Candy Land – Student Voices (Guest Post)

Once you’re alive, can you ever really be dead? 

Candy Land is a personal narrative written by one of my students, Kayla Paterson. This story, Kayla intertwines the past and the present to explore the power of life, death memories, and board games. 


Meet the Writer

Kayla Patterson is a 12th grade student at Robbinsville High School (New Jersey). She plans on attending Hampton University and majoring in Computer Science.


Dedication: To my cousin, Aliya, who will be forever missed and who will live forever in my heart, in the Candy Land Castle.

Over a sea of black dresses and suits the Pastor took a deep breath, “You may proceed to the casket.”

Rising from the red velvet church benches, tissue in hand, I managed to take a few steps to the casket. Listening to the hymns in the background, I remembered playing Candy Land with her.

Ten years ago, I was seven and all I ever wanted to do was play Candy Land.

I was meeting my cousin Aliya for the first time too, so in my mind all I could think about was having a play buddy and hoping she like Candy Land as much as I did.

Ding dong.

I ran to the door and reached for the knob. My face turned with confusion when the door didn’t open. My mom came running down the hallway with one hand covered with an oven mitt. She unlocked the door and I smiled and pulled, wondering what I would see on the other side.

Standing was a tall girl with a round face. Her big brown eyes took the frame of her dark glasses. Her braids swayed right above her hips, the smell of strawberry perfumed lingering in the doorway.

“Hey Kayla,”Aliya said while scooping down to my level. “So what are we going to do?”

Being seven and meeting people for the first time always scared, but Aliya was different.

I took her hand with a smile and led her to the family room. I told her how to play the game Candy Land and she was eager to start the game, we both sat right across from each other with the board in between us.

I took Princess Frostine – the blue princess and Aliya choose King Kandy.

I took the die and rolled it with all of my force. Five spaces. I moved my Princess Frostine closer to the Candy Castle.

Five spaces to the casket.

I could see the outline of her body. Silky black curls fallen on her ruby red dress. Her eyes shut, as if dreaming about her plans after college. Just 23. Just a girl with a dream.

Aliya, took the next card from the deck and eyed me down. My serious, seven year old eyes told her that I was not playing around.

“Ha, it looks like you need to move your Princess Frostine four spaces back, and you thought you were close to winning this game,” she said with a smile.

I took my Princess Frostine and moved it back four spaces, staring down my cousin while I did it.

Four spaces away from the casket.

I see her face. Silver eyeshadow, red lipstick, some blush here and there. She was beautiful to be dead.

“You think you can beat the master at this game?” I questioned my cousin.

I yanked the card from the deck and smiled realizing I just gained three forward spaces. Taking my Princess Frostine and moving it through Candy Cane Forest, I was almost to the Candy Castle. Aliya stared at me and she knew I was about to win this game.

Three spaces away from the casket.

I started to cry. I was close to reaching her. So close of touching her hand. Touching the hands she helped me deal cards with at a young age, trying to explain gambling to me. Touching the hands that were sticky from the lemonade we tried to make in the kitchen.

“Ha, I’m two spaces away Kayla,” Aliya said. Her big brown eyes followed the smooth movement of King Kandy jumping spaces between my Princess Frostine.

Two spaces between me and the casket.

The flowers she held were edged in gold. She was so similar to me. She was an only child, she wore glasses and she just wanted a good life.

“Not so fast cousin!” I only needed one more space to win the Candy Land Game.

I grabbed the die, shook it and released it with all my might. Our eyes lunged at the twirl of the die.

The die slowly spun to a halt.

My face slowly lit up when I saw one dot. I grabbed my Princess Frostine piece and did a small victory lap before I made it into the Candy Land Castle.

“And the victory goes to me! Take that cousin!”

Aliya laughed, “Nice game.”

One more space between me and the casket.

I step forward.

I touched her hand and I closed my eyes imagining her with me, imagining her breathing, alive, and well. She still smelled like strawberries.

“I’ll meet you again Aliya. One day, at the Gumdrop Castle.” 

We cleaned up the board game and as she left, she smiled, “Don’t worry you’ll see me again. You owe me a rematch.”

My uncle looked down at his daughter for one last time and kissed her forehead. The casket closed and I watched it rolled down the aisle, out the church and into the morning light.

My big 7 years old eyes stared at her and said, “Next time we’ll have that rematch. But until next time”

Until next time.

