The Pilgramage (or why I really went to Atlantic City last week)

“Everything dies, baby that’s a fact
But maybe everything that dies some day comes back.
Put your makeup on, fix your hair up pretty
And meet me tonight in Atlantic City.”

Bruce Springsteen, Atlantic City

Last Friday I made the 60 mile pilgrimage from Philadelphia to the Atlantic City, New Jersey to present my writing workshop “Learn to Write like No One is Reading” at New Jersey Educators Convention.

The workshop, a culmination of strategies and experiences I’ve accumulated over the last 15 years of teaching, explores how teachers can use storytelling as an instructional practice to deepen student learning while helping students further embrace the writing process.

The workshop was well received by the audience. They actively participate, smiled, laughed at my jokes and from what I could tell, left with at least one new strategy to use in their classrooms.

For the last few months I’ve been making presentations at various professional learning seminars. And I’ve come to really enjoy talking literacy and helping educators facilitate classrooms that promote writing and storytelling so to inspire their students to become better writers.

But if I’m being purely honest — the real reason I went to Atlantic City last week to present a writing workshop was a purely selfish one.

The Real Reason

In September of 2013 an MRI revealed that I had suffered significant brain damage.

However there was no clear catalyst — a car crash or a fall — to warrant such loss of brain matter so quickly.

In October of 2013, after the Director of Neurology at Jefferson University Hospital examined my MRI he acknowledged majority of my cerebellum had died, suggested I start testing for every known debilitating and fatal disease and then asked if I had long-term disability insurance.

“No.”

“I can’t predict what will happen to your brain,” he paused and looked over at the MRI still displayed on his computer screen, “but if you can somehow acquire long-term disability insurance I think you should.”

The Silver Lining

During its annual Convention, the New Jersey Educators Association has a no-physical-required, no-questions-asked open enrollment period for its long term disability insurance.

The only caveat was you have to enroll in person at the Convention in Atlantic City.

So in November of 2013, as mom drove the 60 some miles to Atlantic City, we outlined my plan —  enroll in long-term disability insurance and brave on long enough for the paper work to process so that when I when inevitability lose the ability to speak or see or lose muscle function and can no longer work, my family would’t be so financially burdened.

When mom dropped me off outside the Convention Center, I told her to circle around the block because I wasn’t going to be long. I guess because when your life is undergoing a massive reconstruction sometimes you have no choice but to work as fast as you can.

I mazed through the Convention floor until I found the Prudential Insurance booth where I asked a few questions, looked at a few charts, enrolled in the long-term disability program, hustled back the way I came, walked out of the Convention Center, into the cold November sunlight and waited for mom to pick me up and take me home.

The purpose of a pilgrimage is about setting aside a long period of time in which the only focus is to be the matters of the soul. Many believe a pilgrimage is about going away but it isn’t; it is about coming home. Those who choose to go on pilgrimage have already ventured away from themselves; and now set out in a longing to journey back to who they are.” 

L.M. Browning, Seasons of Contemplation: A Book of Midnight Meditations

Last Friday I selfishly trekked 60 miles from the Philadelphia suburbans to the Atlantic City Convention Center.

In a way, I found something redemptive in those hard-earned miles. And though skirting pot holes and grinding through traffic can not repair the damage in my brain, it did remind me that somehow I’m still very much alive and that I still have a story to tell.

Be well,

Jay

How I Finally Kicked Prednisone’s Ass

After a three year fight with the infamous steroid Prednisone — I’m proudly standing in the middle of the ring and raising my arms in victory.

In July of 2014 my rheumatologist prescribed a moderately high daily dosage of 35 milligrams of Prednisone to relieve my chronic inflammation and joint pain caused by the autoimmune disorder — sarcoidosis.

The morning after taking my first dosage I felt awful. Like frat party hung over awful. Nausea, headache, hot flashes, exhaustion.

Then, 48 hours later, while vacationing at the New Jersey shore I felt like Superman. Tossing the football around with my sons, swimming in the ocean, riding waves like I had never been sick.

The Problem

Prednisone will relieve pain and inflammation. But nestled inside those little white pills is a real danger. Long term exposure to Prednisone can lead to a weakened immune system and cause weight gain, depression, diabetes, osteoporosis and a cavalcade of other fine ailments.

Prednisone is not a cure. It’s a mask. A contradiction. It reduces inflammation and it improves the immediate quality of life while silently and slowly destroying bones and organs.

For the last 3 years I have struggled to reduce my dependency on Prednisone. Following my rheumatologist’s instructions I began slowly weening off the drug— 5 milligrams at a time. I worked down to 10 milligrams a day but every time I dropped below 10 the pain and inflammation would return and intensify.

My rheumatologist explained that I should prepare to for a life sentence with Prednisone.

