Tag Archives: Schizophrenia

Watch my “Interview with Albert Ekema diagnosed with Schizophrenia 25 years ago”


He lives with me and it’s been 5 months of so much loving, learning and living.

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Questions to an Author: Jill Sadowsky


ask-the-author-answers-edition

 

Hello world, with barely a day to go before the Month of May is over, let’s wrap up with my Granny Jill’s interview shall we? So yes here we go after P1 of yesterday:

  1. Can you tell if there was a difference in the way your son was treated before and after he got that diagnosis?

No, because we realized much later that the doctors suspected paranoid schizophrenia very early on, but they are not keen to diagnose such a serious illness in someone aged 20. Doron entered the military in Israel with a medical profile of 96 and when he was released, he was like someone missing in action. For 18 years, people thought of our Doron as ‘normal.’ For the next 16 years, they called him mentally ill. But, we always called him Doron. Our once gregarious son was ill, vulnerable and scared. He’d lost his sanity and grieved for that loss. He’d lost confidence, suffered harassment and discrimination. IF someone did agree to hire him, they offered such a low salary that it was insulting.

  1. If you wouldn’t mind, can you tell us any short or long term effect to your own mental health as a result of your son’s mental illness?

It affected the whole family. My husband, who devoted a tremendous amount of time to Doron, became  stressed as he was running an accountancy business. Our daughters did without sufficient time and energy from us, without vacations, without extras as every available cent was poured into another prescription drug, another treatment, a new psychiatrist. We did without too – we minded less. Our daughters no longer brought friends home. They returned from school, ate then fled. I learned about stigma: “She’s the one with the crazy son! Of course it affected me, no matter how much I tried to ignore it all. But, having a son in a psychiatric hospital is different. People with physical illnesses get many visitors in the hospital, are showered with flowers, chocolates and other gifts, while very few people even visited Doron. His good friends came at first until they had to get on with their own lives. We understood. Doron’s aunt and uncle were very supportive to him, something I will never forget. I learned at the support group to look for something I liked doing every day, and I did. I liked tutoring English, loved being with my children and grandchild, but, when I was very upset and down, I dug furiously in our garden. I disliked attending weddings or parties as everyone looked so happy and I was so so miserable, trying to keep a smile on my face. Later I learned from a smart psychologist, that I’d assumed that the other guests were happy but how could I know? Maybe they were also plastering ‘fake smiles’ on their faces? My friends told me afterwards that during Doron’s illness, I was extremely angry with the world. True!!!

3) The Writing

  1. Did any books/memoirs influence your writing (style, presentation, content)?

Many years ago, after Doron became ill, I read Anne Deveson’s Book entitled ‘Tell Me I’m Here.’ At that stage, I had no idea that she was a famous person. I simply felt; if she can do it, why oh why can’t I? Well, I started off by keeping a sort of diary but I jotted things that occurred in our once peaceful home onto scraps of paper which I popped into my bedside drawer. When I was asked to join a creative writing group, I typed out all the notes that I’d written and the teacher said; ‘You have a book there.” And that’s how all my more serious writing began. At first I wrote more short stories, then started slowly and painstakingly to write about what was happening in our house. Then, I didn’t even know that  1% of the world’s population suffered from schizophrenia – which is without taking into account all the other psychiatric illnesses that abound.

  1. Which was the most difficult chapter to write in your memoir and why?

Chapter 37, The Last Call was one of the  most difficult to write because of two pages. Page 224 where I wrote:-

Before schizophrenia, our three children had spent years of closeness, laughter and sibling secrets. During the years we lived with Doron’s illness, his sisters had shared their fears and tears, wishing they could escape the shadow but always drawn back to watch over, listen to and protect their older brother, who, in his healthy years, had done the same for them. It was then that my late husband had gathered us around him not long after we’d heard that our beloved son had taken his life. I want you to remember that Doron did not take his life. He took what schizophrenia had made of it. He ended his agony and I thank my son for putting an end to his suffering. I hope that he has found the peace of  mind he so desperately sought, the peace of mind that eluded him during the last 16 years of his life. Now we all have to face the tragedy of our loss.”

And a part of page 225.

On January 19th, 1996, we buried Doron. It was three months before his 34th birthday. On that dull winter’s day at my son’s funeral, the earth that had been dug out, stood in a mound ready to be thrown back. For the last time before he was buried, I talked to Doron, while in the cold, still air, I heard a thousand birds sing their songs of life.

All the people who loved Doron could finally say farewell. I saw people there who had not coped with his schizophrenia, but knew how to handle death. So many friends, neighbors and acquaintances stood, shoulders touching, their breath mingling in the icy air into one great sigh for our loss. The rabbi intoned the familiar words. His voice echoed in and out of me like surf slapping against the shore. His words didn’t comfort me. I registered simple animal sensations. My mother’s frail hand clutched mine. My daughters were trembling. My husband was crying. I was the only one unable to shed a tear. I whispered goodbye. So much left unsaid. I ached to see him on his surfboard. The thud of earth,  marker. He was gone. He didn’t say goodbye. In a tumble of memories, I saw Doron’s smile superimposed on the painful image of his anguished, tortured expression.