~Afterword~

I stared at my uncle. Though I ached with absolute sadness, I felt Aliya alive my heart. I knew that as long as I stoke the memories of her she will always be alive.

On that day I learned no one is ever really dead.

Celebrating Victory with the Living (and the Dead)

On Superbowl morning I went to Forest Hills Cemertary wearing my Eagles jersey.

It’s February in Philadelphia and it’s cold and raining and my son is standing by my side and we’re looking down at the plaque marking the birth and death of my grandparents. Mike and Doreen.

I tell them about how the Eagles are playing in the Superbowl tonight. How they’re underdogs, been underdogs throughout the playoffs. A real Philadelphia story.

Never having performed the earthly art of speaking to the dead, my son stares at me and then quietly drifts towards the car.

I tell my grandparents I’m a bundle of emotions. Excited, nervous.

I tell them I think we’re finally going to win.

I tell them I’ll be thinking about them tonight.

I can feel Chase watching me. His nose pressed up against the car window. His 7 year old mind convincing itself that his father is a little stranger, a little more mysterious then previously thought.

An hour earlier, before the rain, I was staring out my kitchen window into the calm, gray morning and listening to sports talk radio.

Mary from Doylestown said she was going to wear her brother’s Eagle’s jersey tonight. She said her brother taught her the Eagles fight song and how after high school he enlisted in the Army and how on his first tour of duty in Afghanistan was killed by a suicide bomber.

Bill from Broomall said he’ll be watching tonight’s game from his recliner and with his father’s urn propped beside him. Like he’s done all season.

Then two things happened before the Jim from Norristown could finish his story about going to his first Eagles game at Franklin Field in 1960 with his parents who are now both deceased:

One, I was on the verge of tears. Serious man-tears. And two, I had a sudden urge to visit my grandparents.

My grandparents were casual sports fans. They celebrated when Philadelphia celebrated.

My grandfather was a Philadelphia police officer and would tell me stories about being down on the Veterans Stadium field, working security during Eagles games. How after the game he would visit the locker and talk to the players. Which, when you’re a kid, is just about the coolest thing in the world  –much cooler then talking to wet cemetery grass.

Beyond that, I don’t remember any conversations with either of them about sports.

But that’s not the point.

My grandparents were fans of life. Fans of their children and grandchildren. They taught me the importance of togetherness, community, celebrations and traditions. And since sports is a freeway that connects people, on Superbowl Sunday, I wanted my grandparents to feel a part of the biggest game in Philadelphia sports history. To feel a part of the living story again.

Later that day the Eagles defeated the Patriots to capture the first Superbowl title in franchise history. A franchise founded in 1933.

When the clock settled on 0:00, I hugged my mom and dad. I hugged my brothers. I hugged my wife and children.

Later that night, when the celebration quieted, I thought about my grandparents.

And I’m sure Mary, Bill and Jim were all hugging the spirits of their loved ones late into the night as well.

As children, our parents told us not to stress over striking out or missing a shot. They told us not to take it so hard. They told us that it’s just a game.

And now, as parents, we pass down the same sentiments to our children.

Don’t take it so hard. Let it go. It’s just a game.

Yet I know it’s not just a game. And my son now knows it’s not just a game.

Because hours before the Superbowl he listened to me talk to the dead.

Because inside the earthly boundaries of the game, rests something ethereal that connects the living to the dead.

A magical spell of muscle and bone that coaxes the dead sit up and smile and celebrate the joy of sports, the joy of life with us once again.

Be well,

Jay

Here are some Superbowl and parade pictures:

 

For the Philadelphia Sports Fan, Championship Games are Generational

When I was a kid my dad use to carry me through the silver turnstiles that guarded the concrete spaceship known as Veterans Stadium so we could watch bad baseball, together.

In the mid 1980’s the Phillies were a bad baseball team.

So bad that if you went to the supermarket and bought an 8 pack of Phillies Franks you’d have a plastic ticket soaked in hot dog juice for an upcoming home game waiting for you.

But to avoid buying another ticket (or another pack of hot dogs), dad and I shared a ticket. Which meant he would hand the usher one ticket, smile and carry me into the game.

When we got to our seat, even though there were always plenty of empty seats in the Vet, I sat on dad’s lap cracking peanuts, arguing balls and strikes with the umpire and cheering on Juan Samuel.

