Everything is a drone of noise, I feel distorted and unplugged from reality. I don`t feel myself. I ask myself what are these limbs I carry, why are they hard in the centre ? I have lost all interest in life and my goals. I feel like a toppled pawn. MY life has no purpose left. The delusional thinking is killing me and I want to know why thinks work the way they do.

Why did my drunk brother beat me up and my parents did nothing.I think maybe this was the cause of my illness,all the stress and the hits to my skull.

I just want to climb out of my skin I fell uncomfortable trapped inside this human body.I tried to commit suicide and I didn`t realize it.I saw my arms like tentacles they were attacking me and I defended myself.People appear smaller and their heads have shrunk.I have lost my social skills.My emotions are confused and my mind is distorted.I self medicated with weed to help me ,but it only helped for a little while.My character changed and the way I mean and do things.I would walk around the house for hours talking and thinking to myself.I became obsessed with a Band called Pig destroyer.I believed they wrote about my life.I foiled my room believing it will protect me from RF links and EMI so that I cant be controlled.I thought I was an alien and my mission was to observe people and make a report.my parents were my tutorial.I believed everyone can copy my mind and hear my thoughts but I cannot do the same even if I was supposed to.I wrote strange things on my foiled walls.weird things
and pig destroyer lyrics.I carved alien like signs in my arms and burned a symbol in my chest .my mind would run into walls and i would talk funny according to witnesses.I cant remember much anymore but it basicly sucked.I`d forget things and my memory was delayed.I couldn`t meet people and talk to strangers.

I was diagnosed by a psychiatrist and the professor of psychiatry in south africa.I was put onto respirdal and depramil.I don`t know how things will be from now on but it seems a bit better.

What I have come to, that has cured me, is that people can not know who you are. Because, Who you believe yourself to be in your heart is who you are (Your Soul) From your soul is where you get regular functioning. You can decide how you want to come across to people and what is important for you to do and get done. If you believe that somebody could know this part of you it would throw you off completely from who you really are, and you would not be able to function the same and also you would begin to think all sorts of different dillusions about who you are and what reality really is!

So regaining a stable concept of what a normal person’s function is has enabled me to reconnect with my actual soul and to be in control of a ‘me’ that I actually recognize. To do this you must know that you heart (feelings) and your soul (who you believe yourself to be in your heart.) are hidden from the world.

I think a functioning in ourselves that we had never known about came over us suddenly and we were unable to distinguish the true boundry lines. This functioning is known as telepathy, being able to connect with other people in our minds. This is a function that we have control over. We can control what we speak in a similar manner to controling what we think. So having your thoughts known isn’t a privacy issue seeing that we choose what we will reveal to people!

A patient of society’s asylum
I take time to consider my senses and make decisions
Knowing what I feel and think
And what I can learn from their calling.
Pressure builds subversiveness
As my knowledge is suspect
And so escape to the ward to read myself discipline My beliefs are paranoid and have been challenged
By those subversives around me
And I must be mad, not to heed their warning
And recognise the threat of discontent – should they know its cause
Beyond the pale of the expected
I fear the prospect of change
Should it bring the desire forgiven
Then I propose I toast to mine own recovery.
Though the threat of my adversaries welcome
Strikes due consideration into my learning -
What may be lost to them?
Should my resistance weaken and fail
Then the independence I have gained will surely lay – down
As a martyr to what went before
And revelation will wake me soon

Negative Symptoms

Nothing changes, left alone in solitude
Surrounded by objects of labour and passion
Plenty happens here at home
But all is lost to amusement not gain
My plans for the future I have already known went awry long ago in the past
When I could enjoy life for what it offered
Now it just presents its curse of solitude and long held dreams failed
Letting disappointment and resentment to settle heavy in my heart
Causing me psychoses and other labours of the soul
Whispers, insulting me in silence
Stir me to shout my innocence out loud to the walls
Should they listen
Or anyone else who may hear my protest
Though none will foster and fewer care for my wellbeing
My beliefs are sentiment to my own derision
And failure
To be as good as the next man

A few days before the onset, I can clearly remember sitting for hours at this coffee shop that was just next to my ex’s place and hoping I would catch a glimpse at her going in to her appartment with her new boyfriend. I completely rejected any of my friends support since it wasn’t the first time this had happened and I had deliberately decided to dwell by myself to get over it this time.

