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)

12 Things I Learned This Summer

As a teacher, my relationship with summer is complicated.

I love being lazy at 10 am. I love long afternoons on the beach, watching my children build sand castles and dig for shells. I love impromptu BBQs and staying up past 11 pm on a Tuesday to watch reruns of The King of Queens.

Yet, after a few weeks of freedom, I miss the routine and discipline it takes to survive each school day.

Sure, I love spending time with my children especially when they’re smiling and sharing…not so much when they’re being loud, selfish jerks.

Summer’s complications provide good reflecting material. Here are 12 things I learned or came to better understand this summer:

1. The movies are (still) outrageous

As a kid, when mom would take me to the movies, she would stuff her pockets with contraband– homemade popcorn packed Zip-lock baggies, juice boxes and shoe string licorice from Woolworth’s– and tell me that concession prices are simply too outrageous to buy anything. That was 30 years ago.

Embarrassed and annoyed, I’d tell her that when I’m a father I’m going to buy my kids food at the theater.

On a rainy summer day, I left the wife home and took the kids to see Despicable Me 3. Yet after 4 tickets and 4 sodas (yes, I bought each kid a soda because I’m dad and I’m awesome) and the the 5 gallon tub of popcorn totaled $72 I firmly announced to my children that the movies are outrageous and they’ll never be dining at the theater again.

I think I owe mom an apology.

2. Your credit card company may have a “pay down program”

On a recent statement I noticed how much I was paying in interest a month. Embarrassed and annoyed, as if my credit card company had courted me to the movies with its deep pockets filled with pre-bought snacks, I called and talked to a representative and learned that my credit card, Discover, has a “pay down program”. After you enroll (which is free) simply pay any amount over the minimum monthly payment and Discover will apply a 5% credit to your minimum payment.

Which means, if your monthly minimum is $100 and you pay $100.01, Discover will apply a 5% credit to your statement, subtracting your balance by $5.

If your looking to pay down your credit card it’s worth finding out if your credit card company has a similar program.

3. Surprise your children

When I recently asked my daughter what the best thing about this summer, she replied, “The surprise trip to Tennessee.”

In July, Cindy and I surprised the kids with a trip to visit family in Tennessee. We rolled the tikes out of bed, assembled them on the couch and announced we were boarding a plane to Tennessee in 4 hours. They had no choice but to brush their teeth and be excited.

A family trip is great. A surprise family trip makes it that much more memorable.

4. Your marriage requires you to be proactive

This summer I read a lot about living a proactive life. It’s apparent that addressing your problems before they gain mass and weight is critical to living a healthy, happy life.

After 12 years of marriage ( I’m not an expert by any means) but a proactive marriage–one where you address feelings and choices as they arise– is the healthiest thing a married couple can do. Passiveness and inactivity in a marriage creates tension, frustration and division which only further compound the relationship.

5. You control your destiny

I found one of my new favorite books this summer–The Alchemist by Paulo Coelho. It’s a simple, parabolic read. A boy journeys through the desert searching for wealth yet along the way he learns about the realities of life.

The Alchemist stakes this truth– no matter the circumstance, we hold ownership over our actions. By victimizing ourselves, by blaming others, by skirting responsibility we stunt our growth, we immobilize ourselves.

I’m so glad I found this book and, if it hasn’t already, I hope it finds you.

6. Vitamins are good

After a friend’s suggestion, I ordered and tried a vitamin package from The Melaluca Company called Peak Performance Total Health.

I take two vitamin packets a day, one in the morning and one at night. The packets are filled with 12 supplements and vitamins.

After two months, I’m happy with the results. I have more energy, better focus and my joint and muscle pain have noticeably decreased.

Also, I began taking Vertisil, which is an all-natural supplement to help relieve symptoms including balance, vertigo and motion sickness. You can order it on Amazon but it’s a little pricey at $40 for 60 tablets. However, I would highly recommend it for anyone struggling with balance issues.

7. Trust your change

I kicked-off summer by delivering the commencement speech at my high school’s graduation. Trust Your Change was the speech’s title.

Trusting your change is hard. But what helps to better accept change is having a set of cemented principals like honesty, discipline and patience that stand as everlasting personal pillars, that weather uncertainty and provide us the courage to trust our change.

Having such principals lessens the stress of change.

If you work on establishing principals, trusting your change becomes more natural.

