Monthly Archives: April 2012

There is a deafening silence

 

If you are going through hell; keep going ! by Winston Churchill

 

Why do so few people fail to speak freely about the fact that there is mental illness in their families?

 

Why don’t people know how to behave where mental illness is concerned?

 

Why is there a deafening silence where mental illness is concerned?

 

I felt as if I were drowning in mental illness. That’s what we spoke about, thought about, read up about and even wrote about.

 

Keeping very busy helped me and there were times when I gulped down my food  vacuum cleaner style.

 

Do you know how difficult it is to have a mentally ill person at home and still find time to give to the other children?

 

My son’s schizophrenia held me in its grip day and night for 16 years. I tell my story as a way of loosening the noose that held me captive for so long.

 

I tell my story in the hope that other mothers will speak out and by doing so, help to reduce the stigma associated with mental illness.

 

I tell my story to show mental health consumers that I understand them and want to help speed their acceptance into the community.

 

I tell my story in the hope that politicians will take up the subject of stigma, even though they obviously feel that it won’t do anything for their political careers?

Sir, you will either die on the gallows or of some unspeakable disease!

A member of the British Parliament to Disraeli: “Sir, you will either die on the gallows or of some unspeakable disease!”

“That depends,” replied Disraeli. “whether I embrace your policies or your mistress.”

A soldier called his parents to tell them that he was finally returning home from Vietnam. When he arrived in San Francisco he said, “Mom and Dad, I’m coning home but I have a favor to ask. I would like to bring a friend along with me.”

“Sure,” they said. “We’d  love to meet him.”

“Er, there’s something you should know,” their son continued. “he was pretty badly hurt  in the fighting. He stepped on a landmine and lost an arm and a leg. He ahs nowhre else to go and I want him to live with us.”

“Sorry to hear that son. Maybe we can help him find a place to live.”

“No, Dad. I want him to live with us.”

“You don’

t know what you are asking of us, my son. Someone with a handicap like his, would be a terrible burden on us. we hae our own lives to lead and can’t let somehing like that interfere with our way of life. Come on home and forget about this guy, will you? He’ll manage.”

At that point, their son replaced the receier and they heard no more from him. A few days later, they received a call from the San Francisco police.”Your son has fallen from a tall building and died. we believe it was suicide,” the police officer added.”

 

“We’re on our way,” the grief stricken father replied. On arrival, they were taken to tthe city m orgue to identify their son’s body. They recognized him immediately but to their horrow, the discovered something their son had  not disclosed. His body only had one arm and one leg.

These parents are like many of us. We find it easy to love the good-looking amongst us who are fun to hae around. We don’t like people who inconvenience them. We would rathr stay away from people who are hot as healthy, as beautiful or as smart as we are.

Thankfully, there is someone who will not treat us that way, someone who loves us unconditionally, who always welcomes us into the family regardless of whoeer you believe i, to find the strength you need to accept people as they are, and to develop empathy and undeerstanding for all the people who are different. They have feelings too.

Friendship ios a miracle that dwells in our hearts. Friends are rare jewels who made mney smile and emerged as oncer. hwy lend an ear, wshare a word of praise and are always ready to oen their hearts up to us..

When one person suffers from a delusion, it’s called insanity. When many people suffer from a delusion, it’s called prayer.

LABELLING AND STIGMA

My husband used to say: “Before you label a person, study their contents.”
When someone calls a person schizophrenic, manic or hyperactive, think about how hurtful these labels can be. In the USA, I heard the following public service announcement; STIGMA IS A TOXIC, DEADLY HAZARD WHICH MUST BE ELIMINATED. Let’s all adopt this.

Labels lead to stigma, then stigma leads to discrimination. We all know that we should not discriminate against people because of race, religion, culture, health problems or appearance. How about mental illness?

i met people who had recovered from bouts with serious mental illness and noticed that the label they had been given, had a long-lasting impact on their perception of themselves. So, labels stick.

