What my 7 year old son and a friend with a terminal illness said about happiness

I’d like to thank the Lexus “December to Remember” commercial for fueling my recent obsession with happiness.

You know the commercial: On a perfect snow sparked morning a well groomed man finds a new Lexus topped with a big red bow trophied in his sprawling driveway. The man smiles then hugs and kisses the hood of his new toy as his tall, attractive wife and their beautiful blue-eyed children stand nearby and smile and dote and radiate with plastic happiness as a voice tells you how easy and affordable it is for you to own a sleek, well-equipped Lexus.

The message is simple and clear — If you buy or lease a Lexus this holiday season you can buy or lease happiness.

Now that’s a good looking family…but it’s an even better looking Santa Claus!

The commercial then gives way to the football game my 7 year old son and I are watching. We’re curled together on the couch, sharing a blanket. It’s a rare scene, especially for December. My son, the Energizer Bunny, is almost always moving, always playing. And with the promise of Christmas so close, his energy seems even more boundless. But at this moment, he is still, as if someone removed his batteries, and I know this might just be my only time to ask him.

“Hey Chase can I ask you something?”

The quarterback drops back to pass. Chase delays his response long enough where I think he’s ignoring me. The quarterback completes a 12 yard pass to a receiver who’s shoved out of bounds by a streaking defender. First down.

The teams huddle and the referee sets the football at the line of scrimmage and without unlocking his eyes from the television looking Chase says, “Okay.”

A little surprised he was even listening, I nod and smile and ask, “What makes you happy?”

The quarterback drops back to pass again and Chase turns and looks thoughtfully at me, as thoughtfully as a 7 year old can look, smiles and says “ I guess…spending time with you and mom.”

“Really?”

“Yeah like when we all went to the movies last week. That was fun.”

He smiles.

I smile.

Touchdown.

I didn’t want to text my friend. She’s dying.

My friend Deb Dauer was diagnosed with ALS in September of 2013. Before her diagnosis, she was an elementary school teacher in the district where I teach and an early supporter of Write on Fight on. Now she’s chronicling her inspiring fight with ALS on her blog Not Gonna Be a Debbie Downer. 

Though my interactions with Deb have been mostly through email and Facebook, I feel a kinship with her. We are parents and teachers and writers who, for better or worse, wear our hearts on our sleeve.

I felt like an asshole bothering Deb with my pretentious existential crisis. I mean, she’s warring with one of the most hellacious diseases we’ve never cured. Clearly, she’s busy.

But the question lingered then gnawed. What would someone with a terminal illness say about happiness? 

It took me almost an hour editing and revising and second-guessing and ego-checking before I finally braved up and sent the following text…

“What makes you happy? Lately I’ve been obsessing over natural vs. plastic happiness and would value your sentiments. But please, no obligations. Be well.”

True to her awesome self, Deb responded with…

“What I’ve found that it is connections with other people that really make me happy. And in turn time and experiences with them.”

In the heart of the Lexus “December to Remember “ sales event Chase and Deb confirmed what I already knew, what most of us know — that relationships are the fruits of happiness. A 7 year old boy, a dying woman cemented such truth — we are fragile and finite but in relationships we find strength, we experience forever.

Why is such simplicity so hard to understand? Why do we foolishly think that one more material possession will sprout the happiness we so desperately desire?

And so if growing up is a just matter of perspective, it’s curious to think that we’ll spend so much pain, energy and money trying to realize what we knew all along.

Be well,

Jay

PS–Set your DVR! On Sunday (12/10), Write on Fight on and the Write-a-Thon will be featured on PBS’s Emmy-Award winning show Classroom Close-Up NJ. Air times are–7:30 am, 12:30 pm, & 7:30 pm. Here’s a link a link of cable providers/channels where you can watch the show… http://classroomcloseup.org/where-to-watch/

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

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

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

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

1. What do you mean by veganish?

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

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

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

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

3.What food do you miss the most?

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

4. Do you have a favorite vegan meal?

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

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

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

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

No.

