In the Dark about Mental Illness? Great Resource

We have, at last, the official publication date for Ben Behind His Voices: September 15, 2011. It's on Amazon right now for a peek, and my thanks to those of you who've told me you're eagerly awaiting the chance to read more. My hope is that the book will help others by sharing our story, both the trials we experienced as and the hope we eventually found. Meanwhile, I hope this blog can continue the work of sharing useful information and resources while providing updates. So - in that spirit:

Just learned of a great entry on Psychology Degree.com -25 Q&A Sites on Mental Illness

It's chock full of amazing links. Thanks to Patricia Duggan for sharing it with me.

Also, healthyplace.com (where I also blog about Mental Illness in the Family) is a terrific resource for many health issues, with a fine section on mental health.

There's plenty of guessing where mental illness is concerned, I know. All I have to do is look at Ben's current relapse to know that even some providers, unfortunately, do their share of guessing.  In some cases, it's because research results are so contradictory, or budget cuts and legal issues create confusion.  In other case, as you know from this blog, much info is available just by taking the time to listen to the family and/or prior caseworkers.

Joyce Burland Ph D

When Dr. Joyce Burland created NAMI's Family-to-Family course, she knew that families craved good information, and that by becoming educated they could be better partners in their loved ones' recovery, and  more able to take care of themselves as well.

One of the elements of recovery for people like my son Ben is a family educated in the facts of mental illness.  Believe me, it can make all the difference. Not a cure (sorry, I wish I had the magic), but by staying informed we can all partner better for the best possible income.  So I'm happy to share the above resources with you.  I hope it helps, even a little.

Thanks to all of you for your comments, insights and support re Ben's current relapse.  Now that we''ve absorbed the change a bit, and done everything constructive we can possible to with our anger at the mistakes that could have been avoided, we are taking this new chapter one step at a time.  Ben is safe for now, his hospital team is far superior to the case management team who screwed up (sorry but it's true), and we are back to channeling hope and faith as much as possible while staying alert to anything, any action, that might help bring Ben back to the life he's worked so hard to recreate. Right now it's all about the meds, and his "right" to refuse the only one that really works.  Grrr. Will keep you posted. Thanks again.

Family Matters in Mental Illness and Recovery: Sharing

Since this is a new home for the blog I'd previously shared as "No Casseroles for Schizophrenia" on blogspot, Technorati has asked for my verification, so here it is: 295NHGGCAUTX

Meanwhile, thanks again to you: for following, sharing, and caring.  I hope to continue the dialogue for all of us - one in four families - affected by a major mental illness in one of our own: child, spouse, sibling or parent.

Other excellent forums exist as well, such as:

• healthyplace.com (where I also blog about Mental Illness in the Family)

• NAMI

• NAMI Family-to-Family (its effectiveness documented here in this Psychiatric Services article)

• NAMI groups on twitter, facebook, linkedin

• BringChange2Mind

and many more.

I'll try to keep you posted right here, and hope you'll do the same. As always, please feel free to follow, subscribe, comment, tweet- and tell others that we're here, and they are not alone.

If you are going to the NAMI National Conference, stop by and see me on Friday July 8  (Poster Presentation around noon) to say hi - and  for a free bookmark with book info and alsohelpful tips on family matters!  

Schizophrenia Recreated in a Computer

How does schizophrenia develop in the brain?  What happens? Dr. Ralph Hoffman creates "hyperlearning" in computers, which then recalled stories as a schizophrenic patient might.

Hear the interview here.

"Reporting in the journal Biological Psychiatry, researchers write of modeling schizophrenia in a computerized simulation of the brain's connections, called a "neural network." Yale psychiatrist Dr. Ralph Hoffman, an author on the paper, discusses what his team has learned from the model."

Why? To learn.  If we'd never gone into space we'd never have the global networks we enjoy now.  To my mind - and for the 1 in every 100 people who are diagnosed with schizophrenia - the more we learn, the better.

Research is vital to understanding - and to eventually finding a cure.  We'll get every dollar spent on research back tenfold if those with mental illness can truly recover.

What's it Like?: 20 Greatest Memoirs in Mental Illness

Another great resource, especially if you're looking to contribute your experience professionally, and want to get your Masters' Degree online : Masters in Health Care . This latest blog post also lists the 20 Greatest Memoirs in Mental Illness. Whether you have been diagnosed yourself, are providing services professionally, or as a family member (lots of work, no salary!), getting the insiders' view is invaluable.If this were my list, I'd add the following memoirs:Henry's DemonsThe Day the Voices Stopped His Bright LightCrazyBeautiful BoySomeday I hope Ben Behind His Voices will make this list. When it does, I'll know that its message of hope and its dose of reality will have reached more readers - and that the message will spread.  Guess it's a bit much to expect to be on here, since the publication date is still a few months away! Want a peek? Amazon has it for you.

Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness

Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness by Linda  Appleman Shapiro

My rating: 4 of 5 stars

Linda Appleman Shapiro writes honestly and beautifully about her experience as the daughter of a mother with mental illness, coping with  the confusion of the mood swings, her struggle to understand, and the stress and shame of keeping it all a secret. We meet her family members - Linda, her mother and father, and her brother - and soon the dynamic in her Brooklyn home becomes clear - as does the love that prevails.

In addition, we get a nostalgic peek at life in Brighton Beach, Brooklyn, back in the 40's and 50's, when "hanging out at the beach" was a huge part of a young teenager's life. Shapiro has the hindsight, now, of a trained and experienced psychotherapist.  This, combined with her clearly-depicted childhood memories of life in those "Four Rooms" makes for an engaging, enlightening and ultimately therapeutic read.

View all my reviews

His Bright Light: review of Danielle Steel's book

His Bright Light: The Story of Nick Traina by Danielle Steel

My rating: 4 of 5 stars

This is my favorite Danielle Steel book. Yes, it is partly because I share her experience of parenting a child with mental illness (though Nick had childhood-onset bipolar disorder and my Ben has schizophrenia which began to appear gradually in his mid-teens) - but, this common thread aside, I couldn't help but applaud Steel's candor and courage in sharing her experiences with the world.

Her Nick is vibrant, charming, brilliant - and troubled. Steel struggles to understand, especially in the light of all the "experts" who tell her that the illness she suspects simply doesn't exist.This memoir not only lets us into the family experience, it also shines a spotlight on the mental health system, with the flaws and limitations of too little research and too much closed-mindedness.

And, oh boy, are there flaws. From laws that forbid the family to "force" medication on someone who is so clearly helped by it to psychiatrists who are all too quick to "blame the mother", these "flaws" quickly close door after door.

Kudos to Steel for telling her story. There is no fairy-tale ending here. Perhaps that's why she writes so many such endings in her novels.

Mom-to-Mom, and I thank Steel for this book. And my heart goes out to all in her family.

View all my reviews

Henry's Demons, review

Henry'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

Faith Leaders: How Can You Help Your Congregants?

Did you know that, according to Mental Health Ministries,

"Surveys show that sixty percent of Americans seeking help with mental health issues turn first to ministers, priests and rabbis. This is twice as many as those who went first to a psychiatrist, psychologist or family physician."

Wow! Not only that, but not all of these leaders are adequately prepared with the information to provide the help that's needed. Here's a link to wonderful resource you can download:

http://mentalhealthministries.net/links_resources/study_guide.html

This is full of lots of wonderful information. I guarantee it will set you on a realistic path toward being of real help to your members who are so in need of your support when mental illness comes into their family.

Thanks for all you do!

Ben's Goals, and Rosalynn Carter rocks

Former first lady Rosalynn Carter has always made mental health part of her platform, and continues to educate.  Check out this video and her latest book, Within Our Reach.http://www.amazon.com/gp/mpd/permalink/m3Q34F82H33GZK

People with mental illness deserve respect.  Their courage is enormous, the obstacles often beyond comprehension for those who don't understand.  Ben earned another six college credits this semester, and is on the Dean's list.  Amazing! He's getting his life back in small steps.  Never, never compare his progress to someone else his age whose brain functions without illness.  There are other yardsticks to use.

When I cleaned out my son Ben’s apartment seven years ago, I found a little metal box.I peeked at its contents: more scraps of paper, obviously precious enough to be stored in this place of honor. I couldn’t bring myself to open these papers then. What crazy ideas would I find written on them?

At that time, I had just seen Ben admitted to the psychiatric hospital for the fifth time in six months. He was so desperately ill, his schizophrenia so in charge of his mind at that time. I’d seen enough; I’d heard enough. I threw the box in with the rest of his “desk supplies” and stored it away with the rest of the evidence of his disastrous attempt to live on his own that year.

Now, alone in Ben’s old bedroom in our home, I have found this metal box in a storage bin. I sit down on his old captain’s bed. I stare at it. It had originally held mints: “Organic Cinnamon Snaps! Over 100 snaps per box,” reads the cover. The hinges are covered in duct tape now; the picture of forests and volcanoes under the words has faded. Ben’s little treasure box, now seven years old.

I open it. Inside are pages ripped from a small spiral notebook, carefully folded to fit. I hesitate. I do – and I don’t - want to open these.

What will I find? What secrets has he kept in here? I hold the box in my hand, a key to the things my son considered sacred when he was 20 years old. On the inside lid is a quote, printed directly onto the metal, courtesy of the Cinnamon Snaps manufacturer. It says:

“The measure of mental health is the disposition to find good everywhere.”Ralph Waldo Emerson
I almost smile at the irony of this: Coincidence?

I take out the first paper and unfold it. I expect to see what I have found before in his writings from that period: grandiose ideas, poetic phrases, delusions that guide my son when his symptoms flare up.

