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!

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Message to Everyone

For those of you that haven’t heard, I have been diagnosed with ALS (Lou Gehrig’s disease). The neurologists believe it is a slow progressing version, but incurable. I’m still able to walk, drive and go to work at this time. We don’t know how quickly it will progress.

Many people have asked what they can do for me. At the moment, I don’t really need much care. I will in the future.

If you are interested, there are 2 charities that you can donate to help:

Walk to Defeat ALS — WXXI Walks for Joy

http://web.alsa.org/site/TR/Walks/UpstateNewYorkWalkteam_id=177270&pg=team&fr_id=6578

Thank you for helping us reach our fund raising goal! WXXI Walks for Joy is a team of WXXI colleagues and friends who are pledging support to our friend Joy who was recently diagnosed with ALS. Together we can make a difference in the lives of those, like Joy, affected by Lou Gehrig’s Disease. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatment and a cure. Please consider joining our team in the Walk to Defeat ALS or choose a team member from the list and donate to our cause.

Send Joy Parker and Her Family to Disney World Fund

http://www.facebook.com/pages/Send-Joy-Parker-and-Her-Family-to-Disney-World Fund/128862073803837

My husband’s best friend Brian created this fund:

Joy was recently diagnosed with ALS. She and her family would like to go to Disney World this year, and I want to help them get there. So I’ve started a fund, with Joy and Mike, with a goal of $4,000. Please write a check for what you can, and make it out to “FBO Joy Parker” (FBO stands for “For the Benefit Of”). Send it to: Joy’s Disney Fund, C/O Brian Steblen, 2 Prospect Street, Fairport, NY 14450. They’d like to go in December, so get those pens out now!

Right now I’m trying to live to the best of my ability everyday. I’m hoping to make some trips and visit friends and family before I am unable to.

Thank you so much for being in my life.

You can keep up with me on here my blog: http://simplejoysonline.com

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.

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?

Who do I think I am?

I saw the fantastic and inspiring documnetary called Who Does She Think She Is? at the MAG. WOW! I really liked that the event also included childcare. It is hard to be a mom and an artist, and certainly a wife.

When I was a little girl, when people would ask me what I wanted to be when I grew up — I would always answer a singer and and artist. When I was a little older, maybe 8 or so, I got a camera. I just took snapshots, and eventually portraits of my dolls. At some point my ideas changed and I thought it would be cool to be a chemist or something — but I was not cut out for chemistry, judging by my grades.

Singing was another option. I loved singing since I was little rocking out to the songs on the ’70s in my mom’s car. As a teen I joined chorus and briefly did some song writing and perfroming with my friends. We had big dreams, but as I try to tell my stepdaughter, it doesn’t always work out the way you planned. So you make alternative plans. I was in photo classes in high school and learned how to use video equiptment on our in-house TV game show Beep Buzz.

Although I still enjoy music, I mostly sing in the car. My passions did change to photography (and other artisctic mediums after college) and television. For many years I had a great spurt of energy for photography. All before having a cool TV job (and using my creative drive there) and having kids in my life.

I can’t really blame the kids, though. Yeah, they take up your time and much energy but their innocense as children is incredibly inspiring. I do blame my job and the fact that working on the web and using my creativity THAT way is what has drained me of my personal creativity. I give it to my company. And I also blame my body. It isn’t what it used to be. It’s old, broken, and weak. Possibly sick as well. And just ordinary life. We have so much to do today. Everyday. Grocery shopping, doctor appointments, etc… well you know what I mean.

So for now I will just write when I’m inspired and show you my older photos until I can get around to doing something else.

Springtime in Rochester

Well it’s April 27th and it snowed today. Yep snow. Where the hell is spring?! This weekend it’ll be 80 degrees. So I guess we skip spring and go right to summer. Ugh. I love Rochester, but jees, enough with the friggin’ snow! I put up some photos that I took in 1996 at the Lilac Festival. Oddly, it was so hot there were no lilacs that year! I took pictures of the other things there: tulips, dogwoods, other blooming things. My photog friend, Jill Santi, insisted we take pictures at the Festival. I had this cool Kodak Pony camera that was my boyfriend’s. It was still when people shot FILM. I used to enjoy experimenting with old cameras to see what can turn out from them. That was a throw back to my RIT days. Before digital and the web.

Woe is me

Now, I’m not trying to get lots of sympathy here. I’m really not! I’d like to think the title of this post is really just full of sarcasm. The rest of the post is not.

