Table of Contents

Introduction
Chapter 1

Wounds of a schizophrenia sufferer

Chapter 2

Letter to God

Chapter 3

Diary Entries

Chapter 4

Parenting

Chapter 5

Family reactions

Chapter 6

Case Management

Chapter 7

Primary care

Chapter 8

Managing medications

Chapter 9

Life span

Chapter 10

Recovery and back again

Resources

Introduction
Schizophrenia is a biological disease of the brain. The symptoms range from a
break in reality, hearing voices that no one else hears, delusions and hallucinations.
Schizophrenia is a type of mental illness and probably the worst of all mental
illnesses to have. Schizophrenia itself has different types. One is paranoid type,
another having symptoms of a bipolar or manic depression in addition to symptoms
of schizophrenia. This type is called schizo-affective disorder and is the diagnosis
that I was given several years ago. According to some scientists this is the worst of
schizophrenia types. NAMI, the national alliance of the mentally ill conducted a
survey on mental health issues. One out of every 100 people have schizophrenia
symptoms of varying degrees. Only one third of schizophrenia sufferers receive
treatment. It makes me wonder what happens to the remaining 2/3rds of afflicted
people. Some, I suppose you will find in jails, some in homeless shelters and many
in places like skid row in Los Angeles and living on the streets. They may also be
found at the executive table, Universities, teachers and students. At the end of my
last hospitalization my brother asked the doctor why the afflicted stop taking the
medication. The doctor replied that a lot of the sufferers like it, even if they dont
quite fit in to society. Often times they hide behind eccentricity.
In the past many great people suffered from schizophrenia and still do. Artists claim
that if they took the medicine prescribed, quit drinking and drugging they would be
less creative. This is unfounded and not supported by the medical field. How much
more they could accomplish if their illness is treated. It is so obscure that the
individuals affected go about their lives as if it is the plight of all of us to suffer from
mental illness. There is no known cure at present; however, with new technologies
scientists are finding that there are differences in brain composition between the

mentally ill and the brain structure of normal people. Sometimes, a person can
have the brain in appearance of a normal person and still show signs and symptoms
of the disease. With more advances in imaging, and MR Is it is believed by most
scientists that we will find even greater differences in the brains chemistry and
biology between the afflicted and mentally well individuals and the results of
treatment before and after the onset of the disease. Hence, we are coming closer
to a cure. Most sufferers researched and tested are people at the early stages of the
disease with little or no follow-up twenty, thirty, or forty years after the onset of the
disease. I have been treated for the past 34 years and hope to shed some light on
the ups and downs and prognosis of the disease.

Wounds of a Schizophrenia sufferer

One of the first wounds of a schizophrenia sufferer happens with the internalization
of the diagnosis. I can remember thinking, this cannot really be happening to me. I
knew the stereotype of a mentally ill person and although I wasnt too familiar with
the meaning of schizophrenia, I knew I didnt want that label and quite frankly, I
didnt believe it.
My first hospitalization came after the birth of my son in 1984. He was about six
weeks old when the world started crowding in on me. I had four parents, two of
whom were steps, two father in laws, a mother in-law and several siblings both step
and natural. I was the first child to graduate from college, the first child married
and the first to have children. Everyone wanted a hand in my life. They all knew
better than me how to take care of my children. One weekend many of them were
at our one bedroom home. They were drinking, smoking, smoking pot and sleeping
on the furniture in the living room. Some were dabbling in cocaine.
Needless to say I was totally overwhelmed. When I went into the babys room
because my son was crying, my mother in-law prevented me from picking him up.
She said he had to exercise his lungs. He was crying so much and so hard that he
developed a hernia. They said they had to make him tough. There were all kind of
chatter going on and the television was blaring. I couldnt make sense of it all. I
developed an upper respiratory infection and became very sick. I would cry a lot
and then laugh uncontrollably. Everyone agreed that I needed professional help. I
was too volatile for the rescue squad to transport that evening.
The next morning my husband and his brother took me to the local hospital. I
became catatonic remaining quiet during the entire interview. I was taken to the

