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)

What You Need To Know About Men Who Have A Chronic Illness And The Shame They Feel  

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. My hope is to increase awareness to help those living with chronic illness and to offer clarification to anyone who knows a person living with chronic illness.


They were tough. They carried all the emotional baggage of men who might die. Grief, terror, love, longing–these were intangibles, but the intangibles had their own mass and specific gravity, they had tangible weight. They carried shameful memories. They carried the common secret of cowardice barely restrained, the instinct to run or freeze or hide, and in many respects this was the heaviest burden of all, for it could never be put down, it required perfect balance and perfect posture. They carried their reputations.

— Tim O’Brien The Things They Carried

No one prepared me for the shame that came with a chronic illness diagnosis.

In the initial doctor appointments, after I was diagnosed with cerebellar atrophy, I was offered pamphlets on healthy eating, effective communicating with your spouse and the importance on scheduling and keeping doctor appointments.

But no doctor leveled their eyes into mine and explained that along with the physical ailments of my illness I was going to feel shame. Heavy coats of shame that weigh me down, make it hard to move, hard to breath.

No doctor warned me about the shame I feel every time my children ask me to ride bikes with them or my friends invite me to play basketball or the light bulb burns out in the hallway and I have to ask my wife to climb a ladder and to change it.

Somehow the male ego has skirted 200,000 years of evolution.

Both ancient and modern males fear weakness and dread failure. They crave strength and victory. They pride themselves on being a provider and protector.

Modern men avoid doctors appointments and hospitals and undersell pain (except when we have the flu). We don’t admit when something is wrong or even acknowledge something that may be perceived as weak. When something bothers us we often emotionally recoil. We become distant.

Men we would rather be labeled a loner then a loser.

Because men define themselves by their ability to do impressive things. Things that require strength and stamina. We are independent, prideful forces who find and polish important hunks of our identity from our ability to do physical things: run, jump, climb, protect, carry and build.

So when we are suddenly dependent, when we lose our physical abilities, our capacity to do impressive things– we lose ourselves.

For 33 years I defined myself by the games I played. I was an athlete.

Here I am with a close shave (and a broken arm) playing against Arcadia University (October, 1999).

As a child and through my teen years I played soccer, baseball and basketball. In college I played varsity soccer. Throughout my 20s and into my 30s I coached high school soccer and played third base on a competitive softball team.

Then I got sick.

I was unceremoniously forced into retirement.

I was patient now.

A weak and wounded patient.

Normalizing: A Crucial Step.

Research has shown that “normalizing” is a crucial step for anyone, especially prideful males, living with a chronic illness.

Normalizing means a willingness to adapt to a new life of chronic illness. It’s having the integrity to be more resourceful and find or invent ways to minimize the impact the chronic illness has on daily life. It also requires letting go of the past, letting go of dreams and aspirations  and placing a greater value on the present.

However, when a patient refuses to normalize their illness by hiding their limitations, a patient may cause additional physical damage as well as deepen their shame.

When ill people normalize symptom control and regimen, they increase their capacities and maintain normal health.

Theoretically, normalizing is a logical step for a chronically ill patient — refusing to let a chronic illness control your life, forge your identity.

I learned that normalizing can take years of accepting before conceding. For me, normalizing meant my chronic illness had won. It meant I was a loser.


A side note: The difference between shame & guilt

When I began this research, I was interchanging shame and guilt.

Though shame and guilt are close cousins, there is a distinct difference between the two.

According to Dr. Brene’ Brown:

Shame is a focus on self. Guilt is focused on behavior. Shame is “I’m bad.” Guilt is “I did something bad.”

With some digging men can admit guilt. But shame is much deeper. Shame is buried. Shame needs an excavator.

Men are not immune to shame.

We often just hide it better than women.


I still wrestle with shame.

It’s been five years since my initial diagnosis and I am still trying to  normalize.

And I know I shouldn’t be ashamed of my illness but some days I am.

I am a husband and a father. The leader. The patriarch. I am suppose to be physically strong. My family expects me to be strong. You expect me to be strong.

But some days I’m not.

Let me be clear– this was a really hard piece for me to write.

I’m prideful. I’m concerned about my reputation. I’m worried about what you will say about me when I’m not around and if it will be awkward the next time we see each other.

