In response to this email, let me say that I have absolutely nothing to gain
in reaching out to women who have suffered as my daughter has. It is an
insult to me to come back to the web site and read this letter. I have not
asked
for any financial backing from anyone. I am not a "cunning shark" ready to
rip
someone's story to shreds to use for my own gain. I am a mother that has
spent
13 years grieving over my daughter, only to have medical "professionals"
that we
sought help from leave us walking out of yet another office, with a little
less money
in our pocket and no advice, no help, nothing. We have been ridiculed and
told
countless times that she needs to "get over it" and take an antidepressant.
If it
were not for the God given tenacity that is within me, we would still be at
these
doctors mercy. NO doctor diagnosed my daughter.
Let me assure everyone on this site that I don't need your story for MONEY.
I happen
to have money. No, I am not rich, but I have my needs met and I do not need
anyone's story for my financial gain. I will let everyone on this site
decide for
themselves what kind of person I am. I know I am new, but God knows my heart
I was the one who ASK if there was a fund to HELP women that could not get
to
Germany. I offered to set aside $1,000.00 to start this fund. I was informed
by a personal
e mail that there was no fund and I was asked had I considered the costs and
the great deal of
work it would take to get the fund started. My reply to that personal email
was that
perhaps we should start one! There is work and costs on anything that is
begun.
And these my dear friends are MY facts.
karen
-------Original Message-------
From: adhesions@adhesions.org
Date: Sunday, November 17, 2002 05:51:01 PM
To: Multiple recipients of list ADHESIONS
Subject: Bev: My dear friends...
My dear friends,
May I share with you some facts about Dr. Wiseman and the use of Adhesions
Quilt stories, as I understand it.
Dr. David Wiseman has not only given " birth " to the International
Adhesions Society website - because he saw the need and had compassion for
us victims of adhesion related disorder (ARD) (which " we " named by the
way); but he also continues to work on our behalf every single day! And my
dear friends, he uses HIS money for the good of the cause. Dr. Wiseman is
far from getting rich from this site nor is he getting rich due to any part
of the IAS or issues surrounding ARD! Those are the facts!!
He cares about each and every one of you, who post on this site. I know
this because he speaks to me about everything he sees here! He knows your
names, your problems, your struggles to get help, your frustration and your
fears! He allows your anger to be shared on the message board - because he
does understand that as well!
He cannot possibly respond to every e-mail or posting; and that is why I
choose not to post as well. It is difficult to deal with the issues of ARD
that we have to deal with on a daily basis - just to try to implement
changes for the betterment of ARD, to try to respond to so many desperate
e-mails, and to try to spend time with family as well. Impossible,
exhausting and unrealistic - though I cannot speak for Dr. Wiseman on that,
I know it is that way for me.
Dr. Wiseman is not against anything that is progressive and productive for
our cause, ARD; but he is concerned that issues not be counter-productive
and be dealt with properly, for all. He is also responsible to protect what
you and I have placed in the IAS website; because if he did nothing to
protect your rights - and you found your stories being shared and used by
just anyone for anything and you started receiving e-mail from who knows who
for what - then I think we might have a right to be angry at him! But that
didnt happen here.
I understand "some" of the upset surrounding the responsibilities of the IAS
in the sharing of your personal ARD stories; however, I understand and
appreciate the sense of security that surrounds my story being under the
protection of the IAS! I placed my story on the Adhesions Quilt to be used
for the benefit and education of victims of ARD! But my ARD story has been
used " by others and taken seriously out of context without my permission -
to use "all or parts " of it for promotional use - for profit! I was
really shocked when I found out - quite by accident too!
Though we all want our personal ARD story to be available to help the cause
of ARD in the area of education and awareness - as well as to help others
hopefully to avoid walking the same path of suffering as we have - I do NOT
want my story to be used to misguide those who suffer from chronic pain and
disability - nor to profit others for personal gain! We cannot forget that
there most definitely exists "sharks" out in that big wide world of the web;
and these sharks are unscrupulous and cunning! They can strip your story
apart, twist and turn your words to support their cause - and then use your
name indicating you wrote it!
It is for this reason that the IAS, as well as many public access websites
and magazines - that allow personal issues to be presented - put a
disclaimer regarding these types of things for our protection. In the event
you find out that your story is being used out of context and without
permission (as stated within the IAS web site) you may have recourse to try
to stop it!
Without a disclaimer, you have no control over it; and you might end up
seeing your words - or most surely, your words taken out of context -
somewhere you least expected to find them being used!!! This is called the
real world!! It is very real and does happen!! Best to err on the cautious
side than to suffer the consequences as a result of not being as careful as
one can be.
A gentle reminder to people to seek permission for the use of personal ARD
stories - was out of respect and necessary for all who posted their stories
on the IAS. In this way, each one of us have the opportunity to know why
our story is being requested - and just how it will be used. Some people
might give permission for their stories to be used, others might not; and we
can respect either decision. Each author of the Adhesions Quilt stories has
the opportunity to make his/her own personal decision as to how their story
will be used. No one is to use your story - or be given your story for
personal use - without your permission!!! To me, it is that simple.
It is not difficult to ask permission - and no one seems bothered by that
anyway.
Ideas come and go; and in the past ARD stories have been collected for
various reasons, permission was asked and LOTS of ARD stories flooded in for
use. This can be accomplished once again, I am sure.
To remove your story from this most educational, informative and important
web site - the same web site YOU found useful at one time - is
counter-productive. When a new ARD sufferer "stumbles" upon the IAS website
- like some of you probably did - do you want to deny them the chance to
read and learn from your personal ARD story? You say you want your story
out there to help others; then why remove it from the IAS? Why?
May I add this food for thought in closing: A few of our ARD sisters, who
have their personal ARD stories on the IAS Adhesions Quilt cannot give their
permission for use - not now, not ever! You see, my friends, THEY didnt
survive to give that permission; nevertheless their stories did!! Thus
they speak from their graves! Those stories need no permission; because
once you're dead, you have no rights!
Please keep every one of your stories where they can touch a life! Share
them, post them 1000 times anywhere YOU choose; but I implore you NOT to
remove them from the IAS; because it will be on the International Adhesions
Society that you will touch the life of another victim of ARD - and not one
person associated with the International Adhesions Society will profit from
you doing that!
In peace and friendship,
Beverly Doucette