psych ward I knew nothing about. I was lead to a room next to the nurse station. My
husband and brother in-law followed me. The next thing I knew they were escorted
out. I panicked. I ran to all the doors, they were all locked. I was so frightened.
Three orderlies chased me and carried me to a room with a mattress and a window.
It wasnt very big. They threw me down, gave me a shot and locked me in the room.
I dont know how long I was in there and I didnt know at the time either. Two
nurses came into the room after some time and asked me if I wanted to smoke a
cigarette. I was relieved somewhat. The three of us were sitting and smoking when I
noticed the nurse Sheila was holding the keys to the room. I wrestled her for them
but it was two to one. My plan was to lock them both up and run. They left and
locked the door behind them. Every once in a while someone would walk by and
peer in the window of the door. I kept track of the days and nights with match
sticks. A little bird was visible outside the window and I sighed with relief.
The diagnosis was post-partum depression. The staff told me and the family that I
had a chemical imbalance in the brain. I thought I must be possessed. The dr.
laughed at me and told me that I wasnt. He was from India.
Days turned into weeks. There were Communion services every day, I tried not to
miss. I finally got out of lock-up known to the public as the quiet room. The threat
of it was continuous. After some time, I was allowed to go to the day room where
families and friends of the patients hung out. One day a male nurse was
threatening me with the quiet room. He said that I was suicidal so I would have to
take my clothes off so I wouldnt use them; I suppose to strangle myself or
something. Fortunately an elderly lady came to the unit and asked what is going
on here? She was either working for the state or an ombudsman. Regardless, I
was allowed to go back to my room. The male nurse asked me why I thought I

should be discharged. I told him my children need me and I need them. He tried to
convince me that they didnt and that was not a good reason to be discharged. He
was very strange. I dont remember seeing him too often after the incident in the
padded room.
My husband brought the children in. It was so good to hold them, but, when it was
time for them to go the suffering and separation anxiety peaked. I probably did a lot
of crying. My mother came to visit and she was wearing my clothes and held up the
back page of a magazine that read unwanted. She told me not to take the
medicine. She told me to put it under my tongue and spit it out when no one was
around. Her denial of my illness sent me into a whirlwind of confusion and Why
was she wearing my clothes? My husband intercepted my mail and limited my
visitors. It wasnt so much up to the doctor when I could go home. The doctor would
ask my husband if he thought I was ready to go home. He said no until finally the
insurance ran out after 6 weeks and I was discharged.
One day my husband was in my room and I asked him what do I have to do to get
out of here?. He made an obscene gesture that is too awful to repeat. I felt
helpless and hopeless. There was talk about divorce and I told one of the nurses
that if he divorced me I would kill myself. She said we can arrange that. Kevorkian
was making the news headlines at the time. I backed down after that; it was just an
expression of words and feelings that I had no intention of acting on.
There were a lot of strange characters in there and sometimes it was difficult to
distinguish between the staff, the patients and the visitors. What a nut house!!!!!

A Letter to God

Dear God, omnipotent creator and father of the Universe,

You knitted me in my mothers womb before all time. You are always near to me in
everything I do. You were with me during my first encounter with the psychiatric
unit of a hospital and the many others. You planted the seeds of inspiration to write
this little book 30years ago. Countless professors and advisors told me to write and
write and write until someone begins to listen. You were behind them too. My
schizophrenia is but an opportunity to witness to your tremendous healing power. I
thank you for my many blessings, my children, grandchildren and in-laws. I thank
you for everyone who picks up this book and learns from it and doesnt feel so
awful alone because of it. I know with you we are never really alone. I hope and
pray that you will bless this book, its success, and its readers. Although countless
people may have wished me harm, You have turned it into something good.

Diary Entry
Wednesday Jan 27, 2016
I woke up early this morning even though I didnt have physical therapy for my left
foot today. I dropped a log on it shortly after I got the cast off of my right foot that
got mangled in one of the machines at the YMCA. That is a story in itself. It hurts
really badly sometimes but no one really takes me seriously when I tell them that it
hurts. I had my bi-weekly Resperidone shot to keep me from the ups and downs of
the disease and from going overboard with my emotions. It seems to help, I guess, I
really cant tell except that my emotions are quite flat. The nurses come to the
house to administer the shot and to make sure my medicines are in order. Gaining
weight is the down side of the drug but it is difficult to talk to the nurses about it
because they are much more over weight than I am. I walked to the store to get a
few things, about a mile or so away and by the time I got home I thought I was
going to go through the roof with the pain in my foot. George, A fellow
schizophrenia sufferer was busy today. Of course there are no two afflicted brains
the same we have experienced some of the same symptoms over the years. Some
are directly and biologically similar and some are just a part of being human. He has
a lot more social contacts than I do. One difference is that he has never been in the
hospital and he manages his medicine on his own and is a few years older than me.
We laugh a lot together about our plights in the mental health fields. I dont know if
you have heard of the thorazine shuffle, but it is directly related to the method of
operations in the psychiatric units and those who have experienced it will probably
know exactly what I am referring to.
Friday Jan 29, 2016