The day the onset started : I was in my room, my friend called me and told me that I have been unusually isolating myself this past week. I still refused to see anyone. I played some very sad music and started writing a letter to my ex, but this time it was evident that I was starting to experience an altered state of consciousness. The letter ended up to be coherent according to my ex, but I wasn’t expecting it, as I have found trouble reading it. I drop it in her letter box.

The next day I cross into her in the library. I had to work for my upcoming midterm. I remember spending 5 hours on 3 lines I was starting to enjoy the visual halluscinations I was experiencing ( green colors). (Note that these hallucinations were somewhat differently experiencing then the later ones when I was in my recovery phase : although the colors were the same, in my pre-schizophrenic state I was deliberately forcing myself to have these hallucinations in the library, whereas in my schizophrenic state I was experiencing them out of the blue and had to work on ignoring them, maybe it had something to do with my consciousness in the first case and my unconsciousness in the second case ? ). My ex noticed that I was very bizarre.

There are other details and odd behavior as well but I won’t talk about them.

The onset lasted 2 days. At that time, I wasn’t aware that the state of mind I was experiencing was going to be a chronic one. I am thankful for that because I would have commited suicide. 2 months later I experienced my first and last psychotic relapse. During the first stages of my relapse, I was having delusions and one of them was that I was schizophrenic. Ironic. I thought at this time that it was what it is not, that is split personnality. I had this habit to google every delusion and as I was searching for schizophrenic I found out that its describtion was compatible with what I was experiencing, thus I automatically rejected it as it was not very amusing since I was seeking to distort my true identity. A few days later my dad took me to a psychiatrist and I told her I have schizophrenia, eventhough I also had delusions on the side and was purely psychotic. She was astonished by that.

A few weeks later I was in Lebanon, and I went to see a psychologist. He insisted that I stay in the country and continue my studies here since I can get family support. I started university barely beeing able to cope with my personal hygiene and going to class. I dropped a few classes but I was still able to hang on there. I made a few friends. My grades were weak but passing courses. This spring I finished my fourth semester in this university in computer science and the Spring semester was my first full-time student semester. I am proud of myself. I am currently taking a summer course and doing well. I have periods of distress but I am always confident that I won’t go downhill since I say to myself that I have been able to cope with previous ones everytime a new prodromal period comes up.

Everyday is a fight for me to go on in my life, there won’t be a day where I would live the life I had, but it is a good life now. I think recovery is not when u don’t have symptoms but when you are able to control your life and live a productive life, hence the dissapearance of symptoms will be a consequence of that, and not the other way around.

The key factors to my recovery were:
- Living by myself without any family caregiver
- Meeting friends and being in social situations
- Playing the guitar which contributed to 40% of my recovery
- Reading books

The key factors to my recovery were not:
- doing drugs or alcohol ( I smoked pot once after the onset and it was a very displeasurable experience and I wouldn’t advise to anyone, I drink from time to time a beer when I am in bars but I try to limit myself to 3 beers per week max)
- Living with my parents ( I think it is important to have your own space and learn to take care of yourself.
Someone who is there to tell you to take a shower or to do the dishes for you is not going to encourage me to do it by myself.
Schizophrenia is a disabling disorder but the person affected by it is well aware of the way they endeavor to live their lives.
To make myself clearer, it was helpful for me to live in the dirt in the begining in order for me to take care of my house and personal hygiene).

As for medication, I am currently on 0.5 mg of risperdal, but I am not a big fan of medication and I cannot contribute any of my recovery on them.

After a while I acknowledged that my breakdown was painful and scary but I had survived it and as time went by I was able to face the Truth about my condition. By doing that I gained an incredible amount of inner strength.

I believe I had to suffer temporarily to gain this higher state of mental and emotional health. It may be true that I might have to face more difficulties within myself in the future. I am not going to shy away from it or deny why it is happening. It is a fact that we all suffer. It is also a fact that the suffering we face is only temporary and we learn and grow stronger because of it.

If any one is going through a seemingly bizarre, impossible to understand situation talk to people who have survived it, work on it within yourself, above all, BE POSITIVE! This too shall pass.

Please let people know they can contact me about their struggles with this thing known as schizophrenia and the battles they have with psychiatrists and the mental health field in general.

Leonard Sanders
ljshockey@hotmail.com

The schizophrenic experience can be a terrifying journey through a world of madness no one can understand, particularly the person traveling through it. It is a journey through a world that is deranged, empty, and devoid of anchors to reality. You feel very much alone. You find it easier to withdraw than cope with a reality that is incongruent with your fantasy world. You feel tormented by distorted perceptions. You cannot distinguish what is real from what is unreal. Schizophrenia affects all aspects of your life. Your thoughts race and you feel fragmented and so very alone with your “craziness.”

