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22 Apr 2009

By Emilia Chiscop

Here is the thrilling story of a woman who managed to overcome a serious mental disorder: schizophrenia. Not only did she cope with the illness, but she succeeded in living a normal life with accomplishments that even 'normal' people find it hard to achieve: she set up a medical cabinet that she manages on her own and boasts a beautiful and smart little girl.

If she didn't hide this secret, the doctor, an energetic and optimistic woman who has made her way in life - she set up a medical cabinet that she manages on her own and boasts a beautiful and smart little girl, and has plans for the future - would run the risk of losing almost everything. The people who now look up to her and confide to her their health problems would look at her askance and skeptically, some would perhaps avoid her, many would look for another doctor. They would suddenly consider her 'insane' despite the fact that day by day, year after year she has proven to be a competent, hard-working doctor. She has been living with this secret for more than 20 years, since she was diagnosed with one of the most serious psychological troubles, schizophrenia. The doctor has overcome the disease, but not people's prejudices. On account of these prejudices she was on the verge of getting one of the most powerful blows in her life, more painful perhaps than the disease itself: after she requested divorce because of her husband's affairs, he asked the court for child custody on account of the mother's diagnosis, even though she has not been admitted in any medical institution for ten years and her doctor confirms that she has recovered completely. The woman fought and convinced the judges. Her victory in the court is in fact the victory against an entire system that tends to discriminate against people with mental health problems only for having once stayed in a psychiatric hospital. Their rehabilitation efforts are sometimes heroic and too little attention is paid to the fact that they carried out - just like this lady doctor - performances which some so-called 'normal' people don't achieve in their lives.

'My cabinet colleagues, not knowing anything about my diagnosis, wondered why I was so worried about having my child taken away', says the doctor. Indeed, it was inexplicable to them why a highly educated woman with a reputable job, who makes a decent living for her child, an honest woman who has dedicated herself for her family and everybody knew that, could lose the right to raise her child. Especially as mothers are almost always successful in a suit.

But when love turns into hate and the husband who loved you once now wants to hit you where it hurts you the most, which is in your mother's love, things might have an unpredictable ending - she thought - especially when you have such a diagnosis which can crush you by its simple mentioning at the bar. For many, schizophrenia is one of the most terrible mental troubles. Most of the people know that being a schizophrenic means that one hears voices or sees nonexistent human beings who command to even hurt their loved ones.

However, very few know that being diagnosed with schizophrenia can equally mean to have a will to fight, take the daily medicine and attain exceptional performances - just like John Nash, a Nobel Prize laureate, the hero of the famous movie 'A Beautiful Mind' - or to recover and live a normal life, as in the present story. The percentage of those who get well from the sufferance is not at all negligible, rising to 30-40% of the patients, the chances of recovery being higher if the trouble occurs at an older age, if the education level is high and family support is stronger. Some studies show that women with schizophrenia have more chances of recovery than men.

Perhaps few people know that the recovery percentage of schizophrenic people is higher than for alcoholics, which, according to specialty studies, reaches only 20%. 'The recovery percentage in regards to schizophrenia could be even more than 30% if the illness is detected in time, if patients were regularly assessed in dispensaries and if there were support networks' says Virginia Fortuna, psychiatrist within Socola Psychiatric Hospital.

'She heard voices that offended her all the time'

Her patient, our lady doctor, belongs to this optimistic percentage (30-40%) in spite of a worrying start. 'When I met her, she was in a very bad state. She was hospitalized in the upper floor, together with the «agitated» ones. She heard voices that offended her all the time. She had awful hallucinations', recalls Dr. Virginia Fortuna, who took care of her during her admissions in the hospital, which became increasingly rarer, and now the 'little girl' - as she tenderly calls her patient who has now reached her middle age - goes to the hospital only twice a year in order to be assessed for the treatment extension and dosage. 'Perhaps, gradually we will reduce the dose, down to total elimination', says Dr. Fortuna, who is convinced that she was stimulated and virtually saved by the fact that she has had a job and has never given up her ideals. Her intelligence enabled her to regard her sufferance objectively and make an accurate portrayal of what she felt.

She had already graduated from medicine when the first signs emerged. She had been a good student in a reputable Iasi college and, later, a hard-working university student. 'I was admitted in the faculty after a first attempt, at a time when exams were very tough and the competition extremely tight (12 candidate for one place)', she recalls. After the graduation exam she failed the residency, in spite of having studied heavily.

