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” 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.

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 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.

 

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.

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!

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?