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Friday, October 30, 2009

#29~ "Did you FEEL the Luv Today?

I WAS going to be one of the first to add
all of the links here from all of the Wonderful
Fellow ME/CFS folks that videod the webcast
and have put most of today's up on
youtube already, but after 2nd thought
I have been SO MOVED by what I Personally
Experienced today that I wanted to post
about the "Experience of Today."

After 22yrs of neglect by the medical profession,
disbelief by friends & family, yada, yada, yaga..
I have to say that unequivocally TODAY was
one of the BEST days I have Experienced
in MANY years.. and with strangers from 
Around the World together in Unison.

While 400 of us were watching the webcast
many of us were also on Facebook and using
it as almost a chat, quipping in like a sports-
casters with play by play commentary for
those that only had dialup or could not get
access to the stupid "Real (NOT) PLayer"
that they used to broadcast it....
I mean honestly, I have seen BETTER
broadcasts from USTREAM. The quality
and connections today were Terrible.

That aside... it was The Single MOST
Emotionally Touching Day and SO many of
us experienced this event "jointly",
chatting as we went and shared the
experience and our feelings, for better
or worse, and even shared our Cries of Joy
and our Tears of Pain at those that
STILL do NOT "Get it."

I do want to mention something that
may sound corny.. I don't care.. becuz
it was REAL and palpable today...
Because of the availability of this
invention called the internet...
SO many of us that were "Joined in Unison"
today witnessing this CFSAC meeting and
hearing all of the testimonies and the
Public comment sections and the
(to coin some one else's phrase ;-)
*you know who you are* ;-)
The Vommittee's discussions...

All the while WE were having an
experience that we have NOT had in
the over 20 yrs that many of us have had this
PofC Disease... We literally had a what I
could relate to back in the 60's, but here
as the internet version of a
"World United Group Love-in"
Totally FILLED me over the brim with
GOOD emotions and Gratitude for all
of my fellow Survivors out there..
It was and Great to meet you..
and BREAK this fricken ISOLATION
we have been jailed in for SO long..

Later, I spontaneously in my head heard
myself singing this WE have been
Warriors, finally feeling Support from each
other today, from literally around the world,
and I have not felt anything similar since
the 60's... so with that I will leave you
with my heart-felt feelings tonight...
NO matter what tomorrow brings...
I want to revel in tonight's Bliss
from OUR victory of Unity and Support
& sharing that we experienced today..
I know many of you felt it also....
We will always have many days to deal with
the technical aspects of the speeches and
nit pic what needs to be done yet, but these
TRUE Moments of Heart-felt connection
come so Rarely... I wanted to Honor it
FULLY and Give it it's due.
It felt SO fricken GREAT I slept like a baby
and had a 3 hr Power nap even after having
been UP - all night before the meeting
in anticipation, so my butt was dragging
but I only needed a 3 hr nap and woke up
filled even MORE with this song that
Truly almost every word depicts how 
I feel tonight...
TOTALLY Blessed and Grateful
no Matter what tomorrow brings..

I hope many of you also basked in the
feelings I did tonight... is this like a
"Runner's HIGH?" or just a

*hugs* to all who were there today...
and to all the new members of our
"Chosen Family."


  1. hugs to you - i was up til 3am last night the buzz in my brain was so strong!

  2. Great post.
    With this news of XMRV retro virus and the IDSA lyme Disease review presentations (ILADS ones) in July. 2009 has been an enormous year for medicine and for those suffering with chronic illness, ignored by their doctors and health care officials.

  3. Oh Mac, I wish I was lucid enough to give you the kudos I think you deserve for finding a way to express what so many of us experienced yesterday and today.
    I have never felt such a unique connection with other human beings in such a complete and wonderful way.
    Thank you for becoming a member of my 'chosen family' and for being so eloquent and willing to share.
    Lisa :)

  4. Well writen Mac! I LOVE LOVE LOVE your term