This summer I’m writing a serial story entitled, “The Man with the Hole in His Brain”. This is Chapter 1.

The Man with the Hole in His Brain

And he judged of others by himself, not believing in what he saw, and always believing that every man had his real, most interesting life under the cover of secrecy and under the cover of night.– Anton Checkov

Chapter 1

A man is standing alone and shirtless in front of his full-length bedroom mirror.

He’s 38 years old and knows, with bone-certainty, he’s lucky to be alive–let alone have a doting wife, three lovable children, a warm and spacious house to live, parents who are still alive and still love him, a job he enjoys, food in the fridge and two cars fat with gas in the driveway.

He knows he’s blessed and that his world is a good place to live.

However…

…of course there’s a however. There has to be a however.

I recently taught a fundamentals of storytelling seminar at a local university. I will not lecture you on said fundamentals but your conviction to this story, and to all stories for that matter, hinges on the gravity of the however. However indicates a change, a conflict, a turn.  And if the however is big enough, desperate enough, it may compel people to do two extraordinary things: listen and feel. 

Tiger Woods was once laser-focused on his golf game however…

Anyway.

The man in this story, like characters in all stories–whether fact or fiction, has a secret.

He has a good life, one others often envy. And he’s a good man too. Loyal and honest. Quick to buy a frustrated friend a beer and listen to his worries.

However, when he’s alone and shirtless in the mirror he trembles with shame.

He’s ashamed his arms lack the thickness and sturdiness of a father’s arms. Ashamed his chest, sunken and poorly muscled, looks like two deflating balloons. Ashamed his shirt, when it’s on, is more like a pillow case hiding the soft and lumpy pillow underneath.

Five years ago doctors discovered a hole in the man’s brain. A hole that, doctors labeled, “potentially fatal.”

The doctors fed the man a daily diet of steroids and pain medications that the man willfully ingested and, in turn, willfully weakened his all his muscles, not just the ones hidden under the pillow. Soft and stretched, his body looks to be owned by a much older man.

The man stares long enough in the mirror to forget about his good life.

If it wasn’t for bad luck, I wouldn’t have any luck at all, he thinks.  He worries, as he often does, about the hole is brain. Will it get bigger? Will it kill me? Or like a hole on the beach, could the hole in his brain be filled sand, the bottom of a soda can, a broken flip-flop heel? Or maybe it could be filled with more scientific things like neurons and dendrites and axons.

He gets mad at himself, which he often does.

He blames himself, which he often does

He curses the hole in his brain, stares into his own eyes and wonders how his good world would look like without him in it.

Little footsteps rush down the hall and the man tosses on his shirt, turns to his dresser, pulls open a drawer and pretends to be looking for something.

“Dad, what are you doing?”

“Just looking.”

“Looking for what?”

The man pushes around some papers in the drawer.

“Something I lost.”

The youngest child, a boy, almost five with short brown hair, freckles doting his nose and who, when he tilts his head and smiles, reminds the man of himself. “My teacher said that when we lose something we care about we should just keep looking for it.”

The man turns back to the mirror. His eyes are deep blue like the child’s.  Below his soft chest,  beats the heart of a child–boundless and wild. A heart that yearns to play outside again. To run, jump, tackle, and swing. To sweat, to bleed, to get dirty again.  A heart that is much younger then the body that holds it.

However, there’s a hole in his brain. A hole that makes the man cautious, off-balance, and afraid.

The child stops in doorway, turns, “Dad, can you go outside and play with me?”

For five years the man has filled the hole in his brain with excuses and fear.

The man thought when he became a father he would be a big kid. Hat spun backwards, t-shirted ringed with sweat, playing in the backyard with his children on a hot Saturday afternoon.

“Not right now.” The man winces at his boy, “When I’m done looking for the thing I lost.”

The boy looks up and appears older then when he crossed into the room, “Dad, keep looking. I know you’ll find it.” The boy leaves and the man thinks about all the big things adults spend their lives trying to hide.

The backdoor opens then closes.

The man moves to the window, looks down, and sees the child, alone, kicking a soccer ball in the backyard.

Catching his reflection in the window’s reflection, the man pledges to his faded self to do something this summer to fill the hole in his brain so he could one day play with his child in the backyard again.


Post Script…

I want to thank everyone for being patient with me. For the past few weeks I’ve been experimenting with some different writing forms, as I continue the laborious process of discovering who I am as a writer.

Today, I consider myself a creative nonfiction writer. Tomorrow, however…

I gravitated toward creative nonfiction because I want to tell you a true story that mixes literary styles while producing both an entertaining and factually accurate story.

