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.

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...

 

The One Realistic Morning Routine That Will Make You a Better Person

We don’t have to engage in grand, heroic actions to participate in the process of change. — Howard Zinn

Morning routines are all the rage. They set the tone and increase optimal achievement throughout the day.

According to the ultra successful like Oprah and Tony Robbins — ice baths, hot yoga, soul-cleansing meditation, marathon journal sessions and frolics up a mountainside at sun rise are just a few things you’ll need to do before breakfast in order to be more successful, happier.

But what if an elaborate morning routine is simply not realistic?

What if you’re a working parent who, along with getting yourself together, have to wake up the kids and pack lunches and make breakfast and brush teeth and wipe butts and study for the looming tests and break up fist-fights in the hallway?

Proponents may suggest, “How about waking up earlier?”

Um…how about no.

I wake up at 5:15 every weekday, 6:30 on weekends. I get to bed around 10:30–11 during the week. And on the weekends, I often collapse on the couch by 9.

So if waking up earlier is simply not an option how can we — the breakfast-builders, lunch-makers, teeth-brushers, butt-wipers, teachers and referees of the household get our day started right?

Since I have only about an hour each morning before I leave for work, here’s what I do…

Every morning, for the last 45 days I have practiced a three point reflection.

It’s nothing elaborate.

As I’m having coffee I scratch down three things I am grateful for.

Here’s what it a page looks like…

Here’s my journal entries from 9/4 to 9/15

Some mornings the three points come quick and my reflection takes less than a minute. Other days I have to sit longer and reflect deeper until I find 3 things I’m grateful for. But even on mornings of longer reflection, the practice is completed within 3–4 minutes.

It’s a simple habit which requires no special journal or pen. Just a legal tablet or notebook. But in 45 days I’m realizing the positive effects the practice having on my mental health.

Here’s what I learned…

My first thoughts of the day are positive

It’s so easy to wake up on a Monday morning and think negatively about the day ahead and about all the things you have to do before you limp back into bed at night. The 3 point reflection requires you to develop positive thoughts before the chaos of the day begins which helps you embrace and welcome the impending day.

I get to have me time

Parenting gives you little time to yourself. But as a parent you need to find time for yourself. You need to be constructively selfish. By doing so, by taking care of yourself, even if it’s only a few minutes, you will have more patience and energy for others.

I’m more present throughout the day

Identifying good moments each morning has trained me to look for good moments and appreciate good moments as I encounter them throughout the day. The daily chaos often distracts us from finding meaningful moments that we should acknowledge and celebrate. The simple 3 point reflection allows you to celebrate those moments which in turn inspires you to find more of those moments as the day stretches on.

I’m learning humility

It’s so easy to complain. It’s so easy to take your life for granted — to forget that you have electricity and running water and food in the refrigerator. It takes only a few minutes a day to recognize all of the luxuries you take for granted and how humbling it is to have such luxuries.

I just feel happier

Happiness and gratitude are a package deal. You can not be happy and ungrateful at the same time. Learn gratitude and you’ll find real happiness. The 3 point reflection is a daily emotional inventory that allows you to acknowledge things in your life that make you happy. It’s also a daily reminder that you need to give the present day your best effort so tomorrow, when you sit down to reflect, you will have three moments worth writing about.

Daily life is dizzying. Sometimes I feel all I do is run, run, run and sometimes it seems impossible to find a moment’s peace. But finding those quiet moments in the day are crucial for your mental health. It’s those quiet moments that help you to slow down, gain perspective, better yourself and realize that despite the impending chaos of the waiting day there are at least three things to be grateful for.

Be well,

Jay

What’s the World’s Greatest Lie?

It was a tradition of sorts.

In the initial months following my diagnosis, after each doctor’s appointment, I would go to the bar

Given my deteriorating health, maybe a few pints and a plate of fried pickles was not the most constructive response, but sometimes nothing soothes a fractured soul like the warm panel walls, a friendly jukebox and the comfort foods of a corner bar.

I remember sitting with my wife and parents and two brothers, talking through the details of my appointment in low, weighty voices.

We had drinks and ate deep fried vegetables and to snap the tension, someone would say something funny and we’d laugh, but not too loud. Because, now was not the time for laughing loud.  Now was the time to make sense of bad news.

I remember the hallow clinks of pint glasses and finding things to do with my hands– bending coasters, tearing bar napkins into confetti–and feeling helpless and powerless. Like sitting in the last pew at my own funeral.

For awhile I believed there was nothing I could do. It was final–I was stricken with some rare disease. Period. And I remember believing how utterly unfair it was.

If our language confirms what we believe, relying on the phrase “it’s not fair…” cements our belief in the world’s oldest lie, which according to the novel The Alchemist is:

At a certain point in our lives, we lose control of what’s happening to us, and our lives become controlled by fate. That’s the world’s greatest lie.”– from The Alchemist by Paulo Coelho

A few years ago, a student suggested that I start a blog.

Why?

Because sometimes you say interesting things in class.

Sometimes?

Yeah, sometimes.

Not to go all Hollywood here, but in serious ways this blog, saved my life.

Because I’ve learned that it’s not the bad news that matters, it’s our response that does.

Our self-victimization vexes others to where they will lose patience and tune us out. Their previous pity sours to apathy.

By bemoaning our bad news, we empower our bad news. We waste vital energy needed to command a positive response to conquer such bad news.

And plus, self-victimizers with their bloated bellies of self-pity and self-delusions make for terrible drinking partners.

Be well,

Jay