Veterans Stadium (The Vet), Philadelphia

Since those hapless baseball games, that marked so many hapless seasons, I have always thought of watching sports as a father-son bonding event. Like fishing or shaving. But with sports you could high-five, laugh and show emotion in a very nonthreatening, masculine way.

For Philadelphia sports fans, a championship game is a generational event.

This Sunday the Philadelphia Eagles are playing in the Superbowl LII.

Their first Superbowl since 2004. Before that, 1980. They have never won the big game.

Since the Eagles advanced to the Superbowl two weeks ago, dad and I have crafted armchair game plans for the Birds. If they run the ball, they will win. If they attack Tom Brady and his 40 year old legs, if they force him to move, they will win.

By mid-Superbowl week my Superbowl excitement reached a-kid-on-Christmas Eve level.

At 6:30 am I awoke my children with a Superbowl countdown. A flick of the bedroom light switch followed by a slow-clap and a thunderous reminder, “TIME TO GET UP!!! 3 MORE DAYS UNTIL THE  SUPERBOWL BABY!!!”

I think about the game while brushing my teeth. I think about the game while driving home to and from work. I think about the game while my wife is talking to me.

There’s a constant swirling in my gut, electricity zipping up my bones as if my Bingo numbers were just called and I’m bouncing up the aisle about to claim my prize wondering, “Are grown men suppose to get this excited?”

I made a Superbowl playlist on Spotify stacked with AC/DC, Rage Against the Machine and the obligatory songs from the “Rocky” soundtrack.

I’ve already picked out my seat on the couch for Sunday.

Scoff at my zest, but championship games are rare for Philadelphia teams.

Since the Eagles last played in the Superbowl in 2004, I have grown up a bit. I got married, bought a house and fathered three children–a daughter and two sons.

(My boys have bought into the Superbowl mania, my daughter would rather watch Fuller House on Netflix.)

And so if growing up is simply a matter of perspective, I realize, in the rush of life, how important these father-son experiences are.

I’ve learned that watching the big game with your dad and sons is a small moment that extends well beyond final whistle. It’s a seminal chapter in the father-son novel.

My dad turned down Superbowl party invitations from his friends. He told me he had to watch the game with his sons and his grandchildren.

He told me that there’s just something special about having your grandson on your lap, cheering on your team together. He then reminded me the big game doesn’t come to Philadelphia often.

Like all Eagle fans I crave, I pine, I yearn for a Superbowl win. A win that would knit wounds knifed by years of sports futility.

So on Sunday you will find me on the couch with my dad and my sons rooting for Eagles, together.

And even though the mighty Vet is now just parking lot the lessons learned during those hapless Phillies games remain, as I sat with my dad, rooting for our team, and in subtle ways, rooting for each other.

Go Birds!

Be well,

Jay

Using Your Pain to Tell Your Story: When Students Teach Teachers

This week’s post is a slight detour from my month-long research and writing about chronic illness.  Next week will be the final installment on chronic illness.


Even though Dina, the girl who always wore sleeves, has been a student in my class since September, I really meet her for the first time last week on a cold, January morning.

On January 18th I facilitated my 5th Write-a-Thon for my students. The Write-a-Thon is a voluntary, two-hour writing event where students are allowed to write on any topic, in any genre they wish.

It’s an event designed to encourage teenagers to express themselves, discover their voice and tell their story in a welcoming, enjoyable environment free of the judgments and the awkwardness that define high school.

With donations from student writers, the Write-a-Thon raised $200 for the Special Olympic athletes of our school.

Halfway through the event, during the 15 minute intermission, I like to catch up with some of the students to see how they’re doing and hear what they’re writing about.

So I started a conversation with Dina. The girl who often came into class early, reading some YA title as she waited for me to start the day’s lesson. The girl who sat in the front row and sometimes traded smiles with Paul, who sat across the room, when the lesson became boring. The girl I hardly knew.

But when my conversation with Dina was over, I was left humbled and inspired and thankful I finally got to meet her.

Write about your pain

For a long time I believed that I hadn’t suffered enough to be a writer.

I was never a drug addict, never traversed the Iditarod Trail, never abducted by aliens.

I felt I was to pedestrian to be a writer.

As twisted and as selfish as it sounds,the writer in me secretly wished something bad would happen so I had some real material worth writing about. (As if living is not suffering enough.)