My name is Janet Jordan. I am a person with schizophrenia. I am also a college graduate with 27 hours toward a master’s degree. I have published three articles in national journals and hold a full-time position as a technical editor for a major engineering/technical documentation corporation.

I have suffered from this serious mental illness for over 25 years. In fact, I can’t think of a time when I wasn’t plagued with hallucinations, delusions, and paranoia. At times, I feel like the operator in my brain just doesn’t get the message to the right people. It can be very confusing to have to deal with different people in my head. When I become fragmented in my thinking, I start to have my worst problems. I have been hospitalized because of this illness many times, sometimes for as long as 2 to 4 months.

I guess the moment I started recovering was when I asked for help in coping with the schizophrenia. For so long, I refused to accept that I had a serious mental illness. During my adolescence, I thought I was just strange. I was afraid all the time. I had my own fantasy world and spent many days lost in it.

I had one particular friend. I called him the “Controller.” He was my secret friend. He took on all of my bad feelings. He was the sum total of my negative feelings and my paranoia. I could see him and hear him, but no one else could.

The problems were compounded when I went off to college. Suddenly, the Controller started demanding all my time and energy. He would punish me if I did something he didn’t like. He spent a lot of time yelling at me and making me feel wicked. I didn’t know how to stop him from screaming at me and ruling my existence.

It got to the point where I couldn’t decipher reality from what the Controller was screaming. So I withdrew from society and reality. I couldn’t tell anyone what was happening because I was so afraid of being labeled as “crazy.” I didn’t understand what was going on in my head. I really thought that other “normal” people had Controllers too.

While the Controller was his most evident, I was desperately trying to make it in society and through college to earn my degree. The Controller was preventing me from coping with even everyday events. I tried to hide this illness from everyone, particularly my family. How could I tell my family that I had this person inside my head, telling me what to do, think, and say?

However, my secret was slowly killing me. It was becoming more and more difficult to attend classes and understand the subject matter. I spent most of my time listening to the Controller and his demands. I really don’t know how I made it through college, much less how I graduated cum laude. I think I made it on a wing and a prayer. Then, as I started graduate school, my thinking became more and more fragmented. One of my psychology professors insisted that I see a counselor at the college. Well, it appeared that I was more than he could handle, so I quit seeing him.

Since my degree is in education, I got a job teaching third grade. That lasted about 3 months, and then I ended up in a psychiatric hospital for 4 months. I just wasn’t functioning in the outside world. I was very delusional and paranoid, and I spent much of my time engrossed with my fantasy world and the Controller.

My first therapist tried to get me to open up, but I have to admit that I didn’t trust her and couldn’t tell her about the Controller. I was still so afraid of being labeled “crazy.” I really thought that I had done something evil in my life and that was why I had this craziness in my head. I was deathly afraid that I would end up like my three paternal uncles, all of whom had committed suicide. I didn’t trust anyone. I thought perhaps I had a special calling in life, something beyond normal. Even though the Controller spent most of the time yelling his demands, I think I felt blessed in some strange way.

I felt above normal. I think I had the most difficulty accepting the fact that the Controller was only in my world and not in everyone else’s world. I honestly thought that everyone could see and hear him. It progressed to where I thought the world could read my mind and that everything I imagined was being broadcast to the entire world. I would walk around paralyzed with fear that the hallucinations were real and the paranoia was evident to everyone.

My psychosis was present at all times. At one point, I would look at my coworkers and their faces would become distorted. Their teeth looked like fangs ready to devour me. Most of the time I couldn’t trust myself to look at anyone for fear of being swallowed. I had no respite from the illness. Even when I tried to sleep, the demons would keep me awake, and at times I would roam the house searching for them.

I was being consumed on all sides whether I was awake or asleep. I felt like I was being consumed by the demons. I couldn’t understand what was happening to me. How could I convince the world that I wasn’t ill, wasn’t crazy? I couldn’t even convince myself. I knew something was wrong, and I blamed myself. None of my siblings have this illness, so I believed I was the wicked one.

I felt like I was running around in circles, not going anywhere but down into the abyss of “craziness.” I couldn’t understand why I had been plagued with this illness. Why would God do this to me? Everyone around me was looking to blame someone or something. I blamed myself. I was sure it was my fault because I just knew I was wicked. I could see no other possibilities.

