Category Archives: schizophrenia

Henry’s Demons, review

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Henry's Demons: Living with Schizophrenia, A Father and Son's StoryHenry’s Demons: Living with Schizophrenia, A Father and Son’s Story by Patrick Cockburn

My rating: 4 of 5 stars

Henry’s Demons is an insightful look into both the family experience when schizophrenia strikes a loved one, and into the U.K. System of care.  As a parent in the United states, I couldn’t help but compare Henry’s experience (e.g. months at a time in the hospital) to my son Ben’s story here in the United States, where it seems that every day the hospital must justify the stay to the insurance companies.  I must admit, I was a bit jealous at first; yet, I don’t see that Henry benefited much from his extended stays, so maybe not. Hmmm.

Cockburn writes movingly and intelligently about his father’s-eye view of Henry’s illness and the actions it triggers; as a journalist, though, he focuses on many of the issues and facts more than his emotions about Henry’s illness.  Through Henry’s chapters – a unique feature of this book – we get a view of what incidents were like from the point of view of someone who is suffering from schizophrenia, and actually hearing the “voices” that encourage him.

We don’t get to know Henry much before his illness, though there are glimpses.

Henry spends a lot of time hospitalized; he also spends a great deal of time escaping. How is this so easy to accomplish? Yet, I have no doubt that every word is true.

This is a great addition to anyone’s understanding of the family experience when mental illness strikes. Indeed, it can happen in any family.

View all my reviews

Ticket to Work: The Road to Self-Sufficiency, fingers crossed.

Ben Behind His Voices Events and Updates, mental illness information, schizophrenia, stigma, , ,

Ben has a chance at a job. A real job. Minimum wage, yes, but for him to make it to a second interview, and then to a possible job offer for the summer…well, the tears I feel remind me that I hadn’t really even dared to dream this for him.  Ben hasn’t had a job in eight years, since he was twenty years old.

He is so excited – it’s the validation, the possibility he may be able to earn money, be useful, have something to say about his life other than “I live with roommates and do volunteer work” and – lately – “I go to school part-time”, a miracle in itself .  He is also facing, suddenly, questions like:

  • What will come up in a background check? Will the employer know about my hospitalizations and diagnosis?
  • Will I lose my SSDI? SSI? State help? Medicare? Medicaid?
  • What is a “Ticket to Work”, and do I have one?
  • Will I lose respect and the chance at this job if I reveal my diagnosis?

Practically, I was able to find answers by calling Ticket to Work, and by visiting the Social Security Work Website
The emotional questions are the ones that are more difficult to face
– but Ben is asking those questions, and setting his limits as to how much he wants to, or has to, reveal.  His dignity is so at stake; still, I’m amazed and proud at what he’s doing: calling his job coach himself, contacting other so-called “experts”, formulating exact answers to the questions that may come up.  He has more than risen to this occasion.  Again, the happy tears.

And the fears, which I am trying to ignore.

Will this be too much for Ben? Will he be able to get to work at 8:30 AM each day? Will the no-smoking rule cause problems for him, even though he says it is not an issue?  Will the stress cause a relapse? Shouldn’t he take a lesser, part-time position?

But these are Ben’s decisions, not mine,  All I can do is help with the research and share the information with him and his providers. Then let go. And have faith: faith that he can handle 32 hours of work each week, and still keep up with 6 college credits. And not break under the stress.

Nothing would make me – and Ben – happier.

Author Reflections: “Ben Behind His Voices” launch date set

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It’s real! The official publication date for Ben Behind His Voices is September 16, 2011.  When you search on Amazon or Barnes & Noble, there is a listing.  As a first-time author, I have to admit that this is even more exciting than my first kiss. Yep. At least I think so – the first kiss was so unexpected (another story for another time), while this listing is the culmination of  years of writing, rewriting, query letters, bouncing back, trying again, and finding and reconfirming my own faith in the book’s value to others.

Yet this is nothing – nothing – compared to the challenges Ben himself has faced in the same period of time.
In a way, the timing of Ben‘s publication couldn’t be better, for when I first sat down to write our story Ben was just a few months into recovery.  Now, he has logged over five years (knock wood) hospital-free, and we’ve been able to see how recovery can progress when psychosis is avoided for longer periods of time.  So, because of this long journey to publication, I hope that our memoir will offer even more information and hope to its readers, as I’ve updated Ben’s progress frequently as the drafts piled up.

