What You Need To Know About Men Who Have A Chronic Illness And The Shame They Feel  

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. My hope is to increase awareness to help those living with chronic illness and to offer clarification to anyone who knows a person living with chronic illness.


They were tough. They carried all the emotional baggage of men who might die. Grief, terror, love, longing–these were intangibles, but the intangibles had their own mass and specific gravity, they had tangible weight. They carried shameful memories. They carried the common secret of cowardice barely restrained, the instinct to run or freeze or hide, and in many respects this was the heaviest burden of all, for it could never be put down, it required perfect balance and perfect posture. They carried their reputations.

— Tim O’Brien The Things They Carried

No one prepared me for the shame that came with a chronic illness diagnosis.

In the initial doctor appointments, after I was diagnosed with cerebellar atrophy, I was offered pamphlets on healthy eating, effective communicating with your spouse and the importance on scheduling and keeping doctor appointments.

But no doctor leveled their eyes into mine and explained that along with the physical ailments of my illness I was going to feel shame. Heavy coats of shame that weigh me down, make it hard to move, hard to breath.

No doctor warned me about the shame I feel every time my children ask me to ride bikes with them or my friends invite me to play basketball or the light bulb burns out in the hallway and I have to ask my wife to climb a ladder and to change it.

Somehow the male ego has skirted 200,000 years of evolution.

Both ancient and modern males fear weakness and dread failure. They crave strength and victory. They pride themselves on being a provider and protector.

Modern men avoid doctors appointments and hospitals and undersell pain (except when we have the flu). We don’t admit when something is wrong or even acknowledge something that may be perceived as weak. When something bothers us we often emotionally recoil. We become distant.

Men we would rather be labeled a loner then a loser.

Because men define themselves by their ability to do impressive things. Things that require strength and stamina. We are independent, prideful forces who find and polish important hunks of our identity from our ability to do physical things: run, jump, climb, protect, carry and build.

So when we are suddenly dependent, when we lose our physical abilities, our capacity to do impressive things– we lose ourselves.

For 33 years I defined myself by the games I played. I was an athlete.

Here I am with a close shave (and a broken arm) playing against Arcadia University (October, 1999).

As a child and through my teen years I played soccer, baseball and basketball. In college I played varsity soccer. Throughout my 20s and into my 30s I coached high school soccer and played third base on a competitive softball team.

Then I got sick.

I was unceremoniously forced into retirement.

I was patient now.

A weak and wounded patient.

Normalizing: A Crucial Step.

Research has shown that “normalizing” is a crucial step for anyone, especially prideful males, living with a chronic illness.

Normalizing means a willingness to adapt to a new life of chronic illness. It’s having the integrity to be more resourceful and find or invent ways to minimize the impact the chronic illness has on daily life. It also requires letting go of the past, letting go of dreams and aspirations  and placing a greater value on the present.

However, when a patient refuses to normalize their illness by hiding their limitations, a patient may cause additional physical damage as well as deepen their shame.

When ill people normalize symptom control and regimen, they increase their capacities and maintain normal health.

Theoretically, normalizing is a logical step for a chronically ill patient — refusing to let a chronic illness control your life, forge your identity.

I learned that normalizing can take years of accepting before conceding. For me, normalizing meant my chronic illness had won. It meant I was a loser.


A side note: The difference between shame & guilt

When I began this research, I was interchanging shame and guilt.

Though shame and guilt are close cousins, there is a distinct difference between the two.

According to Dr. Brene’ Brown:

Shame is a focus on self. Guilt is focused on behavior. Shame is “I’m bad.” Guilt is “I did something bad.”

With some digging men can admit guilt. But shame is much deeper. Shame is buried. Shame needs an excavator.

Men are not immune to shame.

We often just hide it better than women.


I still wrestle with shame.

It’s been five years since my initial diagnosis and I am still trying to  normalize.

And I know I shouldn’t be ashamed of my illness but some days I am.

I am a husband and a father. The leader. The patriarch. I am suppose to be physically strong. My family expects me to be strong. You expect me to be strong.

