Please keep in mind though that these are personal accounts,
I cannot personally authenticate them.
-- Madeline Gonzalez
_______________________________________________________________________________
Comment from Sylvia Caras:
"Stories that instruct, renew, and heal provide a vital
nourishment to the psyche that cannot be obtained in any
other way. Stories reveal over and over again the precious
and peculiar knack that humans have for triumph over
travail. They provide all the vital instructions we need to
live a useful, necessary, and unbounded life -- a life of
meaning, a life worth remembering."
Clarissa Pinkola Estes, Ph D
from the back of the cover of her _The Gift of Story_,
Ballantine 1993.
--------------------------------------------------------------------------------
> From Ardis Hanson
>
I have no problem with anyone using this with the identifying header.
Ardis
> I am the librarian at a state mental health research institute. The Institute
> has developed a number of programs for persons with mental illness and treats
> a diverse population of consumers/clients. The population ranges in age from
> children to the elderly with a corresponding number of diagnoses.
>
> The internet has made my information provision much easier and more
> enlightening. Not only am I able to provide first-hand treatment and
> psychopharmacological information to our faculty, but I am also able to
> enlighten staff and faculty from professional and consumer points of view on
> issues of treatment and interaction.
>
> It has enabled me on a professional level to understand the complexity of
> issues in the provision of mental health services, care, and treatment from
> both the providers' and consumers' POVs. It has increased the level of
> awareness of many of our faculty and staff to the amazing number of resources
> and people available.
>
> The fact there are groups of survivors out there is of tremendous importance
>to the clients and consumers who frequent the library. I print many of the
>client-oriented issues and "informationals" and send them to the clinical
units >for the clients and the staff to read and respond to.
>
> In addition to the in-house educational/informational efforts, it has been a
> wonderful resource for networking with other mental health professionals as
> well as the other library professionals who have little (they think) contact
> with consumers or survivors. I have been able to direct librarians to lists
> > and net-resources that are of help to them and their constituencies.
>
> Finally, as a consumer myself, I find that I can help and be helped through
my interactions on the internet.
>
> Ardis Hanson
> Library Director
> Florida Mental Health Institute
> 13301 Bruce B. Downs Blvd.
> Tampa, FL 33612-3899
>
> hanson@hal.fmhi.usf.edu
-------------------------------------------------------------------------------
From Janet Schram
Internet, bulletin boards and even my computer in general have all
helped greatly in my struggle with depression.
Bulletin Boards:
I have spent several years isolating from other people. It
isn't that I'm afraid of people, I just have a very difficult
time getting out of my apartment because of mild agorophobia.
Since I started using local bulletin boards last summer
(1993), I've spent hundreds of hours at my computer chatting
with people, playing games and downloading files. I've made a
lot of friends and have even met a few of them. Having this
contact with other people has made a big difference. I don't
feel so cut off from life anymore.
Internet:
Internet has enriched my life in many ways, the biggest being
on a discussion list called "Walkers In The Darkness". This
list is like a support group for people who suffer from
depression. I have learned a lot about medications. Most
importantly though, I don't feel so alone in my depression.
When I post messages about how I'm feeling, I know that others
will know exactly what I'm talking about and how I'm feeling.
I always get replies full of support, and sometimes get some
very good suggestions.
On this list we are fortunate to have a psychiatrist that
participates. He is extremely knowledgeable of medications
and the different types of mental illness. He answers several
questions on a daily basis. Because of some things he has
posted, I decided to stay on my present medication even though
I didn't feel that it was working and was having difficulty
with tolerating the side effects. By "hanging in there" my
side effects decreased greatly and the medication now helps
enormously with my depression.
Computer:
My depression has disabled me to the point that I am not able
to go out and work at a job or even do volunteer work. I
hadn't been productive in any way for a long time. But
fortunately, through Internet and bulletin boards, my computer
provided me with not only entertainment and socializing, but
I've also learned a great deal about DOS, several software
programs, and computer equipment. Since last summer (1993), I
have been able to focus on learning and using computer programs
for several hours a day.
Because of my interest and success with my computer, I have
decided to start a home business. I will be doing word
processing, desktop publishing and medical transcription. I'm
currently on Social Security Disability Income and am applying
for the PASS program which will help me put away money for the
equipment that I need to start my business. I'll be ready to
start in about 16 months. In the meantime, I'll be teaching
myself more programs and more about running a business.