I am up early as usual today, I normally go to bed shortly after I take my evening

medicine. Lately, I have been staying up to watch the Late Late show with the
host James Cordon. If I had to choose a person of the year award he would take first
seat. Watching and listening to the show usually puts me in a good mood. He is
just so funny, Im not too crazy about the guests but he takes the cake. Sometimes
the show is better than any drug on the market.
Watching the weather is very important to me because if I have errands or things
to do I walk most of the time. I havent had a car in several years. I can honestly
say that if it wasnt for my illness I would have one. It just doesnt fit in with my
meager allotment. Not working is a sore spot in my life or black mark so to speak.
Although I have always had some kind of job up until a few years ago I finally
stopped trying to beat the system. I know I am degraded because of it. People
wonder why I dont work. I try not to give out too much information because even
my family degrades me so I can only imagine what strangers or acquaintances
think.
In a case study of people with schizophrenia, the affected advise not to tell anyone
about the mental illness. I know in my life many people have come and gone. Most
recently I was telling a new neighbor about the schizophrenia. She is studying to be
a social worker so I thought maybe she could be compassionate. One day I was
walking passed her car, she was on the phone. When I walked by she locked her car
doors. People are afraid, even if they suffer themselves and maybe because they
suffer themselves. I know I have had issues with other mentally challenged
individuals.

Over the years I have come to the conclusion that it is best to stay away from my
extended family as much as possible. It can be very difficult because I long for their
acceptance. Sometimes when I take the initiative to contact them I am ignored.
Not always but enough to bring me to tears. I suppose it is better than getting
criticized and belittled. I always feel as if I am rowing the boat up stream. Pope John
Paul II advised to run from mean people. My family is usually mean and
argumentative as if they are trying to catch me doing something wrong. I dont
include my children in that family group because they are totally opposite. They are
my life. They love and respect me. I cant dream of ever treating them the way my
family has treated me. My children have been estranged from that particular family
group. I can only presume that the long haul has taught me to never treat my
children the way my siblings parents, step parents and in-laws have treated me.
Isolation is a negative symptom of the disease but, helps me to steer clear of being
a victim of stereotyping.
February 2, 2016
I had a typical weekend where my family is concerned. For one, my youngest child,
Thomas, had a swim meet. I was fortunate to have been able to attend. Now, my
sister has custody (another black mark) because I was having not so good
symptoms of the disease and that is how things panned out. His father was married
to someone else shortly after he was born and showed no real interest, Im
saddened to say. He tried to run me over with a car I had loaned him but my
landlord pulled in behind him and he jumped down the curb with the car and took
off. My landlord was the Sandusky county prosecutor at the time. The sister that has
custody can be very vindictive and mean. Her name is Maureen. There was a time
when I would dish out to her what she did to me but that only made matters worse

between us and minimized the time I was allowed to spend with my son. The court
appointed attorney told me that when I completed my treatment the child would be
returned to me. I completed my treatment but the return never happened. The
same attorney wanted 1200 dollars to handle the case, money I didnt have. I filed
many motions with the court on my own but it never went anywhere and the stress
and sense of loss made my condition worse. As it was, I was able to spend some
time with Thomas at the swim meet on Saturday. I had a great time and I know he
was thrilled that I was there, and so was I.
I had a Mass said for my dad on Sunday. I thought maybe some of the family
members would come but it wasnt important to them. I told my mom about it
when it was scheduled and it just so happened to fall on my brothers birthday. Of
course my mothers husband didnt attend and I was sure glad of that! She called
me while I was at the meet and it was difficult to hear since there were a lot of
people there. She sounded drunk. I asked her if she was still coming to the Mass
and she snapped at me. I wouldnt have called you if I wasnt. So I just said see
you then and hung up. I felt a nerve rupture in my brain Why is she always so
mean to me? Then my sister approached me and started telling me negative
things about Thomas and said it was all because of the phone I gave him in an
attempt to remain close to him. That is par for the course. It is usually my fault
when things dont come together as expected.
My mother came over for the Mass and wasnt in the best of mood. She said I didnt
love her!?? She had other demeaning remarks to throw at me as well. I prayed to
get through it with a sound mind and without losing my temper. So that is a little
taste of the life I lead. One of the many wounds is always being second guessed.
Dont think that way.