It seems that the effort was overwhelming. 'When she came home she strongly believed that her thesis had been stolen, that somebody had formed a conspiracy against her. She had all sorts of fears, she heard voices, she used to tell me that she was pursued by Ceausescu's Security', her mother recalls about the first signs of 'abnormality'.

'I told him about the diagnosis and he sympathized, for we were in love'

Indeed, psychiatry literature mentions the stress as a predisposition to the debut of schizophrenia, this severe brain disorder that affects two million people in the entire world each year. 'I used to live a double life, one in my head, the other outside. My mind framed scenarios and I was affectively involved in them as if I were watching many films in parallel. Sometimes I got the impression that there was news about me on TV. It was horrendous, I do not want to remember', she said gesturing as if my question was a disturbing wasp which she wanted banished.

After being diagnosed with discordant psychosis and a first admission in the 'agitated' department, the voices stopped harassing her and she took back her activity as a country doctor, commuting like all the beginners at the end of Ceausescu's regime. 'It was not easy for me. The commuting was hard, I sometimes rented a room, there was no running water and the toilet was outside. I was a sensitive, lonely person', she recalls. I met my future husband while commuting: 'I told him about the diagnosis but he sympathized, for we were in love and I felt good, the treatment went well, I no longer needed to be hospitalized'.

They married for love. Meanwhile, both of them got better jobs, they got away from the muddy countryside roads. In 1997 the baby girl whom they wanted so much was born though the psychiatrists suggested she wait for five years because the treatment with narcoleptics had to be stopped during the pregnancy and that could trigger relapses. 'I took that chance', says the woman, but the specialists' forecasts confirmed: shortly after delivery, voices started to disturb her again.

Her in-laws threw them out of the house, together with their child.

Life would have been much easier if she had to fight only against the voices in her head which tormented her terribly - since she not only heard them in the ears but also in the brain, a sort of loud reverberation of her thoughts, avows her shrink, Virginia Fortuna. 'Take the baby away from her and leave her'- her mother-in-law would tell her husband. 'But he didn't listen to his mother and stood beside me. I fought with my mind, in order to stand my ground and not to be hospitalized until the baptism of my daughter', added the doctor.

The situation was more serious than that. 'The parents of my former son-in-law found out about my daughter's disease when she had that relapse after the delivery. My former son-in-law had not told his parents about my daughter's situation and we had no idea about that. They threw them out of the house together with the newborn baby. They moved in to my place where they stayed for three years. His parents didn't even leave their son the keys to their house, remembers the doctor's mother, pointing to that kind of rejection to which most persons suffering from mental disorders must cope with in Romania, where the confrontation with stigma is sometimes more difficult than the recovery since the burden of the diagnosis lingers on and the people do not understand that, once treated, one can lead a normal life. 'Having someone in the family suffering from a mental disease represents a misfortune and a terrible shame. It would be good for people to know that as long as they have a liver and stomach which may get ill, the same might happen with the brain which is most exploited', says her shrink, adding that if people with mental disorders together with their families would overcome this shame, that could be beneficial to most of the affected ones, they could share their experiences, could set up support groups, just like in the West European countries, where they have been functioning for a long time. 'In Iasi, there are well-off people who have children or other relatives diagnosed with schizophrenia. They have the financial power to do something, like setting up associations or developing anti-stigma public campaigns. But they cannot. They are ashamed and they hide them in the house', tells Virginia Fortuna, adding that their reaction is partly understandable since the society crushes and isolates you, and people fail to understand that, one day, any of us can have a mental disorder.

'In our country, if you tell somebody to submit himself/herself to a psychiatric exam, he/she feels offended', resumes Virginia Fortuna. Naturally, this kind of rejection and unacceptability harms both the family who take it as misfortune and the affected person who undertakes a double effort - disease and stigma - and not all can cope with all of this. 'As for my patient, her mother had a crucial role, especially in the beginning: she faced the reality and supported her maintaining a vivid ambiance in the family. She has a sense of humor that helped her rise above', points out Dr. Fortuna.

'I have always tried not to further complicate my life'

The doctor suffering from schizophrenia managed to pass over the hatred of her in-laws and focused on bringing up her daughter and going to work. 'I have always tried not to further complicate my life', she says. After three years, the irritation of the in-laws declined and they welcomed them back. However, the relationship remained cold. 'My husband and I were not allowed to visit them. We used to sneak our way there, only when they were out visiting' says the doctor's mother. Despite these obstacles, the granddaughter and her grandmother on the mother's side became close since the little girl's parents would take her on the weekends to the house where she had grown up to the age of three.

