ACOSTA / MDA Golf Tournament Speech

(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.

 

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Yard Sale

PERINTON/FAIRPORT:

Multi-Family Sale/Benefit of Joy – ALS – help get a van.

June 9th-11th 9-3, Sat half price/bag sale

10 Sedgmoor Lane off Ayrault
Fairport, NY

Furniture, Mat Cutter, picture frames, adult/children’s books, toys, antiques, collectibles, holiday\ craft supplies, housewares, bikes, clothing, TV, VCR, VHS, DVD, pet supplies.
_________________________________________________________

My Name is Joy Parker. I am 40 years old. I have a great job, a nice house & a fantastic family. I also have an incurable & fatal disease called ALS (Lou Gehrig’s Disease).

What is ALS? read more: http://www.als-mda.org/

I need a van to get around with my scooter.

We started by cleaning out our house to raise money for it. Since then, I’ve had more than 10 families add items to the sale! Thank you all!

We got it!!!!

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.

Busy As A Bee!

I’ve just started getting back into creating art again. I don’t know if it’s Spring Fever or that I’m reading old American poetry (The Mentor Book of Major American Poets), or if Nicole has inspired me with her amazing work.

My next show coming up is at the First Unitarian Church in the Williams Gallery. It’s a Church Member show so I only have 1 photo. It’s my gorgeous Windows with Baskets shot. The show runs from April 8 to May 16th.

This super cool show is an anonymous one for the Rochester Contemporary Art Center called 6×6. I jumped into using acrylics this time! One I’ve called Summertime and the other is called ALS. I had a great time & my youngest daughter made something as well! This show runs June 4 until July 10 – but they will have all the artwork on the website for people to purchase for $20 a piece. Proceeds go towards the art center.

If you’ve been following my tweets you’ll see that I’m trying to do a little poetry for poetry month. It was something I thought about doing for a while, but then we needed something for our Poetry Month page at my real job & I thought it might be fun to get people engaged, so far, not so much. Oh well! I encourage everyone to write a few words on Twitter and use #wxxipoems to see what we can come up with!

The world has gone crazy (or how governments get overthrown)

In my “day job” I’ve been spending a lot of time on Tweetdeck watching all our Twitter accounts. I should say that I’ve really just been watching the world revolutionize! Of course most of it is coming from NPR’s Andy Carvin! In the course of my workday, I’m seeing average people around the world using their phones – overthrowing regimes! Mixed in with tweets from The Onion, Duran Duran & Alyssa Milano, were these retweets from real people, talking about protesting to change their government. First it was Egypt, then Libya… Real humans talking about what is going on there at that very moment… Women & children being woken up in the wee hours with tear gas and rubber bullets!

Do these regimes not understand that this life is one of a global consciousness?

I wanna be pretty

That’s it. As my body slowly gives away…I want to remain as beautiful as I can. I want to keep getting my brows done, my legs waxed and my nails done. Maybe I’ll even have someone else dye my hair! I want to have nice clothes and shoes. I want to go in STYLE! Even though I don’t wear much make up now, I want someone to apply it every day when I no longer can. My Grandma Parker looked gorgeous in the nursing home. I want to wear all my jewelry — earrings, necklaces, bracelets & rings! Oh yeah & my sunglasses – new-style wayfarers and a pair of MDG!

My First Buddhist Retreat – Day 3: 7-25-10

Sunday

Ugh — today is sooo sluggish. All I want is sleep! My roomies are early birds. They were up BEFORE the bell. (Bell rings at 6am – this time I actually heard the bell as I was already awake.)

We broke the rules by whispering in the kitchen. It’s a HUGE kitchen! We don’t know how all the things work in there!

It’s another rainy day. Which is fine by me. Yesterday was hot for that outdoor walking meditation. I’m going to skip it today. I kept falling asleep during meditation afterwards.

Now it’s sunny again. I got my stuff mostly packed. I planned on doing that at the 2pm walking meditation, but I want to get it all together while I’m still able to move around.

