Happy Diagnosis-versary! Why I celebrate my worst day
For the second year in a row I’m celebrating my worst day– September 4, 2013 with a homemade chocolate cake topped with vanilla icing and one of Springsteen’s most badass lines “Ain’t no sin to be glad you’re alive.”
In fact, I made the same cake last year however, I’d like to believe this year’s cake is a bit more legible.
(And no, I did not decorate the cakes while riding a bus, surfing, or surviving an earthquake…)
Anyway, September 4th is now a big day for me. An anniversary of sorts.
On September 4th, 2013 I had my first MRI revealing my brain damage–large portions of my cerebellum (base of the skull) had degenerated.
The date has 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 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.
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.
Selfishly, when I began this celebration last year, I did it for me. A personal reminder to be be more thankful and passionate for the life I have.
Then my friend Deb Dauer, who was battling ALS, wrote this on her blog:
Until I read [a piece by] fellow blog writer, colleague, and friend…Jay gave me the gift of changing my perspective about “my worst day ever”. He made me realize that I am still here, and even though I am different in so many ways, I am kicking ALS’s ass! I can face ALS, stick out my tongue, say FUCK YOU, and get on with living.” (September 29, 2017)
Deb passed away on April 4, 2017 but not before she gave life all she had.
Dad called yesterday. He reassured me that my current flare will pass. That I have family who love me and that I’m tougher than my disease. Before he hung up he reminded me that I created write on fight on and now I was responsible for living up to everything it stands for.
We are not born to die. We are born to grow and love and throw our fragile bodies, as James Joyce wrote, into “the full glory of some passion.”
We are born to communicate. We are born to tell our story so that other struggling souls may hear it, think about it, and use it to ease the tension of life.
Today, I’m alive.
And you’re alive.
And according to the Boss and my friend Deb Dauer, that ain’t no sin.