But some days I’m not.

Let me be clear– this was a really hard piece for me to write.

I’m prideful. I’m concerned about my reputation. I’m worried about what you will say about me when I’m not around and if it will be awkward the next time we see each other.

And yet I know if I do not announce my shame I will continue to struggle to normalizing my chronic illness.

I want you to know I have never talked to anyone before about shame.

Ever.

Shame has never been a hot subject between hands at a poker game or between bench press sets at the gym.

(In fact while writing this, I kept thinking about what the guys in my fantasy football league would think and say. How much ribbing I would take at the post season banquet.)

It’s much easier for men to silently struggle with shame.

So we do. We build facades, we deploy smokescreens. We lie to you. We lie to ourselves. And we do the thing we’ve been trained to scorn the harshest–we hide.

According to Dr. Brene’ Brown, shame is highly attributed to addiction, depression, violence, and suicide.

I personally know men, seemingly strong men, who have fallen victim to all of those dangerous behaviors.

And I know if I didn’t create Write on Fight on and share my story with you, I would have fallen victim myself.


Here are some resources if you want to learn more about shame…

I highly recommend watching Dr. Brene’ Brown’s Ted Talk “Listening to Shame”. The 20 minute talk offers tremendous insight on how damaging shame can be. I personally enjoyed the last 5 minutes where Dr. Brown  discussed how shame affects each gender differently. Also, this video  provided me some much needed motivation when I was afraid to write this piece.

The Handbook of Social Studies in Health and Medicine– It’s a bit technical but provided interesting research on experiencing chronic illness. You can find many excerpts of the book on “Google Scholar.” I found Kathy Charmaz’s Experiencing Chronic Illness (2.6) really helpful with my research. 

Shame is Why We Fight— Published on thegoodmanproject.com, this article explores how and why male shame is often the root of tension in a marriage, and if not addressed, can quickly deteriorate a marriage.


Related Original Writings on Masculinity, Shame and Chronic Illness:

The Scary Work of Redefining Yourself (Originally published on November 3rd, 2017)

The Day I Learned I Could No Longer Jump ( or Learning to Fly) (Originally published on October 26, 2016)

A Vulnerable Man 


6 Reasons Why You Should Tell a Story on the First Day of School

In 8 Reasons How To Be A More Interesting Teacher This Year I explained stories are how I often communicate complex concepts to my students and how stories help heighten student engagement.

With that being said, there is no better school day than the first day to engage students with a story.

Here are five reasons why you should tell a story on the first day of school:

1.You Will be Memorable

The first day of school is the last day to make a first impression.

For students, the excitement of the first day quickly ends when all their teachers are doing the same thing, “Hello…How was your summer?…Here is the course syllabus and here are the classroom rules…”

Do something different. Leave a good impression. Tell a story.

A first day story will get students excited for the impending school year. It will be something they tell their friends and parents about. Which, by them sharing your story, they are learning an important lesson– we are all storytellers and we pass our stories along to deepen our connection with others.

Suggestion–The first day is a great time to share a story about a personal failure. Talking openly about failure shows humility and vulnerability, two qualities children too rarely find in adults. Admitting you failed will immediately make you more relatable to your students.

2.You Will Calm Your First Day Jitters

Like students, teachers also get first day jitters. These jitters are often fueled by the new school year blitz of emails introducing new teachers, new initiatives, new procedures, and new curriculum.

In addition to all this newness, you still have to plan for your first class. A first class where you may feel the squeeze of trying to include every detail about class, its content and the year ahead. But you don’t. The school year is a marathon, not a sprint. 

Take a deep breath and remember, we were storytellers long before we were teachers. Sharing stories is natural, nonthreatening way to communicate important ideas.

3.You Will Begin Establishing Classroom Management

By telling a story, you are establishing the value listening. A value that you expect your students practice. Because listening is how we honor relationships. Because listening is the foundation of effective classroom management and effective teaching and learning. 

4.You Will Begin Creating a Classroom Community

Stories bring people together. Stories are for sharing. 

