Looking Ahead, Reflecting Back: BBHV 2011, 2012

January 4th already. Happy New Year, 2012! Always a good time to look back - but not for too long. Also an exciting time to preview what's possible, as well as planned,  for the new year.

BBHV spotted at social workers Conference

In our family we do a "year in review" of our own as we approach New Year's Eve, and certainly tops for me in 2011 was the publication of Ben Behind His Voices, hardcover and audiobook, and all the opportunities that has brought with it to reach families, healthcare professionals, and PAMIs ("People Affected by Mental Illness", the best term I can come up with so far) with its story, information and messages. This year I have been privileged to present at the APNA (American Psychiatric Nurses Association) Annual Conference, sign books at the US Psych Congress, attend and do a poster presentation at NAMI's Annual Conference in Chicago, and connect with so many wonderful readers at author talk/book-reading events for NAMI, RJ Julia Bookstore, Barnes and Noble, Written Words, Congregation B'nai Israel in CT, Fellowship Place, Laurel House, and many more (see "News and Events" for details).

Exciting, too have been TV and radio appearances on Fox News,PBS, ConnTV, WTNH's "Connecticut  Style", NPR and more to tell our family's story  and share messages like the need for open communication, early detection, more research, better understanding, increased respect, and the importance of purpose, structure, community and love to the recovery process. The Press Room has links to more of these interviews.

On a more personal level, 2011 brought a summer challenge for us, when Ben's treatment services were cut drastically and he was re-hospitalized for almost six weeks. We faced, once again, the possibility of losing so much of what he had gained.  Thankfully, he has returned to us once again to resume treatment and the progress he has been making in school, work, and family. We remain so grateful for yet another chance, and also aware that there is so much work still to be done to improve treatment, medical advances, and attitudes.

So - what will 2012 bring? For my son and family I hope for stability and the continued miracles of "ordinary" life and growth. As for the book and audiobook, I hope for more chances to speak with audiences and reach readers, on a national and international level. I also have hopes for increased outreach to professionals and future professionals. I have heard from so many readers that this should be "required reading" for students in this field, and am thrilled to have been asked to speak at two universities so far in 2012.

Some of this is already in the works for 2012, and Ben Behind His Voices hits the road to (so far): Washington DC in January, New Haven CT (Yale) in February, Phoenix Arizona in March (AZ State), Chicago in April (National Council), with a  stops in the works for Alabama, California, Seattle, Ohio NYC, Boston and more. As they say, stay tuned for details...here and/or at Mental Illness in the Family award-winning blog at HealthyPlace.com.

Thank you for being such an important part of 2011.  Here's to all that is possible in the New Year!

Randye

More than just Meds: Recovery Reminders

It can be so easy to get used to success, then to keep wishing for that higher bar.  I've read that it's a human to forget extreme physical pain - otherwise why choose another bout with labor and childbirth? - but what about the emotional pain attached to crisis periods in mental illness?

All it takes is one gentle reminder and the feeling of stress comes running back in.

We've had, now, almost five months of stability with Ben, ever since the family stepped in to "help" his official care team.  He is blossoming once again after a painful summer reminder that without the right medical treatment as the cornerstone of recovery, the house built upon that foundation can crumble like a house of cards.

Watch for Effects of Change

These days, it's almost easy to forget that Ben has schizophrenia. He just went to his first-ever employee Holiday party, which means he is valuable enough to his company to have lasted this long, even into the off-season. His job has provided so much for him: purpose, community, focus, and a paycheck.  He has something to talk about when someone asks, "so, what do you do?" He loves his job and feels like a person again.

His two college courses, too, have been a source of purpose, structure, and pride. What I wouldn't have given, over a decade ago as his illness was developing, to have heard this from one of his teachers:

"Ben, you did your work with dedication and care for details, you contributed to the class with intelligent questions, comments, and a great sense of humor... You are an A+ student, and your final grade for this class is a well deserved A. It was a true pleasure having you on my class. I hope I'll have the fortune of having students like yourself in my classes in the future."

