Laurel House announces "Ben Behind His Voices"Book Launch Event!

Laurel House

Details have just been announced for the book launch event for "Ben" - and I couldn't be more proud to be associated with Laurel House, who will be the event partner.

Want an invite?

Here are the details:  Book Launch with a cocktail reception and reading, September 20, 2011

Laurel House stands as an amazing example of what can happen when those diagnosed with mental illness receive the respect, support, and opportunities they need. Please take a moment to visit their website to see what they do, and read some amazing stories.

I spent a wonderful afternoon last visiting touring Laurel House, and was so inspired by what I saw. This quote from their materials sums up what they do - and what is, still, so sorely needed for others who have not yet found a place like Laurel House.

"Laurel House restores hope by giving people a chance to regain what they have lost: employment, education, housing, companionship, health, ties to their community. Self-respect."

Laurel House is based on the "Clubhouse Model" that is, thankfully, a growing field - but still greatly in need of support.  My hope is that Ben Behind His Voices will help spread the message that recovery is possible, and that the costs of such support for recovery far outweigh the much more expensive cost (financially and emotionally) of untreated mental illness.  (over $100 billlion yearly in the US alone).

Come and celebrate!

Book News! Audiobook Release, Book Launch

BBHV audiobook CD - or will be available via download as well

Thrilled to announce that Spoken Word, Inc - a wonderful young audiobook company in California - has been selected as the publisher, producer and distributor of the audiobook version of Ben Behind His Voices. You can find out more about them at Spoken Word Inc - and another recent release from them will be the timely Wikileaks And The Age Of Transparency, by Micah Sifry.

I'm in the process of recording the narration for them. Previews soon! As a voice talent, I blog about the process on my voiceover blog. We're in full speed mode, since the audiobook is slated for release the same day as the book's official launch: September 15, 2011. Look for the audiobook soon on Amazon and other outlets - but in the meantime the print version is shipping now from Amazon - and I just noticed they are promoting a special price right now on Amazon for BBHV.

Now - the book launch party!  Laurel House in Stamford CT - an amazing resource in that area for those with mental illness - is hosting an awareness raiser on September 20, 2011 (Tuesday evening) and I will be the featured speaker. I'll read from my book, sign copies, and there will be lots of good food, drinks, and info about Laurel House at a great location in Norwalk CT. Want an invite? Contact me at randye@benbehindhisvoices.com, or visit Laurel House website .

Another fantastic, smart and caring organization - Melissa's Project and Guardian Ad Litem Services will hold their gala event on October 6, 2011. I'll be there - and so will the fabulous Jocelyn Maminta from WTNH-Channel 8.

After that?  Fairfield Library and the Fairfield NAMI book club will host an author event on November 17, 2011.  There is more to come, thanks to you and your interest in Ben Behind His Voices.

And thanks for your caring about Ben, as always. Happy to tell you he's thriving, one week out of the hospital. Back at work, starting fall college classes soon. The goal will be to continue this success - one challenge at a time. One day, one phone call, one plan at a time.

A Good Day: Ben Comes Back

Ben is on the phone in the other room right now, talking to his friends and explaining that he hasn't been able to call because  "I didn't take my meds and so I was in the hospital for six weeks." Hey! That's way more open than he was with the psychiatrist this afternoon. Very interesting. But - he sounds alive. Happy. And I can breathe once again, while my to-do list grows with ideas to try and prevent this last relapse from happening again.

But today - we celebrate. Sure, "what-ifs" can always crowd out the joy, but short of the actions we can take today, and plan for later, there is nothing left but the choice to be grateful. That's where we are right now, and boy does it feel good. I have never regretted letting happiness win, not once. Whatever else happens - or could happen - we are, and will be, able to handle it somehow. (That's one of my favorite "momentary mantras"...I have seven of them that will form the heart of my next book, Happier Made Simple)

And there's more! This is a really cool day.

the first copies! Photographer: Ben himself

1. A package arrived from Rowman and Littlefield: my six "author copies" of my book! And - amazingly - the first one to see these copies was Ben. He's the one who took the picture you see here.

2. Author appearances are building. The latest: a collaboration with the wonderful, devoted, brilliant folks over at Laurel House in Stamford, CT. Watch for more details, but it looks like the book launch party will also be an awareness raiser for the issues we all care about (and solutions, such as the ones exhibited at Laurel House). Save the evening of September 22nd and e-mail me if you want an invite!