I love you, Doron.

REST.

1962-1996

  1. Which if any was your favourite chapter to write and why?

Chapter 27 because it showed that one can be happy in the midst of schizophrenia. Our daughters were aware of the terrible stress we were under and presented us with two flight tickets to Crete, including accommodation for four days. With misgivings, we took leave of Doron who was in a hospital at the time, hugged the girls after thanking them profusely. The flight was forty-five minutes in duration and we flew to our Greek hideout with  our son’s blessings. “I am happy for you both,” he said. Both my husband and I loved spending time together, even more so on vacation and we reveled in the fact that we had nobody to take into consideration. We relished the unexpected gift of time together, this reassurance that love and  pleasure were sometimes hidden in the crevices of pain. It reminded me that despite our woes, the world went on turning and sometimes presented extraordinary surprises. Our break on the idyllic island of Crete seemed longer than four days, and we felt whole again when we flew home. Every moment had been precious and I’d banished thoughts of mental illness, grateful that our girls had banded together to allow us this escape.  We didn’t know when or if another opportunity would present itself but we were ready to face the next round with schizophrenia.

4) So overall how did you cope?

I learned to take one day at a time. I tried to remember Doron when he was healthy and how much pleasure he had always given me. I cradled the gentle way he used to speak as if they are butterflies alighting on my hand, an event so startling, that I didn’t want it to end. Coping with the stigma was difficult for my daughters. It took me about a year to learn to live with it, yet my husband didn’t give it a thought and told his clients that he had to end their meeting early as he had to visit his son in the psychiatric hospital. Not a single client left him for that reason.

4) The Message

  1. Do you have any advice for other memoir writers especially on challenging subjects like mental health?

Today, there is a tremendous amount of material on mental health out there, both on-line and in books, so check out the market and make sure that y our book is different. There is always another angle.

  1. Do you have anything specific that you want to say to your readers?

a) I would like people to know that my late husband’s favorite quote was one of the things that kept me on an even keel while Doron was fighting his demons. Schizophrenia had to take second place whenever I read the following prayer even though I am not a religious person.

The Serenity Prayer

God grant me the serenity To accept the things I cannot change,

The courage to change the things I can,

And the wisdom to know the difference.”

b) We knew nothing about mental illness till we were thrown into its midst.  From the start, we got the message that we were to blame. Fortunately, my late husband refused to accept the blame. He didn’t allow me to either. Smart move. There are no miracle cures and not too many answers. We needed to know that parents cannot cause schizophrenia. We needed to know about the mental health society, ENOSH, the Israeli Mental Health Association to enable us to join a support group as eventually, it was a support group of 22 parents who shared my grief, fears and confusion without pointing an accusing finger at me. We learned there to take each day as it came, to change our expectations and hopes and to use humor wherever possible, something my husband did naturally. We needed to know what to say when our son told us that we ‘didn’t really want him to get better.” What to say when he threw out the food I’d just cooked, convinced that I was trying to poison him. How to behave when he trashed his sister’s bedroom or covered his window with aluminum foil to keep ‘them’ out, or slashed picture frames in his search for microphones that e had hidden there in order to help ‘the establishment.’ I needed to know how to act when he became aggressive, depressed or suicidal. What we did not need was to hear a psychologist or psychiatrist ask us; ‘well what did you do?

It was at the support group that we learned how to set limits as we still had to find time for our healthy children and for each other. We had trouble with the way the staff decided at the last minute when they were releasing a patient from the psychiatric hospital. I had to organize extra food, change my teaching schedule and my husband had to reschedule his client’s appointments. We felt the need to know what side effects each medication could cause, as well as what the illness was causing him to do.

The power of stigma is devastating and if mental health professionals and caregivers could help explain to the public that it is an disease like any other, that it is not contagious, that most sufferers are not aggressive, despite the media headlines – that they commit no more brutal crimes than so-called ‘normal people.’ Could you help floundering parents  put a sop to the stereotypes of mental illness and also tell the world that people who suffer from mental illness do not come from crazy families.

Last but not least, PLEASE give our sick children some hope. Nobody can live without hope.

If I have managed to change the attitude of just one person who reads this, my emotional upset at rehashing Doron’s story will have been worthwhile.

  1. Any other writing projects, blogging etc?

‘My son, my son,’ was published in Hebrew in the anthology UPWARDS, Chapters in Community Mental Health edited by Yechezkel Taler as well as The Last Call in the anthology Hidden Lives edited by Lenore Rowntree and Andrew Bowden and A short love story “Love on the Kinneret’ in Ang-Lit Press’ LOVE IN ISRAEL, 65 short stories in honor of Israel’s 65th anniversary.

Having reached the age of 78 but still behaving like a teenager, according to  my grandchildren, I am writing less, but still writing.

  1. Where can your memoir be found?

David’s story is available on Amazon as a kindle book.

Marie,

Thanks for giving me the opportunity to write all this.

Thank you very much my favorite Granny Jill for answering our questions. We hope to stay informed of any updates with your projects.