7.Have you eaten fish?

No.

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

Only for this picture.

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

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

10. Do you take any vitamins or supplements?

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

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

11. Aren’t you always hungry?

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

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

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

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

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

Be well,

Jay

You Can’t be Happy and Ungrateful at the Same Time: 50 Things from My Gratitude Journal

Happiness and gratitude are a package deal. You can’t be happy and ungrateful at the same time. Show gratitude and you’ll find happiness.

Dr. Robert Emmons, a psychology professor at the University of California, has spent his career researching the impact gratitude can have. Emmons stresses, “Gratitude is not merely a positive emotion; it also improves your health if cultivated. People must give up a “victim mentality” and overcome a sense of entitlement and deservedness.”

How often, in these hyper-speed times of ours, do we fail to slow down to appreciate moments and things that afford us happiness? How often do we feel discontented with our material possessions? How often to fail to give thanks for the gift of life?

In an attempt to grow my gratitude, to find new levels of happiness, I recently adopted the morning practice of writing down 3 things I’m grateful for. It’s nothing fancy. It’s just a pause every morning before the chaos of the ensuing day to acknowledge 3 things I’m grateful for. Some things are deeply personal and others are observatory. But all, in some way, have added to my happiness.

Here are 50 things from my gratitude journal:

1.The first sip of morning coffee.

2. A job.

3. Seeing my children smile on the first day of school.

4.That Paulo Coelho shared my review of his novel The Alchemist on his Twitter feed.

5.When old friends you haven’t talked to in awhile call.

6.That a healthy diet is relieving my chronic joint pain.

7. Inside jokes.

8.Talking sports with my dad.

9.Having a fair and honest work evaluation that provided meaningful feedback.

10.Sunday dinners with my parents and brothers.

11. My wife’s willingness to listen to my repetitive (and probably boring) work stories.

12.When former students return from college and visit.

13.Watching my parents teach my children how to play poker.

14. When strangers hold doors, smile and say things like, “Good morning” and “Have a good day.”

15. Bruce Springsteen’s “Thunder Road”.

16. Having people read and share my writing.

17. My parents making me get a job when I was 14.

18. Viktor Frankl’s memoir, Man’s Search for Meaning for teaching me that real hope only arises when we find meaningfulness in our suffering.

20. Amazon Prime.

“Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for.”
― Epicurus

21. Thank you notes.

22. The snooze button.

23. Listening to the staccato rhythms of my youngest son reading.

24. One of my students getting accepted into their dream college.

25. My son being voted Class President of the second grade.

26. Hot showers.

27. That my parents are still alive and have been married for almost 40 years.

28. Three day weekends.

29. The patter of my children’s rushing feet in the morning.

30. The Things They Carried by Tim O’Brien for teaching me about the power and humanity of storytelling.

31. Seeing my daughter score a goal in her soccer game.

32. That my wife supports me.

33. Having the financial ability to pay bills.

34. The ability to write and tell stories.

35. Mousetraps.

36. Seinfeld reruns.

37. The Philadelphia Eagles for currently exceeding expectations.

38. Listening to my children invent and tell their own jokes.

39. The freedom of choose how I respond to any given circumstance.

40. 7 Habits of Highly Effective People by Stephen Covey for making me consider ways to improve upon my relationship with myself and others.

41. The Tim Ferriss Show podcast for reminding me that asking questions is a pivotal practice for growth.

42. Urgent Care facilities that are open late on Saturday.

43. Sam Adams Octoberfest.

44. Having a wood burning stove.

45. Falling asleep on the couch.

“Cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously. And because all things have contributed to your advancement, you should include all things in your gratitude.” — Ralph Waldo Emerson

46. Classroom laughter.

47. Classroom silence.

48. Well-insulated travel mugs.

49. Christmas wishlists.

50. My health.

Thanksgiving week is a great time to express gratitude. However, I’ve learned that sustainable gratitude is work. Like anything else gratitude requires daily attention, daily maintenance. This holiday season I hope you find time to focus on daily gratitude. It’s proven to boost your mood, deepen your relationships and if not for anything else — make you smile just a little bit more.