If parents proclaim; “My son is bipolar,” they are giving him a label that is damaging as it hurts their son and affects his view of himself. It’s as if the word bipolar sums up his whole existence, meaning that the rest of us don’t have to take that person’s actions too seriously because he has been labeled and is no logner seen as a serious person.

I have heard said that one of the reasons for stigma is that people tend to look at mental illness as something that never goes away. Attaching a sense of permanence seems to justify it somehow.

Forgive the comparison, but Hitler took the idea of labeling and stigmatizing to the extreme and exterminated all those with a mental illness. He also labeled people who did not fit into his scheme of the perfect human and we know what happened to them.

I have read that some people who suffered from bipolar illness bcame medical doctors, professors, teachers or lawyers, for example and are active, productive members of their community, no less so than any other professional.

Most of our schools no longer use blackboards. Whiteboards which do aawy with the need for chalk, are in. The dry markers now used can be wiped off easily. However, if someone writes on the whiteboard with a permanent marker and leaves the writing on the board overnight, it is very difficult to erase the following day. Long after the marks have been cleaned off, an underlying image remains. This illustrates the issue of stigma on psychiatric patients. Psychiatric markers or labels have a tendency to be more like a permanent marker than an erasable one. Labels stick and can be used as a weapon by those who are close to the person suffering with a mental health disorder.

Some types of schizophrenia like the one our son suffered from, are considered serious and I think it was one that the psychiatric professionals might not have fully understood. However, the label, paranoid schzophrenia became permanent. Our son was told:”You will always have to take medication.”
Instead of searching for a way to help him deal with the disorder or teach him how to live with it so that he could get on with his life once he was in a better state of mind, his psychiatrists gave us all to understand that his illnes could only be controlled or subdued with the help of doctors and powerful psychotropic drugs that these learned gentlemen prescribed.

We met some young people in various psychiatric hospitals who no longer manifested symptoms of the diagnosed disorder over a longish period of time and the same psychiatrists said; “You are in remission,” implying that the cure was not final and that the illness could recur at any given time.

My question is: HOW ABOUT GIVING A PATIENT SOME HOPE? EVEN PSYCHIATRIC PATIENTS ARE HUMAN BEINGS WHO ARE NOT ABLE TO LIVE WITHOUT ANY HOPE?”

Today’s psychiatry assigns permanent labels and seems to be less concerned with addressing the causes and lifestyle changes as a solution, so labels result. Therefore, a eenageer who is labeled, will be consigned to a lifetime of strong and debilitating psychiatric medication which is a serious prospect, like consigning a young person to a life of going in and out of psychiatric institutions. Is this what psychiatry is about?

I often saw a look of helplessness flit across the faces of some of my son’s psychiatrists and told my husband. All they seem to know is is how to prescribe medication, tell an orderly to give the patient a shot to subdue him, or put him in restraints. Where oh where is treatment, talk sessions with the patient and – please, try a bit harder!

To everyone out there who has been given a psychiatric label, don’t let it stigmatize you. You need to gain a victory over stigma.

(To any psychiatric professionals who have time, read the account of what happened to my son in various psychiatric hospitals and please, when you are treating a very ill patient, think of my son and what we all went through. He didn’t make it although he fought his demons for 16 years.)

DAVID’S STORY by Jill Sadowsky – an e-book on Amazon’s kindle store.

Are some psychiatrists guilty of discrimination?

Michael Burge, a mental health advocate, took time off from his busy schedule to send me a youtube clip broadcast by ABC NEWS and for that I thank him. See the transcript of the clip below.

TRANSCRRIPT

CHRIS UHLMANN, PRESENTER: “It’s well known that public stigma is a huge hurdle for those with a mental illness. But, are Australia’s doctors and medical professionals just as guilty of discrimination? A new report obtained by 7.30 (news)reveals disturbing complaints of doctors failing patients. Even the nation’s peak medical body admits there’s a problem. Some patients just aren’t getting the care nor the respect they deserve.”

HAYDEN COOPER,REPORTER, HAS THIS REPORT:

“In any given year, up to four million Australians fight a mental illness. It’s a path that many are forced to walk, and one that they are forced to walk alone.”