Wow - yes, I am serious. Those are the comments from one of his professors!

That almost makes us forget that, five months ago, Ben was wandering the halls of a psych unit, talking to the voices he never admits to hearing. The sudden lack of treatment services he had experienced during the summer of 2011 had led to a lapse in his intake of his crucial meds, which in turn led to a refusal to return to taking them at all.

We almost, I must remember, lost him again. But thankfully he returned to what his psychiatrist says is  his "former baseline."  How? Meds in place, the other pieces of recovery could be rebuilt:

Purpose, Structure, and Community(family, friends, co-workers, etc.)

Love helps too. But it didn't seem to stick so well while Ben was in crisis.  Now, Ben is healing - and I see signs of emotional growth I have not seen in years. He cares about school. He is thrilled that, at last, he can afford to buy presents for the family with his own money.

Still,  recovery (or stabilization, maybe a more accurate term) can be fragile. There is so much more to it than the medication cornerstone. This week, Ben seems just a little bit "off" at times.  Is it the meds? Always the first thing we wonder. But I suspect his subtle agitation and occasional lack of focus right now is due more to the thing that affects us all, some more strongly than others:

Change.

In the past few weeks, Ben's school semester has ended, his work hours shifted (holiday closings), and he has been experiencing the excitement of giving/getting holiday gifts. Even as a little boy, Ben was always a little "off" as holidays and birthdays approached. Like many of us, the anticipation and uncertainty was almost overwhelming, disrupting the predictability of life. That's one reason we like this time of year, and also a reason many have an opposite reaction as extreme as depression.

It's good to remember that schizophrenia recovery is not just about meds. Ben was anxious around the holidays as a child, so why should his basic nature change now?  It isn't always about the meds - it can be about life. Purpose, structure, community: these things help shape us all.

So we will keep our eyes open, naturally. But also our minds. When life settles into routine again, I think Ben will too.  That has been his pattern since way before his illness entered our lives.

Happy holidays to all!

Open Hearts and Mental Illness: View from both sides

There is so much potential, creativity, intelligence, and a wealth of new perspectives to be gained by being open to those affected by mental illness. One wonderful example is the aptly named Open Hearts Gallery in South Carolina.

Their mission?

One Open Hearts Work

THE OPEN HEARTS GALLERY IS A DYNAMIC GALLERY FEATURING THE TALENTED ARTWORK OF PEOPLE WHO LIVE WITH OR HAVE RECOVERED FROM MENTAL ILLNESS.  ART IS A POWERFUL REPRESENTATION OF THE PERSON WITHIN - HIS OR HER PAIN, RECOVERY, AND TRIUMPH.  THE GALLERY SERVES AS A BRIDGE TO COMBAT STIGMA AND AS A REMINDER OF HOW RESILIENT AND SIMILAR WE ALL ARE.

Check it out. You can also order prints by going to their "contact" page.

Can we open our hearts to those with mental illness? Of course, as the mother of a wonderful young man who also has schizophrenia, I am going to say yes - still, as you know if you have read Ben Behind His Voices, there were times when I felt I had to harden that heart in order to survive emotionally. The journey to return to an open heart toward Ben was not without challenges; my book pays homage to the obstacles as well as to the results of the lessons of love, respect, and possibility that we eventually learned.

But, still - there is always another view. I recently has a conversation with someone whose heart was shaped by her own experience as parenting Ben has shaped mine. In his case, he had been stalked by someone whose mental illness was allowed to go untreated. Untreated! That can be the difference between love and fear, between open hearts and a mind forever closed. And I can't say I "blame" him. How could I?  (for more information about "Eliminating Barriers to the Treatment of Mental Illness", see the excellent website Treatment Advocacy Center.)

So, while most react to my story with gratitude, this person was cold to the idea of someone with schizophrenia being vulnerable, lovable, capable, and worthy of respect. I hope, perhaps, that hearing our story might loosen his heart just a bit. Stories, and art, can help do that.