Happy Thanksgiving!

Be well,

Jay

The Pilgramage (or why I really went to Atlantic City last week)

“Everything dies, baby that’s a fact
But maybe everything that dies some day comes back.
Put your makeup on, fix your hair up pretty
And meet me tonight in Atlantic City.”

Bruce Springsteen, Atlantic City

Last Friday I made the 60 mile pilgrimage from Philadelphia to the Atlantic City, New Jersey to present my writing workshop “Learn to Write like No One is Reading” at New Jersey Educators Convention.

The workshop, a culmination of strategies and experiences I’ve accumulated over the last 15 years of teaching, explores how teachers can use storytelling as an instructional practice to deepen student learning while helping students further embrace the writing process.

The workshop was well received by the audience. They actively participate, smiled, laughed at my jokes and from what I could tell, left with at least one new strategy to use in their classrooms.

For the last few months I’ve been making presentations at various professional learning seminars. And I’ve come to really enjoy talking literacy and helping educators facilitate classrooms that promote writing and storytelling so to inspire their students to become better writers.

But if I’m being purely honest — the real reason I went to Atlantic City last week to present a writing workshop was a purely selfish one.

The Real Reason

In September of 2013 an MRI revealed that I had suffered significant brain damage.

However there was no clear catalyst — a car crash or a fall — to warrant such loss of brain matter so quickly.

In October of 2013, after the Director of Neurology at Jefferson University Hospital examined my MRI he acknowledged majority of my cerebellum had died, suggested I start testing for every known debilitating and fatal disease and then asked if I had long-term disability insurance.

“No.”

“I can’t predict what will happen to your brain,” he paused and looked over at the MRI still displayed on his computer screen, “but if you can somehow acquire long-term disability insurance I think you should.”

The Silver Lining

During its annual Convention, the New Jersey Educators Association has a no-physical-required, no-questions-asked open enrollment period for its long term disability insurance.

The only caveat was you have to enroll in person at the Convention in Atlantic City.

So in November of 2013, as mom drove the 60 some miles to Atlantic City, we outlined my plan —  enroll in long-term disability insurance and brave on long enough for the paper work to process so that when I when inevitability lose the ability to speak or see or lose muscle function and can no longer work, my family would’t be so financially burdened.

When mom dropped me off outside the Convention Center, I told her to circle around the block because I wasn’t going to be long. I guess because when your life is undergoing a massive reconstruction sometimes you have no choice but to work as fast as you can.

I mazed through the Convention floor until I found the Prudential Insurance booth where I asked a few questions, looked at a few charts, enrolled in the long-term disability program, hustled back the way I came, walked out of the Convention Center, into the cold November sunlight and waited for mom to pick me up and take me home.

The purpose of a pilgrimage is about setting aside a long period of time in which the only focus is to be the matters of the soul. Many believe a pilgrimage is about going away but it isn’t; it is about coming home. Those who choose to go on pilgrimage have already ventured away from themselves; and now set out in a longing to journey back to who they are.” 

L.M. Browning, Seasons of Contemplation: A Book of Midnight Meditations

Last Friday I selfishly trekked 60 miles from the Philadelphia suburbans to the Atlantic City Convention Center.

In a way, I found something redemptive in those hard-earned miles. And though skirting pot holes and grinding through traffic can not repair the damage in my brain, it did remind me that somehow I’m still very much alive and that I still have a story to tell.

Be well,

Jay

How I Finally Kicked Prednisone’s Ass

After a three year fight with the infamous steroid Prednisone — I’m proudly standing in the middle of the ring and raising my arms in victory.

In July of 2014 my rheumatologist prescribed a moderately high daily dosage of 35 milligrams of Prednisone to relieve my chronic inflammation and joint pain caused by the autoimmune disorder — sarcoidosis.

The morning after taking my first dosage I felt awful. Like frat party hung over awful. Nausea, headache, hot flashes, exhaustion.

