It’s been a long while I reviewed a book on my blog, but I have been reading many without being bitten by the ‘review me’ bug lol. Ashley’s book has gotten the ‘review me’ bug biting my fingers again. The book is simply one I had to read and make as many as notes as possible, the total being 65 highlighted notes. It is on the basis of these that I review this very important book mental health users and carers would do well to read.
The goal of the book is very clear as follows: The goal of this book is to demystify psychiatric medications and give people living with mental illness, as well as those who support us, the knowledge to make the best possible decisions when it comes to medication.
With the above in mind, I read the book as the project manager I am. I recall with some loathing truth be told, when I spent nearly 2 years taking medications including psychiatric ones, without ever trying to acquire any knowledge which could help me make the best possible decisions for myself. Had I known will always be the last in class because we hardly even think of them when starting a lesson.
Well, with psychiatric medications, you seriously don’t want take your health or those you care for, for granted. Mental illness (I live with Post Traumatic Stress Disorder), is for real and yet, you are not an invalid who can’t decide for themselves unless totally sedated or so psychotic enough to care any more. Ashley’s book is focused on the most common types of psychiatric medications: antidepressants, mood stabilizers, anti psychotics, anti anxiety medications, and stimulants, and yet she is adamant in asserting that: “The notion that medications produce some artificial form of wellness is simply absurd. What I gather from reading the book all through therefore is that, she did all the research including using her own self as a case study, to give her readers and the mental illness community at large, a good base of knowledgeable material to get and keep the conversation going. Recovery from a mental illness is possible if the right combination of medications and holistic treatment protocol are found. Trust me I know it may be hard, it is even daunting reading about the different side effects of the several of the medications.
I learned so much, and I honestly marvel at the depth of the research into technical and not cool products such as medications. I learned for example that it is better to take a cocktail of medications at reduced dosage, than only one at a high dose whose side effects may be devastating. I was also thrilled to learn about the relationship between inflammation and depression, and so much in the book kept getting me highlight wow. I could now understand some about the side effects I experienced, as well as those my brother who lived with bipolar disorder did.
The book is not boring to read especially because she uses words we can easily understand, and above all her own story as a case study. I appreciate her authenticity and vulnerability, and support her overall aim of fighting stigma surrounding mental illness and psychiatric medications. I follow her blog Mental Health at Home, and will recommend both her book and blog to everyone.
Thank you so much Ashley my heroine for writing such a long over due book. In my country, there is still such a pervasive culture of the doctor knows best, and the patient is just supposed to take them medication. Now, some patients and carers can start asking real questions while requesting for medication adjustments and re-adjustments.
Ashley is a former pharmacist and currently works as a mental health nurse. I admire that she writes from a professional perspective and from a personal stance, as she lives with mental illness.
I really recommend this reference guide to anyone who takes psychotropic medication, has a loved one who does, or who works in the mental health field (counselors, social workers, healthcare providers, etc. – I am a psychotherapist and could refer clients to this book now of course hahahah)
Hello World, I love doing interviews with authors who have written on mental health, especially about their personal experiences living with any mental challenges or supporting someone living with them. It is with such profound feelings that I interview co-authors Martin Baker and Fran Houston. Their book High Tide, Low Tide: The Caring Friend’s Guide to Bipolar Disorder is probably to my soul like none other I have read before in this genre. I will be doing a review of their book in the following days but I wanted the authors to enlighten me and hopefully you my readers and followers some more.
1) The Profile
Let’s start with a brief introduction of yourself, your background, and a tiny bit about your childhood:
I will go first (Martin). I was born in Liverpool in the north-west of England, where I lived until the age of eighteen. I graduated in Pharmacy from the University of Bradford in 1983 and spent the next three years doing postgraduate research at The Parkinson’s Disease Research Centre at King’s College London, before moving to Newcastle upon Tyne in 1987. I’ve lived here ever since. I had very little experience of mental illness until I met Fran online in May 2011. Despite us living three thousand miles apart, I am Fran’s main support and caregiver. Our transatlantic friendship has taught me a lot about living with illness, but more importantly about what it means to be a good friend.
