Response to {Erella's Brain Trust} 11/11/11 remembrances all around.

[P. H. Hyatt]

Dear Hearts, at Erella's suggestion, I'm sharing this with you. Hope it elicits some joy.

Pam Hyatt ....loads of love!!!

Begin forwarded message:

From: "P. H. Hyatt" <senio...@gmail.com>

Date: November 12, 2011 9:37:05 PM EST (CA)

To: Erella Ganon <w...@erella.com>

Subject: Re: {Erella's Brain Trust} 11/11/11 remembrances all around.

Bless you, Sister E....what wonderful contributions you are making to the dialogue of patients & doctors!   I suspect they're all gobsmacked by your delicious artwork & extraordinary knowledge of what the heck is happening in YOUR body with this specific conundrum.

LOVE the serendipitous reunion of the Hilton Head contingent! YUM!  Talk about serendipity, coincidence, convergence......

Hey, my American goddaughter ...whom I've not seen since the 70's.....her mum (my BFF) & I lost track of each other after 1986 when we both moved a helluvalot......dig, said goddaughter Xandi found me on my YouTube music videos (PAM HYATT SINGS) 3 weeks ago....connected me to her mum in Scottsdale... I surprised mum Anne by phoning (YOU'RE SHITTING ME!!!)....Erella.... YOU would LOVE Anne Sanderson..... she's like you, kiddo!......get this...

she had childhood polio, docs warned it COULD come back in adult life.....2001...aged 65, working in Scottsdale, using a cane, she SENSES   mobility is going to quickly depart....SO....she sez: 'Gotta explore this planet that I've only READ about!".....buys a 1 way tix global circle westbound, valid 1 year....takes a year off work....chums say YA GOTTA CALL US EVERY DAY!  to which Anne responds....Why? I don't call you daily in Scottsdale, why should I from Borneo?! .....off she goes, babe, takes the year off from job.....explores 65 countries, enthralled....only needs to see 2 physiotherapists enroute.....back in AZ, returns to work....year later, POLIO nails her....wheelchair .....firm lets her go knowing her medical costs will be high....she sez to me:

Pam, when you're a "crippie" (HER word, not mine) the world views you as being brain DEAD, deaf, blind, lacking all senses...... I nail the bastards when I can.....other day, at the airport, a man approached and stood DIRECTLY in front of my chair....he never looked at ME, he looked OVER my head at Xandi behind me, and said, in a saddened voice: " Ohhhh, what does she HAVE?" He was in short sleeves, so I gently stroked his bare arm, smiled, and said: "Infectious syphilis!"  He left. Quickly."

She also said, Erella, a few months after being in the wheelchair, I REALIZED I could easily become a veggie, so I enrolled in university, take courses that interest me.... right now, loving mythology. I also volunteer with 3 organizations. AND..... I'm down at City hall, berating councillors weekly for their rotten policies for disabled individuals......suspect they'll soon hire me in an effort to shut me up.

ERELLA.... THIS WOMAN HAS ALWAYS BEEN AN INSPIRATION TO ME.....SHE HAS NEVER CLAIMED THE HOOD OF VICTIM, AND I CAN ASSURE YOU.....LOTSA LESSER FOCUSED DAMES WOULD HAVE DONE SO GAZILLION YEARS AGO!

SO.....get this, Sister....... my sweet goddaughter Xandi, who has some kinda amazing job zooming all over the USA relocating executives, racking up airmiles and hotel credits, plus pulling in a nifty chunka coin....PLUS....she bought for Anne one of those nifty vans outfitted for a "crippie" so a ramp zips out, Anne wheels up to the steering wheel, and drives wherever she wants to go.....

yeah,.... so Xandi is flying ME to Scottsdale,. Nov. 30th..... I'll hang out with those two amazing broads....then around Dec. 13th....Anne & I will do our senior version of Thelma/Louise road trip to LA to visit my actor son Zack Ward, plus other chums....then on Dec. 19th....Xandi, using her airmiles, is flying me to Vancouver where I'll hang out with sweet singer chum Lorraine Foster in her PAL Van couver flat ....visit Carson's beloved Heather jones' family in Burnaby for Christmas (carson & heather will be there)..... then back to downtown Vancouver until Jan. 1st, when Xandi's airmiles fly me home.

I mean, WHOOOOOOO....... all of this is astonishing, Erella....but then,   the GIFTS of sweet LOVE are being given to us in the most serendipitous ways now. TRUST what is occurring. It truly is WONDER FULL!

DEAREST LOVE TO YOU, MISS PUSSYCAT.....XOXOXOPAM

On 12-Nov-11, at 4:15 PM, Erella Ganon wrote:

Hello friends,

Lots of craziness going on around here. 

(the good kind)

11/11/11 -there hasn't been so much excitement about a date- since 10/10/10. My birthday once fell on the day after 6/6/6.

I guess 12/12/12 will be the last one.

I have to tell you about the wildest thing.

My mom lives in a kind bewildered wonderment in a home with Alzheimer's. When people say she's suffering from this disease, I correct them and say that it is my sister Monique and I that suffer from Alzheimer's. 

