How to Save a Life

Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age.”
― James Joyce, The Dead

Five years ago I was farting my way through grad school.

The plan was to graduate with a Master’s degree in educational administration and become a principal.

I didn’t really want to be a principal. I wanted to be a writer.  But I did want more money, more prestige and a better parking spot.

Then I got sick.

Doctors found a hole in my brain. One doctor told me I should be dead.

I cried. I drank. I grew distant and despondent.

And then, in my most desperate hour, I dropped out of grad school, started writing. Which, consequently, saved my life.

Shakespeare believed that every third thought should be about death.

Though I don’t prescribe to the Barb’s frequent morbidity, I do believe a frequent acknowledgement of our mortality is a healthy practice.

Death is waiting in weeds for all of us.

We can choose simply to ignore him or when we need a little perspective– call him out, lock eyes, and realize how little time we have to do the things we were meant to do.

Be well,

Jay

Why am I sick? The Question All Chronic Illness Patients Ask and The Causes of Chronic Illness

The following post is part of the The January Project: Chronic Illness. A month long project where I research and write about chronic illness.  The information presented in this project is intended for educational purposes only.

I am not a doctor. I am a teacher and writer who, while being afflicted with two chronic illnesses, is just trying to learn how to live a productive and peaceful life 

With this project I hope to increase awareness to comfort those living with chronic illness and to offer clarification to anyone who knows a person living with chronic illness.


Why am I sick?

Like a car accident, a chronic illness often comes without warning.

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

For me, the symptoms of my chronic illness happened overnight. Literally.

One day I was coaching and playing soccer and the next day my vision was blurry, my head was spinning and I barely had enough strength in my legs to climb a flight of stairs.

That was August of 2013.


According to the National Council of Health nearly 50% of Americans have at least 1 chronic illness.

Approximately,  161 million people are currently struggling fears and frustrations of having a chronic illness.


On September 5th an MRI of my brain revealed that I have cerebellar atrophy. In April of 2015 a muscle biopsy of my thigh revealed I have sarcoidosis– a chronic illness that causes muscular and organ inflammation.

And even with a medical diagnosis I wasn’t satisfied. My mind was cluttered with questions. Questions that spiraled from the origins of my illness to the existence of God.

Why did I get this sick?

What could I have done differently to avoid this fate?

Why is God doing this to me?

Hell, is there even God?

The uncertainty of a chronic illness unravels and unnerves you.

When unanswered questions snowballed I grew overwhelmed and  experienced a sort of moral freeze. I couldn’t think, decide. I couldn’t, as my old soccer coach would say, “get my shit together.”

These were and still are the hardest moments for me. The moments I’m still ashamed to talk about.

In life we’re taught to be curious, to explore, to seek until we find what we’re looking for. Like a high stakes of hide-and-go-seek.

But what happens when there are no answers?

Even after years of blood tests, biopsies, scans and observations I still don’t know what caused my illnesses.

Five years ago I would not attest that uncertainty is an opportunity for growth and change. But know I do.

I realized that not knowing why I got sick is what inspired make a greater investment into my health.

According to The Anxiety and Depression Association of America,  patients, of chronic pain and respiratory disease patients and others with disorders that require a lifetime of coping report increased levels of depression and anxiety.

In 2013, when doctors first identified my first chronic illness, I was an active healthy 33 year old man. I was 180 pounds. I went to the gym after work and played soccer and softball on the weekends. I didn’t smoke. Didn’t use recreational drugs. Sure I had an occasional beer but overall I ate a balanced, protein-rich diet.

So why me? What caused the illness? Was there anything I could have done to prevent it?

Almost five years removed from my original diagnosis I still don’t know know what caused my illnesses.

Research has found three potential origins of chronic illness.

My experience with chronic illness has taught me that knowledge is power. And though the origin of your illness may remain a mystery, it’s crucial to educate yourself on the origins of chronic illnesses.

Genetics

A former student once wrote a heartbreaking poem about how she was doomed to get dementia when she got older because all four of her grandparents had it.

It’s been long believed that since a chronic illness “runs in your family” you’re fated to get it.

And though genetics definitely is a factor of chronic illness, it’s not as determining as once thought.  As science has advanced, research has proven that “inherited” is not “destined”.

Certainly genes are important in influencing our health, but there is no such thing as chronic-disease genes.–The Disease Delusion by Dr. Jeffrey S. Bland

This is good news for my former student. She is not necessarily fated to get dementia.

The human body consists of 20,000 genes and if you think of each gene as a lock, it’s a matter of discovering which keys unlock a chronic illness.

Growing research suggests that the “environmental key” and “behavior key” are the two most likely keys to unlocking the chronic illness door.