Fran: Me next! I graduated from the University of Tennessee, Knoxville, in 1991, and worked as a successful electrical engineer until I was overtaken by illness. I was diagnosed with major depression in 1994 and with bipolar disorder in 2003. I also have chronic fatigue syndrome and fibromyalgia. I used to live on Peaks Island in Maine. Inspired by the island’s rich history, I interviewed and photographed long-time residents. The photos and interviews were exhibited locally and also published as For the Love of Peaks: Island Portraits and Stories, a Collection. This led to me appearing on Maine Public Broadcasting Network and National Public Radio to talk about my book and the challenges of living with illness. I was also a columnist with the Island Times. I was still living on Peaks Island when Marty and I met. I moved to Portland, Maine, in 1993. I love Portland and my many friends who love me dearly. I live with a beta fish named Jewells who often makes me laugh and gives me a reason for living.
2) The Soul Journey
Martin, why? I mean, I have heard of a sibling who tried to help and even gave up, but I have never read of a friend of someone living with bipolar disorder.
That is really why we wrote our book, because there is nothing else out there specifically for friends. Each chapter starts with a question. The final chapter asks exactly what you just asked: “Why do you do it?” There isn’t one single answer. Our friendship enriches my life as much as it enriches Fran’s. I have gained so much in the time we have been friends. I believe I am a better person because of it. Ultimately, Fran is my best friend, and that’s what best friends do—they look out for each other.
Fran, did you feel guilty at any point for your mental health and the impact it was having on your friendship? If yes what did you think or do, if no please explain for us.
This is a great question, Marie! I do wonder how Marty is doing when I’m not well but I never feel guilty about it with him. Not in my mania or in my depression. I have felt guilty about it with some others. Safety and guilt go together for me. I feel safe with Marty, that’s why I don’t feel guilty. With other people, I profusely apologized for myself and my behavior when I was manic, but I also expected them to be responsible for their behavior.
Martin, can you tell us how your wife and son appreciate your having a friend like Fran, who could need you at any hour?
My family has been incredibly supportive, both of my friendship with Fran and the book we have brought out together. My wife contributed a piece to the book, and it is through my son that Fran and I found a publisher! More generally, they are very supportive of the help I am able to give to Fran and others, and the other work I do these days in the mental health arena, such as online work and volunteering with the UK anti-stigma charity Time to Change.
Do you two think the distance is helping your friendship stay alive or killing it slowly?
In some ways living 3,000 miles apart limits our friendship. Fran can’t invite me round for a meal, say, or meet me in town for a coffee. I can’t help her with chores, fetch groceries, or give her a ride to appointments like I would if we lived in the same city. On the other hand, we get to share a great deal just as easily as if we lived close together. Social media and instant messaging mean we are never really out of touch. We meet on webcam almost every day. We talk (a lot!), watch movies and read books together. In some ways it enhances our relationship. As long as there’s an internet signal we can connect, no matter what time of day it is, where we might be (at home, out about town, on vacation etc.) or what we might be doing.
Do you have any candid advice to friends of people with a bipolar disorder diagnosis? I will appreciate advice from each of you.
Martin: The key advice I’d offer is to keep the channels of communication open. For us that means daily chat conversations and Skype calls. That might be too much for some people, but however you “do the talking thing,” be someone your friend knows will be there for them no matter what happens. (And yes, that might include taking a phone call or responding to a message in the middle of the night.) Be someone your friend can trust not to turn away when things get rough. How do you do that? We sum it up as “Be who you are. Do what you can. Embrace the journey.” Don’t try and be someone you are not. You don’t have to do everything. Find your role in your friend’s support team and make it yours. There will be some bad times for sure, but also lots of good times. Share it all.
Fran: Three things come to mind. Commit yourself to your own self-care, keep healthy boundaries, and have understanding and empathy. Self-care means remembering to take care of your needs as well as your friend’s. Like taking some time off if you need it, or having someone to talk to or support you when things are hard. Keeping healthy boundaries is linked with self-care. What happens sometimes is friends get all enmeshed with the bipolar person. Someone manic can be interesting and exciting, but it can be toxic if you are not careful. Healthy boundaries means being aware of what is going on and not doing things you don’t want to do just to keep them happy. It’s ok to say no. Don’t go down the drain with your bipolar friend! Understanding and empathy means listening to your friend, to what is happening with them, and not trying to fix things or do everything….