8. It doesn’t hurt to ask

This summer I interviewed authors, teachers, entrepreneurs and professional storytellers because I wanted to learn more about their craft.

At first it was a little intimidating cold-emailing strangers and slightly disappointing when a few didn’t respond. However, in the end, more people responded than those who didn’t.

I talked to some great people this summer, like award-winning storyteller Hillary Rea, and learned that if you’re genuinely looking for help most people are willing to field your questions and offer such help.

9. Sometimes no one shows up

In consecutive years, August has proven to be my toughest blogging month. As summer concludes the traffic on writefighton.org is at its thinnest.

Sure it’s a little frustrating, but it’s the serving of humble pie I occasionally need.

August is a reminder that writing is about honing a skill and putting in unseen work, like shooting foul shots in an empty gym.

Writing requires practice even when no one is reading.

10. Medium.com is a great place to spend time

If you’re looking for something interesting to read or thinking about blogging but don’t want the hassle of building your own blog I recommend medium.com.

Medium.com is free site where you can write, share and read articles on essentially any topic. (I’m a big fan of the life lessons and writing articles).

I joined medium.com last summer but didn’t get serious until this summer. If you want to read more or publish your own work then you should definitely check out medium.com.

11. It’s ok to let your children go

Just as I pulled into the parking lot for her soccer practice, Haley said, “Dad just drop me off here. I will walk up to practice.”

“It’s ok sweetie, I’ll park and we’ll walk up together.”

“No, I can do it myself.”

When she turned 9 in April, Haley’s feet began growing roots in the soil of stubborn independence. Seeing her everyday this summer made me realize how she’s distancing herself from childish things and stretching into adolescence.

12. It’s only nature that summer passes by

There’s a tendency at the end of the summer to lament how fast the summer has passed. But that’s life. The brevity amplifies the beauty of it all. Watching the seasons, watching people you love transition from one phase of life to the next is what gives brilliance to the human experience.

I hope your summer season was filled with a lifetime of warm moments that ride with you deep into the future days of your life.

Be well,

Jay

My Advice to Young Adults about Work (or Why I Want to Pee My Pants )

It’s graduation season.

And every June, I get asked by soon-to-be high school graduates big questions about work.

“How do you know your doing the right work?”

“How do you find work you’re passionate about?”

“How do you avoid unhappiness and complacency?”

Though I don’t consider myself a beacon of wisdom on such matters (I’m still learning myself), I’m always flattered and (always) a bit stunned by the demands of these questions.

And despite having graduated high school almost 20 years ago and am now 20 years older than most of my students, I’m still wrestling down a response.

But here’s my latest attempt to explain what I know about work.

Bladder Problems

Dylan, my 3 year old son, is stretched on the living room floor playing with his trucks, pushing them across the carpet, parking them next to a row of couch pillows.

He makes truck sounds. Honks and beeps and low rumbling growls. He is lost in his little world, playing and imaging, when his eyes snap suddenly wide.

He jumps to his feet, holds himself and launches into some full-body toddler tribal dance.

“I have to go potty, I have to go potty!

“Well go Dylan!”

Still holding himself, Dylan turns, runs across the living room, breaks out beyond sight as the patter of his little rushing feet trails away to the bathroom.

Parents of young children bare witness to the sudden need-to-pee-pneumonia all the time.

Children get so lost in play, so focused on the present that the pangs erupting from their bladder are ignored until the very last moment.

This moment fascinates me — that a mind can be so enraptured, so focused that it’s ignorant to what is going on in the body.

They might have a bumbling vocabulary and their nose always drippy but children possess the stuff of Buddhist monks.

When I reach the bathroom, Dylan is standing at the front of the toilet with his Paw Patrol underwear lassoed around his ankles. He’s head bowed, his eyes studying the tile.

“Dylan, did you go potty?”

He flinches. His shoulders inch closer to his ears. His eyes refuse to look.

Dylan did you go potty?

He slowly, sheepishly looks up , his eyes ache with tears, “No. I peed myself.”

Why More Adults Should Pee Themselves

Sure, it’s hyperbolic, but stay with me.

I love watching my children lost in absolute play, seemingly ignorant to both the outside and inside world. It’s amazing that children can become so invested in play that they will ignore their screaming bladder. ( I hate to brag but a few months ago Dylan’s efforts earned him a tract infection.)

