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.)

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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

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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

 

The Day I Learned I Could No Longer Jump ( or Learning to Fly)

This week’s post was inspired by writer Victoria Griffin’s  Flooded: A Creative Anthology of Brain Injuries.

Victoria was kind enough to invite me on her blog tour to further educate on the realities on brain injuries. I encourage you to checkout Victoria’s Kickstarter Campaign and support her awesome cause!


The Day I Learned I Could No Longer Jump (or Learning to Fly)

For M.

Six months after being diagnosed with cerebellar degeneration, six months after a neurologist examined an MRI of my brain, leveled his eyes, cleared his throat and said to me, “you should be dead or in a hospital bed” I’m staring at my physical therapist, Denise, and she’s daring me to jump.

“Jay, I want you to jump.”

“Like up and down?”

“Yes, like jump up and down.”

I smile and look around the St. Lawrence Rehabilitation Center. There are three other patients in the activity center with me. Two women, both walking slow on a treadmill and Bill, a former Navy Captain, who is the proud owner of a new titanium hip. Bill is pedaling a stationary bike and according St. Lawrence lore, Bill has never smiled. Ever.

I’m the youngest one in the activity center by at least 20 years. This is problematic because comparison naturally feeds fiction. Surveying the room, like the true gym class hero I still think I am, I swell with pride believing I’m the most able body in the room.

“Denise, need I remind you that I’m an athlete. A collegiate soccer player. I’ve been jumping my whole life.”

Denise playfully rolls her eyes. This is only my third appointment at St. Lawrence but Denise and I already share a chemistry. It’s December. Football season. I’m an Eagles fan. She’s a Giants fan. In between sets of squats and leg raises I tell her Eli Manning is overrated. She tells me that the stereotypes regarding the jerkiness of Eagles fans is apparently true. She is a turtleneck conservative. No earrings, no rings just a silver cross pinned to her sweatshirt. But she is funny and real and in just our few hours together I stake her as the most compassionate person I ever met.

During a set of lunges Denise tells me that Bill just lost his wife of 40 years to breast cancer. Her brown eyes swell, and then tells me she lost her grandmother to the same disease. Denise and I both look at Bill, we watch him slowly pedal. She tells me it’s her goal to make him smile today.

To be honest, I’ve avoided writing this story for some time now. I guess by writing it, by pinning down its facts, I’m forced to further accept certain truths. I assume I did what most of us do when we don’t have the energy, courage, conviction to deal with truth.  We tuck it away, like a debt, in the darkness of a desk drawer and do our best to forget about it.  But memories, with just the right stimulus, can resurrect without warning. They sit up, blink, open the drawer and leak into the light and remind you that memories, like debts, can be avoided for only so long before they must be attended to.

The stimulus today was a basketball bouncing off the concrete. My son, Chase, is in the backyard, dribbling the length of the patio and shooting on a little net he received for his 4th birthday.  He’s six now and he’s getting good. Dribbling, jump shots, layups. And he’s quickly learning about the earthly battle between the human body and gravity.

Chase makes a jump shot and celebrates. As it often happens with sons, he feels me–his father’s eyes looming because he looks up, with his own blue eyes and finds me framed in the window.

“Come out and play Dad!”

I smile and wave and a trapdoor in my stomach swings open and my heart falls through and keeps falling because but I can’t play. Not now. Not today. Because some days my body aches too much. Because some days my brain does weird things. Like some days it convinces myself that I’m trapped on the Tilt-a-Whirl or I’m buckled to the back of a big black bird or I’m a sneaker in the dryer or I’m frat party drunk. Because some days the fixed world spins, glides, tumbles and wobbles off its axis at speeds beyond what my eyes, my undamaged brain can comprehend. And I guess, some days, I just don’t play because…because I simply cannot risk the embarrassment.

For this story, I need you need to suspend reality. I need you to believe the unbelievable. But the unbelievable is the truth. Truth that the National Institute of Health, the epicenter of rare and novel diseases, couldn’t believe.

