Category Archives: death

Terminal Freedom by a Madonna Wannabe

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…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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I need a Hero

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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

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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

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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

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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

Speech Given to the Ridge Road Fire District

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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

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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!

Playing Catch Up

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So… my summer was pretty busy.. and then ended abruptly.

I had what I THOUGHT was a panic attack at work. Turns out I had a HUGE (substantial) pulmonary emboli. That is PLURAL for embolism. And it was not related to the ALS.

Needless to say, I’ve been out of commission since then.

I missed several MDA events, including the telethon. Basically I’m recovering slowly, but day-by-day getting better. I’m doing physical therapy and I’m able to work from home. I’m trying to get better so that I can return to the office.

One of the great things, aside from my wheelchair accessable van, is meeting some very kind people. They are really helping me to get better. I am so grateful!

ACOSTA / MDA Golf Tournament Speech

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(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.