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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Speech from the MDA-ALS Gala “A Night at the Races” 2013

Hello, I’m Joy Parker.

I’m honored to have been invited to speak with you at the Gala. This is the third time I’ve done this, and even though giving a speech now takes a lot out of me, I am glad to say—I can still speak! As a continuing survivor of ALS, I’m asked, and more often its my husband who gets asked, how long I can expect to live with this disease

The average number is 5 years after diagnosis. I was diagnosed in April of 2010.

ALS is difficult to diagnose. There isn’t a single test for it.

I spent months of visiting different doctors and specialists. The doctors eliminated all of the disease I didn’t have, and to paraphrase Sherlock Holmes, when you eliminate all the possibilities, whatever’s left is the truth. And the truth was, I had ALS.

Research into the behavior of ALS is giving our community hope not just for a cure, but for a more meaningful way to predict how ALS might affect us. Researchers in Ireland have found the better your cognitive function is, the better your chances for living longer with ALS. I guess this might be why Steven Hawking, the smartest man on the planet, has been able to live with ALS for over 50 years!!

I want to thank you for your continued support of research, not only to find a cure for ALS, but to support findings like these that help give families a better sense of how much time they have as they live with this disease. This is the third time I’ve spoken at this event. The first time I was able to stand at the podium. Last year I was in a wheelchair. This year I’m in this baby, thanks to the MDA.

I continue to work, and be a mom. My disease has progressed, but my goals have remained the same. I still plan on seeing my youngest daughter graduate from High School.

Thank you.

Speech given at the 2012 MDA Boot Camp

Hello and Welcome to the 2012 MDA Boot Camp for Upstate New York Firefighters. I am Joy Parker, this year’s MDA Personal Achievement Award Winner, and I am honored to be the first to welcome you to this incredibly important event.

In August of 2011, three months after I was first asked to speak at this event, I suffered a pulmonary embolism. A blood clot became lodged in my aorta. These clots are an unfortunate side effect of not being as mobile as I used to be.

It began simply as a shortness of breath and feeling a little weak. Dizzy. I was at work at the time and my quick thinking co-workers called 911. And within 2 minutes, a whole truckload of firefighters were around my little cubicle saving my life.

Now, I’m here today to share with you something most of you never get to hear:
the exact thoughts of a person as they go through such a near-death experience.
And those honest thoughts in my head may surprise you.
What was really on my mind at the time was:

“Why is it all the good looking firefighters always arrive when I’m at my worst?”

Which brings me to today. I am so grateful to be with the finest, (and best looking) firefighters in Upstate New York-without the drama of not being at my best! I am a testament to the quick-actions of Engine 13, Battalion 2 in Rochester, NY and for allowing a little humor into an otherwise dark moment in my life.

I am here to thank you for your support of the MDA Boot Drive campaign, and to share with you how important they are to someone like me.

I have ALS, otherwise known as Lou Gehrig’s Disease. I am in a rare group – a woman under the age of 45. For me, that can be a lonely place to be sometimes. In this area, there is only one other woman my age with ALS. Although we “talk” now and again through email, we don’t connect face-to-face. She uses a ventilator and cannot speak. It can be daunting and scary at times to have a terminal illness like ALS and feel so isolated.

Those are the times when it would seem easiest to give up.

Just like, I imagine, how it must feel sometimes when you collect for the MDA. The weather does not always co-operate. Neither do the drivers as they dash by, preoccupied with their own lives. And many who do stop, no longer have the spare change they used to in this age of debit cards and on-line banking.

All I know for sure is as long as I am here, I can help.

And if I can help from this chair, then certainly so do you with your boots.

When you raise money, in any amount, you aren’t just helping to buy the expensive, durable goods, or medicines. You are buying someone like me the most precious gift of all – time.

The spare change you collect when spent locally, helps to pay for an MDA Clinic at the University of Rochester Medical Center.

There, I can meet with all kinds of specialists to help me with my treatment.

Neurologists, Physical Therapists, Rehabilitation Nurses, Speech and Mobility Professionals.

The clinic centralizes all of these professionals into one location for me rather than me having to travel all over to see them.

That saves me time.

That also gives me time.

ALS is not a painful disease, but it is an exhausting one. So any energy I can conserve allows me to concentrate on the important things.