But I’m wrong. It’s only a list of phone numbers, readable, organized. His friends, our family, his most recent employers. At the bottom of the list, the names of some old friends – from high school days – with no numbers listed.

People he hoped to get in touch with again, I think. I’d almost forgotten how many friends he used to have. So many friends. Would they even talk to him now?

I open the next paper. It’s another list, with “Stuff” written across the top, then: candles, lawn chair, blank tapes, phone card, origami paper. The list goes on; it’s a “want” list, or a shopping list. Things he’d like to have for his birthday, perhaps. The simplicity of these small desires touches me.

The next sheet is a to-do list. Again, the handwriting is legible and the columns organized. There are about seventy-five items on this list. Most are written in blue ink, a few in green, black or red. I stare at this for a long time.

Among the plans he’d made:

- Write letters (with a list of over twenty people, including me, Ali, other family, old friends, our rabbi, his old therapist – what had he wanted to say?)
- Write play
- Write animal language dictionary
- Make gifts: Mom pillow, Dream Catchers, Ali cookbook (for his sister)
- Compose college essay
- Build a drum
- Make chess set

More lists: movies he wanted to see, videos he wanted to rent, books he wanted to read, CDs he wanted to buy.

I’d almost forgotten that he used to have dreams. So many dreams, such simple ones. Any dreams at all. It’s not fair! He had all of these plans. Will he ever get to do them?

At the bottom of the pile is a last piece of folded paper. This one is messier, but I can still read what it says. It is full of quotes, ideas, and plans that are more internal. Written here are ideals Ben wants to live by, almost like New Year’s Resolutions:

- Listen a lot.
- Blow nothing up out of proportion.
- Simplify, don’t be hypersensitive.
- Don’t judge people.
- Don’t use your muscles, use your mind.
- Don’t use big words.
- Think before I speak or act.
- Don’t try to control others, let them be.
- Reach out to people, lovingly.
- Hear and consider others’ points of view
.…and the list continues.

I’d had no idea Ben was trying to change himself all the time I was desperately trying to change him.

Plans for his life - a life now at a standstill. A life worth living; a life worth saving; a life stolen from him. Will he – will we -ever get it back? My boy, my precious boy. I know you’re still in there. Come back to us. Come back to you.

I wipe my eyes, carefully refold the papers and put them back in the little metal box. I wish I could sleep with it under my pillow, like a lost baby tooth, and have my wishes – and Ben’s – come true.

Bring Change 2 Mind

Want a wonderful site to learn more about advocacy and acceptance? Check out http://www.bringchange2mind.org/.  Glenn Close, co-founder, will speak to neuroscientists in November.  Also, as always, check out NAMI for education, support, info - national at http://www.nami.org/ or your state affiliate.

Ben received an evaluation from his drama professor, who has no idea he has schizophrenia. Evaluated him against professional acting standards.  Effort? An A. Acting skills? B- or C+, maybe (and the acting skills grade in the one that he will probably get in the course).

My own inner voice is shouting "not fair!!!" Would a physical education professor penalize a runner with an arthritic knee for not being able to win the race?  Ben is devastated.  For him, memorizing and delivering his monologue, knowing and executing all his blocking and lines, being a reliable cast member - he thinks he did a wonderful job. So do I.  Every class attended, every assignment in on time -- is it fair to grade according to these exacting acting skills alone? Especially when Ben's scholarship depends on his grades?

If he hadn't tried, I'd leave it alone. But his commitment and hard work were never in question.

The dilemma: do I tell the professor about how hard Ben struggles sometimes just to follow a conversation, much less remain focused for an entire play?  Does he know what a miracle it was that Ben completed this?  Do I, as Ben's conservator, step in and give the professor this info? It soesn't seem fair that, now that Ben can "hide" his symptoms with the help of meds that also dull much of his energy, for him to be graded on a lack of physical energy on stage.

Dilemma. I so want to Bring Change 2 the Mind of that professor....

Beyond Trauma

I had the pleasure of presenting with Linda Appleman Shapiro, author of Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness, last week at the library in Ridgefield, CT. Each time I tell Ben's (and our family's) story, I see at least one face in the audience that seems to open with relief: Can we really talk about these secrets? Is mental illness really not the source of shame I've been assuming it is?

Yes, let's talk. A mental illness is just that: an illness. It is no one's fault. It just is.

Great books for practical advice:
When Someone You Love Has a Mental Illness by Rebecca Woolis
I'm Not Sick, I Don't Need Help - Xavier Amador - great info, "system" doesn't always work, but helps understanding greatly
and - believe it or not, for basics - there are "dummies" books for schizophrenia, bipolar, etc.

What familes need:
Support
Education
Acceptance (Letting Go)
Reality check, Respect, Resilience
Communication
Hope - and, yes, Humor

It spells SEARCH.
My son Ben is living a very worthwhile life, filled with love, even with paranoid schizophrenia. Even so, my expectations have changed. It is a new normal. R for reality...