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!

Speech from the MDA-ALS Gala “A Night at the Races” 2012

Thank you.

It is a pleasure for me to be invited back for a second year in a row. I want to speak to about my ALS and what your support has meant to furthering the work of the MDA.

I’d first like to thank all of you for your support and generous commitment to finding a cure for neuromuscular disease.

Some of you may have noticed there is something a little different about me.
Last year when I spoke at the Gala, I was standing.

This year I am not.

You might think this would be a setback to my goal of seeing my seven year old daughter graduate from high school.

But it isn’t.

If that was my only reason to keep going-to keep existing, then I would be missing the big picture. It is an important goal and a good reason to exist-but it is not the only one.

If I only concentrated on living one more year, I would have missed that year’s worth of important celebrations, birthdays, holidays.
I would have missed my older daughter’s first prom.

I would have missed the simple joy of going out to dinner.
Or having a dinner prepared for me by another family.

Or the scent of lilacs as they bloomed almost a month before they were supposed to because of the unusually warm winter we had.

The finality of ALS has taught me to appreciate the quality of my life as well as the distant goal I have set for me and my daughter.

In a similar way, the goal of the MDA to find a cure for neuromuscular disease is a distant one. It is an important one and a good reason to exist-but it is not the only one.

The MDA’s goal is also to provide for the more immediate needs of myself and the thousands of others that live with this illness.

They provide equipment, information, and access to exceptional care professionals.
They do it with ease and compassion.

They help me maintain an independent quality of life. By being a constant resource of care and support, the MDA has helped me to achieve both of my goals:
to live another year-and to have enjoyed living in it.

And so do you. Your generosity and financial support allows me to continue counting down the years as well as celebrate the special moments within them.

And for that I am so grateful.

Thank you.

Joy giving speech on stage

Thank You, Nicholas Accorso, for My New Van

It was kismet that brought me to know Nicholas Accorso.

My husband & I had been looking off & on for a van months before our huge yard sale. It just happened one day he looked on the ESL Bank Swap Sheet:

Wheelchair accessible 2006 Grand Caravan $16,500. 44k mi. Start Date: 09/23/2011 End Date: 10/23/2011
2006 Dodge Grand Caravan. 44,000 miles. This is a lowered, Wheelchair accessible van. It can seat 6 including the Wheelchair passenger. New Air conditioning, new muffler and exhaust pipes. Tires one year old. The Wheelchair ramp is manual and is on the passenger side of the car. The mechanics and body are in good shape.

  

The price Mr. Accorso gave was more in our budget range than any other vans we’d come across!

Naturally, my husband was leaving for a week-long business trip, so we asked if they could hold it, till we could come see it. We sent a family friend to check it out and it seemed like a great fit! we still wanted to se it for ourselves.

Ironically, my husband & I always said we were NEVER going to buy a minivan, EVER. We were diehard Honda sedan fans. Ah… youth. Well, life changes in ways you’d never expect.

We met the Accorsos the next weekend. They were friendly and helpful, and really wanted to get rid of this van. Which we were really wanting to buy it! As we got to know them, it turns out they just lost their son to MD.

Nicholas Accorso was diagnosed with Muscular Dystrophy when he was 10 years old. He appeared on the MDA Telethon when he was about 11 and met Gabe Dalmuth for the first time. He passed away August 18th, 2011, 19 years old. Nicholas was a friendly, curious person who was adventurous and loved baseball. He also loved to travel. He explored the world right up to the end, traveling to South Dakota on his last family trip to use a Federal Parks Pass. Despite his condition, he was very accepting of his illness and did not let it get the best of him. He also had Autism, making his outward, social demeanor all that more special.

Here I am, back from near death myself (my embolism), the MDA Personal Achievement Recipient, and I am receiving the van that took this boy on his travels. All of us had shared some tears.

I know that Nicholas’ family misses him, but I am very grateful. I hope I can make many memories happen with my family in this van.

P.S. Thank you to everyone who helped me to raise money. It has helped us put a dent in the purchase. Now I can go places with my motorized wheelchair – I feel so free!

ACOSTA / MDA Golf Tournament Speech

(Imagine the room filled with fruits and vegetables.)

Good Evening!

 

On behalf of the Rochester & Buffalo MDA, I’m honored to speak with you – employees and friends of ACOSTA. Your generous, national support to find a cure for Muscular Dystrophy, has totaled over $75 million dollars, since the inception of your Aisles of Smiles Campaign in 1985.