Almost time to head back up for teaching/meditation.

One thing I learned from last night, for sure, is Anam is just a guy. That’s it. Which is really all he is saying. “Hey, I’m just a guy – you can do this too!” That, to me, is more authentic than most of these folks here could ever dream of being.

Finished lunch — Pizza! O my god! These people know how to cook! Everything is just so delicious. I wish they could come home & cook all my meals!

This mornings teachings were spot on. He practically named me as someone who profoundly effected him this weekend! Someone who was dying told him they want to live the rest of their lives with awareness. Unless one of the other 3 people were dying, who else can it be? I made sure to listen & not fall asleep.

I just got yelled at for turning the lights on while I snapped a pic on my phone.

My space at Stillwood 1

My space at Stillwood 2

 

THESE WERE TAKEN WITH THE LIGHTS OFF

Well, gees, didn’t hear me complain when you guys woke me up so early. OK so clearly I have some more work to do here. Today is my last day.

This evening we’re having people “Take Refuge.” I think I will do it.

Look up book: Taming the Tiger Within by Thich Nat Hanh — great quotes about death – would like for funeral.

I’m gonna do it! I’m gonna vow to be one with the light  — oh wait — I don’t think I have that correct.  I’m taking refuge. Dedicating myself to moving ahead to find awareness & pass it on.

I did it! I vowed to practice non-violence, to be true to the dharma & commit to the sangha. Or… you should just probably read this Refuge in the Three Jewels. I cried during the ceremony. I opened my heart to let it all in.

This is the last night! I hope I get time to actually speak to some of these people. (Mostly ladies.)

I can’t stop coughing now. Great. The head lama (Ani Trime) just handed me a cough drop. It’s cherry. Bleh. I didn’t know those robes had pockets!

I finally asked about the Prayer Wheel! What a nice idea! Thanks, Larry for the talk!

Well that was pretty much it for my journal (Thanks, Lynne!) After the last meditation session we were all able to talk again so us weekenders could say our goodbyes. It was funny to be talking again and Wendi & I could finally hang out and chat. She stayed the whole week. Maybe next time I could too.

Everyone was so incredibly helpful. Sue brought my bags to my car. Larry had wrapped a gift for me to take back home. It was a beautiful Tibetan mat with with, I think, the silver plate and scissors used in the ceremony. Wendi walked me to my car. So nice and peaceful.

Of course then I made a wrong turn (it was dark when I left) and was lost for 30 mins in the dark forest. I stuck it together and did not panic. Finally I saw NEWARK! I knew I was safe. Who knew Newark was so big? I’d only been to Tom Wahl’s! Once I saw the Tom Wahl’s sign I knew I was on my way home.

So exhausted after a weekend of meditation!

My First Buddhist Retreat – Day 2: 7-24-10

Saturday

I’m starting to feel like the woman from Eat Pray Love. My inner dialogue is driving me CRAZY!

Just had dish duty. Yuk! I hate washing dishes. At least it was only breakfast. My new friend Wendi, has been helping me a lot. She used to watch Nik in the toddler room at church.

Got through a couple more hours of meditation. Anam is a funny guy.

Some thoughts have come up… If life & death are concepts — then what is the truth? (Reality?)

I don’t like to eat & be silent. Eating is for Community!

I’d like to know what the deal is with the prayer wheel.
– Can anyone spin it?
-What’s it for?

Boy it is hot in this sitting area…but cooler than outside.

Oh I don’t know how I’m gonna do this walking meditation at 2pm. I don’t know if it’s on the trails or what. I need an arm to do that.

How does Beth do it? She looks so happy. Beth is my other new friend who suddenly became paralyzed from the waist down. She’s in a wheelchair & she doesn’t let it stop her. I must keep in touch with her afterwards.

I wish I brought my camera. I guess it’s just as well. Keep me off my electronics.