Before my diagnosis, I believed that I would do physically heroic dad things, like carrying all three children off to bed like footballs, each tucked under my arm, after the fall asleep on the couch. I believed I would be the MVP of father-son baseball games. I believed my children and I would run 5k’s together and I believed on a perfect summer morning, when the sky was veined with golden light we would ride bikes along the New Jersey coastline.

But we age and learn that real life always falls incredibly short of the one we imagined, of the one we planned.  And yet despite our protests, it’s the unplanned life that teaches more then our fantasies ever will.

“Jay are you ready?”

“Eagles are always ready to fly.”

“Ok, but I’ll be right here, beside you just in case.”

Bill rides a stationary bike. He is straight-faced and staring at me.

“Hey Denise, can you go make Bill smile? He’s freaking me out.”

“Just concentrate on what your doing.”

“Denise, I got this. Need I remind you again, I’m an athlete.”

Cerebellar degeneration is exactly as it sounds. There is massive cell loss in the cerebellum, known as the little brain. The little brain controls motor skills: coordination, vision, and balance. After examinations from some of the top neurologist in the country, not one knows if I was born with a gaping hole in my cerebellum and had been able to compensate my whole life (remember, I’m an athlete) or if a civil war erupted in my little brain where cells attacked and killed each other. And as I write this, as Chase drills a jump shot, no one knows if the war is over.

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Image #1 (Above). This is an image of a healthy cerebellum. Notice the plump, circled area at the rear of the skull.
brain2
Image #2 (Above). This is an image of my brain. Take a look at my poor excuse of a cerebellum.

In the last few months my coordination, vision, balance and motor skills have all deteriorated. Not at breakneck speed, but slowly, methodically. Little things, things I’ve taken for granted– handwriting, climbing stairs, and carrying a few bags of groceries have become difficult.  The doctors are surprise how well I look, speak and still function given the size of the hole in my brain. For a brief time doctors thought I had ALS. Then they thought Huntington’s Disease. Then MS. Then, after six months of testing, they simply shrugged their collective shoulders and said they didn’t know. They told me, as if they were riding the Tilt-a-Whirl or the giant bird with me to, “just hold on.”

Denise levels her eyes at me.

“I want you to jump.”

“How high?”

“As high as you can.”

I bend my knees, swing my arms back and forth and try to jump. I try and try and try and try but I just can’t do it. I just can’t force my feet to leave the floor.  My big brain screams at my little brain , “Jump!” But the message is not delivered as if some internal chord that transmits important messages had been severed. To Denise, Bill and the two ladies on the treadmill I must have looked ridiculous, like a wide-eyed field mouse fixed in a glue trap.

I shake my head. “Jump!”  “Jump!”

“Its ok Jay. You don’t have to do it.”

“No Denise. I can jump. I have to jump.”

“Relax. Take a seat. Let me check on Bill”.

Denise returns, tells me she offered Bill her best joke about a priest, a rabbi and a monk playing Monopoly in Mexico and he didn’t crack. Didn’t even flinch

“Denise, I’ve had enough for today.”

When you think of your future self you envision your best self. Happy and unblemished. Your the hero of your own movie. You convince yourself that you, unlike everyone else, won’t end up a tragedy. And in those great moments of fantasy you believe, with a swelled heart, in your own fiction.

I limp into the locker room, find a folding chair, stare into my lap and began to digest the fact that I had lost the ability to jump.  It occurred to me, right there in that empty locker room, on that folding chair that I would not be the man, the father I envisioned myself to be. A father running, jumping through life with his children. A father playing basketball in the backyard with his son. A father who is fast and coordinated and who teaches his boy the aerodynamics of a layup as the evening sun vanishes from the suburban sky.

I open the locker room door to find Bill in the hallway, sitting in his wheel chair, as if waiting for me.