From what I’ve seen, most adults are bored. They find no wonder in their work. So they fill that void with frivolous things, destructive behavior and unnecessary drama.

As adults, we pine to find good work. Work so curious and engaging that we become constructively lost. Work that we joyously return to again and again.

Listen, my analogy may sound sophomoric (and clearly I’m not advocating bladder infections) but it’s absolutely critical for young adults to find good work that inspires deep contemplation, deep play — the kind of work that is hard to walk away from, not because of the money or convenience or ease, but because you simply the love the essence of it.

My advice for all those who will be turning the tassel and contemplating their future profession — if you find work that is the igniter of imagination, the destroyer of clocks, the antagonist of bladders, work that reminds you of what it was like to be lost on the living room floor, congratulations — you found your work.

Be well,

Jay


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Advice from the Dead

The life of the dead is placed in the memory of the living.–Cicero

Recently, while cleaning out the garage, while rummaging through stacks of dusty boxes I came across a brown, unmarked envelope.

Intrigued, I quit rummaging, opened the envelope door and found my grandfather smiling on the other side.

Inside the envelope it’s 1954 and Pop was still years away from being Pop.

FullSizeRender (3)
Mike “Pop” is centered. His right hand holding a pilsner glass. To his right stands his Uncle Al.

Right now he’s Mike and he’s 25 years old and just bought at bar on the corner of Cedar and Pacific Avenue in Wildwood, New Jersey.

He renamed the place “Mike and Ed’s” and he’s serving drinks to a row of rowdy Philadelphians who escaped the tightness of their row home lives for the weekend promise of some New Jersey shore magic.

It’s early evening and the bar, like the decade itself is based with thick,  masculine laughter which overpowers the bouncy doo-wop rhythm of  “Life Could Be a Dream” frisking out the jukebox.

It smells of a different time. Of Old Spice and cigarettes.

I move across the checkered floor to an open seat at the end of the bar and watch Pop make small talk with a few sunburned necks. He laughs and it’s hearty and deep just like I remember.

Pop looks up and nods as if he’s been expecting me.

He turns to the tap, pours a beer in a short pilsner glass and brings it my way. His skinniness surprises me. But the eyes, the smile, the roundness of his shoulders are all there, like they’ve always been.

Pop puts the glass down in front of me. His blue eyes meet my blue eyes and he lays his hand on top of my hand and tells me how he appreciated the funeral, how he appreciated the eulogy I delivered even though it was a bit brief. An entire life in 1,337 words? He thought I should’ve stretched it to at least 1,700.

He winks.

Then his face gets serious.  He tells me he’s disappointed we paid full price for the luncheon after the funeral. He tells me knows an Italian who rents a little room behind the scrap yard along the Delaware River. He tells me the Italian would’ve catered the whole thing, funeral and luncheon, for half the cost.

He tells me he doesn’t have long because other people need him.

He tells me that death is a lot like life in that sense. Someone always needs you.  Someone is always failing to listen. But death, he says, brings infinite patience. Sadly, life does not.

A drunk wearing a tilted fedora calls out, “Mike, Mikey boy bring me over another one. I told the old lady I’d be home by 7 and it’s quarter of!”

Pop shoots the old man a “wait your damn turn old man” look. A look he perfects when, in a few years he becomes a police officer and spends late hours working the fanged streets of southwest Philadelphia.

He returns to me, “See what I mean, no patience.”

Then he gets serious again. Hard lines form around his eyes.

“You know what the living say about the dead? About how, at least, the dead are in a better place.”

I nod.

“Wrong. What the living fail realize is that even though your setting changes, you do not. When you die you take yourself, for better or worse, with you to the other side.  Look around. All these men came here thinking things would somehow be better. But they’re miserable laying bricks in Philly and they’re miserable drinking beer in Jersey. Fools. They thought by crossing the river, by shifting states their life would magically improve. Life, death they don’t work that way.”

He tightens his grip on my hand and says, “It’s not where you are, it’s who you are that matters. The same holds true for the afterlife. And you’re going to mess a lot of things up. But if can let love lead your way you might do just enough to get it right. And if you can understand this while you’re alive, I promise when your time comes, you’ll cross that bridge a happy man.”

He loosens his grip and the other hand drums its fingers on the bar and he looks out the window. His brow bent like mine when I’m contemplating something big.