And yet I know if I do not announce my shame I will continue to struggle to normalizing my chronic illness.

I want you to know I have never talked to anyone before about shame.

Ever.

Shame has never been a hot subject between hands at a poker game or between bench press sets at the gym.

(In fact while writing this, I kept thinking about what the guys in my fantasy football league would think and say. How much ribbing I would take at the post season banquet.)

It’s much easier for men to silently struggle with shame.

So we do. We build facades, we deploy smokescreens. We lie to you. We lie to ourselves. And we do the thing we’ve been trained to scorn the harshest–we hide.

According to Dr. Brene’ Brown, shame is highly attributed to addiction, depression, violence, and suicide.

I personally know men, seemingly strong men, who have fallen victim to all of those dangerous behaviors.

And I know if I didn’t create Write on Fight on and share my story with you, I would have fallen victim myself.


Here are some resources if you want to learn more about shame…

I highly recommend watching Dr. Brene’ Brown’s Ted Talk “Listening to Shame”. The 20 minute talk offers tremendous insight on how damaging shame can be. I personally enjoyed the last 5 minutes where Dr. Brown  discussed how shame affects each gender differently. Also, this video  provided me some much needed motivation when I was afraid to write this piece.

The Handbook of Social Studies in Health and Medicine– It’s a bit technical but provided interesting research on experiencing chronic illness. You can find many excerpts of the book on “Google Scholar.” I found Kathy Charmaz’s Experiencing Chronic Illness (2.6) really helpful with my research. 

Shame is Why We Fight— Published on thegoodmanproject.com, this article explores how and why male shame is often the root of tension in a marriage, and if not addressed, can quickly deteriorate a marriage.


Related Original Writings on Masculinity, Shame and Chronic Illness:

The Scary Work of Redefining Yourself (Originally published on November 3rd, 2017)

The Day I Learned I Could No Longer Jump ( or Learning to Fly) (Originally published on October 26, 2016)

A Vulnerable Man 


The Write on Fight on Monthly Project 

An Introduction:

In my 15 years of teaching high school English I have charged my students with a lot of writing assignments: analytical five-paragraph essays, personal narratives, fictional short stories, original poems, research projects.

Now I’m flipping the script.

For the next six months I’m assigning myself a different monthly writing project.

The project works like this — each month I will choose one topic, learn as much as I can on the topic and present my education in a series of posts.

My reasoning — These are unprecedented times. We are living in the most knowledgeable time in human history. Our technology has graciously provided us access to every fact and definition that has ever existed.

We have smart phone, smart home, smart cars and yet our “knowledge” is often shallow — we know a little bit about a lot of things.

I’ve been equally seduced by modernity.

I’m guilty of googling, reading the top article, passing off my “knowledge” and feeling smart.

I’m tired of surface learning.

I want to test myself. I want to see if I have the discipline to spend an entire month intellectually focused on one subject.

So my six month goal is to genuinely learn as much as I can about six different subjects.

Here are the first three month-long projects:

The January Project: Chronic Illness

The February Project: Romantic Love

The March Project: Parental Love

Since reciprocity pumps the heart of education, I hope we will both find these projects interesting, engaging and applicable. I hope my education will spark your own curiosity.

Be well,

Jay

The January Project: Chronic Illness

Preface:

According to the National Council of Health 50% of all Americans have at least one chronic illness. That’s about 161 million Americans. That’s about 20 million more then the entire population of Russia. 

100 million Americans have two chronic illnesses.

30 million are living with 5 or more chronic illnesses.

What is a chronic illness?

According to the by the U.S. National Center for Health Statistics, a chronic illness is defined as a:

  1. A chronic illness is one lasting 3 months or more.
  2. Chronic illness generally cannot be prevented by vaccines or cured by medication, nor do they just disappear
Image 1: Data courtesy of the U.S. National of Health Statistics

Why am I interested in chronic illness?

Because I have two.

I was diagnosed with cerebellar atrophy in 2013. And then sarcoidosis in 2015.

Because in 2018, millions of people will be diagnosed with a chronic illness. And millions of people will be as confused and frustrated and ashamed and scared as I was, and on some days still am.

Because the goal of The January Project: Chronic Illness  is to deepen my understanding of chronic illnesses so that my understanding may offer comfort and clarity to anyone afflicted with a chronic illness or to those who know someone struggling with a chronic illness.

