Terminal Freedom by a Madonna Wannabe

…or How I Got My Teen Idol To Finally Recognize Me

Me at 13

Well…it wasn’t exactly a plan to have that happen. More like an incredible miracle!

As ANYONE who knows me, especially friends and such who knew me in the 1980s, I LOVED MADONNA.

Me as Platinum Madonna at 16

Oh yeah, I had every album on vinyl (later to be purchased over and over as formats kept changing!) as well as any 12 inch single I could get my teenager hands on!

Madonna adorned my walls in my room (AND Duran Duran). I wore shitloads of rubber bracelets in every color (’cause it wasn’t a thing back then) especially black & white ones. You could usually get these things from gum ball machines for 25 cents for 2.
I had lace gloves, knock off Wayfarers and crucifixes. It was not only a shock to my mother, but to the entire school.  You know that town in Napoleon Dynamite? Yeah, that’s what everyone dressed like. I was the freak.

China Blue

Eventually I grew to enjoy this status – as more “freaks & geeks” came out of the woodwork and we became friends.

Me at 17 - Self PortraitDespite growing up and listening to more alternative music, I’ve always kept my eye on Madonna. More often then not, she was doing something that I just totally “got.” Sometimes, I emulated her, even as a twenty-something.

I was artistic, independent, crazy and passionate. I showed my photography and hung out at dance clubs. I even tried to play house for a while. Life went by.

Little Kate, Big WorldI became a “stepmom” to my boyfriend’s daughter Kate around the time that Madonna’s daughter Lola was born. Eventually we married and became official. It was kinda cool to see Kate & Lola growing up in the “same” teenage world.

Eventually, I stopped living in parallel to my Leo sister. I worked a regular job. I stopped thinking about getting rich or famous and just enjoy my life as it unfolded. I did get to have my very own baby girl! Pretty much all my creativity had gone into that project and work.Nikki and Grandma's Pond

Thankfully, I got a great group of friends that got me back into being creative again. Of course, by this time, I was showing symptoms of what we know now is ALS. Now, because of my Scooby Gang, I keep an eye out for local or interesting projects I can participate in.

I saw the posts on Facebook about Madonna’s new project and was like – cool! Of course I’m gonna do something!

So in November 2013, I uploaded a video piece to the  Art for Freedom project about having ALS and what freedom means to me. More about project.

Crazy thing is, by the time I’d gotten around to doing some kind of artwork for this, I forgot there was a prize of some sort. Plus I did it “off the top of my head,” no script. Messed around with some settings in YouTube to make it look arty. That was it.

Apparently, by December 2013, Terminal Freedom was chosen to be part of December ‘s Art for Freedom by celebrity curator David Blaine. The video was highlighted on December 9th.

Art For Freedom December

I had forgotten about looking to see if it ever made it to the site. I never thought anyone would watch it! But I entered something so that was enough for me and I went back to my regular work.

I got an email in January 2014 from a rep for Ray of Light Foundation saying  “The video was chosen for the month of December 2013 by Madonna and celebrity curator David Blaine to win a $10,000 grant from the Ray of Light Foundation. ”

Never mind the grant money — I couldn’t get past that someone WATCHED that video! Not only that but my teen idol had WATCHED it! I had two people come in to look at the message on my computer! Holy crap! MADONNA had recognized me as an artist. Well and David Blaine too.

Terminal Freedom

That’s also when I found out about being featured in December, etc.  I chose to give this money to the MDA Rochester and The ALS Association, Upstate NY Chapter because I do a lot of fundraising for and receive services from both of them.

WXXI-AM also did a story –  Video Submitted By Local Woman Wins $10,000 For Area Non-Profits

RIT’s University News story – RIT alumna wins award from Madonna’s foundation: Joy Parker received a $10,000 award from the Art for Freedom initiative

Today I was given the thumbs up from Ray of Light that I was now added to the website. Check it out.

Ray of Light December 2013 Winner

I may be dying from a terminal illness, but I am still making an impact – on my Community and the World.

Now it’s your turn to Express Yourself ! Open Your Heart and let in love. Put yourself out there. Life is crazy!

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The world has gone crazy (or how governments get overthrown)

In my “day job” I’ve been spending a lot of time on Tweetdeck watching all our Twitter accounts. I should say that I’ve really just been watching the world revolutionize! Of course most of it is coming from NPR’s Andy Carvin! In the course of my workday, I’m seeing average people around the world using their phones – overthrowing regimes! Mixed in with tweets from The Onion, Duran Duran & Alyssa Milano, were these retweets from real people, talking about protesting to change their government. First it was Egypt, then Libya… Real humans talking about what is going on there at that very moment… Women & children being woken up in the wee hours with tear gas and rubber bullets!

Do these regimes not understand that this life is one of a global consciousness?

The World

The internet — or internets as some would say — is definitely a big part of making the world a smaller place. My day job certainly takes me to places and connects me to people from all over the world. All from my chair, of course!

I never thought I’d ever be doing anything on a computer. Back in high school — I wouldn’t even touch a computer. Thanks to RIT and my good friend Jeff, I learned how to use a Mac (thanks Jeff!). I’ve been smitten since. With the Mac, that is.

Anyhoo, I was going to be a famous photojournalist rock star or something like that in high school. I think that’s when the whole “world view” started to develop for me. I just remember these dance club parties (Pandora’s Box)  my friend Dawn & I would have in her basement. They were always of an International flair. I remember Tami and Keith came over. One time Laura and Natalie came too. Ah the 80s! We loved anything not American. We weren’t UN American we just liked to know more about the world than what we’d seen already. We enjoyed meeting the exchange students at school. We watched CBC and listened to Canadian music.

So I guess I was already of this World mindset even in my small town of Bliss, NY.

A few years ago, while working at WXXI, we had a guest come in for an event named Spencer Wells. An amazing GORGEOUS man, he was also super intelligent. He had done a show we were airing called The Journey of Man: A Genetic Odyssey. He’d also written a fascinating book of the same name which completely floored me. Basically, he was able pinpoint how all people of this planet were related by genes. Incredible! Learn more

So imagine my dismay when we are bombing other countries. Hello! Everyone is related! Quit it already.

Now we are at the social media part. The part that once again, bridges the gap between people in different cultures and backgrounds. I guess Michael Jackson was right — We are the World.