In the hospital, every test known to man was run on me. When the psychiatrist said I had paranoid schizophrenia, I didn’t believe him. What did he know? He didn’t know me. He was just guessing. I was certain he was trying to trick me into believing those lies. Nevertheless, he did start me on an antipsychotic medicine and that was the first of many drugs I have been given over the years.

This first medicine was Thorazine, the granddaddy of all psychoactive medicines. I have also, at one time or another, tried Mellaril, Stelazine, Haldol, Loxitane, Prolixm, and Serentil, to name a few. These medicines seemed to work for a while, but the symptoms always came back and the side effects were not pleasant. Many times, though, I began to think my medicine was poisoning me, and I would quit taking it. Then, the “craziness” would return in full force.

I would usually end up in the hospital and, with more medication, doctors would stabilize the psychosis. I tried to commit suicide twice during these periods. I wanted to punish myself for having this devastating illness. The Controller was trying to ruin my life. He was making me miserable. Yet, I clung to him like a sinking ship, even though I felt like I was drowning, slowly but surely.

I was truly blessed when I started seeing my present therapist. I have been seeing him for the past 19 years. He has been the buoy in the raging waters of my mind. I was blessed again when I became the patient of my present psychiatrist. He has been taking care of me for over 16 years. They both have been my saviors. They have not hesitated to try new medicines and new approaches. No matter how bad things have been, they have always been there for me, pulling me back into the realm of sanity. They have saved my life more than once.

In fact, it was through them that I started taking Clozaril, a true miracle drug. It doesn’t have half the side effects that the other neuroleptics have, and I have done remarkably well on this medication. The only problem with this medicine is its extremely high cost, which is why most people with schizophrenia are not taking it. Fortunately, my medical insurance covers the high cost of this drug. In fact, my medical insurance has paid for all of my hospitalizations and treatment. Sometimes I get scared that they will drop me, but I choose not to dwell on this fear.

I do know that I could not have made it as far as I have today without the love and support of my family, my therapists, and my friends. It was their faith in my ability to overcome this potentially devastating illness that carried me through this journey. There are so many people with serious mental illnesses. We need to know that we, too, can be active participants in society. We do have something to contribute to this world, if we are only given the opportunity.

So many wonderful medications are now on the market, medications that allow us to be “normal.” It is up to us, people with schizophrenia, to be patient and to be trusting. We must believe that tomorrow is another day, perhaps one day closer to fully understanding schizophrenia, to knowing its cause, and to finding a cure.

Thank you very much for listening to me. It is my hope that I have been one more voice in the darkness – a darkness with a candle glimmering faintly, yet undying.

No one saw things as I did. No one believed the things I thought were happening to me. The longer this continued, the worse it became. Before long, I thought my house was being wire-tapped and that my food could possibly be poisened. Now living at home with my parents, I did not want to endanger them so I kept things to myself.

My parents sent to to a psychiatrist. They were worried because I was not working. I graduated from college while working part-time as well as being involved in college clubs. Now, I was sleeping in until ten or eleven o’clock in the morning and often not working. The psychiatrist offered to prescribe me an anti-depressant, because I never told him what I thought was really happening to me. If I talked, things would surely get worse.

Eventually, it became intolerable. I believed my neighbors were plotting against me. I left notes in their mailboxes demanding that they leave me alone. "Enough is enough," I wrote. One of the neighbors was an FBI agent. I thought he was behind the wire-tapping. One of the other neighbors caught me, and the next day I was given the choice of going to the Crisis Center or going to jail. I chose the Crisis Center and was hospitalized.

During my stay at the hospital, I was prescribed Risperdal. At that time, it was a new medication and I was told I responded well to it. I no longer believed people were out to get me. The hospital staff was pleased with me because I showered every day and attended all the patient activities. I was the only patient that wore street clothes. They said I might be able to hold a job.

After getting out, I was determined to be normal. I found a part-time job as a sales associate in a department store, then worked full-time for a lumber retail store chain. I did not mind the jobs, but wanted to use my college education. Writing always appealed to me, so I enrolled in a few classes at a local university and worked as a "stringer" at a weekly newspaper. The position went well, and I was hired by a daily newspaper.

