The Love Story That Almost Never Happened

I’m proud of myself.

Proud that last week I finally mustard the courage to write about love. A  subject I have skirted for years.



Like I told you, I always knew I would marry Cindy. Just one look and I knew with bone-certainty it was love. Soul mates. Kindred spirits. Whatever you want to call us, I always knew we were fated to be together, build a life together.

However, there’s been a problem swirling in human DNA since the reign of the ancient Greeks. When Oedipus challenged fate, lost, and naturally, carved his eyes out.

It’s an inherited belief that with a certain mix of age and experience we think we’re strong enough, smart enough, and tough enough to best fate.

During my senior year of college, I read Kerouac’s “On the Road” for the first time. His images of the unfurling freedom waiting for him out on the glinting asphalt of the open road were intoxicating.

At the same time I also realized I wanted to be a writer.

Drinking beer, listening to Pink Floyd, I fancied images of heading west, attending grad school in some big university, rubbing elbows with famous writers, moving to a big city, leasing an overpriced one-bedroom loft and scoring a job as a sports journalist.

I knew I wanted a writing life. But I thought I wanted a writing life on the road. A life to offer me the excitement that my current life lacked.

I felt confined. Trapped by my small private college, my hometown and everyone in it. Including Cindy.

I thought I wanted more.

I’m not proud of myself.

I remember, as I entertained a sports journalism life, how much of an asshole I was to Cindy. How reckless I was with our relationship.

As she sat on her bed in her dorm room, white Christmas lights snaking across the joint of wall and ceiling, I told her she was holding me back.

Young men, like the gods we dress ourselves up to be, often believe we are the sole creators of our success and happiness. So we distance ourselves from others. We forge fantasies. We mask our unhappiness and insecurity with false bravado and empty dreams. We puff out our chest, turn our hat backwards and pretend we’re in control of our life and that fate is just a motif found in ancient Greek theater.

I yelled at Cindy.

I told her after graduation I was heading west. I was going to be a sports journalist. I wanted a life on the road, going to games, sleeping in hotels and writing stories. So I invented a life that a 22 year old man would likely invent for himself. Exciting, mobile, and bursting with possibilities.

When I told her to let me go she sat on the edge of the bed and cried.

When I told her it was over she protested and I grew angry and stormed out of her room and marched down to my dorm and got drunk with Pink Floyd.

When you get a chance, I highly recommend reading “The Alchemist” by Paulo Coelho.

It’s by far the most soul-cleansing book I have ever read.

Early in the novel the alchemist explains to a young shepard, Santiago, that all people are born with a Personal Legend.

That your Personal Legend is your destiny. It’s the person you were born to be.

According to Coelho, children are very much aware of their Personal Legend. Whether it’s writing, painting, fixing, building, singing or rodeo clowning children know, even if they lack the ability to explain it, that by pursuing their Personal Legend they will reach spiritual enlightenment and earthy happiness.

But we grow up.

And not in a good way.

We question our Personal Legend. Our passions turns bitter.  We start to value opinions over the intrinsic truths that were once as tangible as flesh.

We adopt shiny, plastic notions of happiness because they are easy to assemble and sell at cocktail parties.

We distance ourselves from our Personal Legend, leave it behind like a broken Chevy on the side of the open road and sink into a life we will soon come to despise.

Many years ago I was reckless with my relationship with Cindy. Too scared to accept my Personal Legend.  Too self-adsorbed to recognize that Cindy and I share the same Personal Legend.

Thankfully, she was not.

Sometimes she’ll read my work and laugh. Sometimes she’ll cry. Sometimes she’ll, as Springsteen once wrote, “laugh and cry in a single sound.”

Sometimes she’s quiet. Sometime she hugs me and smiles. A smile that reminds me of what I have and what I almost lost.

It’s evening and I’m writing this at our kitchen table. The table is strewn with the kid’s homework and half-filled cups and credit card bills and it’s marked with a splatter of forgotten spaghetti sauce that is beginning to harden.

There’s nothing exciting about scene. It’s painfully pedestrian. Epically suburban. It’s the complete opposite of where I wanted to be when I was 22.

But I’m happy now. I’m home.

I’m right where I need to be.

Be well,

Jay

Taking Notes: A Love Story

In a world of Nicholas Sparks it’s hard to write something original about love.

Love is a well-traveled topic. One, I’m sure, you’ve taken plenty of notes on.

Love is patient. Love is kind. Love is engraved your heart and scrolled among the stars.

Love is in air. Love is an open door. And, if you find the right station, love is a battlefield.

Anytime you write about love you ink a fine line between cliche’ and Nicholas Sparks. So, in my attempt to avoid such fate, the only thing I can offer is a secret love story about love. So secret that when my wife reads this, she will know it for the first time.

