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.

Humbled and Honored

My story, The Day I Learned I Could No Longer Jump (or learning to fly) was recently published in the National Ataxia Foundation’s quarterly journal “Generations”. 

I want to thank Stephanie Lucas, the Communications Manager of “Generations” for publishing my story.

I also want to thank all of those who read the story and offered their kind sentiments. I hope my story helps you tell your own.

Thank you,

Jay
 

The Scary Work of Redefining Yourself

It was this week, last year that I published The Day I Learned I Could No Longer Jump ( or learning to fly). It was one of the greatest leaps I ever took.

Here’s why.

Any writer who tells you they’re not worried about how their work will be perceived is lying.

Look dear reader, I want you to like my work. Scratch that — I want you to love my work.

I want you to read each post twice and share it three times.

I want you to think about me as you’re buttering your morning bagel or waiting for the elevator doors to open.

I want to make you laugh and cry. Give you chills and rock your soul and make you turn over the wonder and magic and mystery of your own life.

But in order to accomplish those Herculean things I need to be honest, authentic and share my story. I need to tell you things I’ve yet to tell my wife. That’s our agreement. And that’s why, sometimes, writing is incredibly hard.

In the quiet hours of life, I often think about my twelve weeks at the St. Lawrence Rehabilitation Center. About the new truths I learned. About how I learned I could no longer jump. About how quickly years of the personal definitions of me being a man strong and athletic crumbled to the cold linoleum floor on a gray December afternoon when an unassuming physical therapist asked me to jump.

What I tried to capture in The Day I Learned I Could No Longer Jump was the raw embarrassment and shame and sadness I felt in those rehab sessions.

What I didn’t tell you in that story was how scared I was.

The fall and winter of 2013 was the most terrifying stretch in my life. It wasn’t the thought of dying, which did hang heavy in those days, it was a fear of redefining myself. My brain was damaged and the doctors didn’t know why. But the scariest part was digesting the news that parts of me could only now be found in photo albums and in flickering reels of memory.

Take your parents or grandparents. Great people I’m sure. But they’re set in their ways. They detest change. They’ve got their favorite chair, their eternal pair of slippers. They’ve been buying the same toothpaste for 30 years. They’re comfortable. They resist to change. And it drives you crazy but they’re too advanced to redefine themselves. So you smile and accept it.

I knew that my season of physical rehabilitation was crucial. I knew I had to let go of who I was — an athlete, coach and begin the painful and confusing task of redefining myself as a writer — before it was too late.

Redefining yourself is not easy. It’s scary. You’re not a kid but you fear judgement and criticism the way you did in high school. And sometimes redefining yourself becomes dangerous work. Drugs, alcohol and other destructive habits become your new definitions.

But I’ve learned that if you redefine yourself positively and purposefully you can tap new potentials.

When you write your new definitions you find new ways to in be strong and empowered and your life is suddenly swirling with exciting possibilities. You discover new energies. New angles. You begin to realize your potential.

Aside from William Faulker, any writer will claim that editing while writing is a literary sin. You write and write and write then edit. They are separate adventures. But this is life. You can’t write, enjoy a cup of coffee, take a breath then edit your past. We must write and edit at the same time. You must redefine yourself as you go. And it’s unnatural. It’s hard. It’s really fucking hard.

But dear reader, it might just be the most important thing you ever do.

Be well,

Jay

The Day I Learned I Could No Longer Jump ( or learning to fly)

Six months after being diagnosed with cerebellar degeneration, six months after a neurologist examined an MRI of my brain, leveled his eyes, cleared his throat and said to me, “you should be dead or in a hospital bed” I’m staring at my physical therapist, Denise, and she’s daring me to jump...