Speeches - Barriers to Recovery

BARRIERS TO RECOVERY
CRPC PANEL OF 5/11/93
by Dr. Chuck Elliot

Preface

A.    My introduction.
    I've been writing a book about my experiences and those of others on the receiving end
of the mental health system for 5 years. It's called Crazy Pages. I've condensed these 5 years
of writing into 5 sentences:

    1. I was diagnosed mentally ill in 1982 while attending a computer convention in Las
Vegas.
    2. For the first 6 years as a client, all I did for treatment was to see a shrink once a
month, take meds and go to support groups periodically.
    3. About 4 years ago I started to go to political and policy groups, am now on 6 mental
health boards and groups, am an officer of some of them and won a county recognition award for
my leadership for one group.
    4. I started to write, edit and publish Chuck's Newsletter which is about mental health,
have now published 20 issues over a 5 year period and was nominated for the county media
recognition award for it.
    5. The best thing that happened in my life was meeting and marrying a wonderful
woman named Diann.

B. My definition of recovery involves coming to terms with an incurable disease, not really
being cured. The word "recovery" regarding my being diagnosed with the mental illness of
manic-depression is really the phrase "on the road to recovery". To me, being on the road to
recovery involves 1) being knowledgeable about my disease and its medications and 2) being
politically active on behalf of myself and people with my particular cause, mental health.

C.    When I thought about tonight's topic, "Barriers to Recovery", 1st I thought of what is
supposed to support recovery. I came up with more than 14 categories but I've narrowed them
down to 6 to talk about. [ones in boldface]

    1. Significant others include the categories of:
        family, friends, doctors
        [, case managers, groups]
    2. Institutions and their staffs include:
        hospital, board & care
        [, residential treatment center and day treatment]
    3. Entitlement administrations include:
        Social Security
        [, Medi-Cal, Unemployment, State Disability
        and Workman's Comp]

D. Then when I thought of what are Barriers to Recovery, I came up with these same 6
categories. That is, those which ideally should be supportive areas are sources, sometimes very
strongly, of barriers to recovery.

Significant Others

1.   Family.

    Support.
    I have a very small family--no parents, no siblings, no kids of my own (I've just inherited
3 stepsons by marriage). I have some aunts, uncles and cousins [4 aunts & uncles, 6 cousins
and their husbands and kids] but I haven't seen any of my family for 3 years and others for 12
years. The attitude of my family is best described as cordial but not close. I don't think this has
to do with my illness. I think they just choose to live their own lives and not to make the first step
at contact.
    They don't talk to me about mental illness but 1 aunt and 1 uncle donated to my
newsletter about mental health, Chuck's Newsletter. Another aunt was very supportive on the
phone long distance when I was in the County Psych Hospital - CMH, telling me about an
advocacy group in Los Angeles that she thought could help me. Otherwise, there has been no
active contact or support from my family.

    Barriers.
    I cannot say that my family has posed any barriers to my recovery. There is one non-
fault barrier, though, the fact that I was adopted and I don't know my real or birth parents. Some
people say that finding my birth parents would help me to understand my illness because it is
probably hereditary. I don't agree for this reason but I am curious to find them and am about to
start the search again. I did a brief search about 6 years ago.

2.   Friends.

    Support.
    In the past 5 years, virtually everyone I know is mentally ill--people in mental halth
groups, living in a board & care with 46 mental health clients, my past girl friends and now my
wife Diann--in fact at our wedding, 5 of the wedding party were mentally ill, the bride and groom,
the best man, the matron of honor and the ring bearer (and 1 of the ushers has just qualified).
The people I know who are not mentally ill are employees of the county mental health services
and private mental health services. So my friends and acquaintances are very supportive
because they are mentally ill themselves. My associates whom I work with also are very
supportive because they choose to work in mental health.
    Between 5 and 10 years ago, when I had relationships with
women who were not mentally ill, most tended to be supportive of my mental illness. One went
with me to an appointment with my shrink. One had been a financial contributor to CMH for a
number of years.

    Barriers.
    I was on a panel about stigma in April 1992 that COFA -Clients and Others for Action -
presented to the CMH Treatment Team. My talk focused on 2 girl friends who instantly dropped
me when they found out that I had been admitted to a psychiatric hospital. One of them never
returned my 43 phone calls and we never talked again.
    Another girl friend, who had been very close and who was with me when I had my first
manic episode in 1982, said that I could only call her 1 minute per month on the phone and that
we couldn't see each other. When I asked if it were because of my psychiatric diagnosis, 1st she
denied it and said it was because of "too much excitement" that I was going through and that she
couldn't handle it. She then admitted that my illness was an important factor in her decision to
break up.
    I consider both of these women to have fallen into the trap of the stigma against the
mentally ill. Being discriminated against because of this stigma by someone you don't know is
understandable, but being rejected because of stigma by someone you love is very hard to
accept.
    These sudden terminations of relationships were barriers to my recovery not only
because each was the loss of a supportive person (who was supportive of me prior to knowing
about my mental illness) but also because each incident generated negative feelings towards
myself for being mentally ill. I had negative feelings as though I had done something wrong but I
knew that I hadn't. Now I know all I had done was to have a chemical imbalance which is not a
crime; it is not illegal, nor immoral.

    Overall.
    Of these 2 areas, supports and barriers, my friends and acquaintances have been far
more supportive than being barriers.
    I'm writing a chapter now for my book, Crazy Pages, about relationships between
mentally ill people. The chapter is called "Love and the Mentally Ill". I'll be exploring various
thoughts in this "love chapter" about my experiences and those of other people about loving the
mentally ill, both on a social and sexual level. Two areas are--1. socially being only around other
mentally ill; 2. whether being only around other mentally ill helps or hurts one's own mental state.
For the exploration of my personal experiences, the chapter will culminate with Diann becoming
my wife. She is the most supportive and sympatico person of my life.

