New Year, Same Disease

Last time around this time of the year I was full of hope for 2016

I had been invited to a blogging conference back east by the pharmaceutical company Novartis (#sponsored), Jackson had been making great progress by leaps and bounds, AND he had been seizure free for nigh on 3 years.

Then.  Then 2016 happened.

Say what you want about celebrity deaths and the election of a reality TV star to the highest office in the US–
In the TSC community?  Shit got real.

Let’s get back to that blogging conference.  Novartis contacted several of us “blogging moms” — whom I christened “the real Housewives of TSC” to come back east and discuss the disease : how we all deal with it ,  show us some things they were coming out with , get our input, etc.
There were five of us.
It was so exciting to finally meet in person these women who I had previously only met online.
It was the coolest thing I can think of to sit in a room with these women and talk so openly without explanation.  With understanding.  With empathy and compassion and KNOWING.
You got to to say words like “sega” and “rapamune” without tons of back story.
We kept in touch AFTER the conference too.

And you know what?
I can honestly say, without reservation:
2016 and TSC can suck it.
From each and every last one of  us TSC mommies.

Here’s Becky and Connor from Mixed Up Mommy.  How’s that for a September , eh?
Stephanie & Oliver from Lanier Landing hasn’t had a break in a long time and most of the recent holidays were spent in ER/ICU/Hospital.  Wheeeeee.
Heather and Maddie had their issues as well.
And last but not least there is Larissa and Emmaus’ who ALSO had their time in the ICU.

These are the TSC mommies I met at the conference. They do not include other families I follow and love like Brody’s Buddies and the lovable, awesome DAC.

And then there is us.  We are still dealing with the aftermath of Jackson’s broken leg and osteoporosis.

What I am trying to say is
THE STRUGGLE IS REAL.

So yeah, 2016? You can F*&K right off.
My TSC friends and I would like to raise a hail and hearty “F*&K YOU” And the genetic horse you rode in on.
Take your seizures, your invasive growths, and your neurological nightmares and shove them where the sun don’t shine.

2017 will find us fighting the good fight -as always. It is our way of life.

Oh.  And Novartis? Anytime you want to have us back, we will gladly come back, and come together, and share again.
If for no other reason than to see each each other , to revel in our bond, and to tell YOU and each other:
We are not done.
And we will never be done fighting.

 

 

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Ya’ gotta’ BELIEVE!!

Ever wonder where the name ” Captain Jacktastic” came from?
It was from a friend of mine that I went to school with lo these 30 years back.
FB reconnected us, and he would delight in the posts on my page regarding Jack.
It was HE who encouraged me to start the blog, and to share Jack with the rest of the world.
His name is Bart.
Bart hasn’t always had the easiest path, as this blog will illustrate, but he has ALWAYS had a sharp wit, a kind heart, and a passion for truth and justice.  He does a bit of writing of his own over on Facebook and I suggest you check out his Brain Damaged Perspective.
I am honored to call him friend.Ladies and gentlemen, and readers of all ages, I give you—
Mr. P.T. Bartman……..

