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

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