About Jill

my fav granny
Also called the messiah in her circles for breaking the taboo and speaking about Mental illnesses this actively

Jill Sadowsky was born in South Africa and has been living in israel since 1963. She has been writing since her son contracted paranoid schizophrenia. Granny, is a multiple award winner and her works have been featured in distinguished journals. She is a sought after speaker on brain health/illneses especially given her experience as a care giver of two loved ones lost to Schrizophrenia and Alzehmier.

And so world, with this wrap up interview, I must say I am so grateful to the Universe for giving me the Grace to blog each day for this month of May which is mental health Awareness month. Tommorrow I do a recap of the internviews and some of things relating to my mental health advocacy. Granny Jill is one of my best inspiration – my at 78 years? What do you all think?

Questions to an Author: Jill Sadowsky


David's Story
The cover says so much; the contents would move even the toughest of hearts

Hello World, very honoured to be wrapping up my interviews with authors who have written on mental health, with one I fondly call Granny. I was so delighted to talk with her on phone when I visited the US in 2015, and I was so happy when she liked the memoir I mailed her.

I have done a modest review of Jill’s heart breaking memoir on my blog, and it is my honour to interview her too. I don’t know how a mother handles her only son’s mental illness and survive his loss, I see my mum dwindling between striving and surviving but I am not in her mind. I hope Jill tells us a little how because she is one of those brave mothers!

1) The Profile

  1. Let’s Start with a brief introduction of yourself – your background – and a tiny bit from your life before mental illness struck:

I was born in Bloemfontein, South Africa in 1939 and had an enchanted childhood. I studied teaching in Cape Town where I met and fell madly in love with Alec. We married, and immediately, our relationship was a loving and caring one consisting of give and take. After our baby, Doron was born, we left family and friends to fly off to Israel, the country of our dreams.

(Doron means ‘a gift’ in Hebrew.) The real name of her Son refered to in the memoir as David

  1. About your Memoir, why did you write it all those years later and with many names changed as you say?

Because I had never written before. But, I wrote notes every night on what had occurred each day from the time that Doron became ill which was during his arbitrary military service although in retrospect, there had been some signs previously. It took time but the book called ‘Weep for Them’ was born and published – the hardcover edition in 1998 and the paperback in the same year under my pen-name Sarah Ben-Dor. Neither were translated into English as I simply could not face rehashing that excruciating experience all over again.

Years later, after we’d lost our son, I had so much more to add, that I consulted with my husband and two daughters and asked for their permission to write an updated book in English, using my real name this time. They agreed. But I had to change the children’s names as well as my husband’s while writing because that made the whole process a little less painful for me as I was reliving the 16 years of Doron’s illness all over again.

2) The Soul Journey

  1. What is your take about mental health?

When our Doron was diagnosed with paranoid schizophrenia, I had heard little about the subject and had never met a mentally ill person. Today, I am older, wiser, read whatever I can on new developments but, to date, am not convinced that there is something that could have helped our son who proved to be medication-resistant for so many years. I pray that somewhere, someone will be able to help all those who might be suffering the way Doron did. I never felt guilty about causing his illness as I had read that parents cannot cause schizophrenia.

  1. Did your feel guilty for your son’s deteriorating mental health? If yes what did you think or do, if no please explain some to us.

A few older psychiatrists pointed the finger of blame at me, but fortunately, I had read enough to know that I was innocent of that, at least. I had to do something so, I approached the Israel Mental Health Association ENOSH, and asked for permission to start a support group for parents of mentally ill children in our neighborhood, in English, as Hebrew is not our mother-tongue. They let us use their facilities and offered assistance but frankly, most of us, 22 in all, did not want to hear another professional at that stage. We met regularly twice a month and became like one large family. We could speak openly about anything to do with our ill child, confident that we could trust one another to be honest and not to speak to anyone else about what was said. I felt safe with them, so much so that they became like an extended family.

Parents cannot cause schizophrenia.

Mothers cannot cause schizophrenia. I want every single parent to know this:-

I bet you all part 2 tomorrow is equally soul searching, captivating and near gut wrenching – stay tuned

Questions to an Author: Martha Graham-Waldon P2


ask-the-author-answers-edition

Hello world, let’s continue from where we stopped yesterday, click here if you didn’t read that – Martha’s been a very deep soul journey

5. So overall, how have you been coping this far?

Writing my memoir helped me reconcile myself to my past and it has helped me to live more fully in the present. I have connected with so many people who have had similar experiences and now I am a speaker for NAMI giving presentations in high school on mental health and suicide prevention. All of that has been tremendously rewarding.

3) The Writing

  1. Did any books/memoirs influence your writing (style, presentation, content)?

The Memory Palace by Mira Bartok offered encouragement to me to tell my story. It is about her experiences living with a mother with mental illness. The Glass Castle by Jeannette Walls is another exemplary memoir that will soon be made into a movie.

  1. Did you have a writing mentor?

I utilized methods taught by Brooke Warner and Linda Joy Meyers of the National Association of Memoir Writers http://namw.org/ to sort through my writing and create a scaffolding and timeline of important turning points in my life. Studying the memoir writing genre connected me with a vibrant writing community online and in real life.

  1. Which was the most difficult chapter to write in your memoir and why?

I called one of the last chapters in my book “The Hardest Chapter”. I suppose you will need to read the book in order to find out why that is.