ALEX GULASH: a mental health patient; “It’s just good being able to talk to you about it anyway. Being able to talk about it in general is good.”

MICHAEL BURGE, MENTAL HEALTH ADVOCATE: “Oh, any time, any time. That’s what friends are for.”

HAYDEN COOPER: “A Brsibane woman Alex Gulash, has endured psychotic episodes and depression over many years.”

ALEX GULASH: “The sorts of things that happened to me were pretty typical of psychosis; I became paranoid, and then it turned into fully blown delusions.”

HAYDEN COOPER: “But her lowest moment came when seeking medical help for what later turned out to be a physical and NOT a mental illness.”

ALEX GULASH” “Because I had a history of mental illness, it was immediately assumed that I was mentally ill and needed to be in a psychiatric unti and take psychotropic medications. I was in a delirium, a very confised delirium and I remember at different times asking people ; can you tell me what’s happening to me? I don’t understand what’s happening. I’m sorry but I’m getting very upset. And this is what I am talking about. This is why I’m here. because of the traume it caused. You have no idea what I experienced in that psychiatric unit, unless you’ve been in one. They considred me to be uncompliant, and said that I was refusing treatment. I had my arm bent up behind my back so far and so painfully that I screamed out loud at the top of my lungs. And I’ve never screamed like that in my whole life – not from pain, anyhow. And then I was told to get up and walk.”

HAYDEN COOPER: “So how common are stories like this, where even medical professionals discriminate against mental health patients?”

ALEX GULASH: “Why should there be such a stigma around mental illness? It’s really just caused by ignorance and fear.

HAYDEN COOPER: “Advocates like Michael Burge believe it’s all too common.”

MICHAEL BURGE: “We’ve all been subject to, or on the receiving end of some condescending, patronising, tokenistic, intimidating,discriminating institutionlized attitudes.”

RACHELLE IRVING, MENTAL HEALTH COUNCIL: The behavior of mental heealth carers is even more stigmatic than that of the general public which is a very disturbing factor that has to be dealt with.

HAYDEN COOPER: In a landmark new study, the Mental Health Council has set out to quantify the problem. In a survey of 400 patients and 200 carers: 29 percent of patients report feeling shunned or avoided by health professionals. More than a third were advised to lower their expectations in life because of their mental illness. And this applied mostly to patients with schizophrenia, personality disorder, post-tarumatic stress disorder and depression.

Almost half of mental health carers believe doctors behave differently when they discover a mental health history. There are complaints of poor care which has been closely followed by psychiatrists. But psychologists fare the best.

The report includes the traumatic personal stories of mental health consumers.

MENTAL HEALTH CONSUMER 1: “I’m very nervous about sitting in a hallway with MENTAL HEALTH plastered against the wall behind me in a public area.”

MENTAL HEALTH CONSUMER 2: “I was in the emergency area of the hospital and overheard a treating doctor asking another doctor -if it was full moon!”

MENTAL HEALTH CONSUMER 3: “The staff’s attitude towards me changes when they realize I have a history of mental illness. – It’s as if they think they can catch it from me.”

MENTAL HEALTH CONSUMER 4: “We sat in a room listening to a psychiatrist tell our 18-year-old daughter that she should stop expecting anything fron life because she has a mental illness.”

RACHELLE IRVING: The attitude of the mental health carers as far as stigma is concerned, is even worse than that of the stigma meted out by the regular community, which is very disturbing to us.”

MICHAEL BURGE: Countless numbers of times I’ve heard stories of consumers being told; “You are never going to get out of this hospital. You’ll never be off medication. You’ll never have a real job. You’ll never be able to look after yourself properly in the community without support. In other words, they’re giving the prohecy of doom to people who go to them for help. They don’t instill any hope in them whatsoever.”

DR. STEVE HAMBLETON, AUSTRALIAN MEDICAL ASSOCIATION: “The first failing is acknowledging that there is a problem.”

HAYDEN COOPER: “The Australian Medical Association, via its president, is up front about the system’s failures.”