Furthermore, one key may unlock multiple doors. Meaning that is you have one chronic illness you’re at a higher risk for developing other chronic illnesses.

Environmental

Environmental factors and chronic illness have a long history.

Historians pontificate that the fall of the Roman Empire was triggered by the high amounts of lead identified in their water pipes and in their drinking cups.  More recent research revealed that an exposure to lead can significantly drop a person’s IQ. And a child’s exposure to lead can be fatal. Mental illness spread across Roman. Roman leadership became weak and unstable and mighty Empire fell.

In her 1962 landmark book Silent Spring Rachel Carson, announced that environmental toxicity is one of the leading factors in chronic illness. Her researched centered on DDT and other agricultural pesticides and how they were responsible for an increase in cancers.

Exposure to toxins and chemicals, such as asbestos and mercury can cause inflammatory reactions which often manifest into a chronic illness.

Since modern people are exposed to a multitude of environmental chemicals, it sometimes impossible to identify which chemical is responsible for unlocking a chronic illness.

However, just knowing which chemical haven proven toxic, can help you avoid them.

Here is a list of common environmental toxins that have been linked to chronic illness.

Behavior (Diet, Stress, Age)

Though the existence of many infectious diseases have decreased over the last century chronic illness rates have dramatically risen.  

This increase is a direct result to the availability of unhealthy foods, drugs, alcohol and the fact the humans are just now living longer.

Diet

A poor diet is one of the biggest contributors to obesity, diabetes and chronic inflammation.

A health diet fuels a healthy immune system which has the strength and energy to ward off chronic illness.

A well-balanced, vitamin rich diet is the most proactive step a person can take to preventing chronic illness.

I was on a moderate dose of Prednisone for 4 years to relieve my chronic pain. And even on Prednisone I was still in pain. However, since I shifted to a total plant based diet, I am completely off of Prednisone and my pain is gone.


You can read a more detailed version of how I overcome my Prednisone dependency in the article, “How I Finally Kicked Prednisone’s Ass.


Stress

The connection between stress and chronic illness is a little more unclear however, stress, if not addressed, does suppress the body’s immune system making the body susceptible to developing a chronic illness.

When under stress a person’s heart rate, blood pressure, metabolism, digestion and muscle tension are all adversely affected.

However, not all stress is permanently damaging. Coping skills can help the body to return to normal rates. Yet when not addressed, stress becomes distress. And if a person has a genomic susceptibility to a chronic illness, the distress key can unlock a chronic illness.

This is why when a person is diagnosed with a chronic illness they are often urged to seek a mental professional help, to learn stress management techniques.

Age

Aging causes changes to our immune system, which makes us more prone to developing a chronic illness.

And though we can not avoid aging we can adopt a healthy aging lifestyle that help delay or deter the onset of a chronic illness. This includes a healthy diet, exercise, limiting alcohol consumption and keeping yourself mentally active.

Final Thoughts

Research has found that chronic illness is unique to each physical body. One medicine doesn’t heal the masses.

To the veterans of chronic illness and to the newly diagnosed–I learned the hard way that you have to design an action health plan that is unique to your body. You have to conduct research, trust your body and invest in your health.

 

How To Get Men To Talk About Their Chronic Illness

The following post is part of the The January Project: Chronic Illness. A month long project where I research and write about chronic illness.  The information presented in this project is intended for educational purposes only.

I am not a doctor. I am a teacher and writer who, while being afflicted with two chronic illnesses, is 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.


When my wife comes home from work she vents.

If she doesn’t vent to me, she calls her best friend to vent. And when my wife’s best friend has had a rough day, she calls my wife to vent.

After a day of work my wife needs to talk about it. She needs to share her frustrations (and accomplishments) with me or her best friend. And after she vents she often says, “Sorry, I just had to vent.”

For my wife, sharing her emotions seems almost natural.

And I’ll admit, I’m a little jealous.

Three weeks into my research project on chronic illness and I’m hearing a lack of male voices on the subject. There are tons of blogs, articles and podcasts about living with chronic illness on the internet but most are voiced by women and geared toward women.

Even the articles I found about how men typically deal with chronic illnesses were written by women. Not to devalue those articles, it’s just strikingly clear that there’s a lack of male voices in the chronic illness discussion.

But why?

Men are just as susceptible to chronic illness, and in fact, chronic illnesses are more fatal for men than women.

According to the Harvard Medical Journal, Men die younger than women, and they are more burdened by illness during life. They fall ill at a younger age and have more chronic illnesses than women.

So why the silence?

I think it’s simple—men don’t feel comfortable talking about their weaknesses.

It’s not that we don’t want to talk about our illness, we do. I have had a lot of deep, personal conversations with male friends and male students about deeply serious things, including chronic illness.