I have subscribed to several Internet lists regarding
different aspects of business and am already learning a lot.
This also gives me a place to ask questions on business,
computers, software programs, etc.
Needless to say, the new "Super Highway of Information" has been very
beneficial to me education-wise and in my personal life. I have
gained a lot of self esteem in having learned all that I have, using my
computer and modem. After recently having tried going back to school
on two different occasions and failing, I started feeling very down
about myself. This has given me a real boost in self confidence which
was much needed.
I look forward to furthering my knowledge with this technology and
hope that others can have a chance to benefit the way I have.
Janet Schram
Quincy, MA
Chicago@ace.com
CJ> You have my permission to post my message with the header.
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Anonymous:
Two years ago, I was diagnosed as schizoaffective and began
meds that put 70 lbs on me and zombied me out. Finally
having had "enough already" I stopped taking my meds. I
lost 15 pounds in 5 weeks and was fine. However, I had an
argument over the phone with my mother in which I actually
had feelings of anger and in response I RAISED my voice
which was very much out of the ordinary, or at least had
been out of the ordinary for the two years I was on
medication and zombied out. Extremely upset, my family
rushed me to the ER and had me admitted temporarily to the
psych ward.
I went back to work the next day and looked around on the
internet for somebody who could understand what I was going
through. I needed acceptance for who/what I am and I was
lonely for someone to talk to that wouldn't edge slowly away
from me as I explained myself. I found THISISCRAZY* and was
then pointed to PENDULUM*. To my great relief I found out
that I was not the only "crazy" person who was out in the
world and functioning very well thank you.
That afternoon, my father called me into his office, (we
both work at the same university) and told me that if I did
not go in to the hospital voluntarily that they would have
me committed involuntary.
I posted:
If you don't hear from me for a while, it's because I
am unable to reach the net. Have a Doctor's
appointment out of state today and I do not know if
they will put me in the psych hospital or not, nor
if I will have access to the net.
I asked advice from the internet and was told to go in
voluntarily and contact the hospital's Patient Advocate. I
immediately requested a Patient's Rights packet to fill out
to approve my own care. This too came quickly from
internet.
One of my replies was:
The NET is growing!! Find out how or if the hospital
is connected to the Internet. Take a pocket modem 2400
baud and a small laptop. Then all you need is a
telephone (single line). Have your admitting doctor
ORDER access to electronic communication if at all
possible. I know it reduced my anxiety level by a
factor of 10 to know that I could stay linked to the
Networks.
Any idea how long you will be confined?? You may want
your family to have a private phone line installed as
part of your recovery process.
Dan Fisher, MD, another ThisIsCrazy subscriber, offered to
write me a note to the mental hospital and treating
physician so that I would be given access to the internet
during my hospital stay. His only caution was that I not
use it to the exclusion of face-to-face conversation which I
find very healthy advice.
The very expensive ($125 for 45 minutes) Shrink my family
sent me to said that I certainly did not need to be
hospitalized and rediagnosed me. (My family was rather
perturbed when he wouldn't put me in.)
Had it not been for the internet, I, too, would have assumed
that I had best go back into zombieland and quit making so
much trouble for everybody thus tempting them to put me away
for long periods of some very boring and psychiatrically
nonproductive time. Much less be away from my children,
husband, etc.
I feel so important and proud of myself for telling.
Internet can keep people like me functioning in a society
that often unwittingly puts stumbling blocks in our way.
Boy do I feel brave.
--------------------------------------------------------------------------------
Anonymous:
My wife and I found out from the pendulum list that tegretol affects
the efficacy of birth control pills. Her ob/gyn knew this, but didn't
know she was on tegretol. Her psychiatrist knew she was on tegretol but
didn't know it affected the birth control effectiveness. Because
someone on this list alerted us to the information, my wife saw her
ob/gyn who appropriately modified her birth control medicine. I
wouldn't say the list "saved our lives" in that respect, but it sure
kept things a lot simpler than they might have become.
--------------------------------------------------------------------------------
From Paul Raine:
Carina Woodham was adopted. She spent lots of $$$ to find
her natural mother. Later, when she tried to locate her father,
she used community nets, e-mail, and on-line services to
locate her father in a fraction of the time. It saved
her both time and money.
