Elly's Gratitude Group
for those experiencing
Chronic Fatigue Syndrome, Fibromyalgia, & Orthostatic Intolerance
Selections from Email Meeting Summaries 2007
December
November
October
September 21, World Gratitude Day, Conference Call
August
July
June
April
March 29, 3:30 PM - with guest, author Alissa LukaraFebruary 28, 8:30 PM, conference call; Feb 1, 4:30 PM, at The Gilbert Clinic
January 29 Conference CallJanuary 11 Conference Call
Some other EGG Pages
Sign A Guestbook of Gratitude (AGOG)
2006 EGG Summaries
Main EGG Page
Gratitude is a heart healing energy and one can
use it to reclaim space
from anxiety, fear, grief, anger. Many times it
is easier and a necessary step
to work with gratitude before one can
heal the wounds surrounding love.
What is EGG?
Elly's Gratitude Group, or EGG, is a discussion group for people with
CFS, FM, OI and similar conditions, eager to use attitude, mind, and
spirit along with physical approaches for healing. It's a discussion
group to practice acceptance and changing willingly, to use language in
new ways to uplift the self and others, to bolster one another in
difficult circumstances, and to sharpen the skill of finding silver
linings in nasty storm clouds. We know about the conditions, so we can
cut to the chase of support and encouragement.
Practical suggestions thrown in as a bonus.
Sept 21 Conference Call
World Gratitude Day!!
June 2007
EGG Meetings
Sunday April 29, 2007, 4:30 PM
Call and Summary pending
To call, dial (218) 936-6666; Press 2, Code: 33669933.
March 29, Thursday, 3:30 PM, Gratitude Group Conference Call
with Guest Alissa Lukara, author of Riding Grace, A Triumph of the Soul
Soulful discussion about the healing process,
of embracing everything in life without judgment, about the ups and
downs and courage it takes to live with CFS and similar. The Summary, posted to CFSupport on 4-17-2007:
For new members: What is EGG?
On
March 29, there was a conference call for Elly's Gratitude Group (EGG)
for people with CFS, FMS, and OI (chronic fatigue syndrome,
fibromyalgia syndrome, and orthostatic intolerance). We meet by call
sometimes so we can have friends around the whole country also seeking
to use gratitude and other emotional and spiritual and intellectual
resources for coping and improving life with our conditions, and
because it means we don't have to use the huge energy it takes get
dressed for the outer world, drive somewhere, sit up and act normal,
and interact with the world that doesn't understand.
It is a
discussion group where the emphasis is not on physical treatments or
symptoms although those sometimes get mentioned, but instead is on the
use of new kinds of thinking and language and the search for meaning in
physical experience. It is for accelerating healing of any or all that
ails us as a mind-body-soul entity.
Introduction
"There's a self expansive aspect of gratitude.
Very possibly it's a little known law of nature:
the more gratitude you have, the more you have to be grateful for."-- Elaine St. James
A
funny thing that happened at this elly's gratitude group (EGG)
meeting... there were many mentions of chicken! Things that smelled
like chicken or well I just don't remember what all. But it led to some
funny chicken and egg comments. Reflecting on it now, I feel it is a
helpful hint for healing to question which things come first.
Must
I have more things or health to cultivate gratitude or will gratitude
for the body functions that still work cultivate more health as the
quote above suggests?
Was I feeling stressed to the max
first before a trigger of an infection or accident sent me into CFS,
FM, OI or is my condition now creating stress sensitivities or is it
both?
While I was at the restaurant Eggspectations on Sunday,
the menu said: "Which comes first, the chicken or the egg? Now you can
have both! 2 eggs any style with grilled chicken breast and potatoes."
The EGG group with its chicken mentions invites to let go of the
either/or choices and welcome both/everything.
The EGG meets Alissa Lukara Meeting, 3/29/07, 3:30 PM
Summary by Elly Brosius
Alissa Lukara just published a book, "Riding Grace: A Triumph of the Soul,"
in which she describes her life experience with CFS, with childhood
emotional and physical abuse, and with repressed and released
experience and memories of sexual abuse. She also describes what it
took for her to heal all of that and this June 14, it will be 9 years
since she recovered from CFS. She and I are working on a teleconference
to mark that day called Riding Grace, Coast to Coast. Alissa is also
the creator and founder of a website and Cyber Center called
LifeChallenges.org that helps people through their difficult life
experiences.