3. Doctors.

    Support.

    I always consider my doctor to be the top person--besides my wife--in my support team.
The most important thing to me about my doctor is to keep my meds on target--raise, lower,
change. Meds are the most important factor to everyone. In my 10 years as mentally ill, the
only concern people ask me about when I'm high is about my meds--they don't ask if I'm going to
a support group. They then might ask about sleep patterns, stress factors and dietary questions.
    The second most important thing to me about my doctor is as an information source--I
ask more questions to doctors than most people, I'm sure.
    I've had more than 20 shrinks and most were good, some I liked and I have one now
whom I plan to keep, Dr. Fred Berger. Fred and I had instant rapport--born on the same day and
year, born in the same city, the same religion. Some say we are twins.

    Barriers.
    Now that I've said those good things about doctors, here's a couple seconds on some
notable exceptions, 3 doctors from the county.
    The first was my doctor, on and off, for 3 years. She must be the most experienced
shrink in the county and we had good rapport, but at least a couple of things turned me off. I
would take notes at our sessions and she said that this was logorrhea. I said, "What, diarhhea of
words?" and she said, "yes". She said my writing indicated that I was manicky. I said that I was
a professional writer with 9 years experience and that it never bothered anybody at work when I
wrote. She said, "Society wants you to perform at a lower level." This outraged me. She
explained that I would do better if I did less. Shades of 1984/Brave New World and
"doublespeak".
    Same shrink, worse example. While living in the board & care, I went to the house of
the ex-president of Mensa to use their computer to input articles for Chuck's Newsletter. Doing
that and listening to him talk all night, I didn't get back to the board & care til 6:45 a.m. So my
shrink felt that I was far gone and prescribed 2 shots of Thorazine to tranquilize me. Thorazine, I
found out later from her, is supposed to wear off in 6-10 hours. In my case, its effects lasted for
10 weeks, causing me to be in a moronic state for that time period, as documented in Chuck's
Newsletter.
    The second doctor was only my shrink for a very brief time. He instantly rubbed me the
wrong way. I got him fired from my case by going to his boss.
    The third doctor replaced the second one. I emphasized to this new one that I was now
allergic to Thorazine because of what it did to me and that it said that I was allergic to Thorazine
on the cover of my patient record. So he instantly prescribed Thorazine. I tried to fire him, too,
but his boss said that one firing was my limit.

Institutions

4. Hospital

    Support.
    A hospital is supposed to be a supportive place with your recovery as their prime goal.
The key word that is always used is care. In a psychiatric hospital probably most of the staff is
caring and does things for you, gives you a smile and encouragement. This includes the nurses,
the OT staff, the activity staff, and so on, and sometimes even the doctors. I've had good
rapport with many of the staff next door at CMH and some private hospitals.

    Barriers.
    On the other hand, the negative side of the coin is probably what you hear more about
than the positive. Henry doesn't want us to tell "horror stories" but we all have them. Very
briefly, here's some negative things.
    My first 2 days as a mental health client I spent strapped down to a bed that was bolted
to the floor, no sheets, with a TV camera straight overhead. All of this and more contributed to
my wondering if I would be in this secluded and restrained environment forever. This was not for
my recovery. It was more for staff convenience. I figured out later that it wasn't a special
mistreatment for me but the standard operating procedure for new patients at Southern Nevada
Memorial Hospital.
    My worst barrier to recovery was at Mesa Vista Hospital when 2 staff wrestled me to the
ground over something I said and one of them gave me the most excruciating pain in my life as
he came close to bending one of my wrists all the way backward. For my verbal crime, this was
a punishment that was not fitting the crime. To me, this staff violence in the exercise of
discipline was not warranted, was totally demoralizing to me and definitely did not put me in a
mood to recover, i.e., to contribute to my treatment plan and "get well".
    To conclude this section, I'd like to quote from my letter on behalf of COFA to the
hospital workers union in January 1992:

   "The mentally ill are faced with a lot of stigma and don't need any more
stigma coming from those who treat them in the hospital"

5. Board & Care.

    I've written an 83-page chapter for my book, Crazy Pages, that talks about the board &
care that I had the misfortune to live in for 2 years, Char-Lou Manor. I can hardly boil down 83
pages to about 2 minutes except for my favorite line:

"The clients say that they call it a Board and Care
because we're bored and they don't care."

Entitlement Administrations

6. Social Security or as I prefer to call it, Unsocial Insecurity.

    Support.
    Social Security supports recovery because it gives you money without which you could
not afford rent and would have to live under a bush in Balboa Park. The fact that you don't have
to live in the park gives you a partial positive mental outlook that contributes to your well-being
and thereby your continued recovery.
    I've hardly ever heard anybody say anything nice about Social Security in the last 10
years and that's all I can think of to say about them that is positive.

    Barriers.
    On the negative side, I and most clients have no problems in thinking of negative things
about Social Security.
    Boiling it all down, here's a couple summary remarks. My wife Diann says that if you
don't go into Social Security disabled, by the time you walk out of their office you will be disabled
by what they put you through to get your entitlements. My feeling is that you're getting some
money for nothing--even if it's based on past earnings, you're not working for it now to get it. So
they probably feel they have to put you through your fair share of abuse in order to feel that you
deserve your benefits.

Summary

    I've tried to balance out what I've said for each support versus each barrier. We all need
a support team behind us. When the support becomes a barrier, we should rise to correct and
reform the source of negativity, whether it be a family member, friend or acquaintance, doctor,
hospital, board & care, government agency or any other source.

Fin

file=barriers.fin Mon 5-10-93 3:20 p.m.

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