The first day story will help your students understand they’re part of a community and acknowledge that your classroom is a place of acceptance. A healthy environment which promotes vulnerability and authenticity.  If students feel safe and supported they will be more open to future learning.

Open to me, so that I may open.

Provide me your inspiration

So that I might see mine. —Rumi

5.You Will Be Creating Emotional Engagement

Stories make us feel.

While immersed in a story we begin to feel what the characters feel. If they cry, we may want to cry. This empathy is a vital classroom component. When students are emotionally engaged, your instruction will be more impactful and they will be more responsive to constructive criticism from you.

6.You Will Be Speaking Their Language

Though the content of your subject may be new to students, stories are not.

According to Business Insider, two-fifths of American teenagers use the photo sharing app Shapchat multiple times a day. The app allows users to post and share Snapchat stories, which are personal pictures users share to tell a narrative.

The modern student has been raised on social media.And at its core, social media is simply an advanced form of storytelling. As a teaching strategy, storytelling will help student see how their classroom learning can be similar and as entertaining as their favorite phone app. 

 

Storytelling is our most primitive vehicle for transferring information, for connecting and teaching.  And despite all their modernity, the story form remains incredibly recognizable and important to our students. Use the power of storytelling on the first day to introduce yourself and your content to the students and they will be excited to return for the second day. 

Good Luck with the New School Year!

Be well,

Jay

Before you go…

I highly recommend checking out the Tedx Talk, The Magical Science of Storytelling  presented by speaker and author David JP Phillips.  David explains the biology behind storytelling. How listening to stories release positive chemical reactions in the body, including the release of dopamine in the brain which increases both focus and motivation. 

The Power of a Conversation: A Recap of the 2017 Spring Write-a-Thon

Never underestimate the power of a little conversation.

The Write-a-Thon grew its roots in 2015, during a little conversation between my school district’s (Robbinsville, New Jersey) Superintendent, Dr. Steven Mayer and myself.

The crux of the conversation was, “How can we teach teenagers to see writing as an exercise in self-discovery and authenticity not just a forced activity aligned with the harbingers of school?”

So we talked. We listened. We brainstormed.

And 3 months later the first Write-a-Thon was held in my classroom., a 2-hour writing event that afforded students the opportunity to write, to tell their story.

The event hosted 13 writers including Dr. Mayer and received donations and support from my student’s parents, faculty and my own friends and family.

When concluded, the Write-a-Thon raised $1,300 for the Special Olympics of New Jersey.

Write-a-Thon-November 2015.

A few months later, in April 2016, as I was planning the second Write-a-Thon, Dr. Mayer was tragically killed.

The May event was held in his honor.

An event that began with me, fighting tears, recounting our little brainstorming session and how though he is physically gone, his story, his passion is alive and well.

The heart of the Write-a-Thon is simple–show up and tell your story.

This week, the fourth installment of the Write-a-Thon had 30 student writers, ranging from 7th to 12th grade. The event hosted a $500 college scholarship essay challenge and was filmed by the Emmy winning “Classroom Close-up NJ” and will be featured in October 2017 episode.

My experience as both a high school teacher and an adult has taught me that, in the contentious transition between young adulthood and adulthood, it’s easy to get distracted with the noise of the world.

It’s easy to forget about the importance and power of your voice, of your story.

It’s easy to believe your story doesn’t matter.

It’s easy to believe fiction.

The Write-a-Thon is a celebration of the human voice. Of the lasting power of the true human story.

And it’s our stories that stand before us, that become the permanent teachers, forever instructing the lives of the living.

Be well,

Jay

Write-a-Thon Supporters

The 2017 Write-a-Thon received tremendous support from the following Robbinsville High School programs:

The Debate Club

Coach Patterson and the Robbinsville Football Program

Robbinsville Boys Lacrosse

The Drama Club

GSA

The RHS Literary Magazine

The RHS Class of 2019

A Look at the Spring Write-a-Thon

 

Check out more pictures courtesy of NJEA


 

What My Stand-Up Comedy “Career” Taught Me about Fear

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It’s 2005 and I’m sitting at the kitchen table leafing through The Philadelphia Inquirer. Mom is at the stove whipping eggs. The coffee percolates and the TV weather man urges us to keep the umbrellas handy.

