I turn 39 this week and I’m out here counting breadcrumbs

I turn 39 on Saturday.

A year ago, I wrote I turn 38 this week and I’m still lost. 

I’m another year older, 12 months away from 40 and I’m still proud to admit I’m lost. Maybe not as lost as I was last year yet I’m still mildly lost. The GPS is now on and I’m mazing through the mountains and valleys however the internet connection is weak.

At least if I’m lost–I’m lost doing what I love. I’m writing and telling stories and trying to help people discover their own voice as I discover my own. And through those efforts–I find clarity.

But I’ve learned–it’s not always easy to do what you love.

In the past year I’ve dealt with bouts of fear and doubt and insecurity and sickness. Life is indifferent to what we want. Life will almost always discourage and distract you from being your true self.

Since I began this blog almost 4 years ago, and since my brain diagnosis almost 6 years ago, I’ve asking myself why am I writing when I could be doing something else?

Playing baseball with my children. Taking down the Christmas decorations. Painting the bathroom. Watching television.

The answer usually doesn’t come right away. Sometimes I wrestle with the question of why while writing or reading or driving or teaching or flicking off the bedroom lights before I go to bed at night.

Why do I spend so much of my time writing?

The first time I saw my neurologist in the fall of 2013, after looking over my brain MRI he looked at me and said ,”you should be dead or in a hospital dead.” Then the office went silent for awhile.

When I question why I am writing I often think about what the doctor said on that warm October afternoon. His deep brown eyes. His matter-of-fact voice. And how he emphasized “should”.

I also think about the silence that followed his voice.

As if the silence was speaking. As if the silence cleared it’s throat, leveled it’s big eyes into mine, and asked: “So now what are you going to do about it?”

And I see myself sitting straight in that brown, armless cushioned office chair with my feet drilled to the floor, looking into his brown eyes, listening to the silence and thinking with absolute clarity, “I am going to write.”

Maybe we need these hard moments, when our mortality is laid out neatly before us, when the silence is daring you to flinch, so we can understand who we are and what we should be.

And that’s why I write.

Because of the “should”. Because of the silence that still dares me to risk being my true self.

I am 39 now. My years of entertaining the “should” are fleeting. If not over.

I see each piece I’ve written as a breadcrumb. A reminder of where I’ve been and as long as I’m dropping breadcrumbs– I’m not totally lost. I’m making my way. Even if I’m just counting breadcrumbs.

Below are some of the best breadcrumbs from the past year. I hope you enjoy reading them as much as I enjoyed writing them.

I hope my breadcrumbs have and continue to help you find your way.

Thank you for all the comments, shares, and love you have given me throughout the year. My journey is more fulfilling, more meaningful because I’m fortunate enough to share it with you.

Be well,

Jay


My Best Dreaming Partner

When I didn’t die I decided to write about my life.

I wanted to understand who I was before I got sick, why I got sick, and how I continue to live with the sickness. I wanted my children to know my intimacies. My joys and fears. My strengths and weaknesses. My victories and failures. How I discovered my voice and why I began to write. And most importantly, I wanted my children to know they should never, ever be ashamed of who they are and to always pursue their dreams.

I also wanted my story, my courage to help you with your life. That my search for meaning helped you to discover yours. I wanted to inspire you to aspire. That on those cold nights, my words blew across your embers and kept the heat pumping.

Because even though our topography may differ, underneath the soil of adulthood we’re all just kids dreaming for better days.

Three and a half years ago, when I told Cindy I was going to commit myself to writing she hugged me and told me to do it.

She is the best dreaming partner I’ve ever had.


Then I Heard My Dying Friend Laugh

Then I heard my dying friend laugh.

A deep, booming, infectious laugh that is pitched higher than other laughs and lingers about the room long after the joke has been made.

A laugh you secretly wished you had.

A laugh–once you heard it–you would always hear it.

Unmistakable.

Jangling with life.

Forever.


A Therapy Story 

Across the room there’s a woman with a black brace hugging her left knee. She’s walking on a treadmill. She’s staring at me. Her eyes are heavy. Her gaze is real.