I offer a little half-smile and before I can turn Bill speaks, “Hey,” he still had those steely grey Navy captain eyes, eyes that didn’t look at you, eyes that looked through you. Bill clears his throat, shifts his weight on his God-given hip and says, “Don’t give up kid.”

“Thanks.”

And then, in a very subtle, a very unprovoked way, he smiles.

 

Be well,

Jay

In Good Company

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A student recently asked me, “Hey Mr. Armstrong, what do you think about before you write?”

I curved my eyebrows inward, adopted a deep, contemplative look, held a silence for a second too long and replied,  “Words.”

The student rolled their their eyes, shook their head as if to say “Sorry I asked, you pretentious jerk” then turned away and moved on with their life.

Writers are often considered guarded, cantankerous folk. Often aloof and indifferent while sitting cross-legged in Starbucks, wearing tweed jackets and sporting wire-rimmed glasses.

So what do I think about before I write?

Well, I thought it might be interesting to unlocked that world for you. To share my mental geography. A geography I often disappear in while driving, coaching soccer, eating Golden Grahams, sitting through meetings or digesting the news that my 6 year old now knows the “f” word.

For me, the process is pretty simple. It involves a bar, Brenda, fried mushrooms and most importantly, you.

So, before I get more pretentious, let us go then…

You and I are at a bar. A local bar. A simple place with a simple name. Pat’s Pub or Mike’s Tavern. They serve American draft beers in thick handled mugs. The menu is limited to deep fried and pickled foods. The walls are dark wood paneled. The bartender’s name is Brenda. She is divorced, has a son in prison, a smoker’s cough and a faded rose tattoo on her forearm. 

There is a pool table in one corner and a jukebox that plays mostly southern rock in the other.  In the windows hang neon beer signs. Miller High Life. Coors Light. We are on our first beer and watching a 30 minute replay of Superbowl XXV on ESPN 2 when you ask me how I ‘m feeling. I tell you  I have good days and bad days. I don’t tell you good days are when I don’t think about dying until lunch.  I don’t tell you bad days begin when I think about dying before the coffee meets my morning mug. You ask what it’s called. Cerebellar Degeneration. You ask if there is a cure. No. You ask if the degeneration will stop on its own. Maybe. But the brain damage is permanent. You ask if I should be drinking beer. Probably not. You ask how I have been dealing with this. I drum my fingers on the bar. I want to cry. But I muscle it down. I look at you and smile and say I write stories. What kind of stories? My stories. Stories of my success and failure. Of my disease. Of my childhood and adulthood and fatherhood. Funny stories. Sad stories.  Embarrassing stories. Stories to remind me that I’m still alive.

I take a drink.

The Buffalo Bills kick off under a burst of a million flashbulbs. You know some nights, when Cindy and the kids sleep, I sit at my computer and stare through the words and watch my life play out on the screen like a movie.  Through stories we can make sense of the past which somehow alleviates the pain of the present. Because writing is easier then forgetting. Because writing is now a  therapy for me. More than any pill I have been prescribed, I have found real, human comfort in the re-imagined past. It’s like each story I write is a puzzle piece to my life. But the healing power lies in the fact that I can dull or sharpen the edges to each piece to fit my design.

I take a swig of beer and squint at the TV. We watch Phil Simms march the Giants down the field on their opening drive and kick a field goal. Giants 3 Bills 0. When the TV cuts to commercial you ask if I would share some stories I’m writing. I’m flattered and a bit unprepared but we’re friends. Sure. You smile, motion to Brenda and order  another round. I tell you that these stories are true. For the most part. memory is never completely accurate and that over time stories change shape. And with the fusion of time and repetition, and now alcohol, some of the facts may, at times, dissolve into fiction. I assert that I’m not a liar. I may inject hyperbole but that’s only for your entertainment. You concur.  I remind you that you asked me to tell a story not report the news. You concur. I tell you that though I may bend the truth, the themes of the story are true. You tell me to stop being an English teacher.