Mom whirls around, offers me a plate of bacon and eggs and tussles my hair. I’m 25 and in a few weeks Cindy and I make settlement on a little house to start our little lives together.

It’s a scary and exciting season in my life. And as seasons go, you never understand their significance until many seasons have passed. Until you realize that your past experiences were preparing you to deal with future problems.

As I eat my eggs, my eyes find an advertisement in the paper for an amateur stand-up comedy contest for teachers sponsor by Chuckles Comedy Club. The contest boasts a $1000 grand prize and the honor of being crown “Philadelphia’s Funniest Teacher.”

It happens to all of us–when the gleam of a possibility arrives we’re electrified by the “What if…?”. Our heart quickens, our speech is fast and light and our imagination is seduced by the promise of grandiose achievements.

I see my name in big black letters stamped on a glowing theater marquee. Jay-Z is standing behind a microphone. He calls my name and “Big Pimpin” breaks over the speakers that causes a thunderous cacophony of applause and screams and women faint and men nod in respect and admiration as I saunter across the glossy stage. There are fireworks and acrobats. Beyonce is there.  I’m standing behind a microphone basking under a solitary stage light. My jokes inspire walls of riotous laughter that roll in like waves. I smile, my eyes glint in the spotlight and as I slide my hand in pocket I realize that I’m the envy of everyone in the room.

I snap open my flip phone (remember it’s 2005) and dial but before I punch in the last number something happens. Something always happens in the moments before you leap, before you dive into an unknown world.

“What if I fail?”

My heart quickens.

“What if no one laughs?”

A nervousness flutters in my stomach.

“What if I’m booed off stage like B Rabbit the first time he’s at The Shelter?”

I see the black letters of my name melting like wax on the marquee. I’m on a glossy stage, behind a microphone, under a column of light. My eyes are wide, darting. I open my mouth but nothing comes out. I’m sweating and shifting my weight and there’s silence. A hard, loud silence that you feel more then hear. I look to my right and Jay -Z storms toward me, stops and pegs me in the ear with Beyonce’s sparkled stiletto. The spotlight clicks off and I’m alone on stage, cupping the side of my head, drowning in silent darkness of my failure.

I’m looking at the incomplete phone number and I feel the Four Horsemen of Failure: Concern, Doubt, Distrust, and  Fear charging hard towards me.

I tighten my lips, snap close the phone, finish my eggs and convince myself it was a dumb idea and I would’ve failed miserably and I’m better off not risking the embarrassment.

For the next few days, between eating eggs and packing boxes I was gnawed by the familiar “What if..?” paradigm.

“Don’t be too timid and squeamish about your actions. All life is an experiment. The more experiments you make the better.”– Ralph Waldo Emerson

And then, hours before the sign-up deadline, in a fit of either insanity or brilliance, I simply thought, “Fuck it. Even if I fail, mom will still make me eggs and Cindy will (hopefully) still marry me.”

This time, I snapped open my phone with confidence, punched in all seven numbers, left a message and a few hours later, a gruff voice called me and told me I was to report to Timothy’s Bar and Grill in West Chester, Pennsylvania next Saturday at 8 pm and that I would be the first comedian of the night.  Gruff voice explained that the contest was a single elimination, three round contest. The best comedian advancing each week until the final round.

Shit.

My stomach bottomed out. A streak of hot panic blazed up my chest.

For the next few days I jousted with the Horsemen. I wrote jokes, erased jokes, and threw out jokes. I watched hours of stand-up which only ballooned my self-doubt. I listened intently to the cackles of my inner critic. I entertained the idea of not showing up. Calling it off. Running away to Mexico. And I was convincing myself I was going to fail and that this simply wasn’t worth the effort or the embarrassment.

Days before the show all I had was a trashcan full of unfunny quips about relationships, politics, drive-thru windows and old people.