Here is the description from the listing (image and “search inside” features will come later, but you can pre-order) – it contains my hopes for the book’s effect: to increase understanding and respect for those with mental illness, and for their families; and thereby reduce stigma.

“Ben Behind His Voices is the gripping story of one family’s challenging experience when their firstborn is gradually struck down by schizophrenia – and how they learned to love and support him throughout his eventual steps to recovery. This page-turning narrative will inspire and educate any family going through hard times with the mental illness of a loved one. It also provides valuable insight for others who want to understand how families are affected when mental illness strikes.”

For any families in the same boat: there are guidelines of info and resources at the end of most chapters. I hope you will fall in love with my son Ben before you get to the part where his illness takes hold. He is there, behind his voices, all throughout the book – and he still is. As is your loved one. Hard to see sometimes, I know. but love helps. So much.

Marijuana and Schizophrenia: another view

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The latest fad in schizophrenia theory: marijuana caused it. Yet another finger to point, to create the illusion that it is somehow the “fault” of the person who has the illness. Here’s an intersting article that tells another side of the story: Marijuana and Schizophrenia: Cause or Therapy?

De. Phil Leveque begins with these words: “This story is engendered by an article in TIME Magazine Feb. 21, 2011 entitled Pot and Schizophrenia: A Dangerous Mix. To put it mildly, TIME is full of crap and so are the authors of the medical article from the University of New South Wales in Australia.
It states they reviewed 83 studies and found that POT smokers who developed psychotic disorders did so 2.7 years before non-smokers. The medical article is very suspect and I will try to explain why.”

I wrote to Dr.Leveque:
“Thank you! Finally, another view to the newly-popular ‘marijuana causes schizophrenia’ theory. As the mother of a son with schizophrenia, educator with NAMI, and the author of a memoir that we hope will spread understanding and hope re mental illness, I applaud you for your article in the Salem-News.

It has been my understanding that my son began to smoke pot as a reaction to his illness, not the other way around. Schizophrenia is nobody’s fault. Many who don’t know better will grab at any explanation so that they feel we have some control over who “gets it” and who is spared. The only thing I know for sure is that early detection and treatment can help avoid psychosis, and therefore provide a better prognosis for recovery. But my son did not ’cause’ his own illness, through marijuana use or anything else. Thank you for refuting the Australia study.

If you need any comments from a Mom/author who has been through it – and whose son is currently living a full (and clean/sober) life, despite his illness, please feel free to contact me.

Thanks again,
Randye

Randye Kaye
author: Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope(Rowman & Littlefield, summer 2011)

Can Schizophrenia be Prevented?

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If you want the facts and latest news about schizophrenia and the people affected by it (those who have been diagnosed and the people who love them), I highly recommend two amazing websites: http://www.nami.org/, and www.schizophrenia.com.

NAMI has taught me that there are nine stages of emotional response for the families of those with mental illness. Whether you are in an earlier stage like crisis/chaos, a middle stage such as anger/grief or a later stage such as understanding, information will – immediately or eventually – help to empower you.

Click on the address or title for the links to each website – NAMI’s home page, and a new article found on schizophrenia.com about prevention of schizophrenia.

Preventing Schizophrenia
One of the messages in my book Ben Behind His Voices:One Family’s Journey from the Chaos of Schizophrenia to Hope is that early detection is vital. Articles like this help us know what to look for, much as we may not want to see it at the time. Much research suggests that prevention of psychotic breaks can avoid the destruction of brain matter. I encourage you to learn all you can

Another family’s schizophrenia story

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Before we found our publisher for Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope, my agent and I received several quite lovely rejection letters, stating how much they were moved by the story and by the writing – but that they feared it “just wouldn’t sell” because of the subject matter.

Now, coming out very soon, another family’s story, called Henry’s Demons. This is by Patrick Cockburn, his wife, and his son – a UK family, each telling their part of the experience.
Reviewed by the NYTimes, moving up high on Amazon. I’ve just ordered it, and hope to connect with the family someday. Yes, this subject does sell – and it needs to be heard.

Is this “competition” for my book? No! It is a partnership. The more families that come forward to tell their story, the more we can all work together to increase understanding, reduce stigma, and increase respect. Bravo!