3. Thrilled to announce a new partner for Ben Behind His Voices, this time for the audiobook version. I start work next week on the narration for Spoken Word Inc., and it will be available in both CD and downloadable versions. So excited! - This company is dedicated, passionate, thoroughly professional, and as excited about the book as I am. Watch for more on this, but you can always go to facebook and "like" their page at SpokenWordInc, and/or the Ben Behind His Voices, audiobook page.

audiobook version of "ben"

4. Ben's employer - the best ever - is welcoming him back to work after this six-week absence. Before this episode, they had no idea Ben has schizophrenia. Now they know. And they are still giving him back his job - with a willingness to adjust his hours to whatever the Doctor suggests. Now that's another miracle. Ben starts back to work tomorrow.

And, while you're on facebook, the published version of "Ben" has both a group and a page. Thanks!

Yes, a very good day. My family feels complete again. I'll take every day of that I can get. And now - to figure out the next best steps. Ben's stay with us is only a "visit" so we can get the transitional pieces into place.

Focus on Hope: Can We Stop the Revolving Door?

My Talisman for the Past 5 Weeks

Tomorrow we finally have the discharge meeting. Ben is, at last, responding to his meds and is well enough to have completely clobbered me and my husband Geoff in a game of 500 Rummy last night.  Time to think about next steps.

It has now been 5 weeks since his relapse. I have no idea what will happen in tomorrow's meeting, but I know this: Ben, of course, wants to return to his independent apartment,  scene of the aforementioned relapse.  There are pitifully few other options right now. If this is currently the only choice, I will not leave that meeting until some clear plans have been set in place to safeguard Ben's recovery. Will keep you posted.

Last night I visited Ben with an orthopedic boot on my ankle. Cat bite. Long ridiculous story. I will recover, but right now can barely walk. I limp so slowly that I couldn't use the hospital's automatic revolving door (too fast).  Let's hope Ben never uses it again either.  That's what we are working towards.  How to combine greatly reduced outpatient support with the goal to stay on meds, in a program, and  out of the hospital?

That said, I now want to bestow an award: Employer of the year goes to Ben's employer. The support they have given us during this difficult time has been exemplary. They have signed and sent a "get well" card to Ben.  They sent him gifts: a company T-shirt, the little toy in the pic above.  I keep the toy in my office for now (things can disappear in the hospital), and will give it to Ben upon his release.  This stuffed crocodile has reminded me that I'm not the only one pulling for Ben's recovery, not the only one who cares.  So I added the post-it-note you see in the picture: "Recovery is Always Possible." It has cheered and encouraged me over the past few weeks, and reminded me that Ben is - and always will be - in there behind the voices waiting to come back to us.

I'm so grateful that, once again, he has. And now we see what tomorrow's meeting brings. I may bring the crocodile with me for moral support.

"Person-Centered Treatment": Yes, please!

Ben is getting closer to release from City Hospital - this time. Some of you have asked about the audio excerpt I posted a few days ago - when did that take place? That excerpt is from my book, the incident dated one week prior to Ben's first admittance in 2003.

Treatment Advocacy Center, for info and advocacy

This year, 2011, marks Ben's first hospitalization in over six years, and this post is about the current setback. What's different now? Mostly this: we've had six years of evidence that Ben can thrive in a group home setting, and a devastating one month of evidence that moving him way too quickly into independent living, without appropriate transition "person-centered" services, was not well thought out.  Simply put, the new staff did not take the time to get to know Ben, his needs, and especially how to properly supervise his medication intake. The result? Over one month now, in the hospital. And now, grateful he is starting to respond once again to his meds, we face the next big question: Where will he go once he is discharged, and how to avoid another relapse? 