To make sure all who wanted to be heard from could
participate on our March 29 conference, I called on people "around the
room" and one-by-one, asking how people were doing with gratitude in
the face of their own Life Challenges. Callers with CFS, FM, and other
chronic illnesses, serious life challenges are indeed and surprisingly
to many, finding things to be grateful for, finding a way to laugh a
little with friends who get it. Here is some of what we heard.
From several:
--
I'm am grateful to have this chance to participate in this group, over
the phone, in my pajamas. It is so good to hear compassionate, knowing
voices, voices with warmth and caring.
For what we heard from
individuals, I'll write dialog in the "I" voice, adding names to those
I know are comfortable with sharing their names.
-- I
found something so profound and fitting to share on the day of the
call. I was psyched to share it. Then call time came and even though I
thought it so important and so obvious that I couldn't forget it, I
forgot what it was or even where to find it. My gratefulness has to do
with how I used to mutter for hours and be upset at this sort of thing.
Instead, now this makes me laugh because there is a lesson in
everything I forget! And so I realized what happened, that I could be
okay with forgetting, could be a more fitting and helpful thing to
share than what I "lost"-- that it is possible to not lose energy to
being upset when one forgets what looking for, forgets what was going
to say.... Forgetting is often a clue equally as important as finding
and knowing. Sometimes, when looking for "lost" thoughts or stuff, we
will find things we didn't realize we needed. Perhaps when this
happens, we are being redirected by forgetting something to look for
something else... A few people, and Alissa especially chimed in with
agreement.
(Elly)
-- I am grateful for the book by Elizabeth Lesser, "Broken Open: How Difficult Times can Help Us Grow" I really enjoyed it... She runs the Omega Institute for Holistic Studies
in upstate NY. The book is also about the human spirit and how
adversity gives us what she calls the "Phoenix Process" the chance to
grow and embrace change. Her writing style is an inspiration and
her book is a wonderful gift because it is honest and poetic. I emailed
her and she took the time to respond which I think is quite telling of
one's authenticity and generosity.
(Julie L)
-- I am grateful
for finding the support group and last month's meeting in Annandale
with the team of the Gilbert Clinic. I just went there and am driving
home, on the beltway, my husband is driving. I filled in my application
and I so hope they accept me into their program. It is so gratifying to
speak to people both at the meeting, at the clinic, and now on this
call, who understand and believe.
-- I am so grateful to the specialists attending to our sick service dog - with kindness with fees reduced, with their time.
--
I am so grateful for hearing our voices, even in pain. I am grateful
for the research doctors are doing. I am gratefule that my Mom who also
has CFS can go use the computer and go on Medline and do research.
--
I am grateful for just recently finding out / realizing that CFS and it
all the symptoms could be a way of protecting myself from spending too
much energy - a new paradigm of thinking for me. That is helping me
change my views. That is giving me hope. My body is not against me, but
working for me.
-- I am grateful my son is so logical when I am
not. In a parking lot recently, when my remote keyless car door opener
didn't work, he reminded me I have a key for the door! I may not have
remembered, and might have cried or called for help, when what I needed
was in the palm of my hand.
-- I am newly more grateful for my
husband. I have been mad he has been away for a job, the separation is
so difficult. But with help, and refocusing, practicing looking for the
hidden blessings in it, it has made us appreciate each other more.
--
I am grateful for some things moving to a small town has brought me: I
switched all drugs at to a new pharmacy, where they know me, say "Hi,
beautiful" every time I go in. They take the time to know me. There is
a sense of community.
-- I am grateful to friends who run a
children's sale. With pacing myself, I was able to volunteer many hours
- and I am still standing. I avoided triggers. I became very aware I
was choosing peace amongst the chaos there. There was a gift of clock
with stars that moved me.
-- I am perpetually grateful for 2
dogs, cocker spaniels (who said hello on the call!). One is "the boss"
in the doorway (he is13), and the, younger one, "the nurse", she rubs
me with treatment/massage.
-- I am grateful that I love dogs and
can see them on TV, I don't have to have my own. I sometimes want a dog
but after talking to Elly about how expensive it can be if something
goes wrong, how much work, how they look at you so you won't stop
petting them, I realize it wouldn't be fair to the dog because I am
barely taking care of myself physically right now. (Toni) [After this,
Eileen brought Toni a squishy plush stuffed dog at the Fred meeting.
She has named it Goldie after a cocker spaniel she had as a child.]
--I am grateful I have figured out how to say, when upset, justified or not, "You know I'm not really mad at you..."
People have an easier time be civil to me after that even though my
voice has been raised, my frustration obvious, my choice of words
including "choice words". (Toni)
-- I am grateful for
the opportunity to talk to all on the call
spring - bursting, glorious beautiful
living in a valley between two Mountain ranges
surrounded by green,
being able to talk a walk!