Creative writing, then and now

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Ben is taking two classes this semester: Directing 101 in the Theatre Department, and Creative Writing. The directing class requires a lot of him, things that his illness have compromised: insight into one’s own emotions and the feelings of others, social awareness, stillness, complete connection. Do I tell the professor that Ben has this illness, so she is aware she needs to grade him in accordance with his disability?

And…creative writing. Ben’s writing used to look like this:

– and that was before it began to look even more scattered and illegible. Now he is writing haikus, and keeping up with assignments. 200 pages of reading assigned between classes, I fear, may cause him too much stress; yet, it is his journey to complete. He is getting assignments in on time, so far – even, in one case, a day early. That requires a connection of cause and effect I haven’t seen in years. Still, I want to make sure he gets a fair shake…do I write to the professor?

Meanwhile in this letter, from a Mom in England who has lost her son to schizophrenia, the story has unfortunately ended quite differently.
She writes this, in The Guardian:
“So the main reason I wanted to write was to say sorry. I did the best I could with you and for you at the time, but it wasn’t good enough and I ultimately failed to protect you and keep you safe. I wish I could go back in time and do things differently.”

Maybe with support, and without the stigma, her son’s life could have been saved. Here is the link to the letter, which breaks my heart:

http://www.guardian.co.uk/lifeandstyle/2011/feb/05/letter-to-my-late-son-who-had-schizophrenia

Ben Behind His Voices this summer!

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The cover design has been chosen at last, and it makes the upcoming publication finally seem real. The exact date of publication is still tbd, but it should be in bookstores in August 2011, and available for pre-order at the end of June or by July. There are more updates available by either joining the facebook group “Ben Behind His Voices, the book”, or by joining my e-mail list using the link on the home page at https://randyekaye.com/ – just specify the “Ben” list when you get to your choices.

Here are some advance comments, though!
Poignant, stark, and the energy of the scenes are set up really well. This work has screenplay written all over it. The dialogue is wonderful and the pace of the story moves briskly. – Nancy DeRosa, author of A Penny’s Worth, and There’s No Place Like Home

What I find most compelling about Ben Behind His Voices is the author’s honesty as a mother about her true feelings. She connects with her readers because she allows herself to be human and vulnerable and share both her struggles and triumphs.
– Amy J. Barry is author of A Child’s Grief Journey and writes an award-winning parenting column, A Parent’s Eye View.

Should be required reading for all psychology professionals and students, as well as anyone who loves or cares for someone suffering with schizophrenia. Incredibly well-written, profoundly honest and, perhaps, most importantly, Randye Kaye offers help and hope to thousands of families needing to hear her story. I sat holding my breath as I turned each page. The author is not only a survivor and an incredibly loving mother, she is – by any standards – a gifted writer.
Linda Appleman Shapiro, psychotherapist/oral historian/author of Four Rooms Upstairs: A Psychotherapist’s Journey Into and Beyond Her Mother’s Mental Illness.

Emergency Room again – but different this time

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9 PM. The cell phone rings on my way home from teaching a class.

“Randye? It’s Desmond from Harrison House.”

Ben’s group home. My heart skips a beat, a conditioned response. What has Ben done? Did he stop taking meds? But he’s been doing so well!

Desmond senses my approaching panic. “Don’t worry, it’s nothing major. It’s just that we’re taking Ben to the Emergency Room. He cut his hand cleaning up the kitchen and he may need stiches.”

It’s ridiculous but true: I am relieved that Ben needs stitches. Oh, is that all? I think.
I rush to the hospital to meet Ben and Desmond, and can see that this is manageable. The cut is deep but easily fixed with a few stitches. Ben has cut his hand between the thumb and forefinger while washing a chipped ceramic cup. Ben does not seem to be in a panic, either; he’s just worried about the pain, same as when he was seven years old at vaccination time. This I can deal with.

Desmond goes back to Harrison House and I stay with Ben. At the admissions desk, the nurse asks, “What medications are you currently taking?”

“Prilosec,” says Ben.

That’s an over-the-counter fix for acid reflux. Easy. OK. Will he mention his real meds?, I wonder.

And he does. He says the brand names of the two meds that, combined, have kept him out of the hospital and in the world of real life for the past 5 years.