The job did not last long. I stopped taking the medication because I had a difficult time keeping up. I was also extremely self-conscious because I was approaching my thirties and was not on my own yet. People at work teased me about things I could do nothing about. As a result of being off the medication, I turned in articles that made little sense and quoted people as saying things they never said. The managing editor had a meeting with me and told me he was concerned. He said he contacted the editor of the weekly where I worked as a stringer and and my past professors about my ability to do the job. I denied there was anything wrong and was soon fired.

After that, I refused to take the medication. I worked through labor temporary services and factories. The longest I held a job was for nine months. It was on the "grave yard shift" for a a plastics factory. I managed to get my own place, but young people moved in next door and were having parties every weekend. On my days away from the job, it made it difficult to sleep. I asked them to stop a few times, and they became angry.

One evening, they did not have a party. Three of them cornered me and swore at me. They would not let me in my place. I was afraid and confused. No one was that mad at me before. A fight broke out and I could not get away from them. The police broke it up and I was sent to the hospital with an eye swollen shut and they were sent to jail.

After getting out of the hospital, I did not want to go back to the apartment. I returned to my parents’ house, but they did not want me back without the medication. After repeated talks and my refusal to take the medication, they locked me out. I would wait on the porch for them for hours, and they would let me back in. We argued and I was eventually hospitalized again.

Following the hospitalization, I was sent to a halfway house. My days and evenings were spent with other people that had mental illness. During this time, I had to accept the that I was sick and that my life would be different. There was no where to go and no one to do things with that did not have a mental illness. I heard many peoples’ experiences and it helped me not to fight or ignore the fact that I was mentally ill.

For the past four years, I have been working at an agency that houses the homeless and mentally ill. It is the longest I have held a job since I graduated college almost fifteen years ago. I worked part-time for two years and was then hired into a full-time position. It was hard not to bounce around when things were not going well or I wished they were different, but it has been very rewarding. I get to see people come and go rather than leaving and starting over again.

Frederick Frese’s astonishing story is simply this: Thirty years ago, he was locked up in an Ohio mental hospital, dazed and delusional, with paranoid schizophrenia. Twelve years later, he had become [a] chief psychologist for the very mental hospital system that had confined him.

Along the way, despite 10 other hospitalizations, he married, had four children and earned a master’s degree and doctorate.

He’s smart, impassioned and dedicated.

And now, after more than 300 public appearances in the last few years and a major role in a national campaign to end discrimination against the mentally ill, Frese is gaining prominence as a person who lives successfully with schizophrenia and who can share the lessons he and his family have learned from it.

Frese’s accomplishments are remarkable by anyone’s standards, given the often devastating nature of the disorder, which affects 2.5 million Americans. A fact sheet on schizophrenia from the National Institute of Mental Health calls it the most chronic and disabling of the major mental illnesses.

Afraid, withdrawn and tortured by inner thoughts and voices, people with schizophrenia, particularly those who refuse to take medication, are more prone to suicide or estrangement from society. Once locked inside mental hospitals, as Frese was, they now make up a significant portion of the homeless population; many others are in jail.

But Frese, 55, of Hudson, Ohio, between Cleveland and Akron, contends he’s not all that unusual — many others with schizophrenia lead fulfilling lives.

It’s a message that encourages people who hear him. In May, he received a standing ovation from 600 Detroit residents who heard his speech to Kadima, a group that offers innovative programs to mentally ill people and their families.

Frese shows that “schizophrenia need not be the end of life,” says Dr. Husseini Manji, director of schizophrenia and mood disorders at the Wayne State University School of Medicine and the Detroit Receiving Hospital. He spoke with Frese at the Detroit event.

Laurie Flynn, executive director of the National Alliance for the Mentally Ill, a Washington, D.C.-area support and advocacy group, says, “Fred embodies the hope we all have for … the recovery of our family members.” Frese serves on the group’s board of directors.

“His talent, intellect, complete openness and humor have made it possible for a lot of people to believe it’s possible to follow in his footsteps,” Flynn says.

When Frese had his first breakdown, he was 25, a college graduate and a Marine Corps captain guarding atomic weapons in Jacksonville, Fla.

He developed an all-consuming paranoia that enemy nations, in a plot to take over the U.S. atomic weapons supply, had hypnotized American leaders.

The base’s psychiatrist had Frese taken to a Bethesda, Md., naval hospital. He was discharged five months later, not knowing what he really had or whether he should take any medicine.