And because reciprocity pumps the heart of education.

January 5th- Post #1 :  Overcoming the stigma and shame of chronic illness

Image 2: Data courtesy of The National Center for Chronic Disease Prevention and Health Promotion

What’s the one message about life you would share with your family?

I recently packed up the suitcase, left Cindy and the kids behind (with her permission, of course) and met up with a bunch of long-time friends in Puerto Rico for our buddy Marc’s wedding.

It was a stunning little ceremony, staged outside on a horse farm nestled in the lush Puerto Rican rain forest.

wedding1My friend Jack, a world-renown scientific program manager, a guest on the Power of Creativity podcast, and possibility the world’s worst basketball player delivered a mic-dropping best man speech. A speech fused with the right amount of humor, honesty, and whimsical little narratives to give the Puerto Rican cicadas pause.

wedding2As the speech unfolded, Jack recounted the subjects of the late conversations he and Marc had shared over the years. Dream cars, dream girls, million dollar inventions they should invent ( but never did).

He also relayed to the reception how he and Marc, both who had lost a parent to the ugly antagonist known as cancer, would often discuss the poignant question of…

“What’s the one message about life you would share with your family?”

In March of 2014, after I was diagnosed with cerebellar atrophy, Cindy and I flew to Las Vegas to attend the National Ataxia Foundation convention for medical professionals as well as patients of neurological disorders and their caregivers.

The NAF is tremendous organization dedicated to the “improving the lives of persons affected by ataxia through support, education, and research” and their conference provided Cindy and I, both green in the gray world of neurological disorders, a wealth of valuable information.

Ataxia is neurological disorder, of known (cancer,  MS, ALS) and unknown origins that causes incoordinations, tremors, weakness in all areas of the body.

My ataxia which effects my eyes, hands and legs is attributed to my cerebellar atrophy. And what caused my cerebellar atrophy? That’s the unknown. That’s the question no neurologist, psychic, or holyman as been able to answer.

Like hundreds of others, Cindy and I descended upon the desert looking for answers, harboring hope. A hope of hitting a jackpot of sorts.

Many people at the convention had been living with ataxia much longer then I had. Some were stricken to wheel chairs, some had gone blind, others had lost the ability to articulate words, their speech as inaudible as an tequila fueled wedding crasher.

At one point in the program Cindy and I were assigned to a conference room with people whose genesis of their ataxia was unknown.

We held hands, cleared our throats and listened to people share their stories of their eroding motor skills. How they feared leaving their house. How they lost their job. How ataxia ruined their marriage. How they can’t have sex. How they can’t hold their grandchildren. How they can’t tie their shoes. How they suffer from depression. How they tried to kill themselves.

And as I listened to their stories, watched the confusion and frustration and utter desperation snake across their face, bend the corners of their mouth and fill their eyes with tears, I began to wonder– if this was my future, was life worth living?

Three years later.

A warm, light breeze sweeps across a marble dance floor.

And I’m dancing.  

Or doing something that resembles dancing.

As Ice Ice Baby  fills the DJ’s speakers, as a full moon shifts through a leafy canopy and pulses a hard white light across the night sky, as I’m met by the unsolicited smiles of my friends in the heart of the Puerto Rican rain forest, it’s clear in that moment– a moment mixed with just enough absurdity and transcendence to make it seem like something I dreamt– that the one message I would share with my family is that life is absolutely, positively worth living.wedding3

Be well,
Jay

 

The four words that changed my life forever (or all the motivation you need right now)

For me, this whole writing business began when a doctor looked at an MRI of my brain, then at the floor, then hard into my eyes and said, “You should be dead.”

He then told me there was nothing he, or anyone could do for me.

“I’m sorry Mr. Armstrong, you should be dead.”

I remember leaving his office. I remember the long train ride home. I remember the watching the world shift its colors through the lens of a train window. I remember getting off the train, walking to a bar and over a pint of Guiness wondering if dying was going to hurt.

Three years later and everyday later, I remember those four words the doctor offered me on that warm September afternoon.

Everyday.

audience-868074_960_720And three years later, I consider myself lucky. Not because I’m alive but because I was told with unflinching certainty that I should be dead. Something I think we should all hear once in awhile.