If you’ve been reading write on fight on for any stretch of time you’re familiar with my health struggles. In fact, you may even be tired of hearing about them. But, as weird as it sounds, I’m thankful for my health struggles. They’re what inspired me to pursue my lifelong dream of being a writer.  So I find it almost impossible to write about anything else right now.

Since summer is the season for trying new things,  The Man with the Hole in His Brain is a more ambitious, literary complex approach to what I’ve been trying to tell you for years.

I have an autoimmune disorder, sarcoidosis, which atrophied my muscles, weakened joints and vacuumed a hole in my brain.  A hole I often fill with excuses and self-doubt. The hole is where this story begins.

My goal this summer is to figuratively remove the trash festering the hole and fill it with moxie and resolve.

This summer I’m committed to regaining my coordination and balance, my ability to run and jump again. I’m committed to playing soccer again with my children and running a 5k in September.

The Man with the Hole in His Brain is a literary retelling of the successes and failures I endure this summer as I attempt to disbelieve the excuses I made for myself and believed for the past 5 years.

write on fight on’s tag line is “Stories told. Lives changed.” When I first started this blog my vision was to share other people’s stories to help change other people’s lives. And I did, but as altruistic as that was, I failed to recognize that you can’t change other people without learning how to change yourself.

I never realized that my story was the story I was trying to tell. And that it was my life I was trying to change.

Be well,

Jay

The struggles are real

Daily life is ripe with struggles.

The glowing check engine light, the dismissive coworker, slow Wi-Fi, the wavering religious faith, a snarky Facebook comment.

Yesterday’s struggles have been replaced with today’s struggles. And today’s struggles will be replaced by tomorrow’s struggles.

However, you must learn to separate struggles in two categories: empty and meaningful.

Empty struggles are pedestrian and often easily fixed.

Don’t entertain empty struggles. Let empty struggles entertain themselves. Empty struggles are also trivial. And if you devote time to the trivial, you yourself become trivial.

Meaningful struggles compromise your principles. They challenge your integrity, your creed, your philosophy, your ability to emotionally and intellectually grow.

Meaningful struggles don’t go away on their own. They breathe and wait for you to engage. So when you do engage– I recommend leveling your eyes, flexing your muscles, snarling something wild and fighting like hell until you’re victorious.

Be well,

Jay

These are better days

“Better Days” is one of Bruce Springsteen’s most underrated songs.

At the beginning, Springsteen sings about “sitting around” and “waiting for life to beginning.”

A position I’m quite familiar with.

Yet as the song continues, a rock transformation happens. He acknowledges that every “fool’s got a reason for feelin’ sorry for himself.”

He knows that for “better days to shine through” he must engage with his own life.  He has to quit the self-pity, the self-victimization charade that we’re all guilty of entertaining.

The song concludes with Springsteen announcing he’s “halfway to heaven and just a mile outta hell” but he’s “ comin’ home” as he repeats, with his all his raspy New Jersey spirit, “these are better days.”

It’s catchy, convincing.  A 4 minute reminder that better days only arrive when we finally  brave up and accept our lives, for better or worse. Nothing can be excluded. We must accept the good and bad, the joy and pain, the pride and shame.

Better days will only dawn when our flawed past is fully accepted.

Be well,

Jay

Nobody Cares and Other Truths I Learned During My Two Years of Writing

This week marks two years of showing up, sitting down and writing–everyday.

Some days I pumped out thousands of words. On others, I farted a few foul sentences and went about my day.

But such is the writing life.

When I first committed to writing, I held a secret position that green writers often hold– I wanted everyone to care about my writing as much as I did.

Whether it’s writing a book or losing 20 pounds we want people to acknowledge our efforts with a smile, a hug and the coveted big blue Facebook thumb.

When I launched my website I wanted people to stop what they were doing and care. I wanted people to read and be inspired. I wanted invitations to  guest speak at conferences and wanted strangers to approach me with a nervous smile, offer a compliment and ask for a picture.

Vanity? Absolutely.

But the novice is almost always too vain for their own good.

The novice falls in love with their own fiction. A love affair that, if it doesn’t end in divorce, will certainly pin them to a barstool or a therapist’s couch or sometimes both for quite a while.

Here’s What I’ve Learned

I’ve learned writers are architects.

We want people to slow down, take pictures, tell their friends and admire what we’ve built, brick by brick, word by word.

We want recognition for our ability to craft stories and mortar ideas that stretch into the sky and, if the timing is right, throw some cool shade across the world.

I’ve learned that every subject has already been written about by writers much more talented than myself.

I’ve learned that the novice would rather dream than work. The novice wants achieve maximum results for minimum effort.

Original artwork by Haley Armstrong

There are three phases of the writer: novice, intermediate and professional.

I’m not a professional. Stephen King and Annie Lamont are professionals. They can offer insight on how to gain access to the heavily guarded compound where the professionals work.