But Frese had several classic symptoms, notably his inability to separate fantasy from reality and his hearing of inner voices. Contrary to popular belief, schizophrenia is not a split personality. Rather, people are apathetic, withdrawn, delusional and can’t think logically. Though people are more likely to develop schizophrenia if it runs in their family, substance abuse, stress and other factors may trigger it. It typically develops between the ages of 17 and 25.

New research shows that viral infections in the second trimester of pregnancy also may cause the disease, though it may not develop for years.

Frese’s second breakdown came about a year later in a Milwaukee church. He pictured himself changing from man to monkey, then dog, snake, fish and, finally, an atom.

He saw himself inside an atom bomb being loaded for use. He thought he was “the instrument to usher in Armageddon.” He was hospitalized for a few weeks, then released. He wandered streets for the next year. In the summer of 1968, when he was 27, he was picked up, jailed, taken to court and declared insane by the state of Ohio. He spent three days in a maximum-security mental hospital cell.

The story he tells of that stay depicts him at utter rock bottom, screaming for water, trapped in a room with no toilet, guarded by attendants who wouldn’t let him out to go to the bathroom.

Then, transferred to a Veterans Administration hospital, Frese was put on a medicine that began to control his delusions. Over time, though he was in and out of the hospital 10 times, he was able to hold jobs, including a management position with a major corporation. He earned a degree in international business management from the American Graduate School of International Management in Phoenix, Ariz., and a master’s degree and doctorate in psychology from Ohio University. For 15 years, he served as director of psychology for the Western Reserve Psychiatric Hospital in Sagamore Hills, Ohio, the system where he had once been a patient.

Frese benefited from luck, persistence, his college degrees and health insurance at the time of his first breakdown. In addition, he recovers more quickly once he’s on medicine.

Once, he was hired into a management position at a major corporation without even being asked for his health history. Another time, an administrator recommended him for a job over the objections of people who questioned whether someone with psychiatric problems should work in the mental-health system. Discrimination like that remains a serious problem for mentally ill people even today; as a result, many can get only menial jobs.

At Ohio University, Frese met his wife, Penny, a former nun, while they were both graduate students.

In “A Love Story: Living with Someone with Schizoprehenia,” the last half of a two-part video she produced with her husband, Penny Frese describes how her husband confided in her about his mental illness only after they had been friends for a while. Curious about the disease, she devoured books on the subject and spent hours talking to Frese about his illness.

He opened up his life to her. She saw a man who was charming, funny and intelligent. They became close, but her growing affection for him scared her. She left for Colorado, but soon realized her life held little without him. “Life without him was unthinkable, but I was terrified,” she explains in the video.

They married and had three children. Frese has a fourth child from a previous brief marriage.

All four children, now ages 15 to 24, have been diagnosed with depression and take drugs for the conditions. Frese had a cousin with schizophrenia, offering more evidence of a genetic link.

“They are all doing wonderfully,” Penny Frese says of their children. A son, so painfully shy in middle school that he sat in the principal’s office to avoid gym, just graduated seventh in a class of 400. He was a class officer and a drama student. “He’s extraordinarily popular,” she says of her college-bound son.

Claire Frese, 16, has produced her own video called “My Story” to describe her last five years of coping with depression.

Most children with depression can be treated successfully with medication, Penny Frese says. “The disturbing thing is, I see lots of children like my children who are not getting help,” she says.

Penny Frese, who has a doctorate in comparative arts and who teaches theater at Kent State University, urges parents to get help for children who are withdrawn, usually shy, hypersensitive, or who have sleep or eating problems.

Claire’s own friends and school officials are a big help, now that the family has been open about the problem, she says. “They are pleased to help,” she says. On a recent class trip, a friend noticed that Claire was becoming stressed. He went over to her and asked her to walk with him for a while.

“He said, `Hey, bud, I guess you need a hug’,” Penny Frese recalls. “We underestimate people’s ability to understand.” Thirty years of life with schizophrenia have taught Frese and his family to cope.

“As you get older, you are better able to spot the symptoms and to cut them off,” says Frese. He was hospitalized in 1974 and suffered a severe enough relapse 1 1/2 years ago that he was almost hospitalized again. First, Frese says, a person with a serious mental illness must acknowledge his or her disability and take medication.

Denial is common, particularly at first, because “you don’t think it through very carefully,” he says. “You just hope it goes away.” Employers, friends and neighbors also usually attach such strong stigmas to mental illness that many people pay a price if they tell others, Frese says.