(for 1 1/2 years, couldn't walk that path I so environmentally sensitive)
The healing power of nature...
That I am over CFS since 1998!
(Alissa)
Next, Alissa got questions about writing the book, about her experience:
Were you writing all the time?
I was journaling all along, then felt a soul calling to write more, and a I felt a lot of resistance.
What was the healing most about?
The healing was most about Saying YES to entire life, not just writing the book, but life...
it was grace in that workshop I went to [about shifting to Miracle Thinking]
The book took 5 1/2 years to write
Was gratitude important in your process?
Gratitude has been invaluable to me, not a practice in the beginning, later it was important
I would write 5 things, yes, writing them down adds more to it
Its okay to write simple things: E.g. breath, indoor plumbing.
Another
caller, Ingrid, joined us and commented about Alissa's website
LifeChallenges.org . Ingrid was grateful to find the stories by
Jaqueline Kramer there, especially
"Healing into Health"
http://www.lifechallenges.org/people/kramer.html
about
channeling the unconscious mind through health health from the inside
out, not the other way around. She said "I'm still wading through,
but" it is helping, so interesting....
Alissa told us Jacqueline is author of Buddha Mom, who has a website HearthFoundation.net - A Home for Spiritual Parenting and Homemaking
Another story of hers at LifeChallenges is
"Skillfully Loving Your Child" Jaqueline Kramer
Excerpted from Buddha Mom: The Path of Mindful Mothering
(Jeremy P. Tarcher/Putnam, New York 2003)
Another caller, who joined us in progress, added her gratitudes:
--"even
though I'm feeling crummy..." some good things happening. I may be
getting a helper tomorrow, to help with laundry, to help unload the
dishwasher. I am not becoming "part of the chaos that has become my
apartment" (Celia)
It took our last caller more than an hour,
plus an email, to get through. Yay. That's preserverance! She was the
13th attendee and she offered...
-- I am so grateful for the
book and for Alissa sharing her story. There is much that is like my
story. Sexual abuse is much of the stress that became my CFS and FMS. I
also survived. I 100% believe my CFS and FMS comes from that
stress, but I don't think that has to apply to everyone. We all have
different stories and and things we had to deal with whether it be
genetics, infections, traumas. I have found especially difficult to
talk to other CFS patients about my story. They don't want to know it
if it has to do with abuse. So I am very grateful to Alissa, to her
book, and to be a part of this call.
Then there was a long
discussion about cleaning products that would be easy to handle if
chemical sensitive and where to get them if you live away from a big
city. There were tips flying left and right about lemon juice, vinegar,
baking soda, having friends who shop more pick stuff up for you,
internet shopping, hiring cleaning services...
Then Alissa was asked:
Eileen: What is the title "Riding Grace" about?
Alissa:
Riding Grace is a concept of thorough acceptance and surrender to the
moment, whatever the moment is––not what should be or
needed to be––that opened me to grace. Grace connected me
more to myself. I can't always do it. Its also about looking back,
looking at the grace of each moment even the sad or crummy ones.
Anytime we can reframe something, that is important. Honor what comes
up, too. And its okay to be a mess.
Toni: Can you tell us more
about what you mean by wholeness? Wholeness came up on this call and is
in the excerpt/article by you at Womanlinks, "The Power of Embracing All Life"
Alissa:
Wholeness is inside us already, not a journey to it. Wholeness is
always there. We are just remembering it. Wholeness is a state of
grace, in my authentic self, fully in the moment. Wholeness is seeing
that I and my life is perfect as it is, not about perfection. Even in
the messy moments the larger thread weaving through my life is there.
Members
like this and chime in. Eileen tells us of an old saying, "It doesn't
have to be perfect, it just has to be done." Toni shares an insight...
"Gratitude connects us to The Big Picture." Much of what our calls and
the gratitude group is about is about reframing pictures, seeing more.
We thanked Alissa for joining us. We thanked each other for a good
time. We reminded each other that listening in talking is enough to
make us tired and to go rest. We signed off.
After the call:
--
One member, Nina, had lost her voice and didn't talk on the call, but
she listened in. She wrote us later: "I found it tremendously helpful
to be able to hear each person's expressions of gratitude in that round
robin format. Altho I could only whistle "hello" on this call, I
woke the next morning w my full voice, so a big hug and thanks to
everyone on the call for their positive, healing energy!!"