Real writers, I thought, suffered romantically, cinematically. Their addictions and tribulations spawned our favorite books and movies.

I felt that until I suffered hard I would always be short on material.

Then something happened.

I got sick. And my sickness caused brain damage. And my brain damage stole my coordination and blurred my vision. I was told I would spend my life in popping steroids to temper my chronic pain. I was told my I could lose my sight, my ability to speak at any time. I was told I was destined to suffer.

Congratulations– I guess. I got what I wished for.

I, an average middle-class white kid from the sprawling lawns of suburbia, finally had something worth writing about.

A few days before the Write-a-Thon I read a personal narrative Dina wrote for a class assignment that made me want to talk to her.

So during the intermission I told her how much I enjoyed her writing. How her writing has a maturity, a grit and gravity that I rarely read in student writing. How I admired her ability to write so openly about her depression.

As the other students ate bagels and talked, Dina sat down in a chair alongside my desk. I remember it was unseasonably warm. I had my sleeves bunched about my elbows. But Dina’s sleeves were ringed around her wrists. Where they could usually be found.

I asked Dina if writing was an outlet for her. A place to go to find strength, to find peace.

She gave me a half smile, looked down and sat quietly. Then she held her index against the corner of her eye as if she was holding something in.

Then she took a deep breath, removed her finger, leveled her eyes into mine and let this out:

“I was taken from my mom when I was two. I’ve lived in seven different foster homes. I’ve seen a lot. Been through a lot. Which has made me a really distant, a really closed-off person.  When things got bad I use to self-mutilate. You know, cut myself.  But I write now. Writing takes the pain away. Writing is where I go when I want to cut myself.”

Where there’s a scar, there’s a story

Pain is a fine place to begin your writing. But you can’t end with pain. You must use your pain as a means of finding a higher purpose.

I cleared my throat, found my voice and asked Dina what her plans were after she graduated high school?

Without acknowledging the scars that run like railroad tracks underneath her sleeves, along the underside of her forearms, without considering the nights she was forced to sleep on a basement floor of drug infested foster house, without recalling the time she watched her one foster dad stab her one foster mom with a fork over and over and over again until the kitchen floor pooled with blood she smiled and said, “I want to be a social worker. I want to help foster kids the way I wished somebody would have helped me

When the students began the second writing session I felt embarrassed that it took me so long to meet Dina and hear her story.

At 17, Dina already believed in her pain. She knew it was the pain that helped her find purpose. And she knew it was her responsibility to tell her story, to share her pain so that others may find their own reasons to believe and that she could find the peace she was looking for.

As the students wrote, I began writing this story. Humbled and a bit unnerved that I, their teacher, had so much more to learn.

Be well,

Jay

(Please Note–The student’s name in this story has been changed.)

How To Get Men To Talk About Their Chronic Illness

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.


When my wife comes home from work she vents.

If she doesn’t vent to me, she calls her best friend to vent. And when my wife’s best friend has had a rough day, she calls my wife to vent.

After a day of work my wife needs to talk about it. She needs to share her frustrations (and accomplishments) with me or her best friend. And after she vents she often says, “Sorry, I just had to vent.”

For my wife, sharing her emotions seems almost natural.

And I’ll admit, I’m a little jealous.

Three weeks into my research project on chronic illness and I’m hearing a lack of male voices on the subject. There are tons of blogs, articles and podcasts about living with chronic illness on the internet but most are voiced by women and geared toward women.

Even the articles I found about how men typically deal with chronic illnesses were written by women. Not to devalue those articles, it’s just strikingly clear that there’s a lack of male voices in the chronic illness discussion.

But why?

Men are just as susceptible to chronic illness, and in fact, chronic illnesses are more fatal for men than women.

According to the Harvard Medical Journal, Men die younger than women, and they are more burdened by illness during life. They fall ill at a younger age and have more chronic illnesses than women.

So why the silence?

I think it’s simple—men don’t feel comfortable talking about their weaknesses.

It’s not that we don’t want to talk about our illness, we do. I have had a lot of deep, personal conversations with male friends and male students about deeply serious things, including chronic illness.

The problem is we just don’t know how to voice our fears, frustrations and without looking weak.

We fear that having a real talk will be mistaken for venting. And venting is something that women do.

I wrote in A Vulnerable Man that when I was 15 years old I was called a fag by another boy because I wrote a story that impressed my 9th grade English teacher.

