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