What’s the World’s Greatest Lie?

It was a tradition of sorts.

In the initial months following my diagnosis, after each doctor’s appointment, I would go to the bar

Given my deteriorating health, maybe a few pints and a plate of fried pickles was not the most constructive response, but sometimes nothing soothes a fractured soul like the warm panel walls, a friendly jukebox and the comfort foods of a corner bar.

I remember sitting with my wife and parents and two brothers, talking through the details of my appointment in low, weighty voices.

We had drinks and ate deep fried vegetables and to snap the tension, someone would say something funny and we’d laugh, but not too loud. Because, now was not the time for laughing loud.  Now was the time to make sense of bad news.

I remember the hallow clinks of pint glasses and finding things to do with my hands– bending coasters, tearing bar napkins into confetti–and feeling helpless and powerless. Like sitting in the last pew at my own funeral.

For awhile I believed there was nothing I could do. It was final–I was stricken with some rare disease. Period. And I remember believing how utterly unfair it was.

If our language confirms what we believe, relying on the phrase “it’s not fair…” cements our belief in the world’s oldest lie, which according to the novel The Alchemist is:

At a certain point in our lives, we lose control of what’s happening to us, and our lives become controlled by fate. That’s the world’s greatest lie.”– from The Alchemist by Paulo Coelho

A few years ago, a student suggested that I start a blog.

Why?

Because sometimes you say interesting things in class.

Sometimes?

Yeah, sometimes.

Not to go all Hollywood here, but in serious ways this blog, saved my life.

Because I’ve learned that it’s not the bad news that matters, it’s our response that does.

Our self-victimization vexes others to where they will lose patience and tune us out. Their previous pity sours to apathy.

By bemoaning our bad news, we empower our bad news. We waste vital energy needed to command a positive response to conquer such bad news.

And plus, self-victimizers with their bloated bellies of self-pity and self-delusions make for terrible drinking partners.

Be well,

Jay

Why I Celebrated My Worst Day

When I decided to celebrate my worst day I had romantic dreams of baking a chocolate cake, coating it with vanilla icing and beautifully decorating it with some unabashed inspirational quote.

Here’s what happened.

It’s okay to laugh. Seriously. I know, it’s high fructose, high caloric train wreck.

Just in case you can’t read it, beneath the scattered sprinkles, squiggled in red gel is the iconic line from Bruce Springsteen’s Badlands — “Aint no sin to be glad you’re alive.”

Here’s why.

This past September 4th was a big day for me. An anniversary of sorts. So I baked and decorated a cake to commemorate the day.

On September 4th, 2013 I had my first MRI revealing my brain damage–large chunk of my cerebellum had degenerated.

The date has now become a personal milestone. In the days and weeks following September 4th, 2013 there was, as you could imagine, a quiet tension. The kind of quiet tension that lingers between the pages of hospital waiting room magazines.

With every test, with every confused doctor I grew more desperate, more convinced that I was going to die a young man.

Four years later my brain damage is still unaccounted for.

However, eighteen months after the MRI, a muscle biopsy revealed an autoimmune disorder, sarcoidodsis, that causes inflammation not degeneration.

Four years later doctors are still nosing through medical journals searching for precedent. They are still hypothesizing.

I say let them hypothesize. For the only fact that matters today is — I’m still alive. And according to the Boss, that ain’t no sin.

If the September 4th picture marks my worst day, a day which initiated the worst stretch of days I have ever experienced, I’ve learned that celebrating your worst day is an important step toward healing. Though I’m not physically healed, and may never be, mentally, emotionally and spiritually I’m stronger for having endured my worst day.

Everything can be taken from a man but one thing: the last of the human freedoms — to choose one’s attitude in any given circumstances, to choose ones on way. Victor Frankl author, psychologist, neurologist

Suffering is lonely work.

Often, when we suffer we alienate the very people who take us to our appointments, who hold our hand, who cry alongside of us.

It’s understandable that when we suffer we become selfish. We fall into ourselves. Yet by doing so we fail to recognize the anguish others are in because of our suffering.

Cutting cake (even a poorly decorated one) and celebrating your worst day is an important step toward healing.  A sugary reminder of how resilient the human spirit can be and how our lives, whether we want the responsibility or not, are the models that others will follow.

Be well,

Jay

A Painful Reminder to Slow Down

I felt it coming for sometime now.

I was waiting for it like the way you wait for seasons to change or like the way you wait for something to arrive in the mail. Never knowing exactly when it will arrive, but when it does, your life with be somehow different.

Maybe it was the stress of spring that caused it.

Long work days punctuated with paper plate dinners followed by carting my children to soccer practice, baseball practice, and birthday parties. Maybe it was the hours I invested in building Write on Fight On LLC.

Spring, the season of renewal, had left me suddenly drained.

For weeks a tangible tension grew in my legs, as if the muscles were giant rubber bands being pulled by the antagonistic hands of time, of stress. And despite the efforts of yoga, bike riding, constant stretching and hot showers the tension only grew.

The Fall.

The fall happened this past Tuesday around 10:30 pm.

As these incidents often happen, I was doing something pedestrian. Something I do almost nightly. I was walking toward the front door to see if it was locked, so, like my son says, “The bad guys on the news can’t get in.”

Before reaching the door I bent down to move a misplaced car seat and something happened in my brain (this often happens when I make quick movements…a result of my brain damage). Sometimes it’s as if my brain is a snow globe on a shelf and some excitable kid snatches it, smiles and shakes. And my legs, the two overly-stretched rubbers bands, simply couldn’t move fast enough to help me out.

I went down. Hard.

The house rattled and Cindy came rushing down the steps. She wanted to take me to the hospital, but my bruised ego resisted.

The next morning, after we got the kids to school, I agreed to go the hospital.

A few x-rays confirmed I had fractured a bone in my left foot and bruised my left femur.

Checkout these fine looking stems!

Later, lying on the couch, foot elevated and crowned with a bag of frozen broccoli I told my dad,  who turns 63 this week, what happened. After listening he said, “Well, maybe that’s your body’s way of telling you to slow down.”

Now I’m strapped with a walking boot for the next 4-6 weeks. Now I’m forced to take it slow.

I know, it sounds funny, “forced to take it slow.”

Parenthood, adulthood can be a merciless wave of urgency. Of deadlines and commitments. Of huffing and puffing and straining your way through each day, racing so much that you can’t sleep at night, worried about all the stuff you have to do tomorrow.

Life is our best teacher.

Life begs us to take it slow. To watch its beauty bloom. To listen to its mysteries hum.  To absorb the majesty of momentary living.

For the next 4-6 weeks I don’t have a choice. And despite the bruises, despite the break it’s humbling to know that life cared enough to consider me.

Despite popular belief, I’m fortunate.

Life took time from its busy spring schedule to discipline me, to force me to take notice, to force me to slow it down.

Be 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

 

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.

brain1
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

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