They have planned a meeting at the hospital re discharge, and I plan to be there. But, just in case, I drafted a letter to all concerned. Here is part of what I said:

"I want to be perfectly clear about what Ben needs, not just as a patient but as a person – for a successful post-release program.
I am aware, of course, that restrictions exist due to legal and financial restraints over which you may have no control – but as you can see, an ounce of forethought can prevent a very expensive (both financially and emotionally) hospitalization.
First of all, let me state for the record that Ben clearly is not – and was not, at the time of his transfer – ready for independent living of the sort arranged by your agency in May. This should have been clear from his obvious resistance to medication at the time of his intake meeting. A vital part of his recovery process – and the reason he was doing so well in a group home setting – is careful, unwavering supervision of his meds. Even though his success and recovery grew in the past SIX years before his sloppy transfer to the low-income-housing that was arranged, it could only be built upon the foundation of careful supervision of his meds. Even a med nurse is not the answer. It is too easy for Ben to refuse to open the door, pretend he is not home, or to legitimately not be able to be there because of work, school (in the fall he often has evening classes) or the AA/NA meetings he attends. He needs to be accountable to someone for his med compliance- but also have the flexibility to attend the other things that are vital to his recovery such as family events, school classes, NA meetings. This was entirely workable at Harrison House, where – above all – each and every staff member was aware of how closely he had to be supervised while taking his meds.

Now to the rest of his recovery needs, his “Person Centered Treatment.” Ben’s prior success, while based on the foundation of his medical treatment, was based on three other vital elements:

• Community – staff that truly knew him and - in most cases – actually cared about him, applauded his achievements, served as parental figures; housemates who, while not his best friends and often less functional, still provided someone to eat with, watch TV with, go to meetings with. At the apartment building that was arranged, he can’t even smoke a cigarette in front of the building. No "loitering." Isolation is encouraged there. Wrong!!!!! Yes, there are options for socialization, but Ben, as is often the case with mental illness, does not have the self-motivation to go to these places, is apprehensive about the first steps, and finds it easier not to try the unknown. Making an “exercise class” available is not enough.
• Purpose – school, chores that help others, groups to attend, feeling needed. In this lonely apartment? He is lost. No one needs him, except at work – and that is not enough, as you saw.
• Structure – being home to do chores, a schedule for daily living, requirements for NA/AA meetings etc. – but NOT expected to self-motivate. The negative symptoms of mental illness include a reduced ability to plan a productive day, and to self-motivate. At Harrison House, the requirements – and the fact that others were required to do the same (community, again) – gave Ben the structure within which he could spread his wings to other goals (additional meetings, school, etc) himself.

You have told me there are “no beds” anywhere else. I know there is a long waiting period. I know Ben thinks he is happy in this isolated, roach-infested apartment. Maybe our choices are limited now – but if Ben returns to this apartment without the support he needs, he will be back in the hospital before you blink your eyes. So let’s prevent that.

Person-Centered treatment, penny-wise-pound-foolish budgets, required assisted outpatient services, and support for medication adherence are all hot legislative issues, and I know that in CT you are especially limited by the lack of power they allow for case managers as well as families.

But Ben is a person, and there is still a way to work together, and with him, for the treatment he needs to stay functional, while honoring the fact that those with mental illness don’t always “know what’s good for them”, especially while impaired."

Thank you.
Randye

Listen to a Scene: Ben Behind His Voices

One week before Ben's first hospitalization in 2003, I stopped by his apartment because he wasn't answering my calls. This is what I found, from the chapter "Not Sick Enough." Ben's silent treatment, and his living conditions, were almost grounds for the Emergency Room- but not quite. Not yet.

Families on the Treatment Team- and book reviews

First two official reviews for Ben Behind His Voices: exciting! Every positive review, from official sources like these and from readers, will help spread the message of respect, empathy, truth and the need for supportive services for those with mental illness and the people who love them.

From Kirkus Reviews and Library Journal:

An illuminating portrait of a parent coping with the guilt and heartbreak that come from feeling like one can’t “fix” one’s child. VERDICT: Recommended for anyone who is involved with teens or those with mental disorders, and a darn good read for memoir fans.-Library Journal

A mother wrestles with the advent of her son’s schizophrenia and its long, painfulunfolding….The author….is eminently helpful, particularly in the matter of self-medication,which so many of the mentally ill prefer to taking the medications that have been prescribed for them….Heartfelt and surely of help to those new to living with mentally illloved ones of their own.-Kirkus review, June 15 2011

Thank you so much for "liking" BBHV's facebook page, following this blog, calling your libraries to ask them to order the book, and especially now for this: your comments of support re Ben's recent relapse, and your agreements in outrage that transitional services are greatly in need of improvement. Ben is currently, thankfully, still safe in the hospital while I scramble to try and figure out what options there are for after his release.  This I know: if proper plans are not made, he'll slip through the cracks again and will re-relapse. There needs to be the "Person-Centered Treatment" he was receiving in his group home - and that's in opposition to the current team's assessment that Ben doesn't need that type of supervision anymore.