I study his profile the way I did when I was a kid tucked in the front seat of his white pickup truck.

I remember how he would be driving and singing with Frank Sinatra and his profile would be glowing against the shifting sunlight and when the chorus hit he flashed a hard earned smile, a smile of a man who made peace with his life, with the world. A smile I can’t quite forget.

When his eyes return to mine he tells me the beer was on the house. But that was it. No more freebies. This isn’t a soup kitchen. And if I wanted another I would have to pay for it or wash dishes.

Pop takes his hand from mine. He steps back, smiles like someone about to board a plane and somehow, defying the laws earthly physics I still feel the pressure of his hand resting on mine as he drifts away, down the length of the bar, tending to the others who need him.

A bead of sweat rolls down the glass.

A heavy, hollow laughter steamrolls across the bar.

Something sits in my throat.

I want to call him back.

I want to breathe with him again.

I want to tell him I write stories about him so he doesn’t seem so dead.

I want to tell him how I missed him just a little more around Christmas. How I wish he could hold my children. How I wish they could experience his smile and hear his advice and feel the gentle pressure of his hand against theirs.

But I don’t.

Because you can’t.

Because you can’t tell the dead what they already know.

Because when you open an envelope and you’re greeted by the dead and they squint and smile and speak, all you can do is listen, consider your mortal ways and do your best to heed their eternal advice.

Be well,

Jay

 

Why you Need to Play the Positive Blame Game

The other night I watched the documentary, I’m Not Your Guru, which chronicles the life and work of self-improvement coach Tony Robbins. The film, which is currently available on Netflix, captures the gripping, raw moments of Tony’s Superbowl of sorts, a week long self-awareness conference known as Date with Destiny.

In what I consider one of the more insightful moments of the film ( and there are many), Tony explains to a 19 year old girl how her blaming her father for her struggles is actually leaving her powerless and trapped under his influence. Robbins then expounds on how we very rarely, if ever, blame people for the positives they provide us. How we fail to recognize that the hurt people levy upon us actually makes us stronger.

It’s apparent that when we blame people and circumstance for our failings, shortcomings and unhappiness we diminish own own power and provide these outside forces greater control over ourselves.

finger-1299243_960_720However, when we play the positive Blame Game, we find new levels of strength and understanding. And though this, we begin to appreciate and love ourselves and others (even those who did us wrong) on new, deeper levels.

So when the positive Blame Game scene ended,  I put down the popcorn, picked up the pen and did a little positive blaming exercise myself. Here it is…

  • I blame my wife for making me realize that vulnerability is a strength not a weakness.
  • I blame my mother for making me sociable. For making me enjoy the company and comfort of others.
  • I blame my father for my grit. For muscling through adversity.  For not leaving a job until its done and done well.
  • I blame my children for my constant desire to play and create. For wanting to escape the trivial trappings of adulthood and fuel my creative engine.
  • I blame my brothers for my affinity for camaraderie and brotherhood.
  • I blame my former tenant (the one who left my rental property an absolute shit hole) for providing me with some good writing material and a challenge that is conquerable with a little sweat, some elbow grease and a few trips to Home Depot.
  • I blame the kid from my high school English who called me a faggot (because I liked to write) for inspiring me to sit down and write as fiercely as I can everyday. I also blame him for my cavalier, not-giving-two-flying fucks attitude about people’s opinions regarding my love of writing.
  • I blame my autoimmune disorder for giving my life clarity, direction and purpose.

If you’re feeling a little weak, a little wounded ( and who isn’t) I encourage you to partake in some positive blaming.

Its a quick, powerful exercise that allows you to see the good in people, the good in tough situations. And by doing so, you find new perspectives and uncover a deeper sense of gratitude for your life.

You can’t change your personal history but you can change the way you respond to it. If you’re trapped in a cycle of blaming and it’s leaving you restless, stressed and overwhelmed I highly recommend giving the positive blaming exercise a try.

Be well,

Jay

If you liked this article, checkout…Are you self-compassionate?

Give a listen to my interview with artist Amy R Terlecki on The Power of Creativity Podcast. Amy and I discuss parenthood, why selfishness can be a good thing and how busy people can still find time to be creative.

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8 Lessons from a First Time Landlord

 

rentTwo years ago my wife and I attempted to sell our home.