I’m 25 but look like I’m 18. In fact, as a teacher I was often mistaken as a student by both teachers and students. So I thought if I filleted my insecurities, if I had the courage to make fun of myself that people may laugh, at me or with me, either way I didn’t care.

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Just a couple of kids. No this is not our Sophomore Spring Mixer, this is our wedding rehearsal dinner. June 24, 2005. Apparently, I’m 25 years old.

So I committed to writing a 3 minute set about my insecurities.

My boyish looks, my fear of Victoria’s Secret and my pubic hair.

I felt that if I had the audacity to talk about the most private of things  in public I had a good chance on winning or at least earn the “Effort Award.”

But then the strangest thing happened– my self-deprecating jokes were not only good enough to win the first round, I road them all the way to the final where (triumphant trumpet sound) I was but crowned “Philadelphia’s  Funniest Teacher.”

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Comedy Gold! While writing this post I found some of my material. And yes bottom left is my ultrasound, the centerpiece of my gut-busting, mic- dropping finale.

I spent the next few months doing open mic nights, earning a little stage time, bombing some nights, killing others but ultimately I decided to hang up the microphone.

12 years later, when I hear the galloping Horsemen I return to the lessons learned that season. I’m reminded that despite my initial fear I didn’t die.

Of course, I didn’t know it at the time but my experience with stand-up comedy was laying the foundation for what I attempt do every week on this blog (without the 2 drink minimum). I attempt to tell my story truthfully, unadorned to entertain anyone who’s awesome enough to stop by and listen.

We often forget we’re just animals in fancy clothes and funny hats. When we sense fear, our primal instincts kick in and we run. But as the smartest animal in the schoolyard, we know that avoiding fear will only compound fear. And we also know that those who avoid risks will spend their entire lives just dangling from the monkey bars.

Be well,

Jay

“Dad, what’s a championship?”

“Chase, are you ready for today?”

“Dad, what’s today?”

“What’s today? It’s only the biggest game of your young life. It’s what you worked all season for. It’s the championship!”

Chase is sitting at the kitchen table. His hands are behind is back and he’s lapping the strawberry frosting off a donut as if in some first grade icing licking contest.

“Did you hear me bud? It’s the championship!.”

Chase looks up from his soggy mash of preservatives. A glob of pink icing hangs from his nose and there’s a cluster of yellow sprinkles on his chin.

“Dad, what’s a championship?”

“What’s a championship! How do you not… It’s the…”

Chase’s soccer team, the Red Dragons, had muscled their way through the season. As a team, they racked up the most goals in the league and last Saturday they faced their bitter rivals…The Gold team.

team2Throughout the week I thought about the game. How we could exploit the Gold team’s defense? How we could neutralize the Gold team’s best player?

But on the morning of the big game, Chase our starting midfielder, was absolutely unimpressed by the moment. He was too busy mauling a donut to care about championship glory.

img_9013I’ve said before that my children are fantastic little teachers. They often, albeit inadvertently, teach me about things beyond their understanding. We adults are notorious for over complicating, over thinking events. We make mountains out of mole hills. This kind of thinking leads to anxiety which often leads to binge eating donuts in the dark.

But children are champions of momentary living and I shudder to think of all the adult hours of happiness I’ve forfeited to the pills of anxiety, worry and regret.

We lost the game 3-0 and Chase didn’t seem care. As I watched him receive  his post-game juice box, snack and then skip off the field it became apparent  that a short memory can go a long way.

After the game, Chase and I were sitting on the front step of our house. As he  attempted to suck the lining out of his juice box and as a warm November sun rested on the world, it seemed like a nice opportunity for a father-son talk.  An opportunity, to bestow some of my fatherly wisdom upon my little cleated cub. So put my arm around him, pulled him close and asked if he was ok that they lost.

He stopping sucking and looked up at me as if I  had a glob of strawberry icing hanging from my nose and replied, “Yeah, I don’t care.”

He then farted and laughed at himself.