NAMI meets in Chicago

The theme of this year's NAMI National Convention was "Together We're Better." Yes, indeed. I learned so much last week, from so many who are advocating for our loved ones, and will do my best to share with you.

Here's one: Treatment Advocacy Center. Their goal? "Eliminating Barriers to the Treatment of Mental Illness." Check them out - they have a great video there as well as tons of resources.  I also met Canadian Susan Inman, who wrote After Her Brain Broke, Helping My Daughter Recover Her Sanity. I recommend her book and articles as well. Now, with Ben hopefully back on the road to medication adherence, it's only because of my insistence - and my official role as conservator - that information is shared with me as to his treatment plan. While I do realize that Ben's recovery is his own journey, I'm not about to let him be totally in charge at this point if I can help it. There is always that balance between stepping in a letting go. In one article called "Help Us Help Our Children" , Inman says,

"This notion of the overly involved mother is especially persistent and pernicious. Common sense tells women that their currently ill children need their assistance, while mental health professionals are too often quick to label their efforts as intrusive and pathological."

Yes, Together we are Better. Families should be included in treatment info and plans whenever possible. Let's work together for "Person-Centered Treatment" that respects the individual but does not close its eyes to the realities of how brain disorders can affect judgment.

NAMI National Convention:Where We Need to Be

Chicago. Ben is still in the hospital back in Connecticut, and I am here - at the NAMI National Convention.  This isn't the first time I've had to make this decision. Six years ago, in 2005, I left Ben to go to St. Louis for another NAMI function, so I could become a state trainer for the Family-to-Family program. Then, as now, I don't regret my decision. Ben is in good hands (City Hospital staff is wonderful, and Ben is responding - knock wood - to his meds at last) and his sister and brother-in-law are nearby to visit and, well, just to be there.

And, as one speaker reminded us yesterday, Ben has to take care of himself too. I can supply the support, the framework, put the pieces into place - and will continue to do so - but this is Ben's journey too. And, for now, my best decision is to take care of myself. So, husband Geoff and I hit the road on Wednesday and drove 14 hours to be here.

The right decision. Here, I am surrounded by a couple of thousand of people diagnosed with mental illness (including Jessie Close of BringChange2 Mind),  families of those diagnosed (including newsman Bill Kurtis and journalist Pete Earley, author of Crazy: A Father's Journey Through America's Mental Health Madness) and friends both personal and professional. This is where we all need to be right now - talking about everything from proposed budget cuts for Medicaid (talk about crazy!) to the need for Assisted Outpatient Treatment (the lack of it in Connecticut - one of the only six states without it - is the reason Ben has had his relapse).

We all need to be here. We all need to share, advocate, learn - and, yes, laugh. So much has been done, so much needs to be done. I'll share more when we get home. Right now there's a workshop on Supported Housing and I'm on my way.

Mental Illness Recovery: Four Cornerstones

Ben's recent setback (and, fingers crossed, re-recovery) has cemented, in my mind, the "Four Cornerstones of Recovery"  in Mental Health.  Here I share them in in a short video for HealthyPlace.com's YouTube Channel.

Attention must be paid to the human being, while making sure the physical balance is maintained by supervising medications.

And for the family? This reminder: education helps. Here, a link to an article about Family-to-Family, and its documented effectiveness:

Support Program Can Help Caregivers Cope with Relative’s Mental Illness

One Small Glimmer of Hope: We'll Take It

Today: a "discharge meeting" with City Hospital's psychiatric team, and the case managers for Ben who come in with an alleged treatment plan. The hospital's Chief of Psychiatry informs me that Ben's self-talk is now so strong that he shouts back at his voices at times, and it has taken three tries for a group leader to get Ben back to reality. He is decompensating. The meds he is willing to take are not working. We knew that.

Ben's new case manager, who had supervised (ha!) the transition from supported housing to independent apartment a month ago, does not look me in the eye. Not once.

Thankfully, the Doctor rejects the caseworkers' new treatment plan for now - because Ben is simply not ready for it. I breathe a sigh of relief, and together we all work (well, mostly the hospital staff and me) to see what we can do now, while Ben is still in the hospital, to adjust his meds. This is not easy due to the confines of state law, but it does help that I am conservator. What also will help is the way we, as a united team, choose to phrase things to Ben. I remind them that too many options is never a good thing. The simpler the better.