Stop by on Wednesday for Part 2 of this exciting and yet so soulful interview
Hello world, and Friday is here! I wrap up this roller coaster week with the potrait of my mental health advocate model and hero.
The guy you see above, he is the co-author of the book that has rocked my mind for the past two weeks. Uh huh this one here:
I have been through low tides and high tides and low tides again with this book and currently I am on safe tides: Not so low, not so high!!! Thank you Marty (for much), thank you Fran.
Now, here is personally why Martin Baker is my model:
He has shown me what it means to be a friend – best friend to someone living with a mental illness: A friend in need is a friend indeed. In a recent guest post of theirs with Time to Change, Fran had this to say:
If you get to read their book, you will understand and appreciate what she means and hmm, Martin has braved it all and is not only around but such a champion now. He has taken courses and done oh my so so much for his friend – I wonder where he finds the time and emotional stamina;
Marty was there for me on the night I was in a police cell in a non controling nor judgmental way and that is what I most needed: Here below is an excerpt of our conversation that night:
Marty: Hello Marie (sorry the smiley can’t come along) How are things with you today? (I gave an honest response – which was not so good bla…)
Marty: Sorry to hear it’s not going so good for you
I went on to explain the ordeal to Marty and when he said he believed in me, I asked why because I didn’t want one of those generic I wish you the best statements without facts…
Marty: In the short time we have known one another the impression I have formed is of a woman with courage to fight for what she believes in and wants.
This sealed it for me, it was not only true I was a woman of courage and all, but it was touching in the short time we had know each other he had been able to form that impression. For the above reasons and more including his love for poetry, his appreciation of my poems and posts, our shared interest in photography, I declare Martin Baker my model and Hero I appreciate all he does for Fran and am grateful for the friendship we are building too.
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:
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.
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
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.
Which was the most difficult chapter to write in your memoir and why?
Chapter 37, The Last Callwas 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.
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
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.
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.
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.
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.
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?
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
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.
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
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.
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.
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.
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.
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 🙂
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.
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
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.
Did you have a writing mentor? No I never did.
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.
How did you deal with that?
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.
Did you learn anything from writing your memoir and what was it?
My notes please: Pammy didn’t have an answer for this question
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
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.
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?
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
Where can your memoir be found? DIVIDED MINDS can still be bought fromAmazon.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 Writingsand two were short-listed for the Bridport Prize in the UK. Her writing has appeared in the TheNew York TimesSunday Magazine,theHartford 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 DreamArtsMagazinein 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
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.
1) The Profile
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.
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
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.
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.
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
Mental illness is more often than not associated with incompetence, fragility, frugality, vulnerability, undesirability: I don’t make that association however, and memoirs like Dyane’s make a pale of those who think a mentally ill is a ‘no good’!
May is mental health awareness month and I have the honour of furthering my mental health awareness month with a book review. Dyane’s epic memoir of one of the ‘not so known’ mental illnesses is worth its weight in gold especially at this time when even Royalty is stepping up advocacy on mental health awareness.
Some stuffs I get from Dyane’s epic memoir:
We don’t care about those ‘lunatics’ because we are not them and no we can’t become them. Sometimes, and as in Dyane’s case, we so wish our sick ones well, but we don’t try to learn and understand what is going on. We don’t even know what or how to ask them any questions. It gets to a point where we look forward to either having them removed from our ‘normal’ existence, or forward to leaving them and going far away – be it for studies, work or just a fresh start. One thing I learnt from this memoir is that close or far, we can be so impacted by mental illness of a close one. Paradoxically, Dyane starts having troubling ‘mental issues’ after she’s left home and is on her own, although she had felt for so long before then that something ‘weird’ was going on.
A lot of good things in my opinion happen to Dyane in between the time she leaves college and when her second child is born – the birth which sparks her postpartum bipolar disorder. She takes on different challenging jobs and meets a vast array of people most especially her ever supporting husband.
I am so interested to know what keeps her husband staying with her mindful of her seemingly ‘unappeasable’ mental illness and mental health altogether. Maybe she’ll write a second memoir about this. He from much indication in her memoir, is a care giver par excellence both to her and to the kids, juggling these all with his ever demanding job. People like her husband are to be celebrated because many with a mental illness are sooner or later abandoned even by their families and left at their own guise.
