Message from the late Georgianne Jacobus
Georgianne (Georgie) Jacobus, a most expressive and
eloquent spokesperson for Williams people, died in 1995.
Georgie touched the lives of everyone she met. She also
left a message to families,physicians, and researchers on
WS that, if heard, will have a long lasting effect on the
lives of all WS people.
Georgianne Jacobus
(October 24, 1942 - November 18, 1995)
In Memoriam
Howard M. Lenhoff
Georgie first entered our lives at the 1990 Boston
convention of the
Williams
Syndrome Association. "I am going to address the
doctors," she told us when she heard that our daughter
Gloria and I were going to make a presentation to the
Williams syndrome (WS) professionals during the final
session of their symposium. She was the last speaker, and
fittingly so because her powerful well-delivered
extemporaneous speech put all of the previous presentations
in their proper perspective. That is, in the eyes of those
with WS and their families, The key issue was to have
doctors and researchers treat Williams people with
understanding and compassion as human beings, not routinely
as objects for their researches.
But Georgie said it better than I, with all of my
scholarly training, could do. She was unique. She could
speak better extemporaneously than the majority of speakers
at professional symposia. She could say what probably many
WS individuals feel, but never say. As WS parent Dr. Murray
Krieger, father of Cathy, said on National Public Radio in
December, 1994, "What do they (our WS children) feel about
having Williams syndrome? What are they thinking about when
they wake up three o'clock in the morning? I don't know and
don't think we will ever know. Those are the things they
never tell us."
Georgie was a Williams person who could and did tell us.
As a tribute to Georgie, and to give you all some thoughts
to remember her by, I have transcribed the talk that she
gave at the Boston convention and present it to you with
only some minor editing. The words in capital letters
indicate her emphases.
I'm not used to microphones, but what I'm here to
say is "wow," because we have been fighting for Williams
syndrome for many years. And thanks to ... [you doctors],
we are now soldiers, soldiers of the cross. I am a very
religious person and maybe a lot of people may not
understand why, but my talking to you helps me understand
what goes on in my own life because inside I am a very
angry person. - a very emotional person because I get fed
up with doctors who tell me that it's all emotional, and
not physical. I put myself in a position last April to go
into a place where I thought that they would help me. And
all they did was to tell me that I was mentally retarded
until the last week when I left. And that was that they
found out that I had a thyroid condition.
Can you imagine a person who has chronic pain
being laughed at by a neurologist because he or she is in
chronic pain? When are we the people who are adults, and we
the people who are children going to be able to communicate
with the doctors and let them know WHO WE ARE?
We are human beings just as much as anybody else.
The only problem is that the monster has not been drowned.
You can tell that I am very angry. What I am here for is to
ask you to do me a favor. These people need you. I need
you. I need you very much... . Because everybody has given
me seven pills and doesn't know which end is up and then
tells me six months later, " Well you've got a cardiology
problem, well you've got a bladder problem, well you got
this, you got that, you got something else, so let's shake
you up with medicine."
That is not going to help a chronic pain patient.
What chronic patients need is a lot of love and care, [to
be] held close when they cry, and not have a doctor say
"What is your complaint today baby?" This is what I hear
all the time with doctors. "What is your complaint?" The
problem is we have problems, not complaints.We have a
medical disorder that we need to fight ... . Because if we
don't, that monster is going to get after us.
And another thing we need to do is to have a
hospital or a place where Williams syndrome people can come
to you doctors and say, "I have a problem" and not be
afraid sitting in the office having a doctor stare you in
the face and say, "I don't know what to do."
You are important to us because We need you. These
people who are out here this week need you more than you
will ever know. And just knowing that seventy one doctors
have been here this week ... we are thrilled to death.
To me I've gotten the biggest birthday present
that anybody could ever want - to be able to speak to
doctors, instead of sitting down and talking to doctors for
fifteen minutes. When you have a chronic pain patient, you
can't work things in fifteen or twenty minutes. It takes
longer than that ... .
If it wasn't for the
Williams
Syndrome Association, who I love dearly and I love you
people, I wouldn't be here today saying what I really feel.
It's been inside of me for years. Because it hurts. Its
painful. And when you find out that you have Williams
syndrome, and people laugh at you, and parents don't
understand who you are. [Turning to Gloria, who just sang
and played her accordion for the professionals.] And
Gloria, I want to tell you something. I am very proud of
you for coming up here today and doing what you are doing.
That movie means that you really are [Bravo] Gloria.
Another thing is that I am going to go home to a
place where Williams syndrome is there, but nobody wants to
get in touch with anybody. Nobody cares about anybody else.
All they care about is they have to rush here, they have to
rush there ... .
[My talk is] very painful ... for you too. I
realize that, doctors. But sometimes it is painful for us,
and we don't get the hip hooray that normal people do. I
saw a little child on the plane who is normal. I was able
to hold her. Hold her in my arms. Rub her hair. And think,
God, how I would love to have a child of my own, God, would
I love to be loved by a man (pause, tears). Excuse my
anger. But I am frustrated. And I know you people are very
tired of hearing all these things. But I love you all very
much. And that's why I came. Because this is the best
present anybody could get. To be able to talk to people who
love you, and realize that you are just not mentally ill.
Thank you very much.
Although since 1990 I have been with Georgie about a
half dozen times, her words haunt me to this day. We met at
a number of WSA conventions where Georgie usually served as
a hostess and helped at the registration desk. Twice we met
on an airplane, once by chance and once planned, going to
meetings of the board of directors of the
Williams
Syndrome Association. When Gloria was run over by a car
four years ago [1991], Georgie phoned and offered to stay
with us to help out in those most trying of times. And
frequently she would just phone to talk, because she felt
alone and wanted to hear a comforting and supportive voice.
One of the last times she phoned me was when she was not
reelected as the Williams person to serve on the board of
directors of the
Williams Syndrome Association. She was sad, but happy
for her successor. I tried to cheer her up by reminding her
that she was the first Williams person ever to serve on the
board. I made the analogy between her role as the first
Williams person to serve on the board, with George
Washington, the first person to serve as President of the
United States.
I said, "Georgie, just like George Washington, you were
the first. And just as we will always remember George
Washington as father of our country, we will always think
of you as the first to start the tradition of having the
board members hearing directly from a Williams person, to
look at Williams people, as you said in Boston, as human
beings, as people who need to be understood and loved.
Yes, Georgie, you were the first, and you said it all as
no one else could. We love you and we will miss you. We
will not forget. I am requesting that the
Williams
Syndrome Association and the
Williams
Syndrome Foundation give copies of your 1990 talk to
all researchers and physicians working on Williams Syndrome
and making presentations to meetings of the Williams
syndrome regional and national groups.
You have left all Williams people and their families a
treasured legacy. You will be missed.
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