Ode to … me?!

WOW. SO many amazing people and SO much to say. Right now a HUGE

 

THANK YOU

 

until I can wrap my brain around this show of support from friends, family & strangers.

 

– Joy

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!

Thank You for my New Bathroom

Garage Sale July 2013

Garage Sale July 2013

It’s been months since the amazing Garage Sale for Joy, and we are about to move our bed downstairs, right across from the newly remodeled bathroom.

Before/After BathCompleted constructionNew sink

We couldn’t have done it without the help from our friends, family and co-workers! And complete strangers!

Although I cashed out my retirement money, it was not enough to cover the costs of the entire renovation (which also included moving the door to the garage over and building a small nook for coats). Thanks to both the MDA Rochester office and the ALSA Upstate NY Chapter, we were able to secure some grants.

Thank you to:

ALS Guardian Angels

Hearts for ALS Foundation

The Beamer Hughes Foundation

Between the amazing turnout at the garage sale, my own money and the above grants, we more than made our budget!

Any “leftover” monies were split between expenses incurred from the garage sale with enough left over so we can give back to the ALS community. As a Unitarian Universalist, giving back to the community that supports you is a basic rule. I have donated $500 to the Walk to Defeat ALS® (ALSA) and plan to donate another $500 to MDA Rochester’s Walk in March 2014.

Garage Sale for Joy!

my new van

Two years ago, you may recall me having a Yard Sale to buy a van. We got friends, co-workers, neighbors AND strangers to donate things to sell. And still others came to BUY all this great stuff! In the end, we did not raise all the money needed to buy a used wheelchair van, but it sure helped! We had a whole media blitz too!

The van has really changed my life and has allowed me to get around especially now that I am wheelchair bound.

This spring we decided it’s time to get the downstairs ready for me to live in. I have ALS. It’s harder for me to sit up now without flopping over. I don’t have any use of my legs and can’t stand on my own. Although I have a stairlift, I don’t feel as safe as I once did riding it up stairs. Also, at this point my husband is the only person that can lift me. Once the bathroom downstairs is completed, with ADA compliant fixtures and a walk in shower, I still need to install a lift and create a bedroom in our family room for me to sleep. Having me on one floor and the lift, will allow others to help take care of me when my husband can not or has to work.

I have taken out money from my retirement to help with the costs. It’s not even half of it. I still work so I couldn’t get all the money out. I hope to get some grants to help as well. My dear friends decided to help too. Here’s a recent article about my friend and co-worker Gretchen!

They have created and planned another amazing household garage sale for this month! There is stuff coming to the house in droves! We even have a donated storage pod from Gary LaPietra, General Manager & COO, at Clark Moving & Storage Inc!

Clark Moving & Storage

Clark Moving & Storage

And thank you to Crystal Rock! They are donating bottle water for the event!

And thank you to Crystal Rock! They are donating bottle water for the event!

1000988_738517184129_339232500_n

We will be raffling off a few items including this beautiful basket of goodies donated by WXXI Public Broadcasting & The Little Theatre. The basket includes: 3 seasons of Downton Abbey, Restoring a Masterpiece (Frank Lloyd Wright House documentary), a Garth Fagan documentary, Dr. Wayne Dryer book, Rick Steve’s travel tips, tickets to the Little, mugs for the Little and WXXI, a Cookie Monster doll, a recording of bands that played at the Little, a PBS Kids backpack, and a WXXI hat and Frisbee.

More community love! Big shout out to Hegedorns Market in Webster for donating hotdogs for the Garage Sale! We will have food for sale on Saturday, July 20th!

More community love! Big shout out to Hegedorns Market in Webster for donating hotdogs for the Garage Sale! We will have food for sale on Saturday, July 20th!

The AWESOME "consider it done" team at AVALON DOCUMENT SERVICES donated boxes for our raffle entries AND sent us complementary cookies with them to boot!

The AWESOME “consider it done” team at AVALON DOCUMENT SERVICES donated boxes for our raffle entries AND sent us complementary cookies with them to boot!

More details on the sale

More details to help

Here is a llink for those who want to help but don’t have stuff to donate! Donate here

I am so touched by the love and spirit of the people in and around my life!

Channel 8 visited

All clothing and cloth items were donated to a local church – Church of the Resurrection in Fairport.

All the items that did not sell were donated to the VOA.

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.

I need a Hero

Of course, if you are an 80s kid, you are thinking of this song right about now. Watch Video

Heroism. What is it?

What makes A hero ?
Is it someone who leaps tall buildings in a single bound?
Or is a hero a person that knows the right thing to do, or say?

My daughter says her dad is her hero.

She defines a hero as someone who helps other people. Do Armed Forces Heroes give life for country? Or maybe they are heroes for joining and showing up.

Being killed or dying unexpectedly, becomes more of a criminal act. I was quite inspired to write about this topic after Mark Hare, spoke at First Unitarian Church last month. His service is listed on his blog.

It’s in many of us – not born on a distant planet. It’s part of who someone is.

People who are heroes don’t think of themselves as heroes but its based on the decisions they made in their lives.

Everyday heroes – the Webster firefighters

I was one of the many in my community to be shocked & horrified by the actions of a lone gunman on Christmas Eve 2012. Read Article

To think about the men and women I have given speeches to over the past two years at the Fill the Boot Drives … I was speechless. Firemen are very much a big part of fundraising for the MDA.

These men and women who run into buildings to rescue people and animals are true heroes. Not because of their bravery but because of their strength of character.

You will be missed.

Prayers and Support for Webster Firefighters

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