STEVE HAMBLETON: “It’s a small number of people and it’s a voluntary survey, so you will get the extreme views but some of those views have revealed a problem that we need to respond to. We have to recognize that stigmatization by health care providers actually impairs the clinical working relationship between professional and mental health consumer.”

HAYDEN COOPER: “The Mental Health Council will now surey professionals to find out if more training will fix the problem.”

RACHELLE IRVING: “It’s terrible and I think that we need to try and work out why, as a first step – and then move on from there. But, this is not acceptable.”

ALEX GULASH; “There are a lot of good people who work in mental health.”

HAYDEN COOPER: “As for Alex Gulash, she hopes her experience can help patients and doctors alike and fix the failures in the way those who need help the most, are treated.”

ALEX GULASH: “What happens is that they immediately see you within that filter. You’ve got a label on your forehead. Psychiatric patient, a person with a mental illness and they see everything within that context.”

MICHAEL BURGE; “The people with a lived experience, may forget exactly what you’ve said to them. They may even forget exactly what you did. But they will never, ever, ever forget how you made them feel.”

A flea and a fly and a flue

When my son was in a psychiatric hospital, a friend suggested that I try meditation. Not knowing much about meditation, I decided to give it a try. She sent me a CD via snail-mail and told me to listen to the disk at least twice a day and follow instructions.

I disconnected all the telephones, took off my moccasins, slipped the CD into my disk player and listened to a soothing voice say; ‘Lie down, assume a comfortable posture. Close your eyes and relax. Focus your attention on your belly, feel it rise then expand gently as you inhale and watch it recede as you exhale. If your mind wanders, gently bring your attention back to feeling of your breath going in and out.’

I felt pretty relaxed and was actually enjoying the feeling of calmness and peace, until I remembered that I hadn’t confirmed the appointment with my dentist for the following day. So, I jumped off the bed, ejected the CD, made the call, then padded back to the bedroom and started all over again. I lay down, closed my eyes and tried to keep my attention on the soothing voice telling me to relax and clear my head of all thoughts. I tried hard, really I did, but then I started giggling. I have no idea what triggered my memory of the jingle that my late son had chanted to me one day when he told me he’d found a jingle on the internet written by an anonymous author. Somehow, I heard it as if it were yesterday.

A flea and a fly in a flue
Were imprisoned so what could they do?
Said the fly; “let us flee.”
“Let us fly;” said the flea.
So, they flew through a flaw in the flue.

By the time I was done laughing, it was not possible to return to meditating again so I gave up and resolved to try it another day, but sadly, that did not happen.

I searched for other ways of handling stress and read up about it. The first step was to recognize my symptoms and then to act the way I always did when mastering a new skill which was to keep very busy. So, I agreed to give a talk at a psychiatric hospital about the stress in my family caused by my son’s mental illness and told my audience of psychiatric professionals that my husband and I had decided to master and survive what life had thrown at us and try to convert stress into a positive force. Each one of us started doing things that we liked and that made us think less about schizophrenia in the family and more about the positive things in our lives.

My biggest problem was anger. I was angry with the world and blamed my son’s doctors for not doing enough to make him better. After all, why do people go to the hospital if not to be cured? It took me a while to realize how destructive anger can be. When I felt bouts of anger coming on, I took a spade and worked hard in the garden; no – correction; I actually attacked the plants in the garden. At other times, I walked along the beach or sat watching the waves break on the shore.

One day, my husband brought a computer home and after learning to master ‘the monster’ as we called it, I began to put my thoughts down on paper. I wrote about what transpired in our house daily and after a while, my anger took a back seat and other thoughts replaced it.

I dwelled on the positive instead of on the negative and being busy with less time to think about mental illness, there was more balance to my life. What I wanted most of all was to have my happiness back. We’d been such a happy family before schizophrenia took us by surprise. Happiness? What is happiness? It’s finding one enjoyable thing to do every day. It’s about learning to appreciate spring flowers, a stunning sunset, a child’s laughter or a good book. It’s about smiling at those you love, and most of all, it’s about love.