----------------------------------------------------------------------------
Actually, the "success story" process IS in existence. At a community
information network here in Pittsburgh -- NeighborLINE (Neighborhood
Library INformation Exchange).
It is somewhat difficult to track these "success stories" but it
has been done. I agree that it is hard to quantify the benefits of the
networks we're all working to design and develop. NeighborLINE has been
around since 1988, and has been rolling along strong ever since.
I suggest giving Patricia Callahan, Director at (412)321-8365. She can
provide you with additional details concerning this "success story"
idea.
Regards,
CD Rogers, Professor
University of Pittsburgh
Urban and Regional Planning
Information Consultant to The infoWorks Partnership
----------------------------------------------------------------------------
From Sylvia Caras
My Story
Contents
Introduction
My Personal View
Politics and the User Movement
The Value For Me in Communicating Electronically
Electronic Mail
The Practical
Process
Specific to madness
Conclusion
Introduction
Stories of internet impact on persons' lives are being
collected as part of the move to develop community networks.
I asked others to write up and submit their own stories; I
worked on the history of ThisIsCrazy. And I realized that I
ought also to tell my own story.
My story explains my attachment to electronic internet mail.
My story looks at why I am so satisfied in these
traditionally, male, young, sometimes cutthroat, retaliatory
surroundings, why I am at home here even though I am a
grandmother, inclusive and conciliatory.
And my story relates why electronic networking is especially
important to me as a person with a psychiatric diagnosis, a
person with a silenced voice, a mad woman.
My Personal View
Fundamental to owning a psychiatric diagnosis is the
experience of exclusion. On the internet, I do not have to
wear my anti-exclusion armor. The essential me may
subscribe, unsubscribe, post; to disclose, I have to overtly
reveal most of my categories and classes.
On the internet, I am stretched; I am learning a new set of
nuances, a new way to see what another means, a new way to
be available and responsive. I receive enough feedback-
that-I-believe to demonstrate to me that I am good at what I
am doing. The corroboration sustains and energizes me.
Politics and the User Movement
In recent years, the user movement has had no dependable
national information source, no newsletter, no organization,
no resource directory, no way to grow as a movement, and,
what exasperated me the most, no opportunity for newcomers.
Command and connections remained with the networked old
timers.
I had something to say, I had an experience and a point of
view. I wanted in.
The lack of network was explained away by "no money," "no
funding," "we are all volunteers."
I knew how to make a beginning with not too much money.
And I know how to leverage the internet costs.
My own goal was that information and knowledge should be
shared; I wanted a tool so that everyone should have access
to everything. Then each could do as they wanted.
As a movement, we have been reactive to the models we knew,
authoritarian and paternalistic. We became anarchic or
compliant. The internet is a milieu almost without models
and that forces empowerment without much personal or
systemic resistance. The internet is involvement. And
involvement on a human, anecdotal scale with unsung people
and modest events creates a demonstrable critical mass of
caring and community.
The Value For Me in Communicating Electronically
Electronic Mail
The Practical
Effect Compelling effective use of my self, my time.
Universe Reaches an expanded population, a population
large enough to meet interests too
specialized for face-to-face communities.
Content Electronic contacts have more clarity, are
less fuzzy, are shorter.
Time Less overall time than voice, snail mail, or
fax
Speed Faster potential turnaround than for snail
mail or fax.
Turnaround Turnaround for voice mail depends on whether
desired person was reached, or human or
recording device took a message.
Cost Reduces long distance charges for voice
calls.
Reduces snail mail postage costs.
Reduces cost of supplies -- envelopes, paper,
postcards, labels, staples, duplicating, and
laser cartridges.
Process
Mental A mostly mental, very sedentary activity.
Undemanding Requires less of me; can use even when I am
low, tired, or otherwise ill at ease with
myself.
Informal Has the informality of speech and the focus
of writing.
Accurate Quoting creates feedback and accuracy of
understanding.
Control I control the pace of my participation; I may
reply spontaneously or thoughtfully.
Balance My concision and another's verboseness stay
in balance better than in an oral dialogue.
I don't feel overwhelmed, or as if I have
less of a chance.
Clarity I have to deal with fewer levels of
communication. The hidden agendas and non-
verbals of verbal exchange, which also
require attention, are reduced, the pauses
and intonations. The stroking and grooming
of social exchange is reduced. Impact of
non-verbals, social station, work rank, ...
is reduced. Also eliminated are the status
cues of stationery and the more formal
language (sometimes generated by levels of
preview and review of print).
