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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Who do I think I am?

I saw the fantastic and inspiring documnetary called Who Does She Think She Is? at the MAG. WOW! I really liked that the event also included childcare. It is hard to be a mom and an artist, and certainly a wife.

When I was a little girl, when people would ask me what I wanted to be when I grew up — I would always answer a singer and and artist. When I was a little older, maybe 8 or so, I got a camera. I just took snapshots, and eventually portraits of my dolls. At some point my ideas changed and I thought it would be cool to be a chemist or something — but I was not cut out for chemistry, judging by my grades.

Singing was another option. I loved singing since I was little rocking out to the songs on the ’70s in my mom’s car. As a teen I joined chorus and briefly did some song writing and perfroming with my friends. We had big dreams, but as I try to tell my stepdaughter, it doesn’t always work out the way you planned. So you make alternative plans. I was in photo classes in high school and learned how to use video equiptment on our in-house TV game show Beep Buzz.

Although I still enjoy music, I mostly sing in the car. My passions did change to photography (and other artisctic mediums after college) and television. For many years I had a great spurt of energy for photography. All before having a cool TV job (and using my creative drive there) and having kids in my life.

I can’t really blame the kids, though. Yeah, they take up your time and much energy but their innocense as children is incredibly inspiring. I do blame my job and the fact that working on the web and using my creativity THAT way is what has drained me of my personal creativity. I give it to my company. And I also blame my body. It isn’t what it used to be. It’s old, broken, and weak. Possibly sick as well. And just ordinary life. We have so much to do today. Everyday. Grocery shopping, doctor appointments, etc… well you know what I mean.

So for now I will just write when I’m inspired and show you my older photos until I can get around to doing something else.