-- One of the first time callers wrote, "..., the call was quite an uplifting experience for me."
Several
of us thought it would be great to help get Alissa on our favorite talk
shows such as Oprah or NPR's Diane Rehm (Diane Rehm wrote "Finding my
Voice"). Ingrid wrote us later: "I'll definitely do whatever I'm able
to help get the word out about Alissa's book. I checked the Oprah
website, and noticed a link for emailing them re new show ideas - here
it is for anyone who wants to email them!" http://www2.oprah.com/email/reach/email_showideas.jhtml
To write to Diane Rehm, email drshow@wamu.org or go to
http://www.wamu.org/programs/dr/contact_us.php
Most
people on the call hadn't yet received their ordered "Riding Grace"
books, or even placed their orders although they expressed a desire to.
Quoting something that is meaningful to you in the book is a good way
to have your letter stand out when you write to a show. Its okay not to
read the whole thing!! I sometimes get what I need from a book from
just the title or one paragraph! Having the confidence to know that and
not forcing myself to read more took a long time to get to.
If you have trouble reading and would rather hear about Alissa's story on TV or radio, write that in to your favorite shows!
Reading
takes energy and is hard with cognitive problems. Alissa knows that
very well. She is looking into getting the book on tape for those that
do well with that. For our June 14 teleconference, we are looking into
having it recorded for a MP3 download.
Alissa sent a note after the call: "I so enjoyed being part of the group. Inspiring. So glad you're doing it."
Thank you for your participation, your feedback, reading this summary! One more Elly story:
I
said a weird thing on the call. And whenever I say weird things
(weird's origin comes from fateful!) and it happens more and more as I
heal, I have to think about why. This thing kinda sounded mean... but
then I figured out what it meant and it has a wiser message then I was
conscious of when it spilled out of my mouth. Here's what happened...
Alissa
had sent me a signed hardcover edition of her book as a thank you for
spreading the word about the book. I asked her why Amazon was only
listing paperbacks. She told us after a initial printing, there were
changes in the book industry and the publisher changed to only
paperbacks. That mine was one of a limited set. And I said to all my
special new and continuing gratitude buddies, "And none of you can
borrow it!!!" I said it kind of forcefully, too. I asked Toni what she
thought later and she said, "Yeah, I wondered what that was all
about...that was weird and" a little harsh.
So, the oddness made me ponder it. I came up with something that makes sense and feels mean-ingful to me:
Alissa's
story is a story of healing. It wasn't an easy journey. She worked
really hard for herself, re-committing over and over, working in new
ways and with new people, with remissions and huge setbacks. She had to
give up ideas about what life was about, what illness and trauma was
about, and find new ways to make her world and her health and/or lack
of health at times make sense. Shortly before she recovered completely,
she was doing so poorly she prayed for God to take her life. Then she
found new strength to keep going.
My story is a story of
healing. I am working really hard for myself, day in and day out. With
remissions and huge setbacks. I had to give up my ideas of what life
was about, what illness and difficult emotional experiences were for,
about what is physical, what is science, what is spirit, and how to
work with all of it at the same time. Even in this great time of loss
for me, I see and feel many gains.
You are all working hard on
the stories of your own healing, even when it doesn't seem like it.
Even when it seems like things are getting worse... so I interpret that
comment that came out of my mouth, that sounded so mean as this....
You
cannot borrow another's healing story, represented by Alissa's book.
You can receive the gift of someone sharing their story with you, to
inspire and encourage you along. But you have to "get it" yourselves,
get your own copy of healing, so to speak, for you. Only you will know
how to interpret all you see and experience for your next step in
remembering wholeness. You won't need to "borrow" the physical
representation (the book, treatments, what we specifically did) of our
healing stories, because your story of healing is the optimal one and
only one for you.
Corny? Perhaps... but my story has me
living in Corny Land now and I am more at peace than ever.My laughter
is more free and my emotions flow smoothly, if intensely, through
me, even grief. Come visit me in Corny Land, the gate is open.
Next 2 EGG Times & Dates
April 29, Sun 4:30 pm EDT
May 29, Tue 8:30 pm EDT
Free
Conference: (218) 936-6666, Press 2, Code 33669933, #sign. There still
could be problems with the phone companies attacking these conference
calls, so please dial a few times. Email
cfsupport-owner@yahoogroups.com if you want me to let you know the
status of our call while you are trying to get it. I check email while
we are conversing.
