Taking Notes: A Love Story

The following post is the first entry of the The February Project: Love and Marriage, a self-imposed month long writing project on love and marriage.

“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.” from 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

 

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.

 

The Strength in Weakness- Student Voices (Guest Post)

Vulnerable and powerful, The Strength in Weakness is an unflinching personal narrative written by one of my female students about her dangerous attempts to achieve the physical perfection. 

In the age of social media, the social pressures to conform to conventional notions of beauty are dangerously high for teenagers, especially for females. 

The Strength in Weakness captures the physical and emotional pain that girls often endure to as they desperately try to satisfy society’s unrealistic demands of beauty. 


Meet the Writer

Sydney Flyge is 12th grade student at Robbinsville High School (New Jersey) and plans on attending Clemson University or the University of Washington in the fall of 2018.

Sydney intends to double major in psychology and Nutritional Science in hopes of, one day, being able to help people overcome obstacles pertaining to nutrition and mental health, as someone once helped her. 


Pat, pat, pat, pat

The sound of footsteps hitting the pavement matched the beat of the music infiltrating my ears. A dull ache enveloped my quadriceps and calf muscles. The ache slowly spread like a drop of food coloring on a paper towel, across my stomach, up my back, eventually reaching my deltoids and biceps.

Pat, pat, pat, pat.

The aching intensified.

My muscles screaming

I did not enjoy the struggle of my run.

The slow, thumping drum beats in my temples matched those of my heart, decelerating with every passing step. I realized that the dull ache of starvation in all of my muscles meant that I could feel them breaking down. The outer edges of my vision blackened each time my foot made contact with asphalt. Trapped, surrounded by trees in a cornfield on the middle school’s property in the dead of summer, I thought about dying.

And I remember realizing that no one would find me there.

I accelerated with the intention of making it only as far as the Pond Road Middle School parking lot. A place where my mom, or an ambulance, could easily pick me up.

I dug deep to overcome the shallow breaths depriving my starving muscles and organs of oxygen, I made it the half mile it took to get back to the parking lot.

I was lucky.

Surprised at my own accomplishment upon reaching the access road between the middle school and high school, I heard a familiar voice in the back of my head. She said: You just made it a half mile, what’s the one and a half more it takes to get home? If you quit now you’re weak. If you call your mom, she will get upset. You do not want to make her upset do you? And then she will tell your dad. And when he gets home he’ll shovel that fattening protein powder into a blender bottle and ask you to drink it in front of him. Do you know how many calories are in that protein powder? Don’t be weak.

My legs carried me the last mile and a half home. 8 miles. I had to eat a tangerine prior to entering the shower, to avoid collapsing.

35 calories.

In the moments between the tangerine and passing a mirror en route to the shower, my emaciated frame was covered by a thin, yet visible, layer of fat.

Frail shaking fingers grazed the skin under my belly button. My abdominal muscles, although toned and hollow, felt squishy. Suddenly I could no longer see the grooves in between every rib, my predominant collar bone vanished, my thighs thickened and my face swelled.

35 calories.

Exiting the shower, I dried myself and labored to my bedroom. Dressed in underwear and a fitted tank top, I stood gaping at my reflection. Contemplating the image before me for what could have been hours, I studied every crevice, every limb, from every angle.

I uncapped a black expo marker and began marking up my reflection. I circled my thighs, my obliques, my neck, the backs of my arms. My problem areas. With imperfections to remove, I needed to fake my usual ailments to escape dinner.

“I feel nauseous.”

“Well maybe you need to put something in your tummy?” My mom returned hopelessly.

“That would make it worse,” I started, “I think I’ll just go to bed early.”

“Okay” She agreed with silent protest.

Once upstairs and safely on the other side of my bedroom door, I turned the lock and approached my closet. Pushing aside heavy jackets to reveal the weights I had hidden on the shelves behind them. The bruises lining my spine from muscling through a thousands of sit-ups.

I stopped after I burned 35.

I had worked off the tangerine.

But then her voice echoed in the back of my mind. You could keep going. No one would know. Don’t be weak.

I continued.

My luck lasted for months. Allowing me to push and push without any potentially lethal consequences.

Pat, pat, pat pat.

Then, one day my luck ran out.

Pat, pat, pa—.

And that was the luckiest thing that ever could have happened to me.

For months my mind forced my body to run itself into the ground.

And it took years to repair the damage.

But you will have to wait to hear the rest of the story.

My mom is calling me to dinner.

Accepting Uncertainty: The Most Important Question A Chronic Illness Patient Can Ask

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.


Why am I sick?

What did I do to deserve this fate?

Like a car accident, a chronic illness often slams you without warning.

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

My symptoms happened overnight.

Literally.

One day I was coaching and playing soccer and the next day my vision was blurry, my head was spinning and my legs were so weak I could barely 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 5, 2013 an MRI of my brain revealed that I had cerebellar atrophy–a deterioration of nerve cells in the cerebellum.

In April of 2015 a biopsy of my thigh muscle revealed I had sarcoidosis– a chronic illness that causes muscular and organ inflammation.

And even with those confirmations I was still so confused, so frustrated, so angry.

Why did I get sick?

What could I have done differently to avoid this fate?

If there was a God, why was he doing this to me?

A chronic illness unnerves you.

For years I endured moral freezes. I couldn’t think, decide. I couldn’t, as my old soccer coach would bark, “get my shit together.”

Like a high stakes game of hide-and-go-seek, success in life is often predicated on our curiosity, our desire to seek until we find what we are looking for.

But what happens when you’re sick and short on energy? What happens  after years of blood tests, biopsies, scans and observations experts still shrug and admit they don’t know?

What happens when you simply can’t find what you’re looking for?

Five years ago I did not realize that uncertainty is an opportunity for growth and change.

I was obsessed with questions like:

Why am I sick? What did I do to deserve this fate?

But those question lead me nowhere. Those questions only increased my confusion, frustration and anger.

Five years later I still have those questions but I’m in a much better place.

Why?

Because I edited down all of my questions into the most important question I’ve ever asked:

I’m sick…

..Now what am I going to do about it?

This question forced me to do two things:

  1. Accept the situation.
  2. Assume responsibility and take action.

It’s only natural when you’re suffering with a chronic illness to ask the unfocused, unanswerable questions. I did for years. But those questions are like a hamster wheel. They’re exhausting and repetitive and get you nowhere.

A question like, “why is this happening to me?” gives your illness power and permission to seize control your life.

You can not allow a chronic illness to impose its will on you.

You must go on the offensive, take action and attack for as long as you can.

Because taking action builds strength, confidence and independence.

Three feelings that I had almost forgotten about.


Here’s how I attack chronic inflammation:

Here’s how I attack my cerebellar atrophy:


The uncertainties of my illnesses inspired me to make greater investments into my health.

And five years later I’m finally off the hamster wheel.

I’ve made myself responsible.

Because when you’re grappling with a chronic illness you must push back, you must reclaim your health.

Because it’s your health and only you can do something about it.

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)

What’s The World’s Greatest Lie (Published on September 14, 2017)

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

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

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

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.