Time to spend with my family – and with you here tonight.

The funds from the Boot Drive buys me time.

An hour with a caregiver.

A few minutes with a specialist.

Or a shared moment with another ALS patient.

Your efforts are incredibly important.

Your Boot Drives creates awareness.

Remember that when you collect those dollars – and cents, you are literally buying me, and the thousands of others who suffer with a neuromuscular disease: time.

Something you can’t put a price on.

Thank you.

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Speech Given to the Ridge Road Fire District

This speech was given last night to inspire the Firefighters for their Annual Boot Drive on February 1, 2012.

Thank you for allowing me to speak with you tonight. I am here to thank you for your support of the MDA Boot Drive campaign, and to share with you how important they are to someone like me.

I have ALS, otherwise known as Lou Gehrig’s Disease. I am in a rare group – a woman under the age of 45. For me, that can be a lonely place to be sometimes. In this area, there is only one other woman my age with ALS. Although we “talk” now and again through email, we don’t connect face-to-face. She uses a ventilator and cannot speak. It can be daunting and scary at times to have a terminal illness like ALS and feel so isolated.

Those are the times when it would seem easiest to give up.

Just like, I imagine, how it must feel sometimes when you collect for the MDA. The weather does not always co-operate. Neither do the drivers as they dash by, preoccupied with their own lives. And many who do stop, no longer have the spare change they used to in this age of debit cards and on-line banking.

I imagine those can be the times when it would seem easiest to give up.

Or …at the end of the Drive, when the totals might not have met your goals and you feel that what was done was only “good enough”.

Maybe allow yourself to question “does it really matter”? It can be hard to imagine when the cost to bring a drug or treatment from the labs to me can run 1.8 billion dollars, if it matters’ whether you achieved your goals or came close enough?

With no immediate cause or cure for neuromuscular diseases like ALS or Muscular Dystrophy “What does it matter”?

That is a fair question.

I ask myself that every day.

I have this terminal illness, what does it matter if I stick around?

I know where this is all going – right?

Or do I? Do I really know? Of course not.

All I know for sure is as long as I am here, I can help.

And if I can help from this chair, then certainly so do you with your boots.

When you raise money, in any amount, you aren’t just helping to buy the expensive, durable goods, or medicines. You are buying someone like me the most precious gift of all – time.

The spare change you collect when spent locally, helps to pay for an MDA Clinic at the University of Rochester Medical Center.

There, I can meet with all kinds of specialists to help me with my treatment.

Neurologists, Physical Therapists, Rehabilitation Nurses, Speech and Mobility Professionals.

And people like Sally Kramer, who solves problems for me in so many ways.

The clinic centralizes all of these professionals into one location for me rather than me having to travel all over to see them.

That saves me time.

That also gives me time.

ALS is not a painful disease, but it is an exhausting one. So any energy I can conserve allows me to concentrate on the important things.

Time to spend with my family – and with you here tonight.

The funds from the Boot Drive buys me time.

An hour with a caregiver.

A few minutes with a specialist.

Or a shared moment with another ALS patient.

Your efforts are incredibly important.

Your Boot Drives creates awareness.

Remember that when you collect those dollars – and cents, you are literally buying me, and the thousands of others who suffer with a neuromuscular disease: time.

Something you can’t put a price on.

Thank you.

 

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!

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.

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.

Speech from MDA IAFF Boot Camp Kick Off

Hello.

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

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. But when all the tests were done, and my doctor 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”?

People have told me how brave I am to be facing ALS at such a young age. But I will tell you a secret: my bravery comes from those around me. My family, my doctors, my friends…. and you.

Because seriously, you can’t find anyone braver than New York Firefighters.

While there are many people out there raising money for MDA and ALS, only Firefighters are willing to literally stand in traffic to collect it.

You might not know this, but Firefighters have been working on a cure for ALS since before I was born. The Fireman’s Boot Drive has been around since the mid 1950’s, and is one of the longest running fund drives for neuromuscular diseases like muscular dystrophy and ALS.

Your hard work here today will have real results tomorrow. When I was diagnosed with ALS, I was immediately put on the breakthrough drug called Rilutek. Each month’s prescription is over $1,000, but 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.

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 fight against ALS.