22 years later, as I tell you this, I can see my teacher smile and hear her say that I have a “strong writing voice” and that I should “keep writing.”

For the teenage, heterosexual male being seen as “gay” in the eyes of your male peers is the ultimate fear.

And if I’m being completely honest, at 37, it’s still a serious fear.

In this NSFW clip, comedian Bill Burr accurately ( and hilariously) describes why men are so foolishly terrified to look weak in front of other men and how a man’s emotional repression ultimately kills them.

 “What are you a fag” is the reason why guys dropped at 55 out of fucking nowhere.–Bill Burr

Young age men are trained by society and by other men to suppress their feelings. And for the man struggling with chronic illness this “training” becomes increasingly dangerous.

My plan when I began the January Project was to research the origin of chronic illness, the different types, possible preventions and latest research.

But something happened.

When I dove into the project I was shocked to find a lack of males voices talking about chronic illness.

So the focus of the January Project shifted from general research to writing about ways men with a chronic illness can accept vulnerability, overcome shame and find their voice again.

Like women, men need to share their struggles, their stories. Because repression leads stress and stress leads to physical and emotional weakness.

5 Constructive Things Men Can Do

Each of the things listed below helped me to accept and openly talk about my chronic illnesses. These strategies will not cure your illness, but they will help you take the first, crucial steps in achieving a less-stressful, more fulfilling life.

There was a time throughout my struggles with chronic illness that I thought each of these strategies were dumb–even writing.

At first they were uncomfortable and seemed futile. But the more I practiced them, the more I was able to accept my chronic illness, release stress and gain emotional strength. Training your emotional muscles is like training your physical muscles– if you want results, you must consistently go to the gym and lift weights.

Finding your voice is a life long process. It’s work. But if we never verbalize our emotions we will always be fragile and walk a tightrope of self-destruction.

1.Write

I don’t know where I would be without writing. Writing has been both a release and a source of strength for me. Writing has made my thoughts and feelings more tangible, more clear and easier for me to understand.

The purpose of writing is to not pen a novel. The quality of your writing doesn’t matter. It’s to have a dialogue with yourself–a private venting session to constructively release your emotions.

2. Make one small change

A chronic illness can leave you powerless. And when you’re powerless, sometimes you think you have to change everything to regain your masculine power. One way to regain your power is to make one small positive change. Committing to one small change will provide confidence to make bigger, future changes.

For example, a few weeks after I committed to taking daily all-natural vitamin supplements, I decided to change my carnivorous diet to a total plant-based diet. After weeks on a plant-based diet my body felt so good I was able to completely stop taking steroids, which I had taken for four years to alleviate my chronic pain.

3. Listen to motivational speeches

Because I was so afraid to talk about my illness, no one knew how much I was suffering. I wanted to talk but, maybe it was a lack of courage or maturity, I just couldn’t.

I found that listening to motivational speeches everyday helped me to build strength and courage that one day inspired me to talk.  My favorite speakers are Tony Robbins, Brene’ Brown and Les Brown.

4. Learn something new

Learning new things is cardio for your brain. Watching a documentary, reading a book or learning a new skill are simple ways to gain strength and confidence.

In fact, living with a chronic illness requires you to have a growth mindset, which basically means to increase your intelligence by dedicating yourself to learning about new ideas and perspectives. Intellectually growing makes you feel strong and helps you manicure a resolve to overcome future setbacks.

5. Tell one person that you’re scared

Bestselling author Lewis Howes explains, “anyone who has experience trauma in the past and hasn’t ever discussed it with anyone will allow the trauma to grow in negative way until you begin to tell your story.”

Even when I was enduring CAT Scans, blood tests, biopsies and MRIs it was still hard to admit to my wife that I was scared.

Men will endure and suffer to avoid admitting that they’re afraid. But admitting fear takes real courage and is an important step in the healing process. Though the stoic, unwavering man is glorified in our society, it’s important to remember that he is nothing but a work of fiction.

Men– living with a chronic illness is hard. It will emasculate you. It will break your spirit. Don’t let it. Hold on. Have patience. And never be afraid to tell your story.

Women– understand that men need you. Though we may not say it, your presence gives us strength. Be frugal with your questions. The last thing a suffering man needs is to be assaulted with questions. Stay patient, refrain from judgments and one day, when we’re ready, we will share our story with you.

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)

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

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

 

 

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