Change did not occur instantly, but in time, not only did we benefit as a family, our son also found things to do instead of lying on his bed for so many hours a day. He might have walked our dog too much, or spent too much time at the beach, but at least he was doing something and following our example.

“You are very special … don’t ever forget it,” was what my husband always told us all …”you can slip into a depression,or you can try to cope.”

There have been times in my life when I felt worthless. I know that the lives of most people don’t go smoothly, not always the way they dreamed they would, rather, they have ups and downs, some more serious than others.There were times when I felt as though I had been dropped and crumpled, either by bad decisions that I had made, or circumstances that came my way.

  • Our first baby was born six weeks prematurely and only lived for three days.
  • One of our daughters had what the specialists called a one in a  million accident and to this day, I am full of admiration for the way she has dealt with it. She makes the most of her life and together with her loving husband has brought up three delightful children. I am proud of her.
  • Our son was diagnosed with paranoid schizophrenia after he was released from the military; and although he came home to us physically, mentally, he was missing in action and because he was medication resistant and realized that he would never have the peace of mind that he yearned for, he ended his suffering and went to a place where I hope he found calm, quiet and waves fit for a surfer.
  •  He is the reason that I started writing books and blogs because I promised him that I would work toward trying to lessen the stigma associated with mental illness and other handicaps.
  • At that time, I kept hoping that there would not be any more tragedies in our lives. I wondered what we had done to deserve such pain and suffering in our lives and hoped that once what was left of our family had managed to cope with our terrible loss, we could work toward living a happier kind of life.
  • Many years later, I noticed changes in my husband, and the diagnosis was Alzheimer’s. He passed away two and a quarter years ago.
  • No matter what has happened to our family, we are determined to cope. My daughters are very special people and have been supportive all the way, through thick and thin, so, my husband and I must have done something right. There have been times when we thought we were to blame for schizophrenia until we read a book written by a psychiatrist telling us that NO ONE CAN CAUSE SCHIZOPHRENIA.
  • My message here is; one has only two choices in life. One can slip into a depression or, one can pull together as a family.  We chose the latter.

Believe in yourself

 

How many of us say; ‘I’ll do it tomorrow?’

How many of us mean to do things but seldom get around to doing them?

Well, one day, my neighbor asked whether I’d like to spend the day with her. “Sure,” I said. “Where are we going?”

“Surprise,”was all she would say.

We got into her car and drove  for a few miles then turned down a narrow road that was more like a path than a real road. On the right side as we drove in, I saw a handwritten sign in large upper case letters that read; DAFFODIL GARDEN.

We got out of the car and walked along the path. As we turned the corner, I looked up and gasped.  It looked as if someone had taken a great amount of gold and poured it over the mountain’s slopes. The flowers bloomed in swirling patterns of deep orange, lemon, salmon and buttercup yellow. Each group of colors was planted in such a way so that it seemed to flow like a stream; each its own hue. What amazed me was that there were about  five acres of flowers.

“But … who did this?” I asked my neighbor. “One woman was responsible for it all and she lives in that small house over there. We walked toward it and on the patio saw a poster saying;

Answers to all questions –

  • The first answer was; 50,000 bulbs.
  •  The second answer was; one at a time, by one woman;  two hands, two feet sand one brain.
  •  The third answer; began in 1958.

I thought of the woman I’d never met, who had begun forty years ago, one bulb at a time, to bring her vision of beauty and joy to an obscure mountaintop. By planting one bulb at a time, year after year, the unknown woman had forever changed the world and created something of extraordinary beauty and inspiration to others

Don’t wait for tomorrow to say; “I love you. Say it now.”

Don’t wait for next week to organize your desk. Make time to do it.

Don’t wait for tomorrow to start that healthy eating plan. Start now.

Don’t wait till you retire to take that overseas trip that you have always wanted to take.

Don’t visit family abroad only when it’s for a funeral. Go when everyone is healthy and enjoy their company.

If you believe in something, it can come to pass. Believe in yourself.