However, I’ve graduated from novice to intermediate. My finely matted diploma marred with failures, doubt, fear and marginal successes proves I’m now qualified to reflect on my education.

If you’re thinking of pursuing a writer’s life or striding into the gym later today,  here’s the hard truth– nobody cares.

This is not to demean or passively-aggressively guilt you into caring.

The novice writer thinks everybody cares. The intermediate writer writes as if nobody cares.

The novice writes for attention. The intermediate writes for herself.

The novice writer writes when she’s inspired. The intermediate writes until she’s inspired.

Though she does appreciate them, the intermediate doesn’t write for blue thumbs. She likes praise but knows how dangerous it is to weave definitions from the threads of praise.

The intermediate enjoys the strain of the workout. A gym rat. A library mouse.

The intermediate pumps out 3,000 crappy words just to find 500 good words.

The intermediate is busy learning about truth and doesn’t realize that by learning her own truths she’s helping others discover their own.

The intermediate knows that even though writing is a vanity project– meaningful, enduring writing is always about the reader and always laced humility, sincerity and vulnerability.

She knows that other writers are scratching out posts, articles and books faster than she can and she doesn’t care. When she was a novice she stewed with jealousy. She’s now genuinely happy for other people’s accomplishments, but remains focused on her own goals.

And the intermediate knows there are miles of untraveled truths that need visiting before she can even pull into the parking lot where the professionals work.

This post marks two years of writing everyday and publishing a piece at least once a week.

Tonight, I’ll celebrate with a cold beer and some Charles Dickens. And then, when the 14.9 ounces of self-adoration ends, I will quietly return to my computer write again–as if nobody cares.

Be well,

Jay

PS–Thank you to everyone who has made the journey with me over the years. Thank you to anyone who has shared my work, offered a line of support or gifted me a big blue Facebook thumb. Thank you for welcoming my writing into your life.

Accepting Uncertainty: The Most Important Question A Chronic Illness Patient Can Ask

The following post is part of the The January Project: Chronic Illness. A month long project where I research and write about chronic illness.  The information presented in this project is intended for educational purposes only.

I am not a doctor. I am a teacher and writer who, while being afflicted with two chronic illnesses, is trying to learn how to live a productive and peaceful life. 

With this project I hope to increase awareness, offer comfort to those living with chronic illness and offer clarification to anyone who knows a person living with chronic illness.


Why am I sick?

What did I do to deserve this fate?

Like a car accident, a chronic illness often slams you without warning.

One moment you’re cruising along, windows down, radio up and the next– you and your car are cartwheeling out-of-control through an intersection.

My symptoms happened overnight.

Literally.

One day I was coaching and playing soccer and the next day my vision was blurry, my head was spinning and my legs were so weak I could barely climb a flight of stairs.

That was August of 2013.


According to the National Council of Health nearly 50% of Americans have at least 1 chronic illness.

Approximately,  161 million people are currently struggling fears and frustrations of having a chronic illness.


On September 5, 2013 an MRI of my brain revealed that I had cerebellar atrophy–a deterioration of nerve cells in the cerebellum.

In April of 2015 a biopsy of my thigh muscle revealed I had sarcoidosis– a chronic illness that causes muscular and organ inflammation.

And even with those confirmations I was still so confused, so frustrated, so angry.

Why did I get sick?

What could I have done differently to avoid this fate?

If there was a God, why was he doing this to me?

A chronic illness unnerves you.

For years I endured moral freezes. I couldn’t think, decide. I couldn’t, as my old soccer coach would bark, “get my shit together.”

Like a high stakes game of hide-and-go-seek, success in life is often predicated on our curiosity, our desire to seek until we find what we are looking for.

But what happens when you’re sick and short on energy? What happens  after years of blood tests, biopsies, scans and observations experts still shrug and admit they don’t know?

What happens when you simply can’t find what you’re looking for?

Five years ago I did not realize that uncertainty is an opportunity for growth and change.

I was obsessed with questions like:

Why am I sick? What did I do to deserve this fate?

But those question lead me nowhere. Those questions only increased my confusion, frustration and anger.

Five years later I still have those questions but I’m in a much better place.

Why?

Because I edited down all of my questions into the most important question I’ve ever asked:

I’m sick…

..Now what am I going to do about it?

This question forced me to do two things:

  1. Accept the situation.
  2. Assume responsibility and take action.

It’s only natural when you’re suffering with a chronic illness to ask the unfocused, unanswerable questions. I did for years. But those questions are like a hamster wheel. They’re exhausting and repetitive and get you nowhere.

A question like, “why is this happening to me?” gives your illness power and permission to seize control your life.

You can not allow a chronic illness to impose its will on you.

You must go on the offensive, take action and attack for as long as you can.

