Research Irony
03 Nov 2010 3 Comments
in Bucket List, death, illness
I’ve always loved irony. It’s just one of those things about me.
These days I am both planning my vacation to Disney
AND my demise.
I must say planning for my eventual death seems much easier! Especially after having read the fiction novel The Household Guide to Dying. It’s a fiction piece but it’s really amazing how this author and her character Delia got in my head. For someone who was not terminally ill (the author) she sure was able to relate her character to the way I’m feeling!
It’s got me thinking about all the things I need to settle up before my slow degenerating death. Aside from Disney and the other trips I’d like to take, I still have to take care of the boring details of death and dying. Things like music and passages for my funeral, if and when I want life support and feeding tubes, donating my body to science, organ donation, cremation, creating a will, guardianship, passwords and usernames to important accounts…. List goes on
and on.
Then there’s things I want to give to friends and family beforehand. Which means going through my crap. There’s no good way to ask people what of mine they’d like before I die. Man, I’m exhausted just writing all this!
I need a vacation! Oh wait…
I wanna be pretty
26 Aug 2010 Leave a Comment
in death, illness, motherhood, simple life Tags: body, gorgeous, jewelry, make up, nails, pretty, style, sunglasses, wax
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
02 Aug 2010 Leave a Comment
in death, illness, simple life, spirituality, summer
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.
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
02 Aug 2010 Leave a Comment
in death, illness, simple life, spirituality, summer
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.
Message to Everyone
23 Jun 2010 Leave a Comment
in death, illness Tags: ALS, charities, family, friends, Joy's Disney Fund, Lou Gehrig's disease, Send Joy Parker and Her Family to Disney World Fund, trips, Walk to Defeat ALS, WXXI Walks for Joy
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
26 May 2010 Leave a Comment
in death, illness, simple life, spirituality
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
12 May 2010 20 Comments
in Bucket List, death, illness, motherhood Tags: ALS, bucket list, do, drink, eat, experience, illness, Lou Gehrig's, see, terminal, travel
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?