I’m a Tinkerbell.
It’s not what you think, not that there’s anything wrong with that.
I view Tinkerbell from a different perspective. I view most things from a different perspective.
 I was this brain damaged kid, see.
 1973 was a pivotal year for me, third and fourth grades. I was starting to realize I wasn’t like the other kids. I didn’t think like them. I didn’t act like them. Things that came easy to them, I really had to work my butt at. Things that came easy to me, they didn’t get. Although I didn’t have the words to express it yet, I was Ginger Rogers to their collective Fred Astaire. I had to do everything they had to do, but in high heels and backwards. I didn’t have faulty programing. I had a whole different operating system. I could live with that.
Unfortunately there were those who couldn’t, or more accurately wouldn’t. My father being Dean of that particular school of thought.
My father only had two problems with me. Everything I did and everything I said. Other than that we got along fine, Mrs Lincoln.
It was around then that I came to the understanding that I wasn’t going to learn any of the things I needed to know in life, sitting in his classroom. At the high school where he taught American History, he was everybody’s favorite teacher and coach; but in this instance, his syllabus was severely limited and mainly consisted of examples of how I fu…messed up, and why everybody else on the planet was better than me. I decided it was time for independent study.
 It began one Sunday in Sunday School. It dawned on me, Jesus told parables. Parables were stories that taught lessons. In school I learned Aesop told fables. Fables were stories that taught lessons. But it all came together one night while lying in my bed with the dial tuned to 710 AM.
 Jean Shepherd (A Christmas Story) was telling a story about an Ovaltine lid and a Little Orphan Annie Decoder Ring when the pattern hit me. Jesus told stories. Aesop told stories. Jean Shepherd told stories. Stories teach lessons…stand back I’m on a roll here…books have stories, movies have stories, TV, plays, songs, poems, they all have stories. Everybody has a story and they all have lessons. And the lesson of the decoder ring was…don’t trust Corporate America (which has served me well these 40 years). Stories are made of words, I GET words, I could do this.
Game on.
What does that have to do with me being a Tinkerbell?
That story begins with the 1973 New York Mets.
I don’t claim to have Aspergers because I’ve never received that diagnosis but I have symptoms consistent with Aspergers or something else on the Autism Spectrum.
One of them is the depth that I’ll dive into subjects that trigger my interest. It becomes an obsession. I want to know everything about it. Not only do I want the information but I have a compulsion to share that interest with everybody. And then I’m flabbergasted when everybody else doesn’t fi it as fascinating as I do..
My father’s tack was to try to destroy any pleasure I found in these subjects and prove that everything I thought was wrong.
One of these earliest obsessions was Baseball. I had been to my first MLB game the year before and I was hooked. My favorite team was the Mets. Not surprisingly, My father’s favorite team was whoever was playing the Mets. And in Spring and early Summer he was having a hell of a time as the Mets collapsed.
They had started out strong, winning 6 in a row, but after that, to say the wheels came off the bus would be an understatement as they parked in the cellar for what seemed like it would be the rest of the season. And my father made sure I knew about every stinking loss. It got so bad that they were 14 games out of first place on July Fourth.
What made it even worse, was that my favorite player Tug Mcgraw was mired in one of the slumpiest slumps in the history of recorded slumpdom. He just plain sucked that year, and nobody had a clue why. Another fact that my father made absolutely sure I was aware of. He did everything he could think of to rock my faith.
I never figured out if my obstinance angered him or gave him some kind of perverse joy in upping the stakes. Probably both. The eruptions were coming quicker and quicker and becoming more intense as the season wore on. My father knew exactly what buttons to push to get me to melt down. It became almost like a family game between him and my sisters. I’d swear money changed hands on the action.
He used an hour plus car ride to my aunt’s house in North Jersey to prime the explosion at her 4th of July party.
Independence Day in an Immigrant’s family is The Holiday, a combination of Christmas and Thanksgiving and Summer and everything that is great about their story. And Papa Falcone’s family was no different. The annual party was not really optional. Everybody would be there. Family, family friends, friends of family. Food, both Italian and American Picnic, enough to feed the proverbial army. Lot’s of people to tell stories to. Aunt Marie’s Pool. And the whole damn sundae gets topped off with exploding cherries. I was so looking forward to this.
My father and sisters spent the whole ride tormenting me. For over an hour I was trapped listening to reports of the game every 20 minutes on the radio, interspersed with their witty banter and opinions of how bad the Mets were and how anybody who rooted for them was a moron. They had invented Sports Talk radio. They did 2 and a half segments on the fact that Tug had blown a five run lead in the 9th in Montreal.
I was not a happy camper when the car stopped across the street from my Aunt’s. I tried to escape into the party. But he followed me. Any discussion I was having got diverted into a discussion of the Met’s shortcomings.
The fourth time it happened. I blew. He wanted me to blow, and Oh Baby I Blew. That night’s firework’s had nothing on me. I had just acquired a new word in my vocabulary and I chose that moment to debut it. I dropped an F-Bomb in front of Grandma. Fortunately Mama Falcone’s grasp of her adopted language wasn’t great and she missed it. Unfortunately everybody else there spoke better English.
I spent the rest of the party on a time out in my cousin Anthony’s room.
I watched the fireworks from the backseat of the car.
After that we moved into a shaky detente. I spent as little time in the house as I could, and when I had to be there I stayed in my room. We both knew it was only the calm before the storm. I was besieged and I was afraid I couldn’t hold out much longer.
Then one day I woke up and my whole perspective altered, I read a story in the newspaper and the game changed.
My hero, Tug, had been having lunch with his friend Joe the Insurance Guy. Now besides selling insurance Joe was a spiritual guru to some of the Mets, having been introduced to them by their late manager, Gil Hodges. Joe’s message to Tug that day was on positive thinking and the power of belief. You have to believe Joe kept telling him.
On the ride to the stadium Tugger kept mulling it over and over in his mind.
When he got to the stadium he was mobbed by the fans asking for autographs and demanding to know what was wrong with the team. He signed every autograph and answered every question, “Ya Gotta Believe.”
He went into the locker room and M Donald Grant, Chairman of the Board of The New York Mets called a team meeting to reinforce the front office’s faith in the team, to tell them “We still believe in you.” It was all Tug had to hear. He started running around the room pumping his arm’s and yelling “YA GOTTA BELIEVE! YA GOTTA BELIEVE!”
It became the teams catch phrase.
It became my mantra.
But I knew that belief was not just in word but also in deed. Faith without works is dead.
So I told every body the Mets were going to win the division. I told my father. My father laughed and called me a moron. I told my sisters. My sisters laughed and called me a moron. I told my friends. My friends laughed and called me a moron. I told Pastor Opsahl. Pastor Opsahl patted me on the head, kindly. And then he laughed. At least he didn’t call me a moron.
But I just kept believing.
Then as July turned into August The Mets started winning.
And I kept believing and noticed there were less and less people laughing and calling me a moron.
And they kept winning, putting together one of the best September Stretch runs in history with Tugger on fire, unhittable, and screaming “YA GOTTA BELIEVE”.
And nobody was laughing when they won the division.
The lesson was there all along, all I had to do was believe.
Something else happened in 1973 to help shape my understanding of “belief”
NBC rebroadcast their production of Peter Pan with Mary Martin for the last time. I had grown up with Peter and the lost boy. I had read the books by James Barrie. I had seen Disney cartoons featuring Peter, but this would be the first time I saw the story brought to life (Disney wouldn’t re-release their movie to theaters for another year).
What got me the most was Tinkerbell’s near death experience, having been through one of my own. Her light fading as Peter begged us to save her. To believe. Not just to say we believe but to prove it by clapping. Faith without works is deaad. Not only was I on my feet clapping for Tink, but I made damn sure everybody in the room watching was clapping. Tinkerbell was not going to die. Not on my watch.
The joy I felt when her light started to brighten could have flown me to NeverLand.
It eventually dawned on me that I was a Tinkerbell. As long as I feel people’s belief in me, in both word and deed, I thrive.
But when I feel that belief waver, I die.
What does this have to do with Captain Jackastic?
Jack is growing up surrounded by that type of belief.
And I’m envious.