  1. Which was your favourite chapter to write and why?

My favourite parts of the book are the chapters in Part One called “The Magic” because as I wrote these chapters I was able to escape back into the memories of a mostly happy childhood.

  1. Did you learn anything from writing your memoir and if yes, what was it?

I learned that I am not alone in my experience. Writing my memoir was a very healing and cathartic experience and it has been gratifying to be able to help others through their healing process as well.

How long did it take you to write and get the memoir published?

It took me about seven years to write the book and find a publisher. Once I signed the contract, it took another 13 months for it to actually appear in print.

4) The Message

  1. Do you have any advice for other memoir writers especially on challenging subjects like mental health?

Study the memoir writing genre and connect with the memoir writing community. I took memoir writing courses offered through the public library and online. Read as many memoirs as you can. All these things will help you find your own voice. Don’t get discouraged and try to write a little each day, even if it’s only for 15 minutes.

  1. Do you have anything specific that you want to say to your readers?

Early treatment and diagnosis are important so you should seek professional help if you suspect you or a family member is experiencing a mental health crisis.

  1. Any other writing projects, blogging etc?

I am currently writing a novella, my first attempt at fiction. I don’t blog regularly but I admire those that do!

  1. Where can your memoir be found?

On Amazon, through Barnes & Noble, Kobo; my publisher Black Opal Books, and Scribd. Here are the links:

Amazonbarnes & Noble: Kobo: Black Opal Books: scribd:

Thank you very much Martha for answering our questions. We hope to stay informed of any updates with your projects.

About Martha

Martha Graham-Waldon is a writer, mental health advocate and armchair activist who resides in the Santa Cruz Mountains of California with her family and a menagerie of pets. Her articles have been published locally, internationally and online. She is a winner of the 2015 Women’s Memoirs contest for a vignette based on her memoir in the anthology Tales of our Lives. Her memoir Nothing Like Normal—Surviving a Sibling’s Schizophrenia was published by Black Opal Books and is available on Amazon. In addition to writing, Martha loves travel, the outdoors, Jazzercise and music.

Questions to an Author: Martha Graham-Waldon


nothing-like-normal

Hello World, during this month of May which is Mental Health Awareness month, I am as you must have noticed, doing interviews with authors who have written on mental health, especially about their personal experiences.

I have done a modest review of Martha’s memorable memoir on my blog, and it is my honour to interview her too. Having had a sibling with a mental illness (bipolar disorder), I can relate with much of what Martha writes.

1) The Profile

  1. Let’s Start with a brief introduction of yourself – your background – and a tiny bit about your Childhood:

Thank you, Marie. I was born and raised in Southern California in a family with four kids, I was the youngest. I have to say that my childhood was pretty idyllic. We were raised with an appreciation for nature and a social consciousness as well. When my sister entered adolescence, problems surfaced that affected our entire family and particularly me since I looked up to her so much.

  1. About your Memoir, how did you come up with this poignant title?

When I first starting writing, my working title was A Normal Life. This was based on a feeling I had during those challenging years that I just wanted “a normal life” although I finally realized that there really is no such thing. However, a fellow author pointed out to me that this title could be construed as sounding boring. I posed the question to the other authors in my publisher’s author group and someone came up with Nothing Like Normal which can be interpreted as either a good thing or a bad thing or both! I thought this was perfect so I went with it after adding the subtitle Surviving a Sibling’s Schizophrenia.

2) The Soul Journey

  1. What is your take about mental health?

I think it is important for anyone dealing with a mental health challenge or that of a family member to realize they are not alone in what they are experiencing. Mental Illness is very widespread. According to the National Alliance on Mental Illness (NAMI), one in five youth experience a mental disorder at some time and the figure is one in four for adults. Therefore it’s important to not be fearful of accepting a diagnosis of mental illness. It needs to be treated like any other medical illness and families and individuals should take advantage of the many resources that are available to help them cope with these conditions.

  1. Did your feel guilty for your sibling’s deteriorating mental health? If yes what did you think or do, if no please explain some to us.

In my memoir, there is a chapter that talks about siblings experiencing a “survivor syndrome” in which they wonder why their sibling was afflicted with a mental illness when they were not. Often times a sibling or parent may feel helpless when they are unable to “fix” the problem that their loved one is experiencing. My advice is that you must focus first on being healthy in your own life. Achieving your own happiness and stability is the best way to help your family member because you will be coming from a place of love as well as empathy.

  1. Can you tell if there was a difference in the way your sibling was treated before and after she got that diagnosis?

There is a definite stigma surrounding mental illness and this was even worse in the 1970s when my sister was first diagnosed. Stigma is a negative label that was placed on her and caused people to treat her differently. Stigma is hurtful and makes people feel ashamed of themselves or their family member. Feeling stigmatized and criticized can lead to individuals not seeking help for their mental health issues. To combat stigma, it’s important to realize and explain to others that mental illness is actually a medical illness like any other physical illness. Just like diabetes is a disease of the pancreas for example, mental illness affects the brain.

  1. If you wouldn’t mind, can you tell us any short or long term effect to your own mental health as a result of your sibling’s mental illness?

