Advice from the Dead

The life of the dead is placed in the memory of the living.–Cicero

Recently, while cleaning out the garage, while rummaging through stacks of dusty boxes I came across a brown, unmarked envelope.

Intrigued, I quit rummaging, opened the envelope door and found my grandfather smiling on the other side.

Inside the envelope it’s 1954 and Pop was still years away from being Pop.

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Mike “Pop” is centered. His right hand holding a pilsner glass. To his right stands his Uncle Al.

Right now he’s Mike and he’s 25 years old and just bought at bar on the corner of Cedar and Pacific Avenue in Wildwood, New Jersey.

He renamed the place “Mike and Ed’s” and he’s serving drinks to a row of rowdy Philadelphians who escaped the tightness of their row home lives for the weekend promise of some New Jersey shore magic.

It’s early evening and the bar, like the decade itself is based with thick,  masculine laughter which overpowers the bouncy doo-wop rhythm of  “Life Could Be a Dream” frisking out the jukebox.

It smells of a different time. Of Old Spice and cigarettes.

I move across the checkered floor to an open seat at the end of the bar and watch Pop make small talk with a few sunburned necks. He laughs and it’s hearty and deep just like I remember.

Pop looks up and nods as if he’s been expecting me.

He turns to the tap, pours a beer in a short pilsner glass and brings it my way. His skinniness surprises me. But the eyes, the smile, the roundness of his shoulders are all there, like they’ve always been.

Pop puts the glass down in front of me. His blue eyes meet my blue eyes and he lays his hand on top of my hand and tells me how he appreciated the funeral, how he appreciated the eulogy I delivered even though it was a bit brief. An entire life in 1,337 words? He thought I should’ve stretched it to at least 1,700.

He winks.

Then his face gets serious.  He tells me he’s disappointed we paid full price for the luncheon after the funeral. He tells me knows an Italian who rents a little room behind the scrap yard along the Delaware River. He tells me the Italian would’ve catered the whole thing, funeral and luncheon, for half the cost.

He tells me he doesn’t have long because other people need him.

He tells me that death is a lot like life in that sense. Someone always needs you.  Someone is always failing to listen. But death, he says, brings infinite patience. Sadly, life does not.

A drunk wearing a tilted fedora calls out, “Mike, Mikey boy bring me over another one. I told the old lady I’d be home by 7 and it’s quarter of!”

Pop shoots the old man a “wait your damn turn old man” look. A look he perfects when, in a few years he becomes a police officer and spends late hours working the fanged streets of southwest Philadelphia.

He returns to me, “See what I mean, no patience.”

Then he gets serious again. Hard lines form around his eyes.

“You know what the living say about the dead? About how, at least, the dead are in a better place.”

I nod.

“Wrong. What the living fail realize is that even though your setting changes, you do not. When you die you take yourself, for better or worse, with you to the other side.  Look around. All these men came here thinking things would somehow be better. But they’re miserable laying bricks in Philly and they’re miserable drinking beer in Jersey. Fools. They thought by crossing the river, by shifting states their life would magically improve. Life, death they don’t work that way.”

He tightens his grip on my hand and says, “It’s not where you are, it’s who you are that matters. The same holds true for the afterlife. And you’re going to mess a lot of things up. But if can let love lead your way you might do just enough to get it right. And if you can understand this while you’re alive, I promise when your time comes, you’ll cross that bridge a happy man.”

He loosens his grip and the other hand drums its fingers on the bar and he looks out the window. His brow bent like mine when I’m contemplating something big.

I study his profile the way I did when I was a kid tucked in the front seat of his white pickup truck.

I remember how he would be driving and singing with Frank Sinatra and his profile would be glowing against the shifting sunlight and when the chorus hit he flashed a hard earned smile, a smile of a man who made peace with his life, with the world. A smile I can’t quite forget.

When his eyes return to mine he tells me the beer was on the house. But that was it. No more freebies. This isn’t a soup kitchen. And if I wanted another I would have to pay for it or wash dishes.