Between the car crashes and plane crashes. Between cancer and icy staircases and the stray bullets and stray dogs. Between anthrax and heroin and terrorist and earthquakes and forest fires and black mold and meteors and whole grapes– you should be dead too.

But alas, we’re not.

Sure, maybe we’re a confused and downtrodden and disenfranchised and ultimately tragic bunch but we’re alive.

And that should be all the motivation you need right now.

Be well,

Jay

 

 

Having fun with injection drugs (or growing goat horns)

For the last three years I’ve been a bit of a pin cushion.

Most doctor appointments involve the rolling of a sleeve, an alcohol swab across the crook of my arm and a little pin prick and a lot of blood giving.

And you know what, I happily give.

Blood and needles have never really bothered me.

But I recently learned that needling myself as oppose to having a friendly, small-talking professional needle me is psychologically terrifying.

Like cutting your own hair.

I have done it before. But I’m always slightly nervous about doing it and I’d prefer to have the steady-handed Hair Cuttery technician clip my cowlick then the stubby-fingers of an English teacher with vision problems.

After a three month fight with my insurance company, I was finally approved to receive the injection drug Humira.

The insurance company dragged its wing-tipped feet for two reasons:

  1. There is no FDA approved drug to treat sarcoidosis.
  2. Humira injections cost about $2,500 each.

Humira is prescribed to treat a plethora of illnesses including rheumatoid arthritis and Crohn’s Disease. The hope is that Humira, a less toxic alternative to steroids, will alleviate the symptoms of my autoimmune disorder–sarcoidosis.

Humira commercials are popular during the evening viewing staples of “60 Minutes” and “Wheel of Fortune”. Its commercials are always awash in warm colors, happy suburbanites, puppies, tire swings, fireworks and sprawling lawns. (No, wait… that’s all prescription drug commercials.)

tire-swing-1290028_960_720
If you stumble across this scene you may actually be starring in a Humira commercial.

In August, when my rheumatologist asked if I’d be ok with self injection I gave the dude-shrug and responded like any self-respecting red-meat eating male would, “Of course.”

I mean, how terrifying could self injection be?

Then came Monday.

So I’m sitting on the closed toilet like some shlub in a white undershirt and mesh shorts spotlighted under the artificial white of the bathroom lights trying to convince myself that I can do this. I can needle myself.

The Humira needle (ok it’s an injection pen… it resembles a child’s oversized marker… but an oversized marker that bites!) is teetering on the edge of the bathroom counter.

I take deep breathes and rub my hands. I hum “Eye of the Tiger”. I tell myself it will only hurt for a second. Like a bee sting. Like a little tiny bumblebee sting.

I check the time. It’s 9:45 and I tell myself at 9:50 I will brave up and inject myself. For 5 minutes I recite Winston Churchill quotes.

9:50. The needle remains.

To calm my nerves I pull out my phone and pull up Humira commercials on Youtube. In comes warm colors–oranges, reds and browns then comes the hand holding and fireworks and puppies and a grown man laughing and riding a tire swing into the velvet embrace of a perfect blue sky.

No where in the commercials is a nervous, slightly out of shape man sitting alone in his bathroom wrestling with the tantalizing thought of lying to everyone. His wife, his kids, his doctors, the tire swing man. Telling them all that he took the shot. That it was no big deal.  Because he was a man. When in actuality he chickened out, tucked the needle in the trash and went to bed.

As the commercials closes, as night falls across the majesty of suburbia, a warm-voiced narrator explains that Humira may result in the following…

  • itching
  • headache
  • stuffy nose
  • sinus pain
  • stomach pain
  • a weakened immune system
  • a weakened bank account
  • spontaneous internal combustion
  • cancer
  • heart failure
  • life failure
  • goat horns
  • and increase risks of TB and other fatal infections

Warm-voice narrator also explains that while on Humira you should avoid traveling to extreme and exotic places like jungles, desserts, the North Pole and Toledo.

Warm-voice narrator fades away. The commercial turns black.

I look at the pen. The pen looks back at me.

I’m not terribly excited to start Humira. Hell, I would love a drug free life but long exposure to steroids begin to have adverse affects on the body and I’m looking for anything to relieve my joint and muscle pain.

The house is quite. I consider the side effects. I consider my daily pain.

I pick up the pen and stare at my pasty white thigh.