Be well,

Jay

 

The Day I Learned I Could No Longer Jump ( or Learning to Fly)

This week’s post was inspired by writer Victoria Griffin’s  Flooded: A Creative Anthology of Brain Injuries.

Victoria was kind enough to invite me on her blog tour to further educate on the realities on brain injuries. I encourage you to checkout Victoria’s Kickstarter Campaign and support her awesome cause!


The Day I Learned I Could No Longer Jump (or Learning to Fly)

For M.

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.

“Jay, I want you to jump.”

“Like up and down?”

“Yes, like jump up and down.”

I smile and look around the St. Lawrence Rehabilitation Center. There are three other patients in the activity center with me. Two women, both walking slow on a treadmill and Bill, a former Navy Captain, who is the proud owner of a new titanium hip. Bill is pedaling a stationary bike and according St. Lawrence lore, Bill has never smiled. Ever.

I’m the youngest one in the activity center by at least 20 years. This is problematic because comparison naturally feeds fiction. Surveying the room, like the true gym class hero I still think I am, I swell with pride believing I’m the most able body in the room.

“Denise, need I remind you that I’m an athlete. A collegiate soccer player. I’ve been jumping my whole life.”

Denise playfully rolls her eyes. This is only my third appointment at St. Lawrence but Denise and I already share a chemistry. It’s December. Football season. I’m an Eagles fan. She’s a Giants fan. In between sets of squats and leg raises I tell her Eli Manning is overrated. She tells me that the stereotypes regarding the jerkiness of Eagles fans is apparently true. She is a turtleneck conservative. No earrings, no rings just a silver cross pinned to her sweatshirt. But she is funny and real and in just our few hours together I stake her as the most compassionate person I ever met.

During a set of lunges Denise tells me that Bill just lost his wife of 40 years to breast cancer. Her brown eyes swell, and then tells me she lost her grandmother to the same disease. Denise and I both look at Bill, we watch him slowly pedal. She tells me it’s her goal to make him smile today.

To be honest, I’ve avoided writing this story for some time now. I guess by writing it, by pinning down its facts, I’m forced to further accept certain truths. I assume I did what most of us do when we don’t have the energy, courage, conviction to deal with truth.  We tuck it away, like a debt, in the darkness of a desk drawer and do our best to forget about it.  But memories, with just the right stimulus, can resurrect without warning. They sit up, blink, open the drawer and leak into the light and remind you that memories, like debts, can be avoided for only so long before they must be attended to.

The stimulus today was a basketball bouncing off the concrete. My son, Chase, is in the backyard, dribbling the length of the patio and shooting on a little net he received for his 4th birthday.  He’s six now and he’s getting good. Dribbling, jump shots, layups. And he’s quickly learning about the earthly battle between the human body and gravity.

Chase makes a jump shot and celebrates. As it often happens with sons, he feels me–his father’s eyes looming because he looks up, with his own blue eyes and finds me framed in the window.

“Come out and play Dad!”

I smile and wave and a trapdoor in my stomach swings open and my heart falls through and keeps falling because but I can’t play. Not now. Not today. Because some days my body aches too much. Because some days my brain does weird things. Like some days it convinces myself that I’m trapped on the Tilt-a-Whirl or I’m buckled to the back of a big black bird or I’m a sneaker in the dryer or I’m frat party drunk. Because some days the fixed world spins, glides, tumbles and wobbles off its axis at speeds beyond what my eyes, my undamaged brain can comprehend. And I guess, some days, I just don’t play because…because I simply cannot risk the embarrassment.

For this story, I need you need to suspend reality. I need you to believe the unbelievable. But the unbelievable is the truth. Truth that the National Institute of Health, the epicenter of rare and novel diseases, couldn’t believe.

Before my diagnosis, I believed that I would do physically heroic dad things, like carrying all three children off to bed like footballs, each tucked under my arm, after the fall asleep on the couch. I believed I would be the MVP of father-son baseball games. I believed my children and I would run 5k’s together and I believed on a perfect summer morning, when the sky was veined with golden light we would ride bikes along the New Jersey coastline.