We go to Ben's room. He is asleep, and right upon awaking he seems like his "good self" - sweet, happy to see me, coherent. The meeting itself goes well, mostly because this Chief of Psychiatry has beautifully executed the conversation with the simplicity we'd agreed upon, and with utmost respect for Ben. Remarkably, presented with only two possible choices, Ben agrees to at least add some Clozaril to the meds he is currently taking. He feels validated, and a part of the plan, and yet we didn't give him enough options to confuse the issue.

It's a step. I'll take it. It's the best news I've heard in weeks. I can breathe again - for today.

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.

Schizophrenia and Respect: Still Proud of my Son?

The last line of my book is this (no spoiler alert necessary, don't worry):

I am proud to be his mother.

The question you may want to ask, now that Ben has had his first relapse since 2005: Are you still proud of him?

My answer, of course, is a resounding yes.

Hide and Seek

It's harder to get in touch with the glow in my heart right now, I admit. That's because there's such a big knot in my chest when I think about the fact that Ben is currently starring in a rerun of his last relapse in 2005. Back in the same hospital, looking at me with suspicion instead of warmth, stubbornly insisting that his success of the past six years had nothing to do with Clozaril. He doesn't like the way it makes him feel, he says. He is willing to try something else - that, at least, in an improvement over last time - but I wish he'd just skip all the trials that we know from experience don't work, and just go back on the meds that do.

Expectation is the enemy. Time to regroup. He has come back to us before, and he will again, I tell myself. It's just a matter of when and how.At the Connecticut NAMI annual meeting last night (what good timing, to reconnect with the NAMI community), I was reminded that the road to recovery is full of such detours. So I adjust, and advocate, and wait.

Yesterday a letter came in the mail for Ben. Now the master of his privacy, I open it and discover it is yet another letter of congratulations from his college. He has made the Dean's list once again. Was it really only one month ago that he was handling final projects, a new job, four recovery meetings per week, his chores at his group home, and packing to move to the new apartment that was the biggest agency mistake ever?

Yes. It was. And that person is still in there, still my Ben - just hidden behind the voices once again. Temporarily, I hope and pray. We've been here before, and the clouds have parted, eventually, each time.

As an astrological psychic (don't ask) once reminded me, "It's not your journey, it's his." I will do everything in my power to get him back on the road once again, but he must somehow point his own feel in the right direction.

The letter closes with this, from the Dean:"
I send you best wishes for the future, and my hopes that your recent success will be followed by a lifetime of equally satisfying accomplishments."
Yes, please. Please.

Families and Mental Illness: Listen, please.

one constructive thing...

I woke up early this morning, grateful to have slept at all. It's finally Monday, and the main players on Ben's so-called recovery team are back at work. Maybe - just maybe - I can do something today that will help Ben, repair some small part of the damage that has been done by the recent, blinders-on, money-saving (ha!) way his recent transfer from group living was handled.

The sleepless night came by surprise. After a Fathers' Day filled with blessed distraction, I found myself with physical exhaustion but a wide-awake brain when my head finally hit the pillow. The body knows. Sleep would not come. Too many thoughts.

Today I awake in the family room, where Ben usually sleeps when he spends the night with us. The pillow and blanket are the ones he uses, and they smell of him even though he hasn't stayed with us much since moving into his new apartment. This scent, I think, is what finally lulled me into the three hours of sleep that came at last.

Ben's laundry is clean and neatly folded in the corner of the room. That, at least, was something I could do for him yesterday when the treatment world was asleep. In these three days since his relapse I've revisited the earlier stages of emotional recovery for families (introduced in Class 1 of NAMI's Family-to-Family class), as we all do when crisis suddenly rears its ugly head. Crisis, hoping-against-hope, shock, fear, guilt, sadness, anger - and now I must return to acceptance and advocacy in order to make the calls, have the meetings, figure out a way to fix this if I can. Look out. I'm about to pick up the phone.

Most helpful during last night's insomnia? I reread the latest issue of the NAMI Advocate, reread the insightful comments on this blog and my companion blog for healthyplace.com, and then wrote an entry on the latter, reviewing the four cornerstones for mental illness recovery as I see them: Medical Treatment, Community, Purpose and Structure. Ben had all that (not perfect, but still present) a month ago; now all four have been shaken to the core by the sloppy, extreme and trigger-happy transition that shook his familiar world.