'My mother always helped me a lot as early as the commuting period and I strove to keep on working, to focus in spite my hallucinations. I have been strong and stood firm. Don't think that I was wasting my time. I used to examine up to 30 patients a day, they came from the entire village and the nearby', she remembers. But that hardship in those years of commuting through the country - 'a cruel life' - as her mother puts it - had meaning and counted a lot. The difference between persons who suffer from illnesses of other organs and those who are mentally ill is that the former are coddled and protected from any effort, while the latter need work and socializing because isolation turns them into a vegetable, absorbs their strength and further wrecks their contact with reality, which they strive to maintain.

'I kept going to work and I had no time to think of the disease', says the doctor. 'I tried to avoid conflicts and keep a low profile. People generate conflicts because they want to have the control. But one can have the control also by keeping silent. I tried not to pay attention to the disease. Everything depends on one's will: not to live in the past and to focus on the present and future. The important thing is to find a goal in life and to avoid conflict with yourself'. This lesson of wisdom and balance comes from a person whom a mind disturbance would have predisposed her to an unending conflict with herself and others. 'You might not believe it, but it was me who has maintained the balance in the house for 12 years of marriage, 12 years that have now vanished into thin air. And almost always I earned more money than my husband. Moreover, for a few years, it was me who ensured subsistence of the family after he lost his job', says the doctor, and these details have been confirmed by her mother and her shrink as well.

'When she used to provide the basics for the entire family, they did not consider her insane'

Together, they rose above all hardships. Her sufferance and problems with his parents, then his job-related troubles kept them united. Their marriage started to go awry when other problems started to get solved. My husband found a new job and was often away on delegations. 'I found a discount coupon attesting to restaurant meals for two people. I understood that he was cheating on me', she narrates the situation that was to lead to the divorce and to the court trial for the child custody.

As for the custody trial, the doctor believes that the moral authors of all of this are her in-laws who tried to disunite them many times. Not because she wouldn't be a good mother and wife, but simply because she was 'insane'. 'When she worked for the entire family and invested all her earnings in the house in which only he and his parents now live, she was not insane. She worked hard and left them everything', says the doctor's mother, who describes the custody trial as hardly bearable harassment, fearing that her daughter might have a sudden relapse. The doctor never gave up to this scandal which, says she, caught the judges flat-footed.

In order to win the case, her husband came up with a dossier designed to convince the court about the care for the child. 'Every Monday, they would take her from us and keep her the entire week for, they say, private lessons. On weekends, they would take her out shopping and have her sign. The baby used to cry and say that she wanted to go home, and thus the father had to yield. He would leave her in the street, in order not to greet us' the doctor's mother recalls.

During the trial, my husband's lawyer pleaded for my child to be left in the custody of the father because the mother would have some hallucinatory fits. 'They said nasty untruthful things about me, that I was somnolent and that I would let my daughter stay late watching telenovelas, and other lies', the doctor recalls.

'My father used to offend me, by calling me stupid'

The little girl entered the room and insisted that I talked with her, too. The mother and the grandmother left the room at the request of the little girl. 'He had me write and sign on a white sheet attached to the supermarket invoice: «today my father bought me a plaything worth __» I told this to the judge too. It is absurd what my father did', tells me the little one, student in a famous college in Iasi, who told the court that she wanted to stay with the mother and the grandmother, not with the father: 'He used to offend me by calling me stupid and would always remind my of one poor grade in the 5th year'.

She also tells me that she is happy now that this dreadful trial is over and she lives quietly with her mother and grandmother. What she wants is that the grandparents on the father's side give her the tomcat, as they were very close friends. 'I want my little tomcat back, I used to dress him in baby's clothes and go out with him. He very seldom mewed and used to bring my toys back in his mouth', the girl says.

Spring came, summer will come soon, and the mother will take her on a trip to Turkey: 'I have plans: I am modernizing my cabinet, because one always has to be better than the competitors. I want to build another story for my parent's house in order to have a separate apartment, only for me and my daughter. With God's help I will go on. I don't hate anybody, life is beautiful. I am born again'.