While on Prednisone, I gained about 20 pounds. When I broke a bone in my foot, it took nearly 5 months to heal — tripling the amount of time it should have taken to heal. And though I was never diagnosed with depression, I did endure long bouts helplessness and loneliness which I believe was triggered on my dependency on a drug that was murdering months of my life away.

The Challenge

Over Labor Day weekend, my good friend Casey challenged me to a two-week vegan challenge.

At first I balked.

How could I, a life long carnivore, give up t-bones and hot wings? It wasn’t me. I wasn’t a vegan. I don’t wear sandals. I don’t hug trees.

I sent him a text saying I would think about it.

And I did.

I sent another text explaining that I would try to slowly ween off meat and dairy — one meal at a time.

Then I thought about it more. I thought about my future-self bloated, ripe with diabetes, brittle-boned and blind. I thought about my children. About playing football on the beach again. I thought about how helpless I felt. And I thought about dying young.

So in a flicker of bravery I said fuck it. Two weeks of no dairy, no meat. Cold turkey. Let’s do this.

Why Vegan?

Casey also told me to watch the documentary, “What the Health, an unflinching look at how the meat and dairy industries are sleeping with the government and how meat and dairy foods trigger so many autoimmune and inflammation issues.

So I watched it. At first I was skeptical and even a bit naive. Why would my government, the one I Pledge Allegiance to every morning, lie about the importance of milk? Humans need milk. Milk does a body good. Right?

Understand, I’m not a doctor. I’m just a guy with a blog and autoimmune disorder who’s trying to live his best life. But if you’re struggling with inflammation or an autoimmune illness I would recommend looking at your diet. You may realize the food you’re fueling your body with is actually the stoking the fire of your illness.


In his article , “How Does Meat Cause Inflammation?”, Dr. Michael Greger explains how a single meal of meat, dairy, and eggs triggers an inflammatory reaction inside the body within hours of consumption.


The Victory

After smashing through the two weeks, feasting on only plant based foods, something happened.

I felt good. Like really good. Like how I felt during the first few weeks on Prednisone. I was feeling so good I decided to abstain from Prednisone for one day to see what would happen. I did. And I felt great. Then one day without medication turned into two. Then a week without Prednisone passed. Then another week. And suddenly I was living a Prednisone-free life.

When I decided to forego my medication I did not consult my doctor. I made a simple, conscious decision to improve my own health.