I’ve written about my health issues and personal shame and failure but writing about love is something I’ve avoided. For me, writing about love is a little embarrassing. A little too revealing.

And plus, how do I write about love in such an authentic yet impenetrable way that it’s not the subject of dissection, comparison and judgment?

Truth is– you can’t.

It’s simple emotional physics (which should’ve totally been a 90’s emo band name).

To love is to want. And to want is to have weakness. Therefore, you can’t open yourself to love without subjecting yourself to dissection, comparison and judgment.

I fell in love with a girl when I was 16.

The first time I saw her standing in the blue painted threshold of the doorway to her biology class I just knew, with an absolute bone-certainty that I would marry her one day.

And 10 years later I did.

Even though that story is absolutely true, I understand you’re skepticism. And I don’t blame you.  It seems too easy and yet, at the same time, too impossible. Too Nicholas Sparks.

So I’ll tell you another story that’s more believable. Yet, in some ways, just as fantastical.

Cindy and I are sitting at large round table, the kind guests sit around at weddings. We’re in the back of a Las Vegas hotel ballroom, the kind couples rent for weddings.

Except instead of a DJ, there’s a UCLA professor at the far end of the ballroom. He’s standing on a stage, behind a podium. To his right is a movie screen holding an MRI of a human brain. A brain whose cerebellum is damaged. A cerebellum that looks a lot like mine.

The room is filled with people of all ages. Some people in wheelchairs. Some people clutching canes and walking sticks. The same haunted glow in everyone’s eyes.

We’re in Las Vegas attending the National Ataxia Federation’s annual conference for patients with neurological disease because seven months earlier I was diagnosed with cerebellar atrophy.

Cindy and I are surrounded by people of all ages stricken with rare neurological diseases. ALS. MS. Huntington’s Disease. Brain tumors.

Some people sit with their spouse. Some sit their parents. Some sit alone.

The UCLA professor is discussing advancements in stem cell research as a way of improving and repairing brain growth.

Cindy is beside me taking notes.

Her hand moves in small yet amazing ways. She is writing down what the professor is saying as fast as he is saying it.

Her penmanship is catholic school perfect. Her notes are well-spaced and organized and her margins are aligned.

It was a secret moment in my history. One I’ve never told Cindy about.

A moment of enormous fear yet as my eyes trace the ink-curls of her words, a small moment of enormous comfort and safety.  A moment where love was learned. A moment when I finally realized I was lucky enough to find a woman who cared more for me than I could possibly care for myself.

A moment that gifted me the eventual courage to roll my shoulders and write these sentences–

Let my cerebellum soften to oatmeal. Let my brain cells explode. Let my eyes go blind. Because there’s girl with green eyes standing in the blue doorway and she’s not moving. And she never will.

And that is what love becomes. After all the romance and celestial promises of the initial courtship, love becomes a lifetime of small moments that add up to make something enormous.

But even that seems Sparksian.

A chronically sick man whose hands are shaking, whose body aches, whose teetering on the edge of self-destruction is sitting beside his wife in a Las Vegas ballroom. They’re high school sweethearts. They have three children together. But seven months ago things suddenly got harder.

And yet she still takes notes.

As the professor speaks and the damaged brain that holds the screen looms like a thundercloud over the room with her free hand, she reaches across the table to hold his hand, to ease him, to feel his pain.

Be well,

Jay

 

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

Why am I sick? The Question All Chronic Illness Patients Ask and The Causes of 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 just trying to learn how to live a productive and peaceful life 

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


Why am I sick?

Like a car accident, a chronic illness often comes without warning.

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

For me, the symptoms of my chronic illness happened overnight. Literally.

One day I was coaching and playing soccer and the next day my vision was blurry, my head was spinning and I barely had enough strength in my legs to 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 5th an MRI of my brain revealed that I have cerebellar atrophy. In April of 2015 a muscle biopsy of my thigh revealed I have sarcoidosis– a chronic illness that causes muscular and organ inflammation.

And even with a medical diagnosis I wasn’t satisfied. My mind was cluttered with questions. Questions that spiraled from the origins of my illness to the existence of God.

Why did I get this sick?

What could I have done differently to avoid this fate?

Why is God doing this to me?

Hell, is there even God?

The uncertainty of a chronic illness unravels and unnerves you.

When unanswered questions snowballed I grew overwhelmed and  experienced a sort of moral freeze. I couldn’t think, decide. I couldn’t, as my old soccer coach would say, “get my shit together.”

These were and still are the hardest moments for me. The moments I’m still ashamed to talk about.

In life we’re taught to be curious, to explore, to seek until we find what we’re looking for. Like a high stakes of hide-and-go-seek.

But what happens when there are no answers?

Even after years of blood tests, biopsies, scans and observations I still don’t know what caused my illnesses.

Five years ago I would not attest that uncertainty is an opportunity for growth and change. But know I do.