Sensory ease Sensory input is reduced; no auditory, no new
kinesthetic; no visual except words. Since I
am extremely aware and often experience
sensory overload, this reduction is very
functional, calming. Like paper (as compared
to oral), the level of input is reduced.
Challenge My thinking is challenged more than in oral
communication.
Focus More focus, less foreplay. Courtesy is
present and abbreviated. Dialogue is more
content oriented; I am a thinker and the
content is why I am communicating.
Rhythm I may participate often without being greedy;
I may observe without feeling uncooperative.
Choice I may or may not read another's post; no one
has to read my posts.
Rules I may respond without invitation and without
regard to "appropriateness" of my
relationship to the author, without deference
or humility, merely with content.
The only place where I've been attacked is
when I've posted from the user point of view
about disability and coercion issues to one
of the health care reform lists (HEALTHRE),
and to the psychiatry list. On the
psychiatry list there was as well
appreciation and thanks.
Level fields The real action is not behind the
scenes; the real action is fully public.
Valuing I am measured by the content and style of my
post, not my age, presence, education, bond
weight of my stationery, pearls, ... .
I feel my good mind is valued; I feel I am
valued.
Multiplicity I am able to respond from curiosity,
from pragmatism, from philosophy -- to
one place, with one post.
I like labeling myself a cyberjock.
Heard Someone listens; usually someone replies; I
am heard.
When I'm heard, I feel appreciated; I feel
worthy; I feel understood; I feel respected;
I feel affirmed.
Manageable Most of the e mail and internet obstacles are
obstacles of software; that's easier for me
to challenge and adjust to than obstacles of
personality.
Democratic Instantaneous transmission of same to many;
transforms the information pyramid into a
line.
Tailored Customized.
Action is in real time, is evolving, protean.
Reduced risk There's no risk to access; there's no risk to
lurk.
There's minimal risk to post.
And I am involved in a safe way; I can
marshall 200 People Who in 200 seconds if
coercion is threatened.
(People Who is short for people who
experience mood swings, fear, voices and
visions. People Who was also the name of the
hand managed list that preceded ThisIsCrazy.
People Who existed from January 27 to April
16 1994. The first message went to 17
subscribers, the last to 56. On 062894,
ThisIsCrazy had 82 subscribers from 7
countries and was sending about 45 messages
per week.)
Constancy The resource, my community is continually
available.
Efficacy I'm good at this.
Concision I know how to write a one screen message
(maybe 125 words).
Congruence I know how to hear what another is writing,
and to post responsively.
State I'm present, focussed, not distracted (or I'm
in some other space). I'm less sealed off,
more involved not in a virtuality, but in,
for me, an expanded reality. There is an
intensity and an intimacy (Is there an analog
to hallucination, psychosis, a getting close
to this edge? It takes me a while to "come
back;" where have I been?)
Specific to Madness
Safety net I can tailor access to the best hours for me.
I can find support when I need it, even early
morning hours, without triggering crisis
responses, and without feeling judged for my
rhythms. The internet is continually
available, 24 hours, 7 days, even Christmas
and Thanksgiving and Super Bowl Sunday.
I can depend on access and input. This risk
of not being able to access is only the risk
of my own computer going down, my provider
going down, there being no electricity, or
worst of all, there being no messages in my
groups. Thus, I am minimally exposed, have
minimum vulnerability, need to put less
attention towards maintain defensible
personal boundaries.
Support Broadens knowledge base of People Who about
their label and its connection to other
labels -- allergies, learning disabilities,
chemical sensitivities, ...
Sociability Electronic involvement has led me to more
face-to-face involvement rather than less,
the isolation which concerned me. I feel my
assurance enhanced by my dependable
accessible community.
Lobbying Timely, effective, inexpensive
Direction Depression cast me away from the middle class
matron script that I'd learned when very
young. I drifted uncharted.
Conclusion
Commonality E mail reduces my negative exceptionality.
I find commonality and because of support, I
reduce the burden of uniqueness. Space is
created for my positive exceptionality.
Through e mail, I speak in a firm clear
voice.
SylviaC@netcom.com; owner ThisIsCrazy-L@netcom.com
June 29, 1994
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