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!

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.

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?

Faith Leaders: How Can You Help Your Congregants?

Did you know that, according to Mental Health Ministries,

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

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

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

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

Thanks for all you do!

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.

Bring Change 2 Mind

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

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

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

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

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

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

Medicare premiums stopped?

The notice comes from Social Security, informing me that "The State" will no longer pay for Ben's Medicare - as of two months ago? No reason given. What? What does this mean? Is he without Medical Insurance then? He has no income, and is trying so hard to get his life back. For the first time in three years, he's in school and actually loves it - doing his assignments, taking the bus every Tuesday and Thursday. His benefits add up to under $900 a month, from SSI, SSDI and a housing supplement. All this to pay room, board, bus fare - with about $25 left each week for all other expenses (including buying lunch at school). He cannot possibly afford to pay for his own Medicare. What gives?

So I call Ben's caseworker at his house, who is sympathetic but doesn't understand what's going on either. The house manager says "I'm clinical, not legal", so he doesn't fully understand the benefit system. I call Social Security, who says to call the State. The State operator sends me to an extension where there is no voice mail and rings 20 times; I call back and ask the receptionist for help. Someone has got to know something. She takes pity on me and looks up Ben's info; evidently a Mr. Banner closed Ben's case in 2007. What?!?! I call Mr. Banner and leave a message. I call my lawyer, whom I can no longer afford to pay, in a panic. What does this mean?

Finally Mr. Banner calls me back and is nicer than I expected. He says Ben needs an EMB, I ask what that is, but he doesn't really know what it stands for. Social Security has to make the determination as to whether Ben is qualified to get Medicare. He sends the EMB. I call Social Security, and speak to another actual human. She tