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)

Prince Harry Just Taught Men a Life Saving Lesson

It’s an old story. A bit cliched. But still a worthy one…

A man and a woman are in a car.

The man drives as the women navigates through unfamiliar territory. They have no map, no cell phone service. The woman acknowledges the pending darkness and lightly suggests, they stop and ask for directions.

The man keeps driving, keeps his focus, pretending not to hear her.

The sun is all but gone. The street lamps start their work.

The woman looks out the window and clears her throat. She protests, this time with a bit more force, causing the man to snip. He insists he knows where he’s going. He speaks in phrases like, “we just got turned around a bit” and “no big deal” and “any second now”.

The woman runs her hand through her hair and exhales. The man wonders if the heat is on as he, grips the steering wheel and glances out the window hoping for something familiar– a landmark, a sign, a motion from God.

The 17 Year Old Male

A high school classroom serves as a great observatory for human quirks.

It’s always interesting when I ask my 12th grade students about their life-after-high school plans. The females often confess they don’t know. They have some ideas but are mostly unsure. A lawyer, maybe.

When asked, males are quick to verbalize their plan. Business or engineering or medicine or general awesomeness, for sure.

As if, to the 17 year old male, being lost, confused and unsure is a sign of weakness.

Prince Harry Finally Talks

by Mark Cuthbert/UK Press via Getty Images

This week, in a New York Times article, Prince Harry explained how, for almost 20 years after Princess Diana’s death, he struggled with anger, with depression. And how his behavior was often erratic and destructive.

Harry, 32, attributed his recklessness to his inability to address his mother’s death.

An now an advocate for mental health, Harry credits his recovery to counseling and finding the courage to do what so many man can’t– talk.

“I can safely say that losing my mum at the age of 12, and therefore shutting down all of my emotions for the last 20 years, has had a quite serious effect on not only my personal life but my work as well.” –Prince Harry

 A Moment of Honesty

A few weeks ago I had an conversation with a male friend of more than 20 years.

The friend, I assumed, was doing well.

Then, over a drink and an hour conversation, he opened up about his crumbling marriage. How he’s been married for twelve years and that it had only been good for about three.

He explained how he’d been living a life of silence. A silence that drove him into a depression.

His eyes filled with tears as he looked across the table, held his drink and said, “I don’t know what to do. I don’t know who to talk to.”

The Condition

For most men, self-expression is hard. And only gets harder with age.

The longer they cling to a prolonged silence, the more difficult it is to talk. Men often consider stubborn stoicism as dignified and respectable. Yet they often fail to see how their hardness taxes themselves and those around them.

As a male writer I’m torn.

Because I know in order to write well, to produce meaningful work,  make others feel–I have to feel. Yet the square-jawed history of men has conditioned me not to. To remain quiet in pain. To accept my feelings as weaknesses. To emotionally alienation myself to remain accepted.

When you’re 17 years old, you’re inclined to define courage as being bold in the face of danger. You also think courageous men are always decisive and strong.

And it’s shocking to learn that 20 years later, remnants of that teenage ideology still remain steadfast in me.

The Tension Mounts

The sun is down now and the man still refuses to talk.

The woman eyes him. There’s been a growing distance between them for some time now.  Why can’t he just stop? Ask for help? Why doesn’t he ever talk?

He wants to say he’s been conditioned not to. He wants to tell her about the misaligned tenets of masculinity. He wants to tell her vulnerability is something men don’t do yet long for because they secretly know talking could very well save their lives.

But for now– the man and the woman stare out different windows, wondering how they got so lost, listening to the engine hum, moving, aimlessly, into the darkness.

Be well,

Jay