For four months our house sat on a cluttered market with little interest as we bubbled wrapped glassware, packed boxes full of baby toys and grew increasingly nervous.

We couldn’t afford two mortgages and the idea of our home sitting vacant on the market for the looming winter scared us.

We talked sheepishly about renting, hesitant to assume the authoritative “landlord” moniker. “Landlording” seemed so responsible, so adult.  Plus we’re both easy-going, non confrontational people who wanted to spend our free time yelling at our children, not managing a rental property.

But we were stuck.

So after much discussion, debating and Googling we decided to cautiously assume the pragmatic title of landlords.

We found tenants within two weeks. A nice couple with jobs strapped with below average credit. But we were attracted by their ability to offer cash for the first month’s rent and the security deposit.

The first year and a half was great. They paid rent on time and asked for very little. And after the rent was collected and the mortgage paid Cindy and I were able to stash a few bucks away.

Then December 1st came and the rent didn’t arrive until New Year’s Eve.

Over the next few months the rent was consistently late. We enforced late fees, made phone calls, sent text messages and mailed letters. We tried to reason and compromise. But late rent became partial rent.  Then partial rent became no rent at all.

Spring melted into summer and the last thing Cindy and I wanted to do was champion an eviction, fix up the house and find new renters.  So we drafted a new lease that included a payment plan to reclaim the delinquent rent. A plan they agreed to. A plan I was confident would work.

The first date the delinquent rent was due came and went without any payment.  Without explanation.

We were out of options. We had no choice but to file for eviction with our local township.

In our two years of being landlords we learned a lot. We learned that a rental property can be a great source of extra cash. But we also experienced the stress and frustrations of renting. The drama and unnerving feeling that the rent maybe late or not coming at all. Here are 8 lessons I learned from my first go-around as a landlord.

1. Know the renting laws

Before you rent your home, you need to know your local and state laws. (Like whether your township require a home inspection before you can legally rent.)

Go to your local township office and request literature regarding rental laws and procedures.  This literature will benefit both you and your tenants. I would also recommend reviewing local laws with your tenants before they move in. Even if you don’t understand all the legal vocabulary, the act of reviewing these laws will present you as a knowledgeable and experienced landlord ( even if you’re not).

2. Abide by your lease

Your lease is a binding document that is designed to guide all of your decisions.  Let it.  Your lease should be transparent and the tenant expectations should be clear. I advise reviewing  all parameters of the lease before the tenants move in. Glossing over lease expectations can lead to future problems.

3. Document everything

For quick correspondences a phone call will suffice. But serious matters ,that could lead to an eviction, should be done in writing (I suggest by certified letter). If you do need to evict, clear documentation is critical.

4.Be understanding but firm

Life is tough business. I understand– children get sick, companies downsize,  transmissions explode. If you’re a landlord long enough you will hear plenty of reasons why rent is late. Be compassionate and understanding but be cautious and don’t be afraid to enforce your late penalties (and your lease must include late penalties!). You also may try to separate fact from fiction. Don’t get into the business of dissecting truth. You’re not a lawyer. You’re a landlord and it’s your job to adhere to the demands of the lease, to protect your investment and to provide your tenants with a comfortable living experience.

5. Do some market research before you evict

Know the rental market landscape before your house is empty. Consider the time of year and whether it constitutes a high demand of renters. Research the  comparable rentals in your market and understand that your house may sit vacant for sometime before you can obtain a new tenant.

6. Be cool

When there is money at stake, when a tenant is refusing to pay rent there is a tendency to make quick, reactive decisions rather then making a sound, logic decision. When faced with a tenant issues– take your time, review your lease, sleep on it, do a downward dog. You’re the landlord, you’re in charge–take your time and think it through.

7. Use a big picture lens

Thinking big picture before you rent your home is important. Consider the following questions– Is your goal to rent as a means of building equity? Is your goal to pay down the mortgage to make a bigger profit when you sell the home? Will dealing with a few weeks of landlord headaches provide you with a lifetime of financial flexibility?

8. Build a relationship

Like any, the landlord/tenant relationship needs to be cultivated with respect and communication. Just because you own the property doesn’t give you the right to be indigent. And though you may not like your tenants–and you don’t have to–  you do need to be respectful. Remove your personal feelings from the equation, build a landlord/tenant relationship on respect and you’ll create a positive situation that benefits both you and your tenants.