Crisis Intervention Team Training Makes a Huge Difference

Officer Newkirchen, Deputy Chief Lyddy, Captain Smith

Early this month I attended the annual speaker meeting of NAMI Fairfield, a very strong affiliate in Connecticut.  Our guests? Members of the local police force, one of its eight officers trained so far (as of the end of this month) for the CIT (Crisis Intervention Team).

Here a few things I learned:

1. All Police Academy graduates have had some training in Crisis Intervention. The CIT-trained officers, however, are have advanced knowledge and skills. Kind of like getting the heart specialist instead of the general practice doctor.

2. Police Officers really do care, and want to prevent crime rather than have to make arrests after the fact.

3. Police force hires only about 1% of those who apply. Wow.

4. Those with mental/emotional needs 7 times more likely to encounter law enforcement

5. CIT Actions now include follow-up with the families after an incident to gather key info and make sure they know about resources. Many are unaware of support groups and other places for info/help.

6. Families can pre-register information for the CAD (Computer Aided Database) in case of future incidents.

7. "No one likes to make arrests."

8. CIT Training helps us all. And these officers deserve our thanks. I know, personally, that without the empathy and understanding police officers showed when Ben was confused and symptomatic, his current life might be very different. Officers in the know took him to the hospital, took the time to call me for information, and handled Ben with respect and care. Thank you.

9. Any dollars spent on CIT Training saves lots of taxpayer dollars later. Untreated mental illness has a much higher cost, financially and emotionally, than treated mental illness. Ask my son, who is earning a salary instead of costing the state money for a long-term stay in a nursing home. Prevention works, and saves lives.

Touching lives, opening eyes...hopes for the book

About four weeks until the actual book release, and yet the most amazing gifts have been coming my way in the form of e-mails, on-line reviews, and blog comments from those who have already read it, via pre-order.  These reactions warm my heart, and bring tears to my eyes - because they resonate so much with the reasons I felt the story had to be told.

Meanwhile, my Ben has actually asked to hear a bit from the book. First time ever. I think he is starting to accept that it can be of help to others. The road to this acceptance is his journey to take, at his speed. Locally, some people have slipped on occasion and called him "Ben" - which is not his real name - and he laughed about it. Whew. Trying to honor his privacy, and also keep the door open. He did give me permission to write this memoir, as long as it was clearly from my perspective (which it is) - but I'm still releived to see that he still seems supportive of it, even now that it is real: a book you can hold in your hands.

Among the comments:

"It truly is extraordinary. Your writing style is fresh, captivating and riveting. Your vulnerability is inspiring and wonderfully raw. As someone who has been immersed professionally and personally in the world of mental illness, thank you."

"I find your book a miracle of persistence, strength and love. It is a great book, in particular, I think, to give a view of what parents go through."

"I just finished reading this book for a review.... I just wanted to say that I am both incredibly overwhelmed and in awe of your strength and your family's. I fell in love with Ben through the story; felt the sorrow, the fear, the pain, the anger... I am so blessedly thankful I get to have a chance to share this story with all of our readers."

" I couldn't put your book down because I could relate to your stories and all the stages of acceptance that you went through and are continuing to go through."

Thanks to all for taking the time to write, and comment.

Another theme is developing as well, as I read your comments -- many who have been educated in the fields of psychology are telling me that it has really opened their eyes to early symptoms of mental illness - and that (shock, to me!) there was no requirement to study these signs as part of their curriculim.  I have been told by fellow author Susan Inman (After Her Brain Broke) that this is often true in Canada -but I always assumed that here in the U.S. our providers were adequately educated about mental illness. 

If you are a therapist, school psychologist, social worker, etc - were you taught about these illnesses?  Were you educated as to early symptoms to faciliate early detection, and to help families participate in treatment? 

If you are a teacher, professor or college administrator, are courses in the major mental illnesses part of the curriculum in these fields? Why or why not? 

Just asking.

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!

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

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.

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.

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.

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?

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.

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

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.