I’ve been sick. First we thought it was asthma, then anxiety, then plantar fasciitis, lots of physical therapy (land and pool) but after years of not walking right, not walking up stairs and falling down, I finally went to a neurologist. I get my results from all my testing, supposedly, Monday, March 15, 2010.

I’m more than a bit nervous. Especially today after getting a call from the doctor’s asking if I want to come in TOMORROW and then getting mail form the office as well. Both turned out to be routine type things.

I hadn’t been thinking about March 15th for a while! Although, I KNOW my mom is. She’s praying for me. My mom’s cousin even took a photo of me to the laimas in India so they can pray for me. I’m sure many of my friends and family and even coworkers are all sending prayers in my direction. I’m honored and I thank everyone. Hey, it can’t hurt, right?

Now I’ve been obsessing for years on what MIGHT be wrong with me. Could be a pinched nerve or something like that, OR it could be ALS or MS. Now those last two frighten me. They make me have my life flash before my eyes. I don’t want to miss my kids growing up to be bright strong women and give me grandkids. I don’t want to leave my husband without his partner. I have SO MUCH that I want to accomplish as well. I’m not sure I can bear the news if it’s bad.

I am sick & tired of being sick & tired. I want to know. I need to know. I’m sick of people asking me if I’m pregnant because I’m gaining weight and I walk wobbly. I tired of falling down everywhere where I can’t get up and need strangers to help me get back up. I can’t take care of my house and my family the way I used to. I can’t even run after my 4 year old to play a game of chase.

So for the last 2 weeks, while I wait for this appointment on Monday, I try not to think about it. Or I joke about it. Granted, the meds help. I will take this time to NOT fret and to enjoy the next few days with my family. I will NOT be attached to any outcome.

Vacation

Vacation  all I ever wanted … so I just started to think about going on a vacation. I mean one WITHOUT children. It’s been forever since we went away. I’m even thinking about traveling overseas again. I so wish to see Italy, France, Greece and Spain. I want to eat and relax on a beach somewhere. Oh the food! The wine! The delicious desserts! Of course take some gorgeous photos, too. I would also love to just visit a tropical place like the Bahamas, Bermuda even Puerto Rico. Just sipping some delicious drink and lounging under an umbrella. Ahhh… maybe some day. I still need to get my health back and strengthen my legs for all that walking.

But for now, I can dream, and remember the travels I’ve taken already. Like Key West, Sedona, or my on the road collection.

Happy 2010

Writing from my iPod touch. Man technology is incredible! I guess I’ll need to type with my thumbs!

So what’s new?

Well my little one has her first sleepover tonight- not hearing a lot of sleeping up there!

This year I want to use technology in creative ways. I need to get out and shoot again. I should make that more of a priority. I’m really going to try to do more things for myself. I’ve neglected myself far too long.

Happy 2010!

The World

The internet — or internets as some would say — is definitely a big part of making the world a smaller place. My day job certainly takes me to places and connects me to people from all over the world. All from my chair, of course!

I never thought I’d ever be doing anything on a computer. Back in high school — I wouldn’t even touch a computer. Thanks to RIT and my good friend Jeff, I learned how to use a Mac (thanks Jeff!). I’ve been smitten since. With the Mac, that is.

Anyhoo, I was going to be a famous photojournalist rock star or something like that in high school. I think that’s when the whole “world view” started to develop for me. I just remember these dance club parties (Pandora’s Box)  my friend Dawn & I would have in her basement. They were always of an International flair. I remember Tami and Keith came over. One time Laura and Natalie came too. Ah the 80s! We loved anything not American. We weren’t UN American we just liked to know more about the world than what we’d seen already. We enjoyed meeting the exchange students at school. We watched CBC and listened to Canadian music.

So I guess I was already of this World mindset even in my small town of Bliss, NY.

A few years ago, while working at WXXI, we had a guest come in for an event named Spencer Wells. An amazing GORGEOUS man, he was also super intelligent. He had done a show we were airing called The Journey of Man: A Genetic Odyssey. He’d also written a fascinating book of the same name which completely floored me. Basically, he was able pinpoint how all people of this planet were related by genes. Incredible! Learn more

So imagine my dismay when we are bombing other countries. Hello! Everyone is related! Quit it already.

Now we are at the social media part. The part that once again, bridges the gap between people in different cultures and backgrounds. I guess Michael Jackson was right — We are the World.