Because taking action builds strength, confidence and independence.

Three feelings that I had almost forgotten about.


Here’s how I attack chronic inflammation:

Here’s how I attack my cerebellar atrophy:


The uncertainties of my illnesses inspired me to make greater investments into my health.

And five years later I’m finally off the hamster wheel.

I’ve made myself responsible.

Because when you’re grappling with a chronic illness you must push back, you must reclaim your health.

Because it’s your health and only you can do something about it.

Be well,

Jay


Related Original Writings on Chronic Illness:

What You Need To Know About Men Who Have A Chronic Illness And The Shame They Feel (Published on January 5, 2018)

What’s The World’s Greatest Lie (Published on September 14, 2017)

Why I Celebrated My Worst Day (Published on September 8, 2017)

20 Things My Chronic Illness Has Taught Me (Published on June 16, 2016)

So what are your bowel movements like? 13 serious questions I was asked on my first veganish Thanksgiving.

Almost four months ago I adopted a veganish diet hoping that it would relieve my chronic pain and lessen my steroid dependency. So far, it has. 

The workings of my new diet also stirred hearty conversation around the Thanksgiving dinner table when people realized my plate was void of turkey.

So here are 13 questions I was asked about my veganish diet while celebrating my first veganish Thanksgiving.

1. What do you mean by veganish?

Though I no longer eat meat and do my best to stay away from dairy, I occasionally eat foods that contain traces of butter and milk. So I’m a vegetarian and a casual vegan — I’m veganish.

2. Can you explain how your body feels different now that you’re on the diet?

My autoimmune disorder causes inflammation in my joints and muscles. And meat and dairy are proven to cause inflammation. So I believe a meat and dairy were further compounding my inflammation issues.

Pre-diet most mornings were rough. I felt as if the night before I had run a half-marathon wearing a lead track suit and snow boots. My muscles and joints would be tired and sore before I hit the snooze button. However, since the diet, when I wake up I’m not in pain. It’s funny– having endured so many rough mornings I actually forgot what it’s like to wake up and not be in pain.

3.What food do you miss the most?

It varies. For a couple of weeks I really wanted a real all-beef hot dog. So to satisfy my craving I tried a meatless hot dog that looked, smelled and tasted a little like Play-doh. But please know that not all vegan food tastes like a children’s toy. Some stuff is really good. But apparently duplicating the natural deliciousness of a hot dog is really tough.

4. Do you have a favorite vegan meal?

I’m still a novice in the art of vegan cuisine. In the last four months I’ve kept things really simple. I’ve eaten a lot of oatmeal, fruits, vegetables and peanut butter. However, I recently had chicken sliders made by Gardein which were quite tasty and paired nicely with a Sam Adams Octoberfest.

5.What advice would you give if I wanted to try a veganish diet?

Like any form of self-improvement you have to commit to your future-self. To suppress temptation, I’ve found that visualization really helps. I visualize my future-self exercising and playing soccer with my children again. You can find new levels of intrinsic strength when you combine physical practice with visualization. And this visualization is more satisfying then any hot dog could ever be.

6.Since you became veganish have you had a cheat meal where you ate meat?

No.

7.Have you eaten fish?

No.

8.Do you now do other veganish things like hug trees?

Only for this picture.

9.Are you going to try to make your wife and children adopt the diet?

This one is tough. Of course I want them to eat healthier, but adopting a new diet must come willing and naturally. I fear that forcing my new eating habits upon them may stage a rebellion. I hope that by modeling healthy eating habits they will adopt better habits themselves.

10. Do you take any vitamins or supplements?

Yes. Twice a day I take Vertisil for a balance and dizziness issues. At first I was skeptical, however it makes a huge difference. When I miss a dose I feel off-balance and dizzy. You can order Vertisil on Amazon. It’s $40 for 60 pills.

I also take two vitamin packs a day to ensure I’m getting enough vitamins and nutrients. The Peak Performance Total Health Vitamin Pack is a Melaluca product. The packs consists of 12 different supplements that support the major systems of the body. 60 vitamin packets costs $131.89.

11. Aren’t you always hungry?

No. When I’m hungry I eat. However, since avoiding meat and dairy I simply do not think about or crave food as much as I did before.

12. Do you think quitting meat and diary cold turkey was the best way to change?

Committing to anything is hard, daily work. At first I was afraid to commit. So I lied to myself. I said I would gradually change — cutting out meat and dairy one meal at a time. But I secretly knew if I wanted to change I had to fully commit since gradual commitment often takes more self-discipline then full commitment does. If I wanted to succeed I had to go all in. And I plus, I was motivated. I was tired of feeling like shit.

13. If you don’t mind me asking, what are your bowel movements like?

They’re once a day and they’re spectacular.

Be well,

Jay

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