But we age and learn that real life always falls incredibly short of the one we imagined, of the one we planned.  And yet despite our protests, it’s the unplanned life that teaches more then our fantasies ever will.

“Jay are you ready?”

“Eagles are always ready to fly.”

“Ok, but I’ll be right here, beside you just in case.”

Bill rides a stationary bike. He is straight-faced and staring at me.

“Hey Denise, can you go make Bill smile? He’s freaking me out.”

“Just concentrate on what your doing.”

“Denise, I got this. Need I remind you again, I’m an athlete.”

Cerebellar degeneration is exactly as it sounds. There is massive cell loss in the cerebellum, known as the little brain. The little brain controls motor skills: coordination, vision, and balance. After examinations from some of the top neurologist in the country, not one knows if I was born with a gaping hole in my cerebellum and had been able to compensate my whole life (remember, I’m an athlete) or if a civil war erupted in my little brain where cells attacked and killed each other. And as I write this, as Chase drills a jump shot, no one knows if the war is over.

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Image #1 (Above). This is an image of a healthy cerebellum. Notice the plump, circled area at the rear of the skull.
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Image #2 (Above). This is an image of my brain. Take a look at my poor excuse of a cerebellum.

In the last few months my coordination, vision, balance and motor skills have all deteriorated. Not at breakneck speed, but slowly, methodically. Little things, things I’ve taken for granted– handwriting, climbing stairs, and carrying a few bags of groceries have become difficult.  The doctors are surprise how well I look, speak and still function given the size of the hole in my brain. For a brief time doctors thought I had ALS. Then they thought Huntington’s Disease. Then MS. Then, after six months of testing, they simply shrugged their collective shoulders and said they didn’t know. They told me, as if they were riding the Tilt-a-Whirl or the giant bird with me to, “just hold on.”

Denise levels her eyes at me.

“I want you to jump.”

“How high?”

“As high as you can.”

I bend my knees, swing my arms back and forth and try to jump. I try and try and try and try but I just can’t do it. I just can’t force my feet to leave the floor.  My big brain screams at my little brain , “Jump!” But the message is not delivered as if some internal chord that transmits important messages had been severed. To Denise, Bill and the two ladies on the treadmill I must have looked ridiculous, like a wide-eyed field mouse fixed in a glue trap.

I shake my head. “Jump!”  “Jump!”

“Its ok Jay. You don’t have to do it.”

“No Denise. I can jump. I have to jump.”

“Relax. Take a seat. Let me check on Bill”.

Denise returns, tells me she offered Bill her best joke about a priest, a rabbi and a monk playing Monopoly in Mexico and he didn’t crack. Didn’t even flinch

“Denise, I’ve had enough for today.”

When you think of your future self you envision your best self. Happy and unblemished. Your the hero of your own movie. You convince yourself that you, unlike everyone else, won’t end up a tragedy. And in those great moments of fantasy you believe, with a swelled heart, in your own fiction.

I limp into the locker room, find a folding chair, stare into my lap and began to digest the fact that I had lost the ability to jump.  It occurred to me, right there in that empty locker room, on that folding chair that I would not be the man, the father I envisioned myself to be. A father running, jumping through life with his children. A father playing basketball in the backyard with his son. A father who is fast and coordinated and who teaches his boy the aerodynamics of a layup as the evening sun vanishes from the suburban sky.

I open the locker room door to find Bill in the hallway, sitting in his wheel chair, as if waiting for me.

I offer a little half-smile and before I can turn Bill speaks, “Hey,” he still had those steely grey Navy captain eyes, eyes that didn’t look at you, eyes that looked through you. Bill clears his throat, shifts his weight on his God-given hip and says, “Don’t give up kid.”

“Thanks.”

And then, in a very subtle, a very unprovoked way, he smiles.

 

Be well,

Jay

In Good Company

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A student recently asked me, “Hey Mr. Armstrong, what do you think about before you write?”

I curved my eyebrows inward, adopted a deep, contemplative look, held a silence for a second too long and replied,  “Words.”