Writing these posts has a calming effect, as though by taking the ideas out of my head and piecing them together on paper or screen frees me from their hold.

It suddenly comes to me that Ben does exactly the same thing when he writes - in one of his many spiral notebooks, on scraps of paper, on his hand. Maybe, for a moment, it gets the voices out of his head and into another place where he can begin to make sense of them, have some control over them. 

We are not so different, after all.

Thanks for reading this blog, and helping me feel like our story might somehow be of help.

Relapse: The Monster Under the Bed

…and it has come out once again. After six years of progress, Ben is back in the hospital again. Insert four-letter words here.

I knew it. Involved families always know it.

Wednesday, after a voice-over session- late in the afternoon – I retrieve two messages from Ben’s caseworker. First message: “Ben forgot to show up for meds this morning. ” (and why did he wait until 4 PM to tell me?) Second message: “I just spoke to Ben. He says he forgot and he will come early for his evening meds.”

Sure he will. I finish my job and drive over to Ben’s neighborhood and the office of his agency. I check all his favorite hangouts – diners, mostly. No sign of Ben. I drive past his apartment – bathroom light on, no changes an hour later. I go and wait at the agency. No Ben. I call my husband and we wait together. 11:30 PM. No Ben. I have called his cell phone about 100 times today. Straight to voice mail.

This is not good.

They tell me: “There’s nothing we can do until tomorrow.”

My husband offers to drive around the streets in case Ben is wandering somewhere. That’s what happened last time he went off his meds, six years ago. Six years since we last went through this, and it suddenly feels like only last week.

“No”, I tell him. “Let’s go home. There is no point. We need sleep.”

The next morning, I call Ben and he – unbelievably -answers the phone at last. Says he’s on his way to take his meds and go to work. He sounds OK, for the few moments we speak. Maybe we caught it in time, I think. I do not hear from his agency so assume Ben did arrive for for meds, did go to work.

At lunchtime, I am scheduled to speak at an event celebrating those with disabilities (including mental illness) who are succeeding at their jobs. Perhaps next year, some year, Ben will be among these honorees, I dare to hope. I deliver my speech, acknowledging that we’d come close to a relapse the previous night but that I think that the responsibility of having a job had actually saved Ben from disaster. This gets lots of applause. Little did I know that while I was on stage, Ben was still in his apartment, refusing to allow his caseworkers – and then the police – to enter. He is saying he lost his keys and is afraid to leave the apartment because he won’t be able to get back in. He is starting to break down. The relapse monster is peeking out from under the bed.

Several hours later, Ben has been brought to the hospital by ambulance and is admitted into the psych unit he swore he’d never see again. He is refusing the only meds that help him. Here we go again.

Two days without treatment – sparked by a transition from group living to independent living sloppily made and with no insight and little thought (don’t get me started. heads will roll.) – and it’s as if the last six years have disappeared. College courses, dean’s list grades, full family participation, and finally employment -erased? Never. Threatened? Oh yes.

Independent living must be introduced slowly. Community cannot be torn away full-force, the way this transition was handled. I am livid. And sad. And ready to advocate. I hope it works again this time. I pray Ben can keep his job – which will only happen if he goes back to Clozaril, the only treatment that works for him. I know it’s not his fault, this lack of insight into his illness, but I can still be angry at the unfairness of it all. At least for awhile. Relapse always calls for a small pity party – acknowledge the feelings so I can let go – and then a move back to action.

There is always this threat looming: Ben may not bounce back. But I will fight like hell to bring him back to life. I have to believe it will work, somehow, again. And know that, ultimately, our only choice may be acceptance. But not yet.

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!  

Nurse Jackie and the Effect of Meds

Nurse Jackie on Showtime

If you watch Nurse Jackie on Showtime, you know that her daughter Grace, age 11, has been suffering with an anxiety disorder that has her heart racing, fears escalating and thoughts rushing.

On this week's episode Grace asks to be put on medication, and her therapist and family agree to try it.  Jackie sits with her daughter as the first pediatric (low) dose of Xanax kicks in, and asks how she feels.

Grace talks about how she can feel her heart slowing down, and how she is starting to feel that she can say  "No!" to the many ideas that are all demanding her attention. The ideas are still there, she says, but she now knows she has the power to ignore them if she chooses to.