Since my diagnosis, 5 years ago, I’ve developed a skill. I can read her mind. “No cast. No brace. No crutches. A secret wound,” she thinks.

Yes ma’am, it’s a secret wound that brings me to this blue Swiss ball.

A secret wound I’m obsessed with.

A secret wound that I keep writing about, hoping that maybe all these stories can somehow fill the holes in my brain and correct my eyes and soothe my pain.

A secret wound that you can’t see but I absolutely, positively feel. And I guess, in some selfish way, I want you to feel it too.


This post is dedicated to the look my son gave

But this time, I was paying attention. This time, I saw one.

It happened as my five year old turned to sit on the red bench next to Santa. My son’s eyes caught mine. His electric blue eyes as big as a pair of moons. A look bigger than life. A look that confirmed everything, not matter how fantastical, was possible. Santa is real. Magic is real. The mythical world was meeting the ordinary world and it was glorious.

When was the last time you looked at life with such joy?

As adults we wake, shovel down breakfast, commute to work, shuffle papers, attend meetings, make presentations, pop two Tylenol, send some emails, organize our desk, write a memo, commute home, make dinner, wash the dishes, sink into our favorite chair, and fall asleep with the television on.

Life distracts us. Our attention falls on the wrong things. On broken things.  And, if you’re a parent,  while piecing your life together, you’re children are seeing the world for the first time and, in a few blinks, will never see the newness of the world again.

In the gleam of his eyes and bend of his 5 year old smile all my convictions were confirmed.


I’m watching it’s a Wonderful Life with my son…

What my 8 year old doesn’t understand is that most adults:

Are terrified of embarrassment.

Fear change.

Define themselves by material possessions and financial success.

Undervalue failure.

Overvalue wealth.

Focus on the wrongs instead of the rights of the world.

Believe they’re not worth saving.

Believe dreaming is childish.

Believe self-pity is acceptable.

Believe running from problems is a formidable solution.

Are so nearsighted they fail to acknowledge all the good they’ve done, the lives they touched, and the people who still need them.

Fail to realize problems catalyze growth and that our problems are not nearly as unique as we think they are and that sometimes shit happens and, if we can sit on the pot long enough, we realize we have the ability and resources to clean it up.

But you can’t say that to 8 year old. You’d give him nightmares.


It was both funny and painful to watch

And then, if I wasn’t paying attention I would have missed it, pulled a tightness to her lips as she reached for a glass from the cabinet that made me understand that everything hurt inside.

Three days ago she ran the race for me. Because I couldn’t.

She didn’t have to run. But she did. And now she hurts. For me.

Love is often subjected to generalizations and cliches. Love is patient and kind and blind and open door. But cliches don’t make us understand. Cliches don’t make us feel.

The love, the gritty, everyday love I’m writing about, the kind of love we crave when we return home from a long day of work or feel frustrated and defeated when the bigness of life weighs on us, is often found when we open our eyes and really look at the little moments.

The slow steps. The wince. The smile.

Those are the moments we are often careless with. Those are the moments we often lose sight of.


Taking Notes: A Love Story

Anytime you write about love you ink a fine line between cliche’ and Nicholas Sparks. So, in my attempt to avoid such fate, the only thing I can offer is a secret love story about love. So secret that when my wife reads this, she will know it for the first time.

I’ve written about my health issues and personal shame and failure but writing about love is something I’ve avoided. For me, writing about love is a little embarrassing. A little too revealing.

And plus, how do I write about love in such an authentic yet impenetrable way that it’s not the subject of dissection, comparison and judgment?

Truth is– you can’t.

It’s simple emotional physics.

To love is to want. And to want is to have weakness. Therefore, you can’t open yourself to love without subjecting yourself to dissection, comparison and judgment.


Happy Diagnosis-versary

Five years later my brain damage is still unaccounted for.

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

Five years later I’m still engaged in a silent war.

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.

Every diagnosis-versary I bake a cake, decorate it (myself), and celebrate with my family.
“Ain’t no sin to be glad you’re alive”

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