I realized that not knowing why I got sick is what inspired make a greater investment into my health.

According to The Anxiety and Depression Association of America,  patients, of chronic pain and respiratory disease patients and others with disorders that require a lifetime of coping report increased levels of depression and anxiety.

In 2013, when doctors first identified my first chronic illness, I was an active healthy 33 year old man. I was 180 pounds. I went to the gym after work and played soccer and softball on the weekends. I didn’t smoke. Didn’t use recreational drugs. Sure I had an occasional beer but overall I ate a balanced, protein-rich diet.

So why me? What caused the illness? Was there anything I could have done to prevent it?

Almost five years removed from my original diagnosis I still don’t know know what caused my illnesses.

Research has found three potential origins of chronic illness.

My experience with chronic illness has taught me that knowledge is power. And though the origin of your illness may remain a mystery, it’s crucial to educate yourself on the origins of chronic illnesses.

Genetics

A former student once wrote a heartbreaking poem about how she was doomed to get dementia when she got older because all four of her grandparents had it.

It’s been long believed that since a chronic illness “runs in your family” you’re fated to get it.

And though genetics definitely is a factor of chronic illness, it’s not as determining as once thought.  As science has advanced, research has proven that “inherited” is not “destined”.

Certainly genes are important in influencing our health, but there is no such thing as chronic-disease genes.–The Disease Delusion by Dr. Jeffrey S. Bland

This is good news for my former student. She is not necessarily fated to get dementia.

The human body consists of 20,000 genes and if you think of each gene as a lock, it’s a matter of discovering which keys unlock a chronic illness.

Growing research suggests that the “environmental key” and “behavior key” are the two most likely keys to unlocking the chronic illness door.

Furthermore, one key may unlock multiple doors. Meaning that is you have one chronic illness you’re at a higher risk for developing other chronic illnesses.

Environmental

Environmental factors and chronic illness have a long history.

Historians pontificate that the fall of the Roman Empire was triggered by the high amounts of lead identified in their water pipes and in their drinking cups.  More recent research revealed that an exposure to lead can significantly drop a person’s IQ. And a child’s exposure to lead can be fatal. Mental illness spread across Roman. Roman leadership became weak and unstable and mighty Empire fell.

In her 1962 landmark book Silent Spring Rachel Carson, announced that environmental toxicity is one of the leading factors in chronic illness. Her researched centered on DDT and other agricultural pesticides and how they were responsible for an increase in cancers.

Exposure to toxins and chemicals, such as asbestos and mercury can cause inflammatory reactions which often manifest into a chronic illness.

Since modern people are exposed to a multitude of environmental chemicals, it sometimes impossible to identify which chemical is responsible for unlocking a chronic illness.

However, just knowing which chemical haven proven toxic, can help you avoid them.

Here is a list of common environmental toxins that have been linked to chronic illness.

Behavior (Diet, Stress, Age)

Though the existence of many infectious diseases have decreased over the last century chronic illness rates have dramatically risen.  

This increase is a direct result to the availability of unhealthy foods, drugs, alcohol and the fact the humans are just now living longer.

Diet

A poor diet is one of the biggest contributors to obesity, diabetes and chronic inflammation.

A health diet fuels a healthy immune system which has the strength and energy to ward off chronic illness.

A well-balanced, vitamin rich diet is the most proactive step a person can take to preventing chronic illness.

I was on a moderate dose of Prednisone for 4 years to relieve my chronic pain. And even on Prednisone I was still in pain. However, since I shifted to a total plant based diet, I am completely off of Prednisone and my pain is gone.


You can read a more detailed version of how I overcome my Prednisone dependency in the article, “How I Finally Kicked Prednisone’s Ass.


Stress

The connection between stress and chronic illness is a little more unclear however, stress, if not addressed, does suppress the body’s immune system making the body susceptible to developing a chronic illness.

When under stress a person’s heart rate, blood pressure, metabolism, digestion and muscle tension are all adversely affected.

However, not all stress is permanently damaging. Coping skills can help the body to return to normal rates. Yet when not addressed, stress becomes distress. And if a person has a genomic susceptibility to a chronic illness, the distress key can unlock a chronic illness.

This is why when a person is diagnosed with a chronic illness they are often urged to seek a mental professional help, to learn stress management techniques.

Age

Aging causes changes to our immune system, which makes us more prone to developing a chronic illness.

And though we can not avoid aging we can adopt a healthy aging lifestyle that help delay or deter the onset of a chronic illness. This includes a healthy diet, exercise, limiting alcohol consumption and keeping yourself mentally active.

Final Thoughts

Research has found that chronic illness is unique to each physical body. One medicine doesn’t heal the masses.

To the veterans of chronic illness and to the newly diagnosed–I learned the hard way that you have to design an action health plan that is unique to your body. You have to conduct research, trust your body and invest in your health.

 

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.)