Two million people are annually diagnosed with schizophrenia

Schizophrenia was formally described in 1852 by the Belgian psychiatrist Benedict Morel, who named it precocious dementia. In 1896, German psychiatrist Emil Kraepelin applied the term precocious dementia to a group of illneeses emerging during adolescence and ending in dementia. In 1908, the term 'schizophrenia' was introduced by Swiss psychiatrist Eugen Bleuler. Schizophrenia is a psychotic trouble with unknown etiology, with structural and functional abnormalities which are visible only through neuroimaging. It is characterized by positive symptoms (delirium, hallucinations, unorganized behavior) and negative symptoms (affective flattening, alogia, avolition). These symptoms affect thinking, feelings, behavior and social and occupational functioning.

The evolution of this disorder presents a great individual variety, according to various factors: age when it occurs, level of education of the person and social environment. The earlier the psychosis appears, the darker the future. Studies show a higher degree of complete recovery with persons having an intellectual level above average. Some researchers show that women are more likely to have favorable evolutions. In 50% of the cases, the psychosis occurs before the age of 25, in 70% of the cases the psychosis occurs before the age of 30, and in 90% of the cases it occurs before reaching 35. Between 32-45 the incidence decreases, yet without reaching zero.

The evolution can be simple and continuous, or undulating, that is cyclic or intermittent. Of the first category, the chance of developing serious chronic forms is 10-20%, and in the second category the chance of leading to minor forms, down to complete recovery is 30-40%. Remissions fall into various types: type A allows reintegration of the person into the family, society and profession, at the same level as before; type B allows reintegration, however, at a lower level in regards to profession; type C allows integration in the family, with permanent surveillance, but without excluding the possibility of occupational therapy; type D, the most serious, involves only stabilization of symptoms, excluding the possibility of integration either in the family or society. Even in such cases, occupational therapy is recommended.

Treatment for schizophrenia must be individualized. It is based on neuroleptics or neuroleptics in combination with antidepressants, in cases of affective schizophrenia.

At present, 80% of the patients with schizophrenia are treated through ambulatory care.
The prevalence of this disorder is 10-12% in the case of first degree relatives and rises in the case of children whose parents are both sick.

If relapses do not occur within a year, the treatment is reduced by 10-20%, provided that the first signs of relapse are observed: anxiety, insomnia, seclusion and strange behavior.

Group, behavioral, and family therapies (for instance, discussing problems jointly) lead to reducing the relapse rate.

In Romania, there are few support associations for people with mental health problems. Among the most active are 'Estuar' Foundation of Bucharest and 'Orizonturi' (Horizons) Foundation in Cimpulung Moldovenesc. Both organizations develop community actions which involve persons with mental health problems as well, public meetings with representatives of the institutions that can help them (hospitals, employers' representatives, police representatives). The two associations publish two magazines in which persons with mental disorders are involved. People share their experiences and describe their lives with disease and stigma.

The most famous case of schizophrenia: John Nash, Nobel Prize laureate

John Nash, the mathematician diagnosed with schizophrenia, Nobel Prize laureate and hero of the movie 'A Beautiful Mind' continues to be a topic of discussion in congresses on psychiatry. It is on his case that Professor Michaela Amering, from Vienna University of Medicine, delivered an account within a community psychiatry workshop under a PHARE project coordinated by clinician psychologist Mugur Ciumageanu, from Bucharest, and by Professor Heinz Katschnig from Vienna. 'Last year, in the American Psychiatric Association, John Nash spoke in front of 5000 people about how he got sick and is well again', said Mihaela Amering. When he was young, John Nash felt very different from those of his generation, but also more intelligent, failing to find his place among them. This feeling led to his isolation and, later, to the emergence of the illness which tormented him for 30 years. 'He reached the opposite, considering himself inferior and running like a drifter up and down the university campus', narrated Michaela Amering. But with the help of his family, he managed to live with the sickness, attaining scientific achievements that earned him the Nobel Prize. 'In his older days he returned to a life that was reminiscent neither of his genius past nor of his sickness times'

Seven messages about the recovery from psychic sufferance

During a training workshop for professionals from psychiatric institutions in the field of community psychiatry financed by the EU under a PHARE program, Austrian professor Heinz Katschnig, from Vienna University of Medicine, listed seven essential messages concerning the recovery from a brain illness:

1. Recovery is possible even in utterly severe cases of schizophrenia, bipolar disorder, and schizo-affective disorder.

2. Without hope there is no recovery.

3. Each recovery is different.

4. Recovery is not a linear process.

5. Recovery can take place even if some symptoms are still present.

6. Most of the times, disease and recovery alter the person: it is not a return to what it was before, but a development into something else.

7. Recovery is possible both with and without medical help, or even in spite of professional help.

Copyright 2009. Used with permission from Emilia Chiscop and Ziarul de Iasi.