Monthly Archives: September 2013

Sharing is caring

two rosesHow about saying the following when talking to a chronically ill person or a family in trouble?

I prepared too much dinner today. Can I bring some over for you?

Tell me what it’s really like to be you for 24 hours.

I bought flowers to cheer you up. Is it okay to put them in a vase?

I have no idea how you are feeling, but I will always listen to you.

Has your cleaner returned? If not, is it okay to bring mine over just this once?

It’s hard for me to sit still for long periods, so if there is any laundry for me to fold or throw into the washer, just say the word.

I cook on Fridays and this week I plan to make lasagna. I would like to make extra for you. But, if you prefer chicken I can do that. It’s no problem.

I’m going to the supermarket. Need anything?

If you need a good cry, I have plenty of tissues in my bag.

I want you to know how much I admire the way you are handling all this. I can imagine how difficult it must be.

The word schizophrenia in a political debate?

August 29, 2013. I opened the newspaper and imagine my surprise to see the following heading screaming at me. Schizophrenia in two state solution. I thought that the place to find an article on schizophrenia was in the Health Section of the newspaper.

To everyone out there, I am going to tell you what schizophrenia is and what it is not, once and for all.

Myth   It’s a split personality.
Fact    It’ not a split personality. These people are split from reality.

Myth   Schizophrenia is a rare condition.

Fact    It is not rare. The lifetime risk of developing schizophrenia is widely accepted to occur in around 1 in 4 families.

Myth   People with schizophrenia are dangerous.

Fact    Although the delusional thoughts and hallucinations of people with schizophrenia can lead to violent behavior, most people with the illness are neither violent nor a danger to others.

Myth   People with schizophrenia can’t be helped.

Fact    While long term treatment might be required, the outlook for schizophrenia is not hopeless. When properly treated, many people with this illness are able to enjoy life and function within their families and communities.

And how do I know all this? I did not get it from textbooks, nor from lectures or psychiatrists. I know all this because our beloved son suffered for many years from schizophrenia and I promised him that I would try to lessen the stigma associated with this illness. I vowed to help whoever needs my help because I don’t want a single mother out there to feel as lonely and uninformed as I did when our son was so ill.

 

More about the media

I always use the phrase, suffering from schizophrenia and NOT schizophrenic but recently I read about schizophrenic weather.

A phone company advertised; This is a crazy, generous offer.

On NBC’s America has talent; one of the judges commented that a group of contestants resembled people who had exited a mental institution.

Dr. Phil, the TV pop psychologist tried to reassure a woman with compulsive behavior that she was not insane because insane people suck on rocks and bark at the moon. I have no doubt that he regretted saying it the moment it was out of his mouth, but the damage was done.

Brian Williams, anchor on NBC’s Evening News, referred to a kidnapper and rapist as arguably the face of mental illness. He apologized.

CBS announced that they are about to premiere a new show called The Crazy Ones starring Robin Williams, who in real life copes with bipolar disorder, but after checking previews, it appears as if the show has nothing to do with mental illness. It’s a comedy where crazy ideas turn into genius.

 Is it necessary to hear this kind of thing? Think of how a person who has a mental illness must feel, please.

Why I tell my story

end mental health discriminatiion

Someone asked me why I tell my story. That person also asked why I don’t give more information from the medical point of view. My reply, “I am neither a doctor, nor a psychiatrist so any information I give can only be presented from a mother’s point of view. There is no straight answer as life is neither black nor white.

  • I tell my story in the hope that others might understand.
  • I tell my story to make it more difficult for people to close their eyes and their hearts to all the mental illness around them.
  • I tell my story to gain empathy for all those people out there who are suffering from one kind of mental illness or another and to show them that they are not alone.
  • I tell my story to try and convince people suffering from a mental illness that with the correct treatment, their condition can be improved.
  • I tell my story to gain support for them. If they have the backing of their community and family, they have the chance of a life with a purpose surrounded by love.
  • If we all tell our stories, maybe some of the people out there will listen, believe, and even act on our behalf.
  • No politician truly believes that he/she will gain extra votes by devoting more time to the issue of mental illness, but maybe … that time is now.
  • I tell my story: the story of one family, but it is also the story of millions of families living with a mentally ill relative anywhere from Africa to Alaska.
  • I tell my story in the hope that one day, there will be no stigma associated with mental illness.

stop the stigma

 

56 ways of saying I don’t remember

http://www.youtube.com/watch?v=_Mf3Z8asXB8&feature=youtube_gdata

(The item before the clip takes a few seconds. Please wait)


The above link was in the New York Times. Alan Berliner explores memory and forgetting in this documentary about his cousin Edwin Honig, a poet, a translator and professor as well as his journey through Alzheimer’s disease.