I imagine that, for Ben, this is what his medication does for him.  I know he is far from "cured", but when he is stable on his medication he seems to have the power to turn the volume down on all that goes on in his head, and turn his attention to the outside world.  Wothout the meds, the struggle is evident - and he usually loses the fight.

For nurse Jackie, who is addicted to narcotics, these pills are drugs.  For Grace, they are medications, meant to balance what is off-kilter in her brain.

If I hear anyone - ever - say that we are "drugging" our children, I hope they know the difference.  These purists have never spent hours in the Emergency Room admitting an ill relative, I'll bet.  I don't wish it on them, either...but while medication isn't the only component in a good treatment plan, it often is the cornerstone of it.  It's about getting closer to the balance that should exist in the brain.  (I was going to stay "restore the balance" - but the medication has yet to be developed that can get that far, at least with schizophrenia).

So - no judgment, please. And kudos to the Nurse Jackie team for addressing this issue with sensitivity and balance.

Schizophrenia and Family: Walking the Tightrope of Recovery

Recovery in mental illness is possible, yes - but is often a tightrope walk for all involved: consumers, family, friends, providers.  To paraphrase Willy Loman in Death of a Salesman, "Respect must be paid."

This is an excerpt from today's radio interview with Ray Andrewsen of WQUN AM in Hamden, CT, where he asks me about our family experience as schizophrenia developed in my son Ben.

Next Thursday, June 9, I'm honored to be the keynote speaker for Fellowship Place in New Haven, CT, one of many organizations providing much-needed support and community for those with mental illness. .

Eighth Annual Doctor Albert J. Solnit Memorial Lecture

Advance ticket purchase is required. Tickets are $25.00 each. To purchase tickets, please click on the link on the left or call Melissa Holroyd at 203-401-4227 x111. All proceeds to benefit housing and support services to adults who suffer from chronic mental illness.

more info: Hope to see you there if you can make it!

Fellowship Place to host our 8th Annual Dr. Albert J. Solnit Memorial Lecture: a discussion with  Author Randye Kaye, Thursday June 9, 2011 at 7:00pm, at the Whitney Humanities Center Auditorium of Yale University, 53 Wall Street, New Haven.

Join us for a conversation with Randye Kaye, based on her book "Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope", to be published by Rowman and Littlefield in September 2011.  Kaye will share with the audience her experiences with her son who suffers from schizophrenia, how mental Illness affects the whole family and how they helped guide him on his recovery journey as he went from 7 hospitalizations to now 4 semesters on the Deans List at his school.
Kaye humanizes the experience of schizophrenia by including Ben’s point of view, through his poetry and other writings, and pays tribute to the courage of anyone who suffers with mental illness
Following the Author’s presentation, Fellowship will host a panel discussion with the audience and a coffee reception. The Panel will include:

Daniel M. Koenigsberg, MD, Former Chairman, Dept. of Psychiatry, Hospital of St. Raphael, Associate Clinical Professor, Yale Medical School

• Selby Jacobs MD, MPH, Former Medical Director, CT Mental Health Center, Professor of Psychiatry, Yale Medical School

• Allan Atherton: Treasurer, National Alliance on Mental Illness (NAMI) of Elm City, Past President NAMI/CT, Co-Coordinator, NAMI CT Sharing Hope Initiative

• Randye Kaye, Author: ”Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope”, NAMI Family-to-Family educator, Radio broadcaster: NPR.

Independent Living and Mental Illness: How Much, How Soon?

When a hug could fix everything...

I've spent a good part of this afternoon yelling at the people who are supposed to be supporting my son as he completes his first two weeks in "supported independent living." This was determined to be the next logical step after doing so well in his group home - that's what they told me, anyway.

Yeah. sure. Where is the support? In these two weeks, he has become isolated when not at work, has clearly (to us) somehow cheecked his meds twice, and has "forgotten" to show up for morning meds once.  He also missed an appointment with his caseworker. This, too, he "forgot"  - and they caseworker let it slide. After the initial move-in rush, Ben has not finished unpacking. I'll bet there are roaches crawling over unwashed dishes in his sink.  I hope not, but let's just say I have concerns.