It is once more interesting to read in this memoir about the treatment mentally ill patients seem to attract. There are basically two types of treatment. You are either treated as a human being with an illness like every other (very rare), or most often, you treated with such stigma and near shunning altogether. Dyane even while very sick, can tell and appreciate when she is treated with empathy, and even sympathy. She also narrates the few times she’s treated like ‘one of them lunatics’. When you sometimes leave the hospital worse off than you get there; when you develop post hospitalizations trauma disorders which is another mental illness on its own.
All is not lost, after trying several different medications, nearly becoming a guinea pig of sorts; after trying to go off cold turkey not once but twice; after silently challenging one of her doctor’s sarcasm about alternative treatments; Dyane has come to find a balance between all of them. Even ECT wasn’t left out, she desperately needed a new brain – she’s courageously brought forth one and trying her best to nurture same.
Her narration is not only so funny at some points you wonder where she found some words and different styles she uses (oh yes she has a B.A. in English and American Literature); her memoir also has helpful links and annexes. Her extensive biography below beats the ‘stigmatized notion of mentally ill as incompetent and losers’! I mean what dedication starting all over and over again, entering a contest hundreds of times, taking on difficult exams and the list goes on.
As some other advanced reviewers have already said, her memoir is a big bonus to the mental health community, – a community I dare advocate should concern all of ‘us’ because all the ‘thems’ we see today were once ‘us’ before. There is really no point for stigma which to me shows insecurity and fear of the unknown.
I without any reservation, recommend this memoir to all and sundry. I give it a 5/5 and can’t wait to receive my autographed copy come October. I need to have that physical copy on my shelf period!!!
About Dyane Leshin-Harwood
Dyane Harwood is the author of the memoir “Birth of a New Brain – Healing from Postpartum Bipolar Disorder” (Post Hill Press, October 10, 2017) with a foreword by Dr. Carol Henshaw. She holds a B.A. in English and American Literature from the University of California at Santa Cruz. A freelance writer for over two decades, she has interviewed bestselling authors including Dr. Kay Redfield Jamison, Anthony Bourdain, and SARK.
Dyane had the once-in-a-lifetime experience of attending a writing weekend conference taught by her favorite author, the late Madeleine L’Engle, author of “A Wrinkle in Time.” Dyane has written for The Huffington Post, The Mighty, Postpartum Support International, Postpartum Progress, Anchor Magazine, Fit Magazine, The International Society for Bipolar Disorders, The International Bipolar Foundation, and The Stigma Fighters Anthology. After founding a chapter of the Depression and Bipolar Support Alliance (DBSA), she facilitated free support groups for mothers with mood disorders for nine years.
Dyane lives in Ben Lomond, California with her husband Craig, their daughters Avonlea and Marilla and their collie Lucy who serves as a writing muse and sits on Dyane foot when she writes.
I lost my skipping rope four months ago and with that my skipping groove. Trying to start all over…ain’t ever easy but am not discouraged. I used to skip 500 at a go, today I could only do 200 average at a go. That’s still a big motivation even if I still feel less flexible than before. Yes you can, don’t give up…
Grief strikes: It is hard not to feel
My darling Donna lost her beloved father yesterday and I feel so sad I can’t be with her in this challenging moment of need
Secondly, a few hours ago I saw a young man on the streets whom I recognized as one of the altar boys at my wedding in 2006. He was so friendly and I met him a few times again thereafter in church and about. Today, he had a bag full of junk and was talking to himself – what could I do?
I travel to my village tomorrow – off network for four days
The medical mission our foundation is organizing kicks off on Friday. Our team leaves the city for the village 8 hours away on not so cool roads tomorrow morning. There is no network there and I will be hyper busy and yet super anxious about stuffs etc – I have tried since monday to prepare myself emotionally and mentally and I just keep my fingers crossed.
I will be taking my skipping rope with me and will try find time to go hike in the woods
Thank you for reading ( more of my short sport clips on my modest youtube chanel) e.g: https://www.youtube.com/watch?v=hEJUclj_ZNM