous comfort and safety.  A moment where love was learned. A moment when I finally realized I was lucky enough to find a woman who cared more for me than I could possibly care for myself.

A moment that gifted me the eventual courage to roll my shoulders and write these sentences–

Let my cerebellum soften to oatmeal. Let my brain cells explode. Let my eyes go blind. Because there’s girl with green eyes standing in the blue doorway and she’s not moving. And she never will.

And that is what love becomes. After all the romance and celestial promises of the initial courtship, love becomes a lifetime of small moments that add up to make something enormous.

But even that seems Sparksian.

A chronically sick man whose hands are shaking, whose body aches, whose teetering on the edge of self-destruction is sitting beside his wife in a Las Vegas ballroom. They’re high school sweethearts. They have three children together. But seven months ago things suddenly got harder.

And yet she still takes notes.

As the professor speaks and the damaged brain that holds the screen looms like a thundercloud over the room with her free hand, she reaches across the table to hold his hand, to ease him, to feel his pain.

Be well,

Jay

 

Celebrating Victory with the Living (and the Dead)

On Superbowl morning I went to Forest Hills Cemertary wearing my Eagles jersey.

It’s February in Philadelphia and it’s cold and raining and my son is standing by my side and we’re looking down at the plaque marking the birth and death of my grandparents. Mike and Doreen.

I tell them about how the Eagles are playing in the Superbowl tonight. How they’re underdogs, been underdogs throughout the playoffs. A real Philadelphia story.

Never having performed the earthly art of speaking to the dead, my son stares at me and then quietly drifts towards the car.

I tell my grandparents I’m a bundle of emotions. Excited, nervous.

I tell them I think we’re finally going to win.

I tell them I’ll be thinking about them tonight.

I can feel Chase watching me. His nose pressed up against the car window. His 7 year old mind convincing itself that his father is a little stranger, a little more mysterious then previously thought.

An hour earlier, before the rain, I was staring out my kitchen window into the calm, gray morning and listening to sports talk radio.

Mary from Doylestown said she was going to wear her brother’s Eagle’s jersey tonight. She said her brother taught her the Eagles fight song and how after high school he enlisted in the Army and how on his first tour of duty in Afghanistan was killed by a suicide bomber.

Bill from Broomall said he’ll be watching tonight’s game from his recliner and with his father’s urn propped beside him. Like he’s done all season.

Then two things happened before the Jim from Norristown could finish his story about going to his first Eagles game at Franklin Field in 1960 with his parents who are now both deceased:

One, I was on the verge of tears. Serious man-tears. And two, I had a sudden urge to visit my grandparents.

My grandparents were casual sports fans. They celebrated when Philadelphia celebrated.

My grandfather was a Philadelphia police officer and would tell me stories about being down on the Veterans Stadium field, working security during Eagles games. How after the game he would visit the locker and talk to the players. Which, when you’re a kid, is just about the coolest thing in the world  –much cooler then talking to wet cemetery grass.

Beyond that, I don’t remember any conversations with either of them about sports.

But that’s not the point.

My grandparents were fans of life. Fans of their children and grandchildren. They taught me the importance of togetherness, community, celebrations and traditions. And since sports is a freeway that connects people, on Superbowl Sunday, I wanted my grandparents to feel a part of the biggest game in Philadelphia sports history. To feel a part of the living story again.

Later that day the Eagles defeated the Patriots to capture the first Superbowl title in franchise history. A franchise founded in 1933.

When the clock settled on 0:00, I hugged my mom and dad. I hugged my brothers. I hugged my wife and children.

Later that night, when the celebration quieted, I thought about my grandparents.

And I’m sure Mary, Bill and Jim were all hugging the spirits of their loved ones late into the night as well.

As children, our parents told us not to stress over striking out or missing a shot. They told us not to take it so hard. They told us that it’s just a game.

And now, as parents, we pass down the same sentiments to our children.

Don’t take it so hard. Let it go. It’s just a game.

Yet I know it’s not just a game. And my son now knows it’s not just a game.

Because hours before the Superbowl he listened to me talk to the dead.

Because inside the earthly boundaries of the game, rests something ethereal that connects the living to the dead.

A magical spell of muscle and bone that coaxes the dead sit up and smile and celebrate the joy of sports, the joy of life with us once again.

Be well,

Jay

Here are some Superbowl and parade pictures:

 

Why I Celebrated My Worst Day

When I decided to celebrate my worst day I had romantic dreams of baking a chocolate cake, coating it with vanilla icing and beautifully decorating it with some unabashed inspirational quote.

Here’s what happened.

It’s okay to laugh. Seriously. I know, it’s high fructose, high caloric train wreck.

Just in case you can’t read it, beneath the scattered sprinkles, squiggled in red gel is the iconic line from Bruce Springsteen’s Badlands — “Aint no sin to be glad you’re alive.”

Here’s why.

This past September 4th was a big day for me. An anniversary of sorts. So I baked and decorated a cake to commemorate the day.