Frese explains the disease as an “inherited vulnerability to breakdown” exacerbated by stress, conflict, substance abuse, death or other losses. When he feels his own symptoms worsening, he increases the dose of Risperdal, the schizophrenia drug he takes.

He also may take off time from work or remove himself from a stressful situation. For particularly sticky situations he can’t avoid, Frese carries a wallet-size card that he hands to people if it becomes necessary. It asks them to rephrase criticism in a less threatening manner because he is a mentally ill person who doesn’t handle conflict well.

Criticism, even perceived criticism, can be paralyzing, he explains. Studies show that people with schizophrenia who are discharged from hospitals are more likely to relapse if they go home to family members who criticize them, he says. So, too, are patients discharged from hospital psychiatric wards that are run with excess control and rules, he says.

He suggests that people with schizophrenia “avoid persons, places and hostile environments where they are likely to be stressed.” He tells family members not to agitate people with schizophrenia if they begin talking about subjects or delusions that seem odd. Instead, say: “That’s very interesting. Tell me more.”

Frese’s wife says she, too, has learned more about how to communicate with her husband. She no longer is bothered if he won’t establish direct eye contact with her. She understands that people with schizophrenia have trouble picking up on social cues, so they have trouble ending a conversation appropriately or even sustaining one. She also avoids statements that might be interpreted as accusations. It’s better to say,”Are those your socks on the floor?” than “You left your socks on the floor again,” she says.

These days, Fred Frese directs the Summit County (Ohio) Recovery Project, a program to help mentally ill people find jobs and fight discrimination.

He also is active in the Campaign to End Discrimination, a new five-year effort by the National Alliance for the Mentally Ill.

Started in February, it hopes to eliminate discrimination against the mentally ill in housing, employment and the media. A major goal of the campaign is to get Congress to pass laws requiring insurance plans to cover mental illness as fully as other medical problems. Though the Senate and House still must resolve differences, a bill recently got a big boost from three U.S. senators who have given moving personal testimony in its favor, based on their experiences with mentally ill family members.

“These are times of change for us,” Frese tells the Detroit group.

“As I often say, in my 30 years with schizophrenia, there’s never been a better time to be a person with serious mental illness. There’s more hope than ever before.”

In high school, still without treatment, I eventually began drinking in a desperate attempt to ease my pain. It only made things worse, increasing my psychoses and intensifying psychotic episodes that terrified me.

I entered college in 1972, still not understanding my illness. In the winter of 1975, my mental anguish grew so severe that I tried to commit suicide. I ended up in the psychiatric ward of a nearby hospital, where I was diagnosed with schizophrenia and began to receive treatment. I finally began to understand the bizarre world of hallucinations, delusions, paranoia, and psychotic episodes that is called schizophrenia.

I started doing research to better understand the illness; I was determined to overcome and recover from it. This process continues to this day.

Then came a turning point: I became involved with my local chapter of the National Alliance for the Mentally Ill (NAMI). I attended NAMI support groups and began to go to state and national conventions, where I met many other individuals diagnosed with mental illnesses and we shared our experiences of recovery.

My association with NAMI led me to The Advocacy Alliance (an affiliate of the National Mental Health Association), another wonderful organization that helps people who have mental illnesses. I began doing volunteer work there, and this has better enabled me to reintegrate into the community. The wonderful staffs at both organizations have helped me a great deal. My fiancée, whom I met at the Advocacy Alliance, has also been diagnosed with schizophrenia; we try to help each other in our recovery, and we have hopes for a bright future.

I still have schizophrenia but I have recovered to the point where I am able to function within the community, and I try to pass along this hope of recovery to others. I have become involved with my local Community Support Program, a coalition of people with mental illnesses, family members, and mental health professionals; and the Pennsylvania Mental Health Consumers’ Association (PMHCA), a statewide organization of people who have mental illnesses, in order to help others like myself.

Recently, I was hired by PMHCA as Northeast Pennsylvania Coordinator for “Leadership In Recovery” programs that will be taking place for the next three years. I really love this job, and I am trying to apply my experiences in recovery from mental illness to my work. I also do educational presentations about mental illness at local colleges, facilities for children and adolescents with mental illness, and local mental health counseling centers. These presentations are sponsored by the Advocacy Alliance.

A diagnosis of mental illness should not be a barrier to achieving one’s goals. Anyone can recover: It just takes hard work and a willingness to develop the coping skills necessary to overcome mental illness.

Frank Catrelli