It made me cry as my husband went through something similar though managed to evade saying; ‘I don’t remember.’

S T I G M A

i just wanted to be wanted

S T I G M A

Stigma is defined as a sign of disgrace or discredit which sets a person apart from others. The stigma of mental illness remains a powerful negative attribute in all social relationships.

Stigma is a marker for adverse experiences, among them, a sense of shame, and is still perceived as a sign of weakness.

What my husband and I learned from our ill son was:

Stigma means not having access to resources.

Stigma means being reviled and becoming invisible.

Stigma brings with it intense shame, resulting in a feeling of

             decreased self-worth.

Stigma  is connected to secrecy.

Stigma causes anger which results in keeping one’s distance.

Stigma brings hopelessness, resulting in helplessness, and no

    Noone can live without hope.

 A civilization should be judged by the way it treats its mentally ill and its senior citizens.

                                                              stigma         

Is it possible to have meaningful friendships despite having a chronic illness, a mental illness ….?

Is it possible to have meaningful friendships despite having a chronic illness, a mental illness or a handicap?

All of a sudden, when being L’s friend required them to actually visit more regularly and offer to help out more, it resulted in the dwindling of  friendships, which was hurtful.

While so many relatives and friends stood by L, losing people she’d considered close, was a painful process. Chronic illness forced her to see her world in a different way. Her life no longer revolved around trivia. She needed a calm and positive environment while keeping stress down and managed to create a  happy lifestyle in spite of the fact that she suffered from unbearable pain sometimes. I was under the impression that she cherished people who stopped by to chat, to suggest a coffee outing, or do whatever needed doing.

This got me thinking. Why do people let friends with chronic illnesses suffer alone? Can turning one’s back on them be good for them or for you?

I admire  L’s coping strategies:

  • She stays connected, potters in her garden and writes.
  • She remains positive and even made me smile when she told me that she’d ridden at the back of a motor cycle the other day; very slowly, I hope.
  • She knows how to enjoy herself when she is not in too much pain.
  • She is the most organized person that I know. Maybe this helps provide her with a feeling of stability amongst the uncertainty and chaos of her illness

I would like to see her friends pull together and make a roster so that there could always be someone around or on call. It’s not the time to drift away. This is the time to draw closer.

R was visibly upset when she talked to me about her 20-year-old son who was diagnosed with schizophrenia. She cried when she said; ‘Our friends seem to have forgotten all about us. I wonder where they are. Do they ever think of us and what an impossible time we are experiencing? R and her family feel abandoned but can do little about it due to the demands of their child’s illness, trying to grope their way through the maze of the medical system and worry about their other children who also deserve attention. They have no option but to cope alone.

Could the lack of commonly understood rituals for mental illness be the culprit? Could the persistent stress or sustained grief have something to do with it? One grieves for a very ill person even while they are alive. My husband and I noticed that people coped better with the finality of our son’s death than with his schizophrenia. While David was ill, some of the above applied, but after his death, hundreds of people attended his funeral, visited us afterwards in hordes, cooked food, baked cakes and other goodies, and if they were unable to cope with this, they sent cards.

But when loss is not final and stress is ongoing, it is a different story completely. No cards, not even a box of chocolates while David was in the hospital. No ceremony, no rules for handling the grief that keeps on popping up both for the family, supportive friends, neighbors and relatives. I know that I suffered from chronic sorrow for all those years that David battled against chronic, paranoid schizophrenia. We were not in a position to invite friends often, even though we both loved people. We had far too much to think about and to worry about. We were exhausted as we both worked and David’s calls and disturbances late at night did not allow for much rest. This is only one reason why families in trouble need support groups.

Our society teaches us to avoid unpleasant situations.  We are taught how important it is to work, make lots of money and then spend it in malls or restaurants. Many chronically ill people can no longer go to work so there is a lot less money to spend which is so unfair as they then have the added problem of making ends meet.

While attending two different support groups, we heard that there are husbands who walk out, leaving their wives to cope with mental illness in the family or leave their wives who are suffering from a chronic illness. Of course there are women  who walk out too; probably less.  This is the easy path to take but of course there are those who remain no matter what. ‘In sickness and in health,’ is an easy vow to make when both parties are young and healthy. Do they ever think of the implications for the future? Probably not.