The problem is we just don’t know how to voice our fears, frustrations and without looking weak.

We fear that having a real talk will be mistaken for venting. And venting is something that women do.

I wrote in A Vulnerable Man that when I was 15 years old I was called a fag by another boy because I wrote a story that impressed my 9th grade English teacher.

22 years later, as I tell you this, I can see my teacher smile and hear her say that I have a “strong writing voice” and that I should “keep writing.”

For the teenage, heterosexual male being seen as “gay” in the eyes of your male peers is the ultimate fear.

And if I’m being completely honest, at 37, it’s still a serious fear.

In this NSFW clip, comedian Bill Burr accurately ( and hilariously) describes why men are so foolishly terrified to look weak in front of other men and how a man’s emotional repression ultimately kills them.

 “What are you a fag” is the reason why guys dropped at 55 out of fucking nowhere.–Bill Burr

Young age men are trained by society and by other men to suppress their feelings. And for the man struggling with chronic illness this “training” becomes increasingly dangerous.

My plan when I began the January Project was to research the origin of chronic illness, the different types, possible preventions and latest research.

But something happened.

When I dove into the project I was shocked to find a lack of males voices talking about chronic illness.

So the focus of the January Project shifted from general research to writing about ways men with a chronic illness can accept vulnerability, overcome shame and find their voice again.

Like women, men need to share their struggles, their stories. Because repression leads stress and stress leads to physical and emotional weakness.

5 Constructive Things Men Can Do

Each of the things listed below helped me to accept and openly talk about my chronic illnesses. These strategies will not cure your illness, but they will help you take the first, crucial steps in achieving a less-stressful, more fulfilling life.

There was a time throughout my struggles with chronic illness that I thought each of these strategies were dumb–even writing.

At first they were uncomfortable and seemed futile. But the more I practiced them, the more I was able to accept my chronic illness, release stress and gain emotional strength. Training your emotional muscles is like training your physical muscles– if you want results, you must consistently go to the gym and lift weights.

Finding your voice is a life long process. It’s work. But if we never verbalize our emotions we will always be fragile and walk a tightrope of self-destruction.

1.Write

I don’t know where I would be without writing. Writing has been both a release and a source of strength for me. Writing has made my thoughts and feelings more tangible, more clear and easier for me to understand.

The purpose of writing is to not pen a novel. The quality of your writing doesn’t matter. It’s to have a dialogue with yourself–a private venting session to constructively release your emotions.

2. Make one small change

A chronic illness can leave you powerless. And when you’re powerless, sometimes you think you have to change everything to regain your masculine power. One way to regain your power is to make one small positive change. Committing to one small change will provide confidence to make bigger, future changes.

For example, a few weeks after I committed to taking daily all-natural vitamin supplements, I decided to change my carnivorous diet to a total plant-based diet. After weeks on a plant-based diet my body felt so good I was able to completely stop taking steroids, which I had taken for four years to alleviate my chronic pain.

3. Listen to motivational speeches

Because I was so afraid to talk about my illness, no one knew how much I was suffering. I wanted to talk but, maybe it was a lack of courage or maturity, I just couldn’t.

I found that listening to motivational speeches everyday helped me to build strength and courage that one day inspired me to talk.  My favorite speakers are Tony Robbins, Brene’ Brown and Les Brown.

4. Learn something new

Learning new things is cardio for your brain. Watching a documentary, reading a book or learning a new skill are simple ways to gain strength and confidence.

In fact, living with a chronic illness requires you to have a growth mindset, which basically means to increase your intelligence by dedicating yourself to learning about new ideas and perspectives. Intellectually growing makes you feel strong and helps you manicure a resolve to overcome future setbacks.

5. Tell one person that you’re scared

Bestselling author Lewis Howes explains, “anyone who has experience trauma in the past and hasn’t ever discussed it with anyone will allow the trauma to grow in negative way until you begin to tell your story.”

Even when I was enduring CAT Scans, blood tests, biopsies and MRIs it was still hard to admit to my wife that I was scared.

Men will endure and suffer to avoid admitting that they’re afraid. But admitting fear takes real courage and is an important step in the healing process. Though the stoic, unwavering man is glorified in our society, it’s important to remember that he is nothing but a work of fiction.

Men– living with a chronic illness is hard. It will emasculate you. It will break your spirit. Don’t let it. Hold on. Have patience. And never be afraid to tell your story.

Women– understand that men need you. Though we may not say it, your presence gives us strength. Be frugal with your questions. The last thing a suffering man needs is to be assaulted with questions. Stay patient, refrain from judgments and one day, when we’re ready, we will share our story with you.

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)

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

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

 

 

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