On September 4th, 2013 I had my first MRI revealing my brain damage–large chunk of my cerebellum had degenerated.

The date has now become a personal milestone. In the days and weeks following September 4th, 2013 there was, as you could imagine, a quiet tension. The kind of quiet tension that lingers between the pages of hospital waiting room magazines.

With every test, with every confused doctor I grew more desperate, more convinced that I was going to die a young man.

Four years later my brain damage is still unaccounted for.

However, eighteen months after the MRI, a muscle biopsy revealed an autoimmune disorder, sarcoidodsis, that causes inflammation not degeneration.

Four years later doctors are still nosing through medical journals searching for precedent. They are still hypothesizing.

I say let them hypothesize. For the only fact that matters today is — I’m still alive. And according to the Boss, that ain’t no sin.

If the September 4th picture marks my worst day, a day which initiated the worst stretch of days I have ever experienced, I’ve learned that celebrating your worst day is an important step toward healing. Though I’m not physically healed, and may never be, mentally, emotionally and spiritually I’m stronger for having endured my worst day.

Everything can be taken from a man but one thing: the last of the human freedoms — to choose one’s attitude in any given circumstances, to choose ones on way. Victor Frankl author, psychologist, neurologist

Suffering is lonely work.

Often, when we suffer we alienate the very people who take us to our appointments, who hold our hand, who cry alongside of us.

It’s understandable that when we suffer we become selfish. We fall into ourselves. Yet by doing so we fail to recognize the anguish others are in because of our suffering.

Cutting cake (even a poorly decorated one) and celebrating your worst day is an important step toward healing.  A sugary reminder of how resilient the human spirit can be and how our lives, whether we want the responsibility or not, are the models that others will follow.

Be well,

Jay

What’s the one message about life you would share with your family?

I recently packed up the suitcase, left Cindy and the kids behind (with her permission, of course) and met up with a bunch of long-time friends in Puerto Rico for our buddy Marc’s wedding.

It was a stunning little ceremony, staged outside on a horse farm nestled in the lush Puerto Rican rain forest.

wedding1My friend Jack, a world-renown scientific program manager, a guest on the Power of Creativity podcast, and possibility the world’s worst basketball player delivered a mic-dropping best man speech. A speech fused with the right amount of humor, honesty, and whimsical little narratives to give the Puerto Rican cicadas pause.

wedding2As the speech unfolded, Jack recounted the subjects of the late conversations he and Marc had shared over the years. Dream cars, dream girls, million dollar inventions they should invent ( but never did).

He also relayed to the reception how he and Marc, both who had lost a parent to the ugly antagonist known as cancer, would often discuss the poignant question of…

“What’s the one message about life you would share with your family?”

In March of 2014, after I was diagnosed with cerebellar atrophy, Cindy and I flew to Las Vegas to attend the National Ataxia Foundation convention for medical professionals as well as patients of neurological disorders and their caregivers.

The NAF is tremendous organization dedicated to the “improving the lives of persons affected by ataxia through support, education, and research” and their conference provided Cindy and I, both green in the gray world of neurological disorders, a wealth of valuable information.

Ataxia is neurological disorder, of known (cancer,  MS, ALS) and unknown origins that causes incoordinations, tremors, weakness in all areas of the body.

My ataxia which effects my eyes, hands and legs is attributed to my cerebellar atrophy. And what caused my cerebellar atrophy? That’s the unknown. That’s the question no neurologist, psychic, or holyman as been able to answer.

Like hundreds of others, Cindy and I descended upon the desert looking for answers, harboring hope. A hope of hitting a jackpot of sorts.

Many people at the convention had been living with ataxia much longer then I had. Some were stricken to wheel chairs, some had gone blind, others had lost the ability to articulate words, their speech as inaudible as an tequila fueled wedding crasher.

At one point in the program Cindy and I were assigned to a conference room with people whose genesis of their ataxia was unknown.

We held hands, cleared our throats and listened to people share their stories of their eroding motor skills. How they feared leaving their house. How they lost their job. How ataxia ruined their marriage. How they can’t have sex. How they can’t hold their grandchildren. How they can’t tie their shoes. How they suffer from depression. How they tried to kill themselves.

And as I listened to their stories, watched the confusion and frustration and utter desperation snake across their face, bend the corners of their mouth and fill their eyes with tears, I began to wonder– if this was my future, was life worth living?

Three years later.

A warm, light breeze sweeps across a marble dance floor.

And I’m dancing.  

Or doing something that resembles dancing.

As Ice Ice Baby  fills the DJ’s speakers, as a full moon shifts through a leafy canopy and pulses a hard white light across the night sky, as I’m met by the unsolicited smiles of my friends in the heart of the Puerto Rican rain forest, it’s clear in that moment– a moment mixed with just enough absurdity and transcendence to make it seem like something I dreamt– that the one message I would share with my family is that life is absolutely, positively worth living.wedding3

Be well,
Jay