Right Words, Right Time, can offer Hope

I was the keynote speaker this week for the newly-renamed Child and Family Guidance Center, in Connecticut, celebrating 85 years of support and guidance in the area.

Speaking about the importance of early detection, and also of the lasting effect of the "right words at the right time" from providers who are aware of the effect of mental illness on the entire family, I saw a number of heads nodding in agreement. There are so many, still suffering in silence, embarrassed to talk about an medical illness that happens to affect the brain of someone they love.

One provider, a 25-year veteran social worker called "Helen" in my book Ben Behind his Voices: One Family's Journey from the Chaos of Schizophrenia to Hope (Rowman and Littlefield, coming Summer 2011) answered one of my questions with a sentence that has comforted and inspired me for years. I wonder if she knows how much I lived on that one sentence?

My son Ben had been living for almost five months on the state's "transitional living floor" after his fifth hospitalization that year. I'd had to make him homeless in order for him to qualify for a bed in a supervised living home. The wait for this bed was long and frustrating, and Helen had called me in to her office to brainstorm ways to help Ben get out of the limbo that is transitional living.

After an emotional meeting (Helen had been kind enough to ask me "so how are you and your daughter doing with all this?" - which few providers ask - and I had sobbed through my answer), I asked Helen, "How do you do this job? How do you deal with case after case of ill clients, sobbing relatives, and the paperwork of this system?"

I'll never forget Helen's answer. She handed me another tissue, looked at me with warmth and respect, and said "I'll tell you how I do it. And Why. It's because I love to see people get better."

People get better? I thought. That's possible? There's a chance for a better future here?

Helen was right,too. No, it's not perfect. Ben's life as I'd imagined it when he was a child is not in the cards right now. But - he's flying with us to Madison, Wisconsin for a family trip tomorrow. His self-talk is actually controlled enough to no longer frighten flight attendants. He has been - knock wood - stable for almost four years. He is in college, and handling a part-time load realistically and well.

Can it go away if he goes off meds for two days? Sure. But today - wow. His life is better than it was, so much better than I'd feared. Thank you, Helen, for giving me hope when it hardly seemed possible. I hope my book can do the same for others.

yes, things can get better

If you're stuck in the middle of the crisis/chaos stage of acceptance, you've no doubt got your hands full just trying to cope with immediate needs. Been there, don't want the t-shirt, hopefully not going back again - but, as you probably know, chaos is only a short trip away without medication compliance. Right now, as always, grateful for every good day.

Today Ben calls me to make sure I'm pleased with the job he did with household chores yesterday. "Did you see what a great job I did?", he asks. "Remember, Mom - if there's anything I missed, just tell me and I'll fix it. You know I'm good for it. I want you to be happy with my work." I say, "Wow, you're really conscienctious, honey." He says - and I can hear the smile in his voice - "Yeah, well, you know I like money."

He has his sense of humor back. And satisfaction guaranteed, to boot. How about that?

I sometimes pay Ben $20 when he visits on the weekend in exchange for a very specific list of chores I need done around the house. The more specific, the better: "Lift up the picture frames and dust underneath them. With Pledge. Only on wood surfaces." This clarity, I've discovered, leads to much more focus and better results.

Paying a 28-year-old child for dusting and vacuuming? Sure. He's on disability and though he wants a job, he isn't that realistic about landing one. He looks - with his job coach - in places that are a bit out of his reach, either geographically or in terms of work experience and history. Meanwhile, he has no money for, say, an occasional movie or a Quizno's sub. He hates to ask for money from me. He has his pride, and I'm glad of it. So I give him work to do, which I need done, and pay him for it. Win-win.

What surprises me, though, is how much he cares about the quality of his work, and how important it is for him to get the positive feedback from me. He really wants to earn this money. He hates handouts. That makes me proud.

It wasn't that long ago Ben was telling me that housekeeping was the result of a government plot designed to poison our minds against dust and germs. It was ten years ago that he ranted and raved about this so much, following me around the house while I was cleaning, that I almost threw the vacuum cleaner at him. And then he called the local police, claiming that his mother was getting violent. Fun times. This the basis of the chapter "Almost Arrested" in Ben Behind his Voices (my book, repped by cgerus@comcast.net).