Then, 48 hours later, while vacationing at the New Jersey shore I felt like Superman. Tossing the football around with my sons, swimming in the ocean, riding waves like I had never been sick.

The Problem

Prednisone will relieve pain and inflammation. But nestled inside those little white pills is a real danger. Long term exposure to Prednisone can lead to a weakened immune system and cause weight gain, depression, diabetes, osteoporosis and a cavalcade of other fine ailments.

Prednisone is not a cure. It’s a mask. A contradiction. It reduces inflammation and it improves the immediate quality of life while silently and slowly destroying bones and organs.

For the last 3 years I have struggled to reduce my dependency on Prednisone. Following my rheumatologist’s instructions I began slowly weening off the drug— 5 milligrams at a time. I worked down to 10 milligrams a day but every time I dropped below 10 the pain and inflammation would return and intensify.

My rheumatologist explained that I should prepare to for a life sentence with Prednisone.

While on Prednisone, I gained about 20 pounds. When I broke a bone in my foot, it took nearly 5 months to heal — tripling the amount of time it should have taken to heal. And though I was never diagnosed with depression, I did endure long bouts helplessness and loneliness which I believe was triggered on my dependency on a drug that was murdering months of my life away.

The Challenge

Over Labor Day weekend, my good friend Casey challenged me to a two-week vegan challenge.

At first I balked.

How could I, a life long carnivore, give up t-bones and hot wings? It wasn’t me. I wasn’t a vegan. I don’t wear sandals. I don’t hug trees.

I sent him a text saying I would think about it.

And I did.

I sent another text explaining that I would try to slowly ween off meat and dairy — one meal at a time.

Then I thought about it more. I thought about my future-self bloated, ripe with diabetes, brittle-boned and blind. I thought about my children. About playing football on the beach again. I thought about how helpless I felt. And I thought about dying young.

So in a flicker of bravery I said fuck it. Two weeks of no dairy, no meat. Cold turkey. Let’s do this.

Why Vegan?

Casey also told me to watch the documentary, “What the Health, an unflinching look at how the meat and dairy industries are sleeping with the government and how meat and dairy foods trigger so many autoimmune and inflammation issues.

So I watched it. At first I was skeptical and even a bit naive. Why would my government, the one I Pledge Allegiance to every morning, lie about the importance of milk? Humans need milk. Milk does a body good. Right?

Understand, I’m not a doctor. I’m just a guy with a blog and autoimmune disorder who’s trying to live his best life. But if you’re struggling with inflammation or an autoimmune illness I would recommend looking at your diet. You may realize the food you’re fueling your body with is actually the stoking the fire of your illness.


In his article , “How Does Meat Cause Inflammation?”, Dr. Michael Greger explains how a single meal of meat, dairy, and eggs triggers an inflammatory reaction inside the body within hours of consumption.


The Victory

After smashing through the two weeks, feasting on only plant based foods, something happened.

I felt good. Like really good. Like how I felt during the first few weeks on Prednisone. I was feeling so good I decided to abstain from Prednisone for one day to see what would happen. I did. And I felt great. Then one day without medication turned into two. Then a week without Prednisone passed. Then another week. And suddenly I was living a Prednisone-free life.

When I decided to forego my medication I did not consult my doctor. I made a simple, conscious decision to improve my own health.