Parenting

Parenting is difficult for the average ma and pa. Add schizophrenia and a missing
parent and you have a very difficult situation. Mother Angelica the foundress of
EWTN, says it doesnt take a village to parent a child but a mother and father who
love each other and their children. It isnt about raising children as if they were
cattle or a field of oats but welcoming children in our lives. It isnt about happiness
and fireworks, it is the daily grind and teaching our children to love and serve our
omnipotent God by example. And that means a whole lot more than singing in the
choir. All I heard from my husband on the downside was how unhappy he was and it
was my fault. So much for in sickness and in health for better or worse till death do
we part? I am convinced he wanted me dead but settled for a divorce and a second
marriage a thousand times worse than the first.
It is very hard on our children. They suffer greatly as many children as innocent as
they are suffer the most. I can attest to that. My parents divorce was one of the
worst things in my life as a child. I believe it triggered the predisposition for the
disease to the onset of it on a full blown scale. I was too much like my mom for my
dad and step mother to tolerate and too much like my dad for my mother and her
husband. The second marriages made my condition chronic and severe. The
advantage was learning how never to treat others, especially, my children.

Family Reactions
In the beginning and early stages of the diagnosis there was a tug of war between
the medicine and religion. I was concerned about sainthood for my children. My
husband was more concerned with keeping them out of prison. That was furthest
from my mind. When I would remind the children to say their prayers the in-laws
would say take your medicine. They were anti-Catholicism and anti-religion. This
definitely would hit a nerve. When things were not quite going as well as others
would like and I was involved I would hear are you taking your medicine are you
ok? in a very demeaning and threatening tone. For example, it would sometimes
sound like this: do we need to take you to the hospital?
A wedge was formed between my family and my husbands as time went on. Then
came the divorce, and the relationships were severed. My dads wife would say
maybe she will get some new clothes when I was being admitted to a hospital in a
very sarcastic way. My mothers husband had brought me some clothes and would
try to convince me that my hospitalization was not punishment. I dont know how
anyone could explain the leather strap restraints and the locked doors. My husband
would make light of it and say that I was on vacation every time I was admitted to a
hospital.
In the book Everything you want to know about schizophrenia the author said that
mean families dont cause the brain disease but are responsible for multiple
hospitalizations. My illness was just a big joke among my siblings and their friends.
They would experiment with my medicine and try to tell me what medicines to ask
the dr. to give me. It was usually narcotics of one kind or another. I never did

because I couldnt remember the names of the drugs and because I knew it was just
not right. Alcoholism and drug addiction infested the adult family and their friends.

Case Management
If your family isnt very supportive and you are lucky enough to have a case
manager, they can be a great blessing. My current case manager is a blessing
because she helps me to take care of the basics like paying my rent, bills and
shopping to name a few of the things she helps me with. In the past I would only
see my case manager when it was time to do an ISP report. It is worth mentioning
that the current case manager has me sign a blank ISP report. That isnt so good
but I dont have the guts to confront her because of the fear of her dropping my
case altogether. The last case manager would try to talk me into working under the
table so to speak. It didnt matter that the consequences would involve big fines
and imprisonment. This is one of the more disturbing reactions from case
management.
Sometimes the case managers can be just as critical as the family members and
also use the phrases are you ok? Are you taking your medicine? And can be
translated as do we need to take you to the hospital? Many times I have been
escorted to the hospital in a police car or emergency rescue vehicle. One time the
officer pushed me into a seat because I was standing in the waiting room.
One of my case managers told me a story about a typical situation between family
and afflicted loved ones.
The family takes the afflicted family member to the clinic or hospital and tells them
that they cannot tolerate the behaviors of their loved one. The staff engages the
individual in therapy gives them lots of encouragement and support and brings
them around in a way that keeps the symptoms at bay and guides them throughout
the recovery process. The individual displays confidence and assertiveness and

gently confronts the mean family members in an attempt to reestablish

relationships that benefit both the afflicted and family members. As the medical
staff returns and releases the individual to the family relapse occurs because the
family has not changed and continues to criticize the afflicted. Before long the
negative symptoms and feelings of hopelessness return to the recovering patient.
Primary Care