Regardless, her eyeglasses have gone missing in the otherwise excellent long-term care facility that she lives in. The prospect of testing her eyes now that she no longer communicates was too problematic to consider.

I decided to venture into a Wal-mart store, which is where she had her last eyeglass prescription filled. I am not a big fan of wal-marts, in general even though it is the closest big store to where I live. I was thrilled they had the After I selected her glasses, I started a nice cheerful "hello, nice day today" kind of conversation with the lady that was giving out free samples of chewing gum. She told me that we had spoken before. I said it was possible. I live in the area and asked if she does too.

She said that the last time she met me was in 1994 or 1995 in South Carolina.

I was totally shocked. 

She said I was with a tall red haired man and a baby. What!?

Sure enough. It is true.

I was visiting a friend in Hilton Head Island, South Carolina in June of 1994 with baby Celeste and her father.

All I  knew about her was her name, Patricia, which I just read on a tag.

She told me that she lives in Etobicoke and was in Hilton Head looking after her dying mom at the time. 

While she was there, she picked up some shifts giving out free samples at the wal-mart store. I came by and we talked briefly.

She said she has a good memory. Uh -- yeah!!!

I told Patricia she should consider a career change. 

Private investigator, journalist, spy... but she said she really loves giving out samples in the Wal-mart stores.

It was very flattering that she remembered me after all these years. Made my day.

I'm on the 40mg a day of the drug I was trying to wean from. I got down as far as 25 mg but that nearly killed me.

I'm still not stable with this and am working on altering different aspects of my diet to make me feeel stronger. I have good days though.

I'm learning that my activities in and out of the various hospitals, has been informative and has value. I am awake and not a zombie.

Who knew?! I have become an expert on my own care. That is one thing I have learned. Some people don't want to be part of the conversation. I get it. I realize that when we become more engaged, it is easier for a better outcome.

Lately, I have been attending various medical conferences and inviting the doctors, educators and policy makers learn my perspective about The Patient Experience.

I also gave a slide show at a conference through Creative Sprit about disability and arts which was extremely inspiring for all involved. I think I really made a difference and it was incredibly rewarding to do it.

I'm learning about how valuable my experience is. Sure it is important to me, but I notice things that could possibly improve life for other people.

I'm also learning about what doesn't work in our system. 

It doesn't make sense to me to complain to a risk obsessed hospital about a hospital 

and expect change in policy.

It seems Patient Experience has become a kind of buzz word.

The policy makers and hospital executives are all wanting info about how to include that voice in what they're doing. 

Bravo. I expect that there are profit motives in part of what drives this curiosity but I am willing to accept their interest with open arms and mind.

At one of the conferences I met a fabulous doctor / educator and related on a myriad of points from opposite sides of a line but with the same goal or ideals. It was exciting. 

He teaches at Harvard Medical School and keeps up a practice too. I love his enthusiasm for accepting technology and his refreshing willingness to be challenged.

We connected entirely and now we follow one another on FB and twitter. How cool is that?

He's totally engaged with his students and patients. 

When he finishes seeing a patient, he goes over his notes with them and emails a copy to that patient so they can keep track of what is being discussed. What a simple way to make things that may be daunting, clear.

He was appalled to hear that in Ontario we have to go to our doctor to ask for our test results. 

Of course, OHIP pays for the visits. 

He wants us to make medical records accessible to the patients.

A woman at the same conference said that Sunnybrook Hospital is trying out a system like this. They used to have a 21 day "waiting period" between when we have our test results in the system and when the patient is allowed to read them and was proud to say they've changed it to a 14 day waiting period. Why is there a wait at all?

I really don't understand.

Dr Daniel Sands said that people always claim privacy or security reasons for why they keep our records from us. He said we do fine with Paypal, stock trading and ATM on line so we should be able to manage something like our blood tests.

It is very exciting.

There is a lot going on right now.

It frustrates me that I am not as strong and able as I want to be but I can see that I am making a difference all over the place. That knowledge propels me forward and even gives me energy when I expect nothing.

A new development (-actually two of them ) are being cooked and negotiated. 

I expect to have some good news for you my dear supporters in the near future.

I feel so lucky, sometimes I think I will explode.

Life is good. I have the best kind of abundance in my world and it flows with remarkable energy. 

I love it.

I send you my love!

Erella

PS. Brilliant writer, author, Sheila Heti did an article about the Mad Hatter and interviewed me last week for a short quote. This piece might make you laugh. It is really funny because this kind of thing could never exist now.

http://www.thegridto.com/city/places/down-the-rabbit-hole/

<book-21-page-28.jpg>

<book-21-page-39.jpg>

Here's a photo of my grandmother that I just found, scanned and cleaned up.

I love it.

Hope you do too.

<Fruma.jpg>

Here's an image from the summer that I forgot to send to you.

<book-21-page-22.jpg>

--
You received this message because you are subscribed to the Google
Groups "Erella's B92MORE" group.
To post to this group, send email to
erellas-b...@googlegroups.com
To unsubscribe from this group, send email to
erellas-brain-t...@googlegroups.com
For more options, visit this group at
http://groups.google.com/group/erellas-brain-trust?hl=en?hl=en
 
We put the doc about us up online. Here it is if you'd like to watch it.
www.tinyurl.com/erelladoc