I became very depressed as an adolescent because that is a difficult time for most people when hormones and societal expectations create pressure on one’s sense of well-being. I did develop coping mechanisms like meditating, playing the piano and writing that helped me feel more whole and I continue to use these healthy outlets to this day.

Please stay tuned for Part 2 tomorrow, thank you

Interview with Pamela Spiro-Wagner Author and Mental Health Advocate P2


Hello World, without much ado we continue with P2 of our interview started yesterday. It is Mental Health Awareness and my goal is to advocate with fresh content every day of the week my own mental health permitting 🙂

2017 MHM Horizontal Banner Image

  1. If you wouldn’t mind, can you tell us about your relationship with your twin sister today a few years after the book has been published?

Twelve years after DIVDED MINDS first came out, I have no relationship with my sister except in memory. I love her as my sister but I do not like her.

  1. How have you been coping with your mental illness and yet still been able to function at times enough to write and publish?

I do not believe in the concept of “mental illness” any longer, only in mental suffering. And I do not believe it is anything but calling people names when you label them bipolar or schizophrenic or anything else. I cope when I do, well, and when I dont cope I dont. But like anyone else I have my up times and I do what I do as well as I can. The medications are the real problem, disabling me and most people far more than we can possibly know. All the supposed symptoms of schizophrenia I believe can also be induced and are mostly induced by the antipsychotic medications. So how do you even begin to separate out which is which???

3) The Writing

  1. Did any books/memoirs influence your writing (style, presentation, content)? Not that I recall… No one particular book influences me but I must have read thousands of books. I tell anyone who wants to write to read, read, read, everything you can get your hands on, that way you will not be overly influenced or copy someone else when it comes time to write your own book.

  2. Did you have a writing mentor? No I never did.

  1. Which was the most difficult chapter to write in your memoir and why? The last one was difficult to write because I did not know where I would end it and how…and how to assess the present with an eye for the future is hard. Also to wind up a book I had spend almost a decade writing felt devastating. How to sum up all that in one half a chapter was not easy.

  1. How did you deal with that?

  2. Which was your favourite poem and why? I still like the first one and the last one in the book WE MAD CLIMB SHAKY LADDERS… But I have no real favorites, My latest poem is usually my current favourite.

  3. Did you learn anything from writing your memoir and what was it?

    My notes please: Pammy didn’t have an answer for this question

  1. How long did it take you to write and get the memoir published? I wrote a memoir by myself that took ten years, then when my twin and I rewrote it to make DIVDED MINDS it took 3 years. Publication from start to finish took 2 years.

4) The Message

  1. Do you have any advice for other memoir writers?

Read memoir, first of all. if you do not like to read memoirs, it may be that you wont want to write memoir. But you probably can not write a decent memoir if you do not read it either.

  1. Do you have anything specific that you want to say to your readers?

I really mean it when I say I no longer believe in diagnoses for mental illnesses, whether it is schizophrenia or bipolar illness or any personality disorder etc. I do not even care if someday they manage to find an anatomic or genetic “cause” or abnormality that “proves” that there is such a thing. You know, there are all sorts of genetic variants that happen in people but we choose we how we see it; nothing makes normal or abnormal until we define it that way. We have made up a category of behaviors and description of an experience called schizophrenia and defined it as a bad thing for so long we have forgotten that it was and is not always thought of as bad everywhere, nor must it end badly, except when we treat it badly and with medications! If we treat schizophrenia with medications we know almost for certain it will become chronic by definition. Look at the research. No one knows what schizophrenia is nor who really needs or would even slightly benefit from medication. Most antipsychotic medication does nothing good in the end but make people sicker…I mean this. All for very dubious benefit and no chance of cure. Medications harm people directly and deeply even with just the side effects, which are legion, ranging from terrible disfiguring movement disorders to loss of sexual function and desire, loss of all pleasure in life, to loss of teeth due to dry mouth and so. Would you want to take a chance on any of these because doctors have nothing better to offer you? Or would you too want to eschew medical care and try something that at least truly does no harm?

  1. Any other writing projects, blogging etc?

My first poetry book WE MAD CLIMB SHAKY LADDERS, can still be bought from Cavankerrypress.org and my newest poetry book which includes my art LEARNING TO SEE IN THREE DIMENSIONS will be published in late May 2017. I try to keep my blog going at http://pamelaspirowagner.com

  1. Where can your memoir be found? DIVIDED MINDS can still be bought from Amazon.com but also used copies can be found and you can order it from any bookstore.

Thank you very much Pammy for answering our questions. We hope to stay informed of any updates with your projects. Kindly drop any questions you have for Pammy in the comments section and please do not hesitate to respectfully share any opinions on this interview too…

 And before I go to her bio, please do not hesitate to visit Pammy’s Blog for more on her writings and mental health advocacy

Pam’s Awesome Profile

An artist, writer and poet who has been diagnosed with schizophrenia for decades, Pamela Spiro Wagner attended Brown University from 1970-1975. She later went to medical school for one and a half years, before being hospitalized for the third time for psychiatric care. In 2010, she was also diagnosed with PTSD due to trauma resulting from deeply inappropriate and punitive use of seclusion and restraints in psychiatric hospitals.