Why? Well, it could be the stress of too much change too soon. After seven years in Harrison House - where he had 24/7 staffing, 7 housemates, required chores and meetings, and someone to be accountable to - Ben now is expected to live alone, and "take responsibility."  Except for showing up twice a day to take meds, he is left to his own schedule, his own decisions, his own life. Ben has lost his community, his sense of purpose, his structure and his parental figures.  All without gradual steps. It's like they threw him down a flight of stairs and said good luck.
And, oh sure, we'll take you to the hospital if you break a leg. But we won't bother cushioning your fall or providing a handrail.

Add to that the fact that Ben's school semester ended during this time, he no longer has required meetings to go to, and he has no one to play cards with, say good morning to, watch Iron Chef with. Yeah, he said he hated Harrison House and couldn't wait to get out - but even the things he did to get away from there (extra NA or AA meetings, community Clubhouse, nights spent with his family) were good for him. If not for his job, he'd he alone all the time. And that is not good for anyone.

On June 9th, I'll be the keynote speaker at Fellowship Place in New Haven CT, where they provide community to those like Ben who so desperately need it - and cannot get it elsewhere. I wish Ben lived near their program. If he would go. Things we're required to do sometimes help us the most.

Several calls to the office later, I have spoken to every possible staff member about Ben's tricks for not keeping his meds in his system. If they have to tattoo it on his arm, I don't care. Watch him taking the meds - every second - and make sure he sits afterward according to doctor's orders. No bathroom, no cigarette breaks. Come on! How hard is that? Why doesn't every per diem staff member have access to that info?But - more than that - where is the plan they promised to make this transition easier?  When I asked his caseworker, I got this response: "Well, we do a plan after 30 days, after we get to know him."

Really? When and how do you plan to know him? Do you know how a kid can fall through the cracks in 30 days? How will you know if he's isolating himself?

Will it be too late when you finally notice him?

Quote from the Fellowship Place website: "It is possible to overcome the effects of severe mental illness and move from homelessness, poverty, and despair to a life of hope and self-sufficiency"

Yes- with love, a good plan, a sense of purpose, and the right meds. What if I were not there to step in? What about the people whose families have given up?

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.

Schizophrenia Awareness Day: May 24, 2011

Schizophrenia Awareness Association

The Schizophrenia Awareness Assocation (SAA) in India has declared this day Schizophrenia Awareness Day. Schizophrenia affects one percent of the world's population. Not just in the United States; this is an international statistic. The Times of India has a wonderful article today, talking about recovery and the need for family and social support. Oh yes. Indeed. One quote: 

"Integration of schizophrenics into the mainstream society and spreading awareness on the mental condition is important for normalcy to return. Isolation should be avoided at all costs."

Community Matters

Oh, how true this is - and how tested it has become here in our family this week.  Ben has, in the space of one month, continued at his new job (his first job in eight years), finished his six credits in college (final papers and projects), and moved into his own apartment.  That's a lot of change, and a lot of stress.  So far, so good - almost.

Families who remain involved in their loved ones' recovery know this: let go as much as you can, and keep your eyes open for signs of relapse.  This is, always, the delicate balance. So - when Ben moved from a group home (with eight housemates and 24-hour staff support) to a supported studio apartment (with med supervision a four-block walk away, and no community handy) this month, I had my concerns.  Oh, yes.  I do want him to take (and enjoy) responsibility, but as always medication compliance is the foundation upon which this success rests - and, of course, the emotional and social parts of his treatment plan.

Families know the signs of potential relapse, believe me.  In Ben's case, one day cheeking the meds shows up in his personality: he gets too energetic, tries too hard to engage. His voice goes up in pitch.  I saw this happen this week, so I went in to action: called his new caseworker, visited the weekend staff at the office, and reminded them all: Watch him. He doesn't want to need you, but he does.  Make sure he takes the meds, and that they stay in his system.  Oh, the tricks he can play.

Today he is back to normal.  Mission accomplished - for now. That was a reminder I'd hoped to never see again: that Ben needs the medication to continue to on this amazing path in recovery.  And, he needs his community: family, friend, providers.  He may never agree that this is so, but for now I will be the watchdog.  Thank goodness he has caseworkers who will take me seriously.

This is a team effort.
More from the article in Times of India:

On bringing the patient back into mainstream society 

* Proper medication, family support, therapy and rehabilitation is important

* Psychotherapy, cognitive behaviour therapy, group therapy and family therapy are required

* Rehabilitation through workshops at support group meetings and at rehabilitation centres is necessary

No matter where you live - this is true. Together we can help each other.