The nurse doesn’t recognize the names of the meds, as they are the liquid and dissolvable forms of the more recognizable brands. “What are they for?” she asks.

I have no idea what Ben will say. But he answers. “They’re for schizophrenia,” he says.

A victory? I don’t know. But I’ll take it. This doesn’t mean he accepts his illness; it just means he knows what the meds are for, in general. I don’t press the issue. This is fine, just fine.

We’re called into the medical area and Ben spots the treatment table where he is to wait.

“Wow,” he says. “This is way better than the last time I was here. They used a straight jacket that time.”

I cannot believe he just said that. He almost never talks about the times he was admitted to the hospital for psychiatric reasons. “Well, not exactly a straight jacket,” I reply.

“Well, they used restraints or something. Anyway, this is way better,” he says, and smiles.

“Yes, it certainly is.” My thoughts exactly, but I hadn’t dared mention it. The fact that Ben did – well, it’s another small miracle. I allow myself a prayer that he may never have to be admitted as a psych patient again. I know I can’t control that, but I can hope. And be glad that he’s glad.

A few nerves, one shot of novacaine and a few stitches later, we are out of there. Just like any other, normal, mother and son.

Yes, this is much better.

Gentle Reality Check – and LEAP with Xavier Amador, Ph.D.

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Sometimes Ben’s behavior is so wonderfully ordinary that I almost let myself imagine that none of this ever happened: the hospitalizations, the calls to the police, the fear and chaos.  I can forget, for a while, that Ben has a serious mental illness.

It’s Yom Kippur. I can see Ben in the congregation at services this year, from my place in the choir. He is clean-shaven, dressed up, sitting next to his sister and her fiancé. My growing family. I feel so joyful to have them all here, together.  They’re all participating, even listening to the Rabbi’s sermon on apologies. Still, I keep checking on them – well, on Ben – every few minutes. Sometimes I catch his eye, and he smiles and waves to me.  Then there are the moments he doesn’t know I’m looking: I catch him grimacing, mumbling a bit under his breath.  The self-talk.  He usually can keep it under control now, but it comes out in overwhelming situations.
Yep. He still has schizophrenia. I know it, of course, but sometimes I like to imagine it was all a nightmare that is now over.
In a way, though, some of that nightmare is over.  Thanks to some excellent life teachers, I have changed how I react to this situation, and that changes the situation itself. I have given up on being “right”.
Part of that change in my attitude was greatly influenced by the book I am Not Sick, I Don’t Need Help,, by Xavier Amador, Ph.D. If you’re still stuck in the frustration of trying to convince your relative that he/she has a mental illness, I highly recommend you read it. It may save your relationship.
Two weeks after Yom Kippur, I get to spend two days with Dr. Amador and hear first-hand about his experience when his brother developed schizophrenia – and how, years later, they were able to be brothers again. The pain is all too familiar; thanks to info like this, though, my family has been able to have Ben back in our lives. Like Dr. Amador with his brother, I began to regain (and still retain) my relationship with my son when I let go of being right, or being somehow able to say the magic words that would “convince” Ben that he had a mental illness.
These two day are about paying it forward; we are learning how to apply the LEAP (Listen, Empathize, Agree, Partner) process in helping someone with mental illness, and about training others to apply it.  We’re a hand-picked group: two from NAMI Family-to-Family, some providers, and mainly police officers.  I’ve never had the chance to hear crisis stories from the law enforcement perspective, and am so in awe of these detectives, hostage negotiators, trainers, and crisis intervention specialists.
In the crisis years with Ben, I had to call the police several times.  Once, Ben called them to report that I had been threatening violence toward him (a long story, but unfortunately not an unusual one). Fun times indeed. Lucky for me, the police in my town had been trained in handling a crisis with humanity, respect and perspective.  It could have been so much worse. To them, and to the cops who took this training with me, I say a huge thank you.  Families in crisis are so raw, vulnerable, confused, sad and often angry. Your patience and empathy helped us through.
With more understanding and action like this, we can work to reduce the stigma and chaos of mental illness.
PS – some exciting news coming soon about Ben Behind His Voices: One Family’s Journey through Schizophrenia to Hope. Stay tuned!
And you can write to me at randye@randyekaye.com if you want to receive the news via e-mail.