  Wagner won First Place in the 2001/2 international BBC World Service Radio Poetry Competition, judged by Nobelist Wole Soyinke. In 2005, she co-authored, with her twin sister, a psychiatrist, DIVIDED MINDS: Twin Sisters and their Journey through Schizophrenia, which won the national NAMI Outstanding Literature Award and was a finalist for the Connecticut Book Award. Four years later,  Ms Wagner’s book of poems, WE MAD CLIMB SHAKY LADDERS was published. Several poems won  honorable mentions at New Millennium Writings and two were short-listed for the Bridport Prize in the UK. Her writing has appeared in the The New York TimesSunday Magazine, the Hartford Courant, and Tikkunamong other places.

 Doing art under the name, Pamwagg, Ms Wagner was part of a group show in Hartford, Connecticut in 2011, and had two solo shows, one at the Otis Library in Norwich, Connecticut in 2012 and then at the Wethersfield Library in Connecticut. Two paintings and two poems appeared in the Collective DreamArtsMagazine in 2014. In June 2017, her art will be on display at the Hooker-Dunham Gallery in  Brattleboro, Vermont.

Despite experiencing much adversity in her 64 years, including the decades-long diagnosis of schizophrenia, Wagner has also been lucky enough to have had four life-changing miracles along the way. The passion to write poetry, starting in 1984, and then, quite suddenly, to take up art in 2008 at the age of 55, were just two of those miracles.  She currently resides along with her cat, Beanie Baby, in Brattleboro, Vermont, in northern New England, where she disavows all labels, including those of any mental illness.

 Wagner’s books include: DIVIDED MINDS: Twin Sisters and their Journey through Schizophrenia (St Martin’s Press, 2005)

WE MAD CLIMB SHAKY LADDERS, poems (Cavankerry Press, 2009)

LEARNING TO SEE IN THREE DIMENSIONS, poems and art (Green Writers Press/SunDog Poetry 2017)

At the end of this month, I will round up with a summary post of advocacy and my take on the different interviews and opinions and all – please do not hesitate to contact me if you want to be featured on my blog during this month (Mental health related only)

This interview is the longest post I am doing on this blog I promise… don’t unsubscribe please

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Interview with Pamela Spiro-Wagner author and Mental Health Advocate P1


ask-the-author-answers-edition

Mental illness is more often than not associated with incompetence, fragility, frugality, vulnerability, undesirability: And yet we all have minds, which minds could go ill and if poorly managed the illness runs a life time.

Mental health awareness is a call to the imperativeness of taking care of your mind just like you will do your body. It is equally in my opinion a call to demand an equal treatment of those with a mental illness just like those with a physical illness. I know this is an ideal!

And so here we go: Hello World, during this month of May which is Mental Health Awareness month, I also intend to feature authors who have written on mental health, especially about their personal experiences. An author to me is anyone who has written and published their writings be it on or offline, via a blog, magazine, book or etc.

My first author to be interviewed in this series is a dear friend and one old enough to be my mum actually. I clicked with Pamela Spiro Wagner around January 2014 via my blog. We have been friends since then and she is the only person from the US I met through the blog and have had the honour of meeting in real life.

I have done a modest review of her epic memoir on my blog, as co-authored with her twin sister, and have also read some of her poetry. Pammy did my portrait even though hospitalised, and it took 3 visits spanned over 6 – 9 hours. It is among my most precious possessions. Without much ado, I’ll interview her for your reading pleasure and let her tell us more about herself and her life journey, especially that to become this published author she is today today mindful of her Schizophrenia diagnosis.

Divided Minds
Pammy and Lynnie: sweet twin

1) The Profile

  1. Let’s Start with a brief introduction of yourself – your background – and a tiny bit about your Childhood:

I am an identical twin, the older one, and the slightly bigger one at birth. Pigeon-holed as stoical even in childhood, I was given the message, often voiced aloud, that I did not need anything and that I did not have feelings. My twin was given the opposite message, by the way. Nevertheless, my childhood was relatively uneventful until 6th grade when 2 things happened. First President Kennedy was assassinated, which changed my life in terrible ways: this was when I started hearing voices telling me that I was evil and that I had killed the president. Then a couple of months later I had a very traumatic accident while skiing. I broke my leg and lay on the freezing ski slopes for hours waiting for rescue. When they finally brought me down my leg was first set without anaesthesia, which I endured, as I knew I had to, without making a sound. Then only hours later it was set a second time. This time, the surgeon clamped a mask of anaesthetizing ether gas on my face but failed to initiate the air intake valve, in effect suffocating me. I tried to resist, because he was killing me, and was restrained. The last thing I heard before I passed out was him saying, “Oh my god, I forgot to turn on the gas…” Then all went black. I told my parents nothing about either of these events. Why? Because of course I was stoical and did not need anything. And because I also knew in my heart that no one would believe me or take my struggles seriously. Nevertheless, these things – believing I had no right to feel, hearing voices and the trauma of my accident, deeply affected me all my life.

  1. About your Memoir, how did you come up with the title?

Our publishers chose the name, DIVIDED MINDS, which was a title they had used before with success. We had nothing to do with it. Alas, our original title, which I had chosen and always prefered was SOLO FOR TWO.