I’m learning that the most unsatisfying thing is to be a spectator to your own life.

~~~

I’ve been vegan for 8 weeks. I’ve been Prednisone-free for almost 6 weeks. I wish I could tell you that it’s been a hard lifestyle change but it really hasn’t. Sure I miss bacon and cheeseburgers and bacon cheeseburgers but don’t miss the pain. I don’t miss the dependency. I don’t miss being a spectator.

I’ve lost 10 pounds in 6 weeks. My inflammation and joint pain have completely disappeared. And most importantly I no longer feel helpless. I have gained control over my health. I’m now in the ring, proactive in my fight, which is the most crucial step for anyone living with a chronic illness.

I’m not symptom free. Sarcoidosis caused irreversible brain damage that effect my balance and vision but since converting to veganism I’ve found a fighting spirit I thought I had lost.

I just think if you can find a reason to fight — and there’s always reason to fight — if you can make changes, if you can find the courage to roll up your sleeves and trade punches with your illness you’ll learn you’re a hell of a lot tougher then you ever thought you were.

And you may realize that you were the champion your life so desperately needed all along.

Be well (Eat well),

Jay

I want to thank my friend Casey for challenging me. I owe you brother. I guess some times we all need a push to find our better selves.

What’s the World’s Greatest Lie?

It was a tradition of sorts.

In the initial months following my diagnosis, after each doctor’s appointment, I would go to the bar

Given my deteriorating health, maybe a few pints and a plate of fried pickles was not the most constructive response, but sometimes nothing soothes a fractured soul like the warm panel walls, a friendly jukebox and the comfort foods of a corner bar.

I remember sitting with my wife and parents and two brothers, talking through the details of my appointment in low, weighty voices.

We had drinks and ate deep fried vegetables and to snap the tension, someone would say something funny and we’d laugh, but not too loud. Because, now was not the time for laughing loud.  Now was the time to make sense of bad news.

I remember the hallow clinks of pint glasses and finding things to do with my hands– bending coasters, tearing bar napkins into confetti–and feeling helpless and powerless. Like sitting in the last pew at my own funeral.

For awhile I believed there was nothing I could do. It was final–I was stricken with some rare disease. Period. And I remember believing how utterly unfair it was.

If our language confirms what we believe, relying on the phrase “it’s not fair…” cements our belief in the world’s oldest lie, which according to the novel The Alchemist is:

At a certain point in our lives, we lose control of what’s happening to us, and our lives become controlled by fate. That’s the world’s greatest lie.”– from The Alchemist by Paulo Coelho

A few years ago, a student suggested that I start a blog.

Why?

Because sometimes you say interesting things in class.

Sometimes?

Yeah, sometimes.

Not to go all Hollywood here, but in serious ways this blog, saved my life.

Because I’ve learned that it’s not the bad news that matters, it’s our response that does.

Our self-victimization vexes others to where they will lose patience and tune us out. Their previous pity sours to apathy.

By bemoaning our bad news, we empower our bad news. We waste vital energy needed to command a positive response to conquer such bad news.

And plus, self-victimizers with their bloated bellies of self-pity and self-delusions make for terrible drinking partners.

Be well,

Jay

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

The Plan (or why I dropped out of grad school and started my own business)

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We enter adulthood with a plan. Maybe it’s hashed out over a cup of coffee or maybe a shot or two of tequila but nonetheless we were once pie-eyed dreamers standing at our threshold, staring out into the future, sketching a map that appeared direct and seamless and promised us the life we thought we desired.

Four years ago I rolled up my sleeves and went to work on my plan.

A plan that made professional and financial sense. A plan that was, in my opinion, neat and uniformed and albeit a bit boring–it was a plan that made sense.

When I shared the plan people smiled, nodded, raised a glass and congratulated me on my initiative.

The praise and support felt good. It was seductive and reassuring. Yet underneath my smile, my thin, freckled topography there brewed fear and uncertainty.

I could feel myself falling into a professional life I didn’t want.

I was allowing money and the silvery thoughts of a mahogany desk and a gold-plated plaque with my name engraved on it guide my compass.

And in my pursuit of such frivolous things, I ignored the pull of passion.

I ignored that internal voice, the one we all have, but the voice we’re quick to dismiss, as I turned toward the thing I despised the most: inauthentc

The plan

In January 2013, I enrolled in grad school to earn a master’s degree in educational administration, a move that would score a principal job, and an office with a bathroom and a secretary to field my phone calls and fetch my coffee.

Now, I should have halted the plan when my two main objectives were:

  1. enroll in the cheapest grad school program possible
  2. complete the course as quick as possible

I should have known when I was willing to invest money but not time, not energy that I was chasing down someone else’s dream. 

I should have known when I wanted the rewards without the work.

I should have known when the voice inside was screaming, “NO!”

The lie

Have you ever told a lie, then convinced yourself it was the truth?

I have.

That’s what grad school was like for me. I told people it was what I wanted when I didn’t.

I was living a lie and it was awful.

Like being wedged in a relationship you no longer believed in. I stayed committed because it was safe. It was never a matter of love or passion. It was a matter of uniformity.

It was the most inauthentic stretch of time in my life.

The moment of truth

I consider myself lucky.

My moment of truth was blunt, like a hammer strike to the forehead.

It came in the form of an MRI. An MRI that revealed a hole in my brain. A rare autoimmune disorder had attacked my brain, killed a bunch of cells and left me with a hole in my brain.

(If you haven’t heard this story check this out)

I often think if my brain remained intact how I probably would have earned my degree, became a principal, and how I probably would have never written this sentence.

Yes, my bank account would be bigger but would I honor and celebrate the fleeting paradigms of time and energy the way I do now?

And yes, I would have my health but what about self-respect? What about passion? What about authenticity?

The new plan (AKA Do You)

I can only equate that living your ideal life in the privacy of your own mind instead of living it out loud is equivalent to hell on earth.

Three years ago I dropped out of grad school. I’m only 3 classes, 9 credits from earning a degree in educational administration.

And I don’t care.

A few weeks ago I signed the paperwork and made Write on Fight on a limited liability company.  A company dedicated to helping people of all ages and levels not only improve their writing skills but to embrace the power of writing. A company committed to helping people tell their stories.

Right now, Write on Fight on LLC. is a just little company with big dreams.

And, admittedly, I’ve got a lot to learn about managing, operating, advertising and sustaining my own business. But I’m on the verge of turning  37 and I’m very, really, super… I’m fucking excited to get started.

A few weeks ago I told someone that I was 9 credits away from earning a masters degree. They were shocked and told me I should go back to school immediately. When I tried to rationalize they pressed. They said how it was a financial and professional mistake not going back. So close, why not finish?

I smiled and let them have their opinions.

Because sometimes that’s all you can do.

Because the facts remain– I woke up this morning with a hole in my brain. I will wake up tomorrow with a hole in my brain. And wasting money and, more importantly, time and energy on something I’m not passionate about will not fill the hole in my brain.

So it’s only fitting, on St. Patrick’s Day, to let Ireland’s greatest writer say what I’ve been feeling since my moment of truth three years ago…

Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age.–James Joyce

Be well,

Jay