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!

Today I am 42

Yep. The cat’s outta the bag. Either you thought I was younger than that  – or you thought I was older. Let’s just say you thought I was younger.

As I was saying… I am 42. It’s been a strange and long road to get to today. Not only the usual being born growing up stuff that people do. Not even the mental growing up that we often are forced into. Not just because I am terminally ill.

On August 8th, 2011 things started to change. I survived a massive  pulmonary embolism.

I’m not being dramatic when I say MASSIVE. It actually was SEVERAL clots. I thought I just had a panic attack. I count my lucky stars that I work with AMAZING people. My two ANGELS know who they are.

I had no idea what was wrong with me except I had blot clots. They gave me oxygen and blood thinner. Scanners for this, that and the other. It took hours. I didn’t actually know what it all meant until I managed to get out of the resident doc.

I am crafty. As soon as I questioned the resident, I grabbed my iPod Touch and jumped on the free hospital wi-fi to google blood clots.

And that’s where I learned why everyone was so grim and serious, including my husband.

As you know, looking up any kind of health problem is scary. I had NO IDEA I was moments from death when I arrived at the hospital.

It’s almost a year since that happened. I was bedridden, had physical therapists, visiting nurses,visiting care assistants, and not a lot of strength. It took until Thanksgiving to realize that although I was regaining strength, I had lost a fair amount of it too.

I had to accept that I wasn’t going to remarkably improve, the ALS was still going to make both breathing and walking more difficult.

It’s just how it is going to be. It’s how it is.

I spent a lot of time showing everyone my strength to help my loved ones and other people who suffer the same fate how great I am doing at carrying it all and being so positive. This is the other side of that coin.

It is hard. Life is hard. Life is hard for everyone. That is truly how I get through my dark times.

It’s hard to think ahead to the next year when I’m not even sure I’ll be here next year. It’s hard to set personal goals or even professional ones when I no longer see so far into the future. Those are part of the life I left behind.

I am finally in the here and now. What motivates me now is what I can do NOW. Right now. Not last year, not next year. NOW.

Happy Birthday to me as I am now!

 

Speech from Red Wings Game

Hello!

Thank you for the chance to say a few words to you tonight about ALS and the important research being done to find a cure.

ALS is a rare neuromuscular disease that affects about 1 in 100,000 people.

While its cause is still unknown, and the cure remains elusive, we celebrate the progress that’s been achieved by making May “ALS Awareness month”.

We do so as a tribute to a player who, at the height of his career, announced to the world on May 2nd, 1939, that he would be leaving his position as Captain of the Yankees.

The sudden shock of seeing an athlete go from a 363 average to only 4 hits in the first 8 games of the ’39 season gave the world a dramatic example of how quickly ALS can progress, and that no one, not even The Iron Horse, could fight it.

I am referring, of course to Lou Gehrig and the disease that bears his name.

When he made his famous speech, he said he was lucky.

He said it was because of the love and support from his family, friends, and fans, that he could face ALS as he did the game of baseball: with heart and a winning attitude.

Today, the MDA and the University of Rochester Medical Center, are helping ALS patients like myself face this disease,  the same way Lou Gehrig did –  and to live each day to its fullest.

On behalf of the MDA, I ‘d like to thank all the fans of the Rochester Red Wings that are here tonight for your support, and encourage you to do what you can to support ALS research to help us find a cure.

Thank you.

Joy

Vipassana quotes

Joy. – The intense bliss, pervading the whole being, which follows on the assurance of salvation won, is independent of the dogmas or beliefs of those who have felt the disenchantment, passed through the struggle, and won the victory. We have undoubted and most interesting examples among the adherents of the most antagonistic forms of Christian belief. And Moslem Sufis and Buddhist Arahats have had the same experience. There are preserved in the canon two collections of the Songs of the Elders, ascribed respectively to one hundred and seven men and seventy-three women who became Arahats in the life-time of the Buddha. They are, with a very few exceptions, paeans of joy and victory. They have, unfortunately, not been translated as yet into English [Editor: several translations do now exist]; but the spirit they breathe is shown in the following prose passage. [Taken from my Dialogues of the Buddha, vol. i. p. 84.] After pointing out that the Hindrances (Nivarana) – sensuality, ill-will, torpor of mind or body, worry, and wavering – affect a man like debt, disease, imprisonment, slavery, and anxiety – it goes on:-

‘When these five Hindrances have been put away within him, he looks upon himself as freed from debt, rid of disease, out of jail, a free man, and secure. And gladness springs up within him on his realising that, and joy arises to him thus gladdened, and so rejoicing all his frame becomes at ease, and being thus at ease he is pervaded with a sense of peace, and in that peace his heart is stayed.’

“… Our deeds follow us from afar,
And what we have been makes us what we are.”

Fellowship with the Lovely

Thus have I heard. Once the Exalted One was staying among the Sakyans at Sakkara, a Sakyan township.

Then the venerable Ananda came to the Exalted One, saluted Him, and sat down at one side. So seated, the venerable Ananda said this:

‘The half of the holy life, Lord, it is the friendship with what is lovely, association with what is lovely, intimacy with what is lovely.’

‘Say not so, Ananda! Say not so, Ananda! It is the whole, not the half of the holy life. Of a brother so blessed with fellowship with what is lovely we may expect this, – that he will develop the Noble Eightfold Path, that he will make much of the Noble Eightfold Path.

And how, Ananda, does a brother so blessed develop and make much of the Noble Eightfold Path?

Herein, Ananda, he develops right view, which is based on detachment, on passionlessness, on cessation ; which is concerned with readiness for giving up. He develops right aim, which is so based and concerned : likewise right speech, right action, right living, right effort, right mindfulness, and right contemplation, which is based on detachment, on passionlessness, on cessation ; which is concerned with readiness for giving up.

That, Ananda, is how a brother blessed with friendship with what is lovely, association with what is lovely, intimacy with what is lovely, develops and makes much of the Noble Eightfold Path.

This is the Method, Ananda, by which you are to understand how the whole of this holy life consists in fellowship, association, intimacy with what is lovely. Truly, Ananda, beings liable to rebirth are liberated from rebirth ; beings liable to decay, liable to death, liable to grief, woe, lamentation, and despair are liberated therefrom because of my fellowship with what is lovely.

By the Method, Ananda, you are to understand that the whole of the holy life consists in fellowship with what is lovely, in association with what is lovely, in intimacy with what is lovely.’

(Excerpt from the Pali Canon: S.N. v. 2)