2) The Soul Journey

  1. I read that schizophrenia affects 1 out of 100 Americans; what’s your take on that?

Well according to most statistics this holds true, pretty much world-wide, the 1 in 100 persons being affected by schizophrenia. But you know, I doubt the validity of this number. And I doubt it because it is really a matter of opinion and nothing more. What is schizophrenia? Can anyone tell me? It is not anywhere in the brain that one can point to and despite the lies we have been told , it is NOT a chemical imbalance or some overproduction of dopamine. No one HAS schizophrenia, , not the way you have malaria or measles. It is a matter of what you say and do that in the opinion of another person makes them judge you as psychotic and out of touch with reality. I do not in fact believe that a person with schizophrenia in the USA would be accounted as schizophreinic or “crazy” everywhere, not in say, India or Africa … and so forth… Times change, definitions of madness change. That does not happen with malaria or measles, does it? Because judgments change and opinions change so notions of so-called mental illness change too, but usually facts do not.

  1. How did you get your diagnosis and how have you fared since that diagnosis?

I was first informed of my schizophrenia diagnosis when I was about 28 or thirty, but that was the first time I was told any diagnosis at all. I had been hospitalized several times before then and as early as 18 but literally no one had ever spoken to me about diagnosis. This doctor came right out and told me, “You have schizophrenia”then he said, “You dont have to end up on the back wards if you take your medication, properly, and for the rest of your life.” Then he started me on Mellaril (Thioridazine), which I took at higher and higher doses and along with doses of Thorazine (Chlorpromazine) as high as 1500mg for years. These did not keep me well, not by any means, despite the medications I was hit with more and more frequent stays in the hospital. Knowing what I know now, that antipsychotic medications do not work and only increase the tendency to relapse, I would not say that the decision to put me on Mellaril was the best thing he could have done for me. In fact, I would say that it is possible that the diagnosis itself was the worst thing that could have happened to me, or the best, depending on how you look at things. Life is life and depending on where you are in your journey, things can seem like a mistake or a miracle. To me, now, despite my take on diagnoses being wrong and just name calling, I nevertheless believe that what happened to me at that point in time was possibly the best thing that could have happened. I do know it was inevitable and that it happened for a reason. And that things that subsequently occurred because of it have all led me to where I am today…And where I am today I would not change for the world.

  1. Can you tell if there was a difference in the way you were treated and the way you perceive stigma before and after you got a diagnosis?

I was never once put into four-point restraints until I was diagnosed and then they tied me to a bed with my arms stretched above my head and shackled to the bed posts and my ankles shackled to the lower bed posts and kept like that for three full days. Later I learned from an aide that the doctor told him “schizophrenics” do not feel restraints the way normal people do…they do not suffer the way WE do.” I did not know what to say to that. This aide had heard me beg and beg him to let me free and knew how I had suffered, so how could he make such a statement? It confused me terribly. Later on, they put me in restraints to punish me and knew perfectly well that I suffered for it, and I know they enjoyed hurting me. I did not know a thing about schizophrenia before I was diagnosed and little really after it except that people would talk about “crazy people” and make fun of them, but NO one was ever so crazy to me that I did not understand them. I am a poet, and I know that people sometimes have to be understood the way you understand a poem, not taking every word literally but just taking their words in whole, accepting them with your whole heart and mind and body, and knowing that you “grok” them. No body has ever been so psychotic to me that I did not “get” what they meant fundamentally. They just speak in poetry not prose.

PS: If you have read this far… wow thank you… P2 tommorrow, as Trevor Noah says on the epic Daily Show: So Much News So Little Time

Book Review: Nothing like Normal; Surviving a Sibling’s Schizophrenia by MGW


nothing-like-normal

What is NORMAL Anway?

This was the question I was ‘foolishly’ or maybe ‘highly unrealistically’ expecting to be answered in this all too human and yet piercing memoir.

I began reading this memoir by carefully studying the cover picture. I concluded the two chubby innocent girls on the front cover were  Martha Graham-Waldon (MGW) to the left and her dearest sister Kathy Graham (KG) to the right. While MGW looked at the camera, KG looked more closely into the gaze of the pet birds they carried. I noticed her shirt lifted up a little and showed her tummy and yet that wasn’t a problem for the photographer. Yet, some of you may agree with me that in some cultures, keeping birds for pets, or not being properly tucked up be you kids, is simply not NORMAL.

This memoir did more to me than just help me see how another family just like mine had, faced and dealt with their member’s mental illness. MGW may not know to what extent her memoir will impact some, but it has definitely completely shattered this paradigm of ‘NORMAL’ to me.

Was NORMAL to be the absence of a diagnosis mindful of some signs that something was seemingly going on with KG? Was it now their new NORMAL that something was indeed going on with KG but then they had to ’embrace’ that as is, or ‘pretend’ to still fit in with ‘conventional community’? What about it being NORMAL to sympathize with their mum who suffered a stroke, and yet shy away and stigmatize the Grahams for having a ‘mad member’ in their family?