Pop takes his hand from mine. He steps back, smiles like someone about to board a plane and somehow, defying the laws earthly physics I still feel the pressure of his hand resting on mine as he drifts away, down the length of the bar, tending to the others who need him.

A bead of sweat rolls down the glass.

A heavy, hollow laughter steamrolls across the bar.

Something sits in my throat.

I want to call him back.

I want to breathe with him again.

I want to tell him I write stories about him so he doesn’t seem so dead.

I want to tell him how I missed him just a little more around Christmas. How I wish he could hold my children. How I wish they could experience his smile and hear his advice and feel the gentle pressure of his hand against theirs.

But I don’t.

Because you can’t.

Because you can’t tell the dead what they already know.

Because when you open an envelope and you’re greeted by the dead and they squint and smile and speak, all you can do is listen, consider your mortal ways and do your best to heed their eternal advice.

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.
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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

The Healing Power of Donuts

donutsI know, I know the title of this article may not jive in this new-age, pro-biotic, juice-cleansing world we live in.

But relax there yoga pants, this is a guilty-free pleasure. A farm fresh, cage-free, gluten-free, calorie free article about the healing power of donuts.

So last Thursday, on my way to work, I stop at Dunkin Donuts. Now I’m not a daily DD’er but I was grinding through a particular tough week and felt I owed myself a belly full of sugar and complex carbohydrates.

My tough week wasn’t because I witnessed the American oxymoron known as Super Tuesday or the fact the Olsen twins are not in Fuller House or that I overheard my son singing Flo Rida in the shower.

No, my crotchetiness stemmed from a purely selfish reason– I was in the taxing process of lowering my medication.

In July, to manage my Sarcoidodis, I was placed on the mercurical  “wonder”drug known as Prednisone.  Prednisone is an anti-inflammatory used by millions Americans to treat eveything from poison ivy to lupus. And though Prednisone  provides patients with energy and strength it slowly and quietly breaks down muscles and organs. Short-term exposure to Prednisone causes fairly minor symptoms–headaches, mood swings, weight gain. Long-term exposure offers some nasty irreversible complications like osteoporosis and diabetes. Prednisone and donuts — both positive and negative and both are consumed by the bushel. America may run on Dunkin but America relies on Prednisone.

So I’m standing in line at DD and I want coffee, and donuts. Lots of Donuts.

My hands ach (one of the treats of my Sarcoid) and I clench my fists and look to the mounted and muted TV. CNN is on and a bearded and homeless looking Leonardo DiCarprio is being tossed around the woods by a bear.   He is screaming but the TV is muted and know one hears him (except me) and I think, ” I hear you Leo, I hear you.”leo

The suited gentleman before me orders 4 coffees and a dozen donuts.  The cashier offers a half- smile, spins and gets to work. The bear is trashing Leo about and his face bends in pain. Suited gentleman half-turns and gives me that half- smile people give to show solidarity when they’re standing in line together and I half-smile back and clench and release my fists.

The cashier returns with 4 coffees and jokes, ” did you have a late night?” Suited gentleman smiles and says , “No I’m treating some of my staff this morning.”

Leo has survived the bear attack and is out of the woods and standing behind a podium. He’s smiling and clean shaven and he’s waving a statue of a little gold man.

The cashier hands over a box of donuts to the suited gentleman and he stacks the coffee on the box and says thank you, pays, and smiles at the cashier, at me and exits, leaving a wake altruism and Old Spice.

I step to the counter keeping one eye on Leo as the close caption scrolls “We need to work collectively and stop procrastinating [clap, clap, clap]. ” I order a medium coffee at a box of 24 munchkins and deduce I will eat 4 munchkins-2 chocolate, 2 glaze- and will offer the remaining 20 to my colleagues because that’s what Leo and the suited gentleman would want me to do… be kind.

A few minutes and 4 Munckins later I’m the English department hero. I’m offering Munckins to colleagues and they are smiling and thanking me and for those fleeting moments I forget about my tough week and the pain in my hands and I wonder if the suited gentleman was having a tough week too or he is just a nice guy.