I’m learning that the most unsatisfying thing is to be a spectator to your own life.

~~~

I’ve been vegan for 8 weeks. I’ve been Prednisone-free for almost 6 weeks. I wish I could tell you that it’s been a hard lifestyle change but it really hasn’t. Sure I miss bacon and cheeseburgers and bacon cheeseburgers but don’t miss the pain. I don’t miss the dependency. I don’t miss being a spectator.

I’ve lost 10 pounds in 6 weeks. My inflammation and joint pain have completely disappeared. And most importantly I no longer feel helpless. I have gained control over my health. I’m now in the ring, proactive in my fight, which is the most crucial step for anyone living with a chronic illness.

I’m not symptom free. Sarcoidosis caused irreversible brain damage that effect my balance and vision but since converting to veganism I’ve found a fighting spirit I thought I had lost.

I just think if you can find a reason to fight — and there’s always reason to fight — if you can make changes, if you can find the courage to roll up your sleeves and trade punches with your illness you’ll learn you’re a hell of a lot tougher then you ever thought you were.

And you may realize that you were the champion your life so desperately needed all along.

Be well (Eat well),

Jay

I want to thank my friend Casey for challenging me. I owe you brother. I guess some times we all need a push to find our better selves.

Humbled and Honored

My story, The Day I Learned I Could No Longer Jump (or learning to fly) was recently published in the National Ataxia Foundation’s quarterly journal “Generations”. 

I want to thank Stephanie Lucas, the Communications Manager of “Generations” for publishing my story.

I also want to thank all of those who read the story and offered their kind sentiments. I hope my story helps you tell your own.

Thank you,

Jay
 

The Scary Work of Redefining Yourself

It was this week, last year that I published The Day I Learned I Could No Longer Jump ( or learning to fly). It was one of the greatest leaps I ever took.

Here’s why.

Any writer who tells you they’re not worried about how their work will be perceived is lying.

Look dear reader, I want you to like my work. Scratch that — I want you to love my work.

I want you to read each post twice and share it three times.

I want you to think about me as you’re buttering your morning bagel or waiting for the elevator doors to open.

I want to make you laugh and cry. Give you chills and rock your soul and make you turn over the wonder and magic and mystery of your own life.

But in order to accomplish those Herculean things I need to be honest, authentic and share my story. I need to tell you things I’ve yet to tell my wife. That’s our agreement. And that’s why, sometimes, writing is incredibly hard.

In the quiet hours of life, I often think about my twelve weeks at the St. Lawrence Rehabilitation Center. About the new truths I learned. About how I learned I could no longer jump. About how quickly years of the personal definitions of me being a man strong and athletic crumbled to the cold linoleum floor on a gray December afternoon when an unassuming physical therapist asked me to jump.

What I tried to capture in The Day I Learned I Could No Longer Jump was the raw embarrassment and shame and sadness I felt in those rehab sessions.

What I didn’t tell you in that story was how scared I was.

The fall and winter of 2013 was the most terrifying stretch in my life. It wasn’t the thought of dying, which did hang heavy in those days, it was a fear of redefining myself. My brain was damaged and the doctors didn’t know why. But the scariest part was digesting the news that parts of me could only now be found in photo albums and in flickering reels of memory.

Take your parents or grandparents. Great people I’m sure. But they’re set in their ways. They detest change. They’ve got their favorite chair, their eternal pair of slippers. They’ve been buying the same toothpaste for 30 years. They’re comfortable. They resist to change. And it drives you crazy but they’re too advanced to redefine themselves. So you smile and accept it.

I knew that my season of physical rehabilitation was crucial. I knew I had to let go of who I was — an athlete, coach and begin the painful and confusing task of redefining myself as a writer — before it was too late.

Redefining yourself is not easy. It’s scary. You’re not a kid but you fear judgement and criticism the way you did in high school. And sometimes redefining yourself becomes dangerous work. Drugs, alcohol and other destructive habits become your new definitions.

But I’ve learned that if you redefine yourself positively and purposefully you can tap new potentials.

When you write your new definitions you find new ways to in be strong and empowered and your life is suddenly swirling with exciting possibilities. You discover new energies. New angles. You begin to realize your potential.

Aside from William Faulker, any writer will claim that editing while writing is a literary sin. You write and write and write then edit. They are separate adventures. But this is life. You can’t write, enjoy a cup of coffee, take a breath then edit your past. We must write and edit at the same time. You must redefine yourself as you go. And it’s unnatural. It’s hard. It’s really fucking hard.

But dear reader, it might just be the most important thing you ever do.

Be well,

Jay

The Day I Learned I Could No Longer Jump ( or learning to fly)

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...