I am not going on any further, I read this memoir with so much attention to everything because I couldn’t really believe another family, far away in the USA, could go through such shattering trauma and deal with stigma too! I really thought such things happened only in Africa, to families like mine, well in a setting where people died more from ignorance than from Negligence. I don’t know what to make of the ‘medication tradition or pattern out there’. What is NORMAL now? Go after the symptoms? Go after the illness as diagnosed? Go after the person and beat the Shit out of them?

And in the process of it, how do you a close sibling deal and heal with it all? I applaud MGW’s vivid narration of their various exotic and adventurous family vacations and existence before ‘Life happened’. This in my firm opinion as an aggrieved sibling like herself, states the strong case that the ‘lunatic’ the world now sees, had a ‘NORMAL’ life before their mental illness. I am glad and actually obliged to MGW for writing this memoir mindful of her pain. I rate the book a 5/5 because of the ‘intensity of the different subjects covered’. If I could recommend only 3 books for your year end, this will definitely be one of them. If you read carefully and in between, you’ll definitely re-evaluate that word NORMAL.

About the Author

mgw

Martha Graham-Waldon is a writer, spiritual entrepreneur and armchair activist who resides in the Santa Cruz Mountains of California with her family and a menagerie of pets. Her articles have been published locally, internationally and online. She is a winner of the 2015 Women’s Memoirs contest for a vignette based on her memoir Nothing Like Normal: Surviving a Sibling’s Schizophrenia published by Black Opal Books. A member of the National Association of Memoir Writers, Martha also loves travel, the outdoors, Jazzercise and music.

Book Review: Surviving Schizophrenia: A Memoir By LOUISE GILLETT


Tell me if she looks like someone with a mental illness!!!
Tell me if she looks like someone with a mental illness!!!

I recall receiving this book by mail on the 19th of May 2014, and knew then that it was going to ‘shake me up’. I was still trying to understand what the hell was going on with my brother, and didn’t even know that I was going to understand so much more about my own self too. I had received an amazon coupon from school for a survey I took, and I used it for this and nothing ‘trendy’.

Louise’s story resumed in her words

I was diagnosed with schizophrenia when I was just nineteen. I am forty-three now, and I have recovered – and I use the term ‘recovery’ in its fullest sense. I have been free of medication and free of symptoms for twelve years. I have a husband, a home, and four young children – all things that I never thought would be possible at the age of twenty-five when I was informed of the diagnosis. At that time I accepted what I was told by the medical professionals; that the outlook was bleak in the extreme, that I would get worse as I became older and that I would have to be on medication for the rest of my life.

The Approach of the Medical Community as narrated

I was told that schizophrenia had first been diagnosed when I was nineteen, at the time of the first breakdown, but that it had not been thought appropriate to tell me then. Apparently the condition was confirmed by my second breakdown. Although I was confused at the lack of proof of the illness – there was (and remains) no physical test – I was told that there was no chance of recovery unless I accepted the diagnosis. Then, in a room filled with psychiatrists, psychologists, and mental health nurses, I was told that my life was effectively over. That there was no chance of recovery anyway. They spelled out that I would have to take medication for the rest of my life, and that I would get worse as I got older. The treatment I received in hospital was brutal. Forced medication should in my opinion be outlawed, or saved for the most extreme cases— those who have been violent or suicidal. I was neither. The emphasis in hospital was on containment, not understanding, and this amounted to an inhumane system, notwithstanding the good intentions of some members of staff.

For more on this recap by Louise, read her blog entry shared on Mad In America!!!

What I make of her story

Mental Illness is for real and is sure due to more than one cause. Anyone can be affected and pretending we are fine or stronger than the ‘normal’ person, doesn’t mean we are immune to a meltdown. What begs for reflection is her assertion: “The emphasis in hospital was on containment, not understanding” – aha, is this why stats keep staying so bleak, dark and even dreary? That more and more people get mentally ill and just get worse? And what is the emphasis in society? Who is to blame? Obviously you the sufferer right? You sure brough this embarassment on yourself: Simply put, the Stigma is can definitely keep you really mentally ill. Louise herself admits to smoking cannabis and that is the big cause according to a nurse. Forget about “I was an extremely shy and nervous child. I had a chaotic upbringing – my mother was an alcoholic and my father a gambler. My father was also a very volatile character, and extremely verbally abusive. I found school very difficult – academically I excelled, but socially I was completely at sea…”

Conclusion of this review and introducing it’s sequel

Sequel to Surviving Schizophrenia
Sequel to Surviving Schizophrenia

Most of the books I review, are memoirs and I can’t help giving each of them a 5. Five stars to both the Author and the content. The courage, the traumatic experience revisiting all of that, the patience, resilence and all. I just wish such a survival could happen to my dear friend Pammy too. Anyway, stories like these help me just so tremendously in my own healing journey and murdy waters with a sometime frail mental health. I know I am alone in my head and to many, I just not ‘one of them’. Louise Gillett did not just stop at sharing her story, she wrote a sequel to that called Surfacing. She took her daughters to the Mental Hospital and decided to tell them her story herself. I just got a copy of this other memoir of hers, and I’ll be doing another review here in due time.

Louise Gillett can be found via her blog

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