Primary care is new to the regional mental health center where I receive treatment
for my schizophrenia. In the office there is a wall hanging that reads Mentally ill
people live decades less than normal people. We usually arent taken seriously for
problems unrelated to mental health. Although all problems really do involve mental
health issues like dealing with terminal illnesses. We are provided a nurse practioner
and a nursing staff but not a medical dr. other than the psychiatrist. The nurse
practioner stated that she does the same thing a medical doctor does but is paid
less. This just isnt true. I found that when I was having serious pain issues with my
injured foot the nurse practioner laughed and said it must be the weather. This was
disturbing. In another incident with the psychiatrist she minimized my concern over
the life expectancy of the mentally ill, namely schizophrenia. She told me not to pay
any attention to that. So there is no perfect scenario. I was treated for a cold and
racked up a big pharmacy bill because the insurance didnt cover all of the medicine
that was prescribed. I ended up with a diagnosis of COPD, pneumonia and asthma. I
am glad it was caught early enough to warrant treatment. And if the primary care
team hadnt ordered the tests I would be in a lot worse condition. Blood tests are
taken every six months for cholesterol and sugar. My cholesterol was very high so I

was given medicine for it and my next test was within normal range. There is also a
dental care team that visits in a trailer every so often. I had some serious mental
health issues and symptoms that seemed to peak when I was having dental
problems. Unfortunately my insurance didnt cover treatment. Of course there are
many issues that the primary care team can treat and they can always make
necessary referrals to specialists.

Managing Medications
Usually the psychotropic also known as anti-psychotic medications, mood altering
medications and medicine for depression are managed well with the every three
month visits to the psychiatrist. However, I ran into problems before my last
hospitalization by trying to manage on my own. I just didnt take it seriously
enough. I now have a home health team that administers my injection and makes
sure my medications are in order and being taken as prescribed. In the past they
visited 4 to 5 times a week and then the visits were decreased until now where they
only visit once every two weeks. It has been about three years now since I have
had home health care referred by the psychiatrist.
In the past it came down to Well, what medicine should I take today? How am I
feeling today? I wonder what this pill does. And so on. It is a serious issue even if
my family and others dont think it is. I dont think I could survive another
hospitalization.
Sometimes, even though I am taking my medicine as prescribed, symptoms can still
break through the medicines. It has happened to me and usually the medical staff
thinks I am not taking the medicine. Sometimes it just requires a different
combination of medicines.

Life Span of a Schizophrenia Sufferer

I touched on this subject briefly with reference to the primary care team. It is
believed that people with mental illness live decades less than people without
mental illness. The average life expectancy is 57 years. I am 58. More often than
not the most common premature death is caused by suicide. I would guess it is due
to the fact that usually by this time in life our parents are deceased and the support
system breaks down. Siblings become burned out from helping the individual with
all the ups and downs of the disease and have life stressors of their own.
Another common cause of early death is heart disease. Heart disease caused by
stress, unhealthy lifestyles, eating habits and lack of exercise as well as smoking.
Most mentally ill persons smoke, I think it is safe to say.

Recovery and Back again

I have been hospitalized for my schizophrenia more times than I can count. My last
stay was the longest and I was catatonic for nearly three months. The doctor told
my family that he didnt think I was going to make it. I was unresponsive to
treatment and only days away from being admitted to the dementia ward. They
said if I had any kind of recovery I would never be able to live alone. I lived in a
group home for a few months after my discharge. My brother came to Ohio from
California to see to my release from the hospital. And it was agreed that he would
have me placed in the group home. My case manager helped me to find an
apartment on my own because I was doing quite well. It was then that the doctor
referred me to home health care. I enrolled in a Nurse aid program and did quite
well. I had a few different jobs but the longest was providing care for an elderly
woman the mother of two sisters who hired me so they could get some time alone
away from their mother. She died in 2013.
Since schizophrenia is not accepted in our culture it is common for families to
become ashamed, guilty and critical of the afflicted. I often think of it as biblical
leprosy. Change and acceptance of the disease is moving slowly but getting better.
NAMI, the national alliance of the mentally ill are doing great things to bring
awareness of the disease as a real biological disease and helps to promote effective
support systems and funds a lot of research. I have been out of the hospital for
several years now and my fingers are crossed. The church has done great things for
me and has provided a safe haven for me and in a roundabout way I am eternally
grateful.

Resources