I hold the pen against my flesh. I think fondly about my wife and children. I close my eyes and I press the trigger and the needle snaps, explodes and hits my skin and I flinch and recoil as if stung by a bee and watch $2500 worth of sweet medication run an expensive trail of tears down my leg.

I laugh.

I think how pissed my insurance company would be if they were here, crammed in the bathroom with me, witnesses to my cowardice.

I also think about how I’ve never been to Toledo and how growing goat horns might be a pretty cool experience.

goat-1667211_960_720Be well,

Jay

Passing Through: A Reflection

crowd

Last Thursday night, after I finished the final edits for “The Day I Learned I Couldn’t Jump (or Learning to Fly)” I couldn’t sleep.

While writing that story, I felt like a guest at a reunion of sorts. Bill and Denise and the two chatty Cathys on the treadmill were in attendance. Although brief, it was comforting to have people from my past  back in my life again.

As I laid in bed, working my head into the pillow, watching the ceiling fan spin, I wondered what Denise thought about the Giants chances this season. I imagined how her eyes would light up when she talked about Odell Beckham’s athleticism.  What she would say about Carson Wentz? Does she believe he’s destined to bring the Eagles their first Superbowl title?

Though physical therapy was hard, humbling, ego-shattering work I miss the camaraderie,  the challenge, the little triumphs. Like on the afternoon when I learned I didn’t have Huntington’s Disease, how Denise high-fived me and how later that same afternoon, I successfully walked heel-toed along a 10 foot length of blue tape without using a handrail.

I remember, on the second to last rehab session at St. Lawrence, I entered the activity room and the chatty Cathys were chatting and walking on the treadmills. Denise wasn’t around. Neither was Bill.

It was January. Everything was in deep freeze. From the sky to my bones, the entire universe seemed to be low on light, low on energy.  I dragged myself to the elliptical machine and set my feet on the oversized pedals.  My legs were tight and heavy and with Denise not around, I worked the pedals with little enthusiasm.

After a few uninspired minutes, Denise entered the activity room and I straightened up, like a kid caught misbehaving and pedaled faster. She walked toward me holding her clipboard close to her chest.

“Hey Denise, Eagles-Giants this weekend. Hope you’re ready lose?

She offered a curt little nod and looked as if she wanted to say something but simply couldn’t find the words.

“Denise are you ok?”

Her eyes filled as she spoke, “Bill fell last night.”

I stopped pedaling.

“Is he ok?”

“Last I heard, no.”

Bill’s brother found Bill lying in a pool of blood on the bathroom floor. Fracture skull. Doctors gave him a 50% chance. Denise, the forever optimist, was 100% certain he would survive.

On my last day at St. Lawrence,  Denise and I walked out into the cold ache of a January afternoon exchanged a final barb, hugged, and went back to our lives.

A few months ago, a student told me she was going to miss class because she had to drive her father to physical therapy. He had a hip replacement and was rehabbing at St. Lawrence. The student said at first her father resisted physical therapy, but now he actually enjoys it. Looks forward to it even. She tells me her father’s therapist is really nice.

“Is her name Denise?”

“Yeah! How did you know?”

“Long story.”

“She’s awesome.”

“I know. Do me a favor. Tell her Jay say hi and that the Giants stink.”

It was reassuring to know Denise was still doing her thing. Still telling bad jokes, still smiling, still inspiring.

Unfortunately, I don’t know whatever happened to Bill.

“The Day I Learned I Couldn’t Jump” is a hard story to put to rest. Maybe that’s why I’m still writing about it this week.  Writing the story made me think about how we’re all just passing through each others lives. Of course, some pass slower then others yet nevertheless, it’s impossible to understand the depth of the impressions we leave on each other..

Some people pass through us like medicine. Like magic waters. They heal us, strengthen us, fix us.

Others are hurricanes. They break our windows, unhinge our doors and crumble our foundations. Forcing us to rebuild, rehab, or quit.

It’s nearing midnight.

Cindy just stole the comforter, the ceiling fan is spinning and though I’m sure he’s a page and spine man, I imagine Bill alive, somewhere, reading this post. His steely eyes tracing my words, his mouth remaining straight and strict even when he realizes that he, just a traveler just passing through, inspires me to write on, to fight on.

Be well,

Jay