On our next call we'll try for 2 official
rounds of the "room". Use your turns for 2 Gratitudes, or for the first
one, gratitude, and the second, a cool Coincidence. Some find the more
gratitude they practice, the more coincidences find them. If you feel
put on the spot when I call your name, its okay to ask me to come back
to you or ask the group to help you think of something. You also can
stay silent and not let me know you are there - if you just want to
listen. I love list lurkers and phone lurkers!
Also, mark June 14, Thursday, 10:00 PM EDT, 7 PM Pacific - for a Riding Grace teleconference event with Alissa and Elly marking the 9th year anniversary of Alissa's healing
We cannot hold a torch to light another person's path without brightening our own.
- Ben Sweetland
February 28, 2007 - Wednesday 8:30 PM EST - Conference Call
There
was poetry, sharing, lots of feminine connection. More first time
callers, making new friends, feeling supported in new ways.
February 1, 2007 - EGG Meeting
4:30-6:30 pm, at The Gilbert Clinic near White Flint Mall, Rockville, MD
A
really helpful meeting for Elly. Lots of grateful sharing for all that
is, laughter, irony. Funny thing that happened after was Elly trying to
get into the car parked next to hers, same make and model, same color.
Pressing the auto unlock device, she saw the lights flash but it took a
minute to realize that was the car next to where she was standing.
Gratefulness for being able to laugh, instead of panic and/or cry and
call for help since the auto lock wasn't working.
January 29, 2007 7 PM - Conference Call
10 attendees, several new callers!
The
gratitude group is a support network of people who have significant
physical experience of CFS, FM, and/or OI, who want to talk about
adding in the power of the mind and soul to their physical treatments
to influence and accelerate healing on many levels. One way to begin is
to
keep a gratitude journal, writing down 5 things a day, or even 2
per week, that please you, that you like and appreciate. We all have
plenty of practice noticing what isn't going well, isn't feeling good,
stuff we wish was different. This is about adding balance to that by
remembering and noticing what might be okay, still enjoyable, and fun.
We usually laugh often with each other, tapping into a powerful
message. And we share helpful hints about coping, items of inspiration,
new ways of looking at things.
Jan 29 2007 EGG Call Summary
Our
Gratitude call, 1/29/07, was cut short for reasons we are not
aware. Suddenly, nobody was there and calling back into the call
gave me a busy signal or no sounds at all. But what a great
conversation! Nearly two hours, maybe we needed an unexpected
intervention. We were getting beyond our normal beyond tired.
Some might have been frustrated they had little chance to speak. When
that happens, call me (Toni) or Elly the next day for more chances to
share. This meeting seemed to demand less facilitation and go wildly
into raw issues of coping and laughter and tears and amazement at our
sharing. It was a little louder and bolder,faster paced than most of
our meetings.
Originally, there no periods (!), I mean,
separations of sentences, nor paragraphs. Wanted to get something
down before I forgot the themes thinking we may add to it as we
remember more, maybe by reading these. Decided this is an okay way to
share a summary, too! -Toni
The Gratitude meeting themes were
---children,
---sadness over not having them,
---relief when realizing we couldn't have handled children if we had them,
---people
who love children but can't stop themselves from cursing and saying
other inappropriate things in their presencewho once thought they'd
become day care providers after
disability retirement,
---vulvar pain and pain of the floor of the pelvis,
---operations on or to remove female organs to relieve pain from which we never recovered,
---mothers and daughters with similar or same conditions and coping well and not so well,
---mothers who can't understand,
---asking mother for a hug in the middle of an emotional breakdown while upset mother doesn't know to hug in the first place,
---not crying when mother died because she was so mean and experiencing granddaughter's tears of said mother/grandmother,
---being young with these conditions and making decisions about marriage and children,
---watching friends and family our age go on with their lives while grieving we cannot keep up with them,
---how
healing may go up and down the family line of ancestors and parents to
children and their children with simple acts of courage in our own
little lives even if we were forced by our therapists to act (about
abuse),
---and a lovely poem of appreciation for strangers who offer help (printed below),
---women talking about many women's issues so, was it coincidence no men called?,
---or, maybe men did call and never introduced themselves?
POEM "The Other Side of Fear"
Written
after a bout with breast cancer... but before CFIDS, this poem is the
only piece of writing Valerie has ever changed after having it
published. In addition to reading it for us, she told us on the
EGG call that the CFIDS is what taught her the last verse... Its
from the book, A Time for Healing.
January 11, 2007 10 PM- International Thank You Day Conference Call
Wow,
10 pm is really late for some of us, but somehow it was still worth it
with yawns. Our Hawaii member, 5 hours behind us, really liked that
time.
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