We get our beers and you pick at your fried mushrooms. You take a drink and I tell you that stories are like bookmarks to our lives. Stories remind us of where we have been and how far we have to go. I tell you that when we retell a story the past collapses into the present. And when we experience that collapse, we can learn deep and profound things about ourselves. Stories inspire us…

You wave your hand.

You tell me to shut the fuck up and get on with it already. I don’t take offense. We are old friends remember. We’ve been telling each other to shut the fuck up for years. I smile. You smile. We both take a swig of beer. I put my mug down and clear my throat and look at you and smile and say, “Ok, here is a something I’ve never told anyone before…”

Be well,

Jay

20 Things My Chronic Illness has Taught Me

 

A few days after a muscle biopsy procedure my doctor called and delivered the name of my mysterious internal antagonist–Sar-coy-something.

As I scratched down its letters on the back of a Chinese take-out menu he explained the intimacies of my disease, offered some reassurance and outlined a plan of attack. When the call ended I did what most modern creatures do– I tossed open my laptop, summoned Google and misspelled my disease in the search bar.

S-a-r-c-o-i-d-o-s-i-s is an autoimmune disorder that inspires little knots of inflammation to gather and break dance in joints, muscles, lymph nodes and vital organs of an unlucky host.

In most cases, after a few rounds of America’s favorite steroid–Prednisone– sarcoidosis two-steps into the desert town known as Remission.

However, according to the Cleveland Clinic, 10% of sarcoid patients suffer from my kind of sarcoid–the chronic kind.

In my struggles with this often misspelled disease I’ve learned a few things. In fact, my disease has been (dare I say it..) the best (…and by best I mean most relentless, ball-busting, humbling, homework-on-the-weekend ) teacher I’ve ever had.

I’ve been a student in the school of sarcoid for a little over a year now.

In that time I’ve experienced anger, confusion, regret and have been so disenfranchised with the entire medical community that I refused to watch Grey’s Anatomy.

Ironically,  since my diagnosis I’ve learned to more fully appreciate the value of love, the importance of humor and that sometimes simply getting out of bed is the bravest thing you can do.

Please understand–I’m not an expert. I’m a C+ student still struggling to comprehend the curriculum. But since my enrollment, I have learned a few things about coping with a chronic illness that I would like to share…

  1. When you’re suffering– its okay to be selfish and take care of yourself.
  2. Talk openly about your illness. Your advocacy will help others
  3. Say bonvoyage to Cap’ n Crunch and modify your eating habits.
  4. Just because you feel like crap doesn’t give you the right to be a jerk.
  5. You may not be able to control your illness but you sure-as-hell can control how you respond to your illness.
  6. Keep a journal of your symptoms.
  7. Keep your doctor’s appointment.
  8. Schedule morning doctor’s appointments and celebrate the appointment with lunch. If possible, have a beer– you deserve it.
  9. Be a self-advocate. Ask your doctor questions and demand answers.
  10. Network with other patients.
  11. Don’t be ashamed of your disease. Everybody has something wrong with themselves. See Justin Bieber.
  12. Have your doctor write you a letter detailing your symptoms (And if applicable, give the letter to your employer.).
  13. Accept your illness. Denial will only compound your suffering.
  14. Be kind to others. Kindness is a great distraction from your pain.
  15. Be patient with your medication– sometimes finding the right medication can be a long, tiring process.
  16. You’re tougher than you think.
  17. Do something constructive–find an outlet for your pain.
  18. Curb the cat videos and use the internet as a vehicle for seeking support.
  19. Read medical journals– even if you don’t understand every word.
  20. Continue to hold yourself accountable.

If you’re warring with sarcoidosis or any autoimmune disorder for that matter, know that you’re a warrior. Know that it takes nervy defiance and stone-cold courage to wake up, soldier on and fight your every day internal war.

Be well,

Jay