The student rolled their their eyes, shook their head as if to say “Sorry I asked, you pretentious jerk” then turned away and moved on with their life.

Writers are often considered guarded, cantankerous folk. Often aloof and indifferent while sitting cross-legged in Starbucks, wearing tweed jackets and sporting wire-rimmed glasses.

So what do I think about before I write?

Well, I thought it might be interesting to unlocked that world for you. To share my mental geography. A geography I often disappear in while driving, coaching soccer, eating Golden Grahams, sitting through meetings or digesting the news that my 6 year old now knows the “f” word.

For me, the process is pretty simple. It involves a bar, Brenda, fried mushrooms and most importantly, you.

So, before I get more pretentious, let us go then…

You and I are at a bar. A local bar. A simple place with a simple name. Pat’s Pub or Mike’s Tavern. They serve American draft beers in thick handled mugs. The menu is limited to deep fried and pickled foods. The walls are dark wood paneled. The bartender’s name is Brenda. She is divorced, has a son in prison, a smoker’s cough and a faded rose tattoo on her forearm. 

There is a pool table in one corner and a jukebox that plays mostly southern rock in the other.  In the windows hang neon beer signs. Miller High Life. Coors Light. We are on our first beer and watching a 30 minute replay of Superbowl XXV on ESPN 2 when you ask me how I ‘m feeling. I tell you  I have good days and bad days. I don’t tell you good days are when I don’t think about dying until lunch.  I don’t tell you bad days begin when I think about dying before the coffee meets my morning mug. You ask what it’s called. Cerebellar Degeneration. You ask if there is a cure. No. You ask if the degeneration will stop on its own. Maybe. But the brain damage is permanent. You ask if I should be drinking beer. Probably not. You ask how I have been dealing with this. I drum my fingers on the bar. I want to cry. But I muscle it down. I look at you and smile and say I write stories. What kind of stories? My stories. Stories of my success and failure. Of my disease. Of my childhood and adulthood and fatherhood. Funny stories. Sad stories.  Embarrassing stories. Stories to remind me that I’m still alive.

I take a drink.

The Buffalo Bills kick off under a burst of a million flashbulbs. You know some nights, when Cindy and the kids sleep, I sit at my computer and stare through the words and watch my life play out on the screen like a movie.  Through stories we can make sense of the past which somehow alleviates the pain of the present. Because writing is easier then forgetting. Because writing is now a  therapy for me. More than any pill I have been prescribed, I have found real, human comfort in the re-imagined past. It’s like each story I write is a puzzle piece to my life. But the healing power lies in the fact that I can dull or sharpen the edges to each piece to fit my design.

I take a swig of beer and squint at the TV. We watch Phil Simms march the Giants down the field on their opening drive and kick a field goal. Giants 3 Bills 0. When the TV cuts to commercial you ask if I would share some stories I’m writing. I’m flattered and a bit unprepared but we’re friends. Sure. You smile, motion to Brenda and order  another round. I tell you that these stories are true. For the most part. memory is never completely accurate and that over time stories change shape. And with the fusion of time and repetition, and now alcohol, some of the facts may, at times, dissolve into fiction. I assert that I’m not a liar. I may inject hyperbole but that’s only for your entertainment. You concur.  I remind you that you asked me to tell a story not report the news. You concur. I tell you that though I may bend the truth, the themes of the story are true. You tell me to stop being an English teacher.

We get our beers and you pick at your fried mushrooms. You take a drink and I tell you that stories are like bookmarks to our lives. Stories remind us of where we have been and how far we have to go. I tell you that when we retell a story the past collapses into the present. And when we experience that collapse, we can learn deep and profound things about ourselves. Stories inspire us…

You wave your hand.

You tell me to shut the fuck up and get on with it already. I don’t take offense. We are old friends remember. We’ve been telling each other to shut the fuck up for years. I smile. You smile. We both take a swig of beer. I put my mug down and clear my throat and look at you and smile and say, “Ok, here is a something I’ve never told anyone before…”

Be well,

Jay