Things can get better. Really.

Fragile, Precious Miracles

Now: In the mail, a letter from Ben's Community College. Out of old habit, I feel a tightening in my chest: Oh, no. What now? It takes a long time to erase long-reinforced reactions to bad news.

This? Good news - a form letter of the best kind. Ben has made the Dean's list for the third semester in a row!
"Dear Ben...You have now earned a place on the permanent roster of students with distinguished performance....we are proud of you and recognize that students like you contribute in special ways to the College."  An A in "Teaching Art to Children", a B in "Theatre Performance" from a professor who's a tough grader.

OK, the B in theatre was difficult to attain, for this reason: the professor did not know Ben had schizophrenia.  Good news/bad news/ difficult dilemma for me as Mom/conservator.  Although Ben's effort had been unfailingly positive-  all assignments in on time, all lines memorized, performance and teamwork reliable - this teacher likes to grade by comparing the students to professional acting standards.  Was focus consistent? Did the actor stay in the moment, listen well to other actors, etc?  He had met with Ben to tell him that his acting skills needed work - could have connected more with the other actors, etc.  He was going to give him a C+ or B-, although he was pleased with Ben's effort.

The dilemma - do I butt in?  After all, if Ben's disability is so well managed that it is no longer obvious to everyone (as it had been a few years ago when Ben was sent to the hospital after an episode of psychosis in the cafeteria), is it fair to expect complete focus and connection from someone whose illness affects those very qualities? Would it be fair to grade a physical education student on his running time if he was recovering from knee surgery, or if he had MS?

I end up calling the professor, just to "share the information", even though legally he cannot discuss the grade with me.  He tells me he "knew something was off" with Ben but had no idea it was schizophrenia.  Maybe that's why all the kids hugged Ben good bye when the play was over but no one volunteered to give him a ride to the cast party.  "Something is off." This breaks my heart for Ben's sake, as if he were a 5-year-old not invited to the birthday party.

Still...he makes friends at school, and loves it. He is choosing courses that he can handle, and he actually cares about getting assignments in on time, and about doing well.  He is so proud to be on the Dean's list, even as a part-time student. Eight years ago he was telling me that school was just a government plot against everyone and he was too smart to fall for that crap.  Five years ago he was choosing a course load that he could never have handled - honors philosophy, etc - and failed time and time again.  Now he is earning A's and B's.

Ben is especially proud of the B in theatre.  I think the info in my phone call helped the professor see things a bit differently, though I can't be sure about that.  I just know that, this time, I had to say something. Ben will never know I made the call.  He so totally earned that B.

Memoir, Ben Behind His Voices: One Family's Journey from Chaos to Hope, represented by Claire Gerus agency. For info contact cgerus@comcast.net

Neuroscience Symposium at Yale

For a living, I make people laugh (radio broadcaster, VO talent, emcee, stage actress).  My hobby? Neuroscience.  It actually comes in quite handy, and not just in understanding my son's schizophrenia.

From the "Neuroscience 2010" symposium at Yale yesterday: Kay Jamison Redfield (An Unquiet Mind), award recipient, reminding us that love makes a huge difference in recovery. Re her late husband: "My rage was no match for his wit." How often it helps to keep a sense of humor, even in the middle of a loved one's crisis. Sometimes it's all you can do to locate your own sanity.

Big topic: early detection, possible prevention. According to John Krystal, MD, Chairman of Psychiatry at Yale School of Med, "brain changes associated with psychiatric illness can be prevented and reversed."  Another presenter warns us that "mental illness is like paraplegia of the brain - we can't change that it happened, but how we deal with it can make all the difference in quality of life." Hope, realism, acceptance - all echoed in one morning.

But, clearly, if full psychosis can be prevented by alert professionals and family members, the outlook is better.  More understanding, less judgment, more hope.  Keep funding research, please!