Chronic illnesses are no fun. And though I may look fine on the outside, inside I often feel like Leo D. must of felt after his tango with Cranky the Bear. But here’s what is fun–  shedding your ego and thinking of other people. An egoless act is refreshing and cleansing. Like mountain air. Like a Coffee-Coolatta.

Look, I’m not splitting the atom here when I’m saying we should be more kind. You should. I should. Because we are human and we spin on this planet together. And we are all suffering. We are all tragic by design.

But I never knew kindness could be a painkiller. Like Prednisone,  kindness can be a simple source of relief but unlike Prednisone , kindness can heal the important things inside– instead of tearing them apart.

Last Thursday, the suited gentleman served a gentle reminder that I need to get over myself. Chronic illness or not I–we– need to do a better job of putting other people first.

And who knows maybe next time I’ll consider the wellness of my colleagues and present something healthy– maybe stalks of kale or spoonfuls of quinoa –maybe.

Be kind,

Jay

25 Reasons Why Raising a 3 Year Old is Like Having a Drunk College Roommate All Over Again

The late nights, the loudness, the curious smells, the paralyzing headaches. No I’m not reminiscing  about my wild college days. I’m talking about this ordeal known as parenthood.

My son, Dylan is currently in the throes of the dreaded “Terrible 3’s”. The cantankerous stage of childhood development that convinces parents that they are feeding, bathing and padding a college fund for Satan’s seed.

The other night, Dylan is refusing to take a bath and when I say refusing , he doesn’t politely protest, ” Oh Father, I’ll pass on cleansing myself tonight. However, I do appreciate your attempts to rid me of this dumpster-like odor.”

No, he is sprinting about the house, naked, screaming in foreign tongues as snot and tears puddle on his face and chest.

Amidst this madness, which in our house is known as Tuesday Night-Bath Night, I realized I had been here before. The crying, the gibberish, the yelling transported me back to absurdity of college life. Now my college roommate was a bit of a challenge. He was often drunk. Which meant he was loud, demanding and  unpredictable. Which often required me to assume an authoritative parenting role in our dorm room — scolding him, threatening him, and forcing him to go to bed. Which in retrospect was great preparation for parenthood.

So, like a good parent,  I spent the last few days watching Dylan and noting is behavior and I was astounded to learn how similar raising a 3 year old was to living with a drunken college roommate. Here are my observations…

  1. They have no respect for grammar. They say things like “Me hungry.” and “Car go fast now.”
  2. They are always right– about EVERYTHING.
  3. They make outrageous demands like “I want a dinosaur!”
  4. They eat without decorum, utensils or a fear of diabetes.
  5. They cry for no reason.
  6. They laugh for no reason.
  7. They say curious things like” I think I pooped myself.”
  8. IMG_1539They secretly pee themselves.
  9. In public places–the library, the mall, KFC–they often throw themselves to the floor and refuse to get up.
  10. They get angry at you for not understanding their babbling gibberish.
  11. Their clothes are often mismatched, disheveled and stained.
  12. You have to repeat yourself over and over and over again and even then– they refuse to listen to you.
  13. They adamantly disagree with logic and denounce proven theories like gravity.
  14. If you really want to enjoy yourself you need to find them a babysitter.IMG_1534
  15. Their hair is often unexplainably sticky.
  16. They scream at you for no reason.
  17. They refuse to go to bed, claim they’re not tired and yet once in bed they fall asleep faster then you can say, “Sealy Posturepedic”.
  18. When they puke, they leave it and expect you to clean it up.
  19. They break your stuff and do not apologize.
  20. On days that are clearly not your birthday they will sing “Happy Birthday” to you.
  21. They like to hold incoherent conversations with strangers.
  22. A car ride will undoubtedly induce sleep.
  23. They leave trails of crumbs and food wrappers. IMG_1547
  24. They stain carpets.
  25. And mercifully, when the night is over, you have to carry them off to bed.

So Kevin, wherever you are, thank you.  Your ridiculousness and tomfoolery prepared me well for the tribulations of parenthood.