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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Honest Delusions

The title of my post comes from an amazing sermon I heard at church last week from a retired newspaper reporter. At the FIrst Unitarian Church of Rochester, we have taken on a “Provocateur-in-Residence,” named Mark Hare, formerly of the Rochester Democrat & Chronicle. Hare’s first sermon was “The Honest Person’s Honest (Even Noble) Delusions” and just blew me away. (Listen here: streaming | download ) He talked about how all people put up delusions about all sorts of things. Putting self imposed limits on ourselves that sometimes we don’t even know we’re doing, until someone else points it out. For example, telling yourself you’re too old or too busy to go back to school or to take a new job, then someone else tells you that, well No in fact you can do it because of X, Y & Z. Then you think – well yeah, of course I could do that!

The part that astonished ME was when Hare started talking about his friend with cancer, near the end of his talk. Mike & I just kept looking at each other because we knew how it felt to “deal” with a terminal illness. This friend with terminal cancer, was told he would have 6 months to live. He just kept living his life. He made plans to play music and travel and kept living. You would think he never remembered he was dying. But it was not true. As Hare puts it, he had that stuff in the “closet” until he could deal with it. He didn’t live his life as a dying person, he lived it as a living person, and every so often he’d check in that “closet.”

Well the night before this we were watching Doctor Who’s Episode “Night Terrors,” where a frightened “little boy” kept all the scary things in the cupboard! (cupboard=closet) And since he was actually an alien being, they were really going into the cupboard. Even little kids can understand putting scary stuff away from sight!

I can relate to both these stories. Yes I have ALS, with no cure, that continually progresses, but I have chosen to live my life as a person who gets up, gets dressed and goes to work. I shove that horrible news I have that I will someday not be able to do anything back into the closet until I can deal. Occasionally, I do take it out and remind myself to enjoy each day that I have as it comes. I don’t think our human minds can handle knowing that sickness will wear you down and death is coming. That dark place will freak you out.

The best part was sharing this service with Mike, who gladly, already knew I was not acting in self denial but in a place that moves me forward in life. Which I guess keeps my body motivated to live as well.

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 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!

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.

Research Irony

I’ve always loved irony. It’s just one of those things about me.

These days I am both planning my vacation to Disney
AND my demise.

I must say planning for my eventual death seems much easier! Especially after having read the fiction novel The Household Guide to Dying. It’s a fiction piece but it’s really amazing how this author and her character Delia got in my head. For someone who was not terminally ill (the author) she sure was able to relate her character to the way I’m feeling!

It’s got me thinking about all the things I need to settle up before my slow degenerating death. Aside from Disney and the other trips I’d like to take, I still have to take care of the boring details of death and dying. Things like music and passages for my funeral, if and when I want life support and feeding tubes, donating my body to science, organ donation, cremation, creating a will, guardianship, passwords and usernames to important accounts…. List goes on
and on.

Then there’s things I want to give to friends and family beforehand. Which means going through my crap. There’s no good way to ask people what of mine they’d like before I die. Man, I’m exhausted just writing all this!

I need a vacation! Oh wait…

I’m terminal in the terminal

I have been traveling. Since I was diagnosed with ALS, I’ve been to NYC – twice, a “local” weekend retreat, and my big trip alone to Seattle and Portland.

What a hot day and night!

My mother-in-law Dot & me in the City!

They were all fabulous – and exhausting! I didn’t bring a camera for all of them. Sometimes it’s nice to just go experience travel and new places. Thankfully, I do have some cell phone pictures although they look like they were shot with a pinhole camera.

Joy on the deck of the Space Needle above Seattle, WA

Pike's Place Market in Seattle, WA

Joy Eats Voodoo doughnut in Portland, OR

Clearly, I had a great time. I admit, however, that I was terrified to travel by myself now that I am disabled or handicapped or whatever the damn term is. I kept stalling to get my tickets for Seattle because I just didn’t know how I would do it. For the most part people were watching out for me. It wasn’t always the airline staff. Chicago airport was not very speedy in getting me a wheelchair to my connecting flight on the way out and on the way back. The flight attendants were getting pissed off at these guys! I only had my walker broken on the way there but not on the way back. I still need to deal with the airlines for that. Apparently they charged me in Rochester a baggage fee when it should have been free!  Oh, and apparently if you take your handicap parking permit to Seattle, you can park anywhere for free! Is it like that everywhere? So much to learn! I was quite wiped out after all these trips so hopefully. I’ll be able to recover from the next one.

Checked off these from my Bucket List!

2. Visit my friend Michael on the West Coast.

10. Be a tourist in NYC. – I went to see a couple great plays on a hilarious road trip to NYC! And I finally saw the Statue of Liberty. She is awesome! Just an incredible architectural statue. Thanks, Dot for that gift!

Next up — December — Disney World!