 

The Aisles of Smiles has, at its roots, a simple idea born out of a father’s desire to raise funding and awareness about his son’s disease.

From something simple come great things.

I’m so grateful that many of you came out today to participate in this year’s golf tournament at Cobblestone. Over 130 participants have raised more than $125,000 for the Buffalo and Rochester area.

 

What I’d like to do is to make a connection between the dollars you have raised, to the people affected by neurological diseases.

 

Illness affects everyone around them – children and adults alike.

 

In my case, I was diagnosed with ALS in April 2010 – and I can assure you, my disease affects my friends, my family, and especially, my six year old daughter.

Since ALS is a progressive illness, I need constant monitoring from a variety of doctors and specialists, as they check and maintain what nerve health I still have.

 

I know it sounds daunting – there is still no cure for ALS, however, the treatment is constantly changing and improving. A real breakthrough for treating ALS can be seen at the University of Rochester Medical Center.

An ALS clinic is held every month.  The structure of the clinic is an amazingly simple and humane concept: have all of the specialists meet in one place with me, rather than me go to them. In a few hours, my Neurological Team has an accurate snapshot of my condition.

It is a collaborative approach to medicine. And it’s a real convenience for me.

 

From something simple come great things.

Collecting and maintaining the best and the brightest for my Team isn’t cheap. Neither is the support they need to stay on top of this disease. The financial support you provide, is making a difference to finding a cure – and to those affected with ALS, like me.

 

Financial support has the effect of providing care to my family as well…

Recently, I attended another MDA event.  I was able to personally thank a generous donor for a grant to install a stair lift in my home. It’s a miracle device that has given me back my independence and it also gave me back access to my home.

But most importantly, it gave me an insight into my daughter’s view of this illness.

After I thanked her, my 6 year old went up to her and said:

 

“Thank you for my mommy’s chair. Now she can float upstairs like an angel!”

 

From something simple come great things:

The healing power of your time and support really do make a difference.

 

They give us a chance to hold onto our dignity and our sense of normalcy.

We can be active family members – and to witness them at their best.

In the case of my daughter, her simple observation was not of sadness or pity, but of happiness and gratitude.

 

My prognosis has been lengthened from months to years. With this extra time, the MDA, and the continuing support of all of you, I will succeed in my simple goal:

I will see my six year old daughter graduate from high school.

Thank you.

 

Speech from the MDA-ALS Gala “A Night at the Races” 2011

Hello.

My name is Joy Parker and I’m grateful to have been asked to speak with you tonight.

I must tell you what a wonderful feeling it is to see so many people here tonight united in the search to find a cure for ALS.

I was diagnosed with ALS last April. For years I had felt my body grow weaker, and for years I all I wanted was my doctor to tell me what was wrong. One of the first things I learned when I thought I may have a neurological disease is – it’s not so simple to diagnose.

There isn’t a single test for it.

It requires months of visiting different specialists and doctors who begin eliminating all of the other disease you don’t have, until they run out of options-

and finally the only diagnosis left is ALS.

After almost two years of testing and observing, when my neurologist said those three letters, it was like a punch in the stomach.

Each day I wake up and ask myself, “What did I lose today? Can I still walk unassisted? Will I be too tired to work?” The hardest thing is when Nicole, my 5-year-old daughter, asks me, “Mom, when will you get better”?

ALS is a very complicated disease. It can affect any part of me that has a muscle, as it attacks the nerve connections to my muscles. I am in no pain, but I am tired.

I feel…heavy.

I will admit, it is a little weird that I cannot assume that the things I do today will be there for me tomorrow.

I can let it overwhelm me, or I can take it on.

If I can’t choose to have this illness, I can choose to take it on.

And that’s what I’m doing – with your help.

Since ALS is an ever-progressing illness, I need constant monitoring from a variety of doctors and specialists as they monitor and maintain what nerve health I still have.

I know it sounds daunting that there is still no cure for ALS, however, the treatment is constantly changing and improving. A real breakthrough for treating ALS can be seen at the University of Rochester Medical Center.

An ALS clinic is held every month. The structure of the clinic is an amazingly simple and humane concept: have all of these specialists meet in one place with me, rather than me go to them. In a few hours, my Neurological Team has an accurate snapshot of my condition.

It is a collaborative approach to medicine.

And it is a real convenience for me.

But collecting and maintaining the best and the brightest for my Team isn’t cheap. Neither is the support they need to stay on top of this disease. But I am here to tell you tonight the financial support you provide is making a difference to finding a cure-and to those affected with ALS, like me.

When I was diagnosed with ALS, I was immediately put on the breakthrough drug called Rilutek. Although each month’s prescription is over $1,000, its results are priceless. Because of this drug, I am able to still walk with assistance and I am keeping the symptoms of ALS at bay.

It is one of the reasons I can stand before you tonight.

My prognosis has been lengthened from months to years. And that’s a good thing because with medication, the support of the MDA, and the continuing support of all of you, I will succeed in my goal: I will see my five year old daughter graduate from high school.

Thank you for all of your efforts and continuing to support research for finding a cure for ALS.

Does it mean I’m not a feminist if I love pink?

The other day, my husband told me about a story on NPR about how princesses are bad for girls.

My 5 year old is super smart, artistic, musical AND loves science experiments. She also has been head over heels for Disney Princesses since she was 2! Now isn’t this a lot like the old argument about Barbie being a bad role model?

I remember pretending to be a princess when I was little. Every time I got in trouble, I would hope that someday my real parents would come get me and take me back home to the castle! I loved pink. Later on, my friends and I played with Barbies, and frankly, we never thought anything about Barbie’s freakishly big boobs because our dolls were too busy playing strip poker, getting divorces or becoming rock stars.

It seems to me that being a feminist and liking traditional girl toys/ideas is like being a lipstick lesbian these days. I’m raising 2 daughters. They like pink. Not all girls like pink… I liked pink as a girl… I still like it.

I know my 5 yr old is chomping at the bit to wear makeup and nail polish, but she understands that Mommy says not until you’re older. If some moms took the time to explain commercials and marketing, as well as we have in our house, then perhaps the manufacturing giants won’t be cramming pink down everyone’s throats. Parents are the ones pushing the kids to be older. I don’t plan to have a spa party for my Kindergardener, but the 10th grader is a different story!

Everything in moderation people. Did we get the full princess treatment at Disney World? Hell yeah! It’s a once in a lifetime chance. Treating little girls as if they are princesses, on an everyday basis, is not moderation. Not teaching your daughters about commercialism and consumerism at an early age, is NOT good parenting in our current society.

On the flip side, I enjoy taking care of myself by going to a salon or a spa. I like to be pampered. And what woman on her wedding day doesn’t want to be a princess?! Ok I wanted to be a rock star. But seriously, take back the blame and put it on the parents who can not stand up to their kids!

Moderation, folks –  and education, will keep your girls as girls and to grow into independent thinking women.

Images of Farmwork Fundraising Art Exhibit

Tonight! Come join us!

Muddy Waters Coffee House
53 Main Street
Geneseo, NY

I haven’t exhibited work since the day my 5 year old was born!

I have 4 matted & framed color prints (from FILM no less!): 2 are of grapes in the fall, one is called Mr. Scarecrow (he’s sitting next to a pumpkin) & the last is Key Limes from Key West. (None of these are on my website currently.)

Hopefully, I will be able to tweet from there. A coffee house should by today’s standards have free wifi, right?

Here’s some shots from the night:

Joy Parker in front of 4 Simple Joy's Photos

My friends Lynne & Gretchen have pieces in this same shot. Lynne’s is behind me (sorry!) and Gretchen’s are the 2 on the top left.

Art Opening with The Gang

 

I wanna be pretty

That’s it. As my body slowly gives away…I want to remain as beautiful as I can. I want to keep getting my brows done, my legs waxed and my nails done. Maybe I’ll even have someone else dye my hair! I want to have nice clothes and shoes. I want to go in STYLE! Even though I don’t wear much make up now, I want someone to apply it every day when I no longer can. My Grandma Parker looked gorgeous in the nursing home. I want to wear all my jewelry — earrings, necklaces, bracelets & rings! Oh yeah & my sunglasses – new-style wayfarers and a pair of MDG!

Bucket List

I need to start one. I’ve been so busy with my job and my family, that I just didn’t think about what I’d want to do “someday.”  I guess this is something else in the terminal illness process. What do I want to do before I die? Or before I am unable to function or enjoy it? I don’t know! I have just recently come up with some… travel, I guess is a big one, visiting with my good friends before they start to pity me, do fun things with Nicole, teach Kate how to be a lady (yeah me of all people!).

So I’d like to hear some suggestions… what’s on your “Bucket List?” What do you want to see and do before you kick the bucket? What is the coolest thing or place to explore? Where’s the best food on the planet?

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.