OK walking meditation OVER. That was tricky — especially with all the obstacles on the floor. We went outside. I walked by the garden — just beautiful — recognized lots of plants & flowers, too. They arrange it all so nicely. I made a beeline right to the shade trees. I wonder if the bark was supposed to do that peeling? At least the walk was only 45 minutes. I wish it wasn’t so hot outside. Nice & cool in here in the meditation room. I could use a nap. I wonder when my brain will stop the crazy rambling?!

Oh my goodness — I fell asleep during this afternoon’s teaching/meditation! I then rested afterwards and almost missed the next session!

I got someone in my room now. Don’t know who they are but they took the box of tissues as her own! Grrr…

I guess I’ll see Anam. I can’t imagine what to say.

What a delicious dinner! Pesto & gazpacho! Yum! Kudos to Savory Thyme! Of course, I couldn’t help but think that lunch’s salsa became tonight’s soup! (Thanks, Micah!)

Looks like I’ll be meeting Anam tonight. What am I gonna say? I need guidance to see myself through this illness? I know I’m seeking guidnace — I’m not sure how to ask. Maybe they told him I’m dying. How to proceed…

Oh yeah — and I saw my awareness tonight during Anam’s guided meditation!

Well — I saw him… and … I CRIED. I could barely get it out… & I’m all runny nose, tears coming down — uh what a mess! Smart guy. He told me to turn that DESIRE to live to INTENTION to awareness & enlightenment. He says it’s there — it’s always there. Just need to accept it. Dive in. The body is just a guesthouse. Well, glad that’s over.

My First Buddhist Retreat – Day 1: 7-23-10

For my 40th birthday I decided to go on a retreat. I chose to try this: Residential Retreat
with Anam Thubten Rinpoche
put on locally by Rochester’s Dharmata Meditation Sangha. (Last year I saw Anam at the UU church and bought his book. Excellent read.) I wrote this entries the good old fashioned way — on a pad of paper with a PEN.

Friday

1/2 day maybe…

I’m staying in the Sewing Room. I feel a little bad that I’m all by myself, but also feel kinda relieved. I met a nice lady in a wheelchair named Beth. She seems to be taking me under her wing. I have alot of questions for her after this retreat! Luckily, she lives near me.  I’ve turned off my phone. No internet or TV. I brought my book of poetry by Rumi (thanks, Irene!). Right now it’s just me and caney. (My cane.)

This place has quite a history! Visit Stillwood Study Center for more info.

The Sewing Room is HUGE. I don’t know what or who uses this place for sewing. There’s also paper & art supplies. Cool.

Looks like I gotta wash & dry ther dishes as my yoga karma duty. Of course, right? (I hate washing dishes!)

I’m ready for a nap & I just got here!

Turns out I know some people here from church. Kinda cool. They are taking good care of me. Even JoEllen put in a good word for me to meet Anam! I don’t know what I’d even say to him.

I must be going to the meditation now.

That was fast! I didn’t know time could fly by so fast! Now it’s time for bed. Lights out &  NO MORE TALKING until I leave Sunday!

Authentic

This word just keeps coming up over and over these days. Living authentically, being authentic. Being your authentic self. Authentic tweets! What does it all mean? Or more importantly — who ISN’T living this way?

authentic Definition

Am I real? Are you real? Of course  in Buddhism, nothing is real and is not real!

I’d like to think I am an authentic person. I try to live my life the same way as my values. It doesn’t ALWAYS line up that way. I’m only human … and humans are … fallible.

I dislike dishonesty. Brutal honesty is not always the best way, I know. But just come out with it people!

I know several people who do nothing but live for someone else or for other people’s ideas constantly. They are miserable. What good is that? You only get THIS life.

Live NOW! You never know when you’ll be diagnosed with a terminal illness or killed unexpectedly.

I want to continue to live my beliefs, for as long as I am alive. I want to eat cheese and chocolate and drink wine ANYTIME I CHOOSE. I want to love  – and express it – to everyone I love. There isn’t time for “maybe someday”.

Live your life authentically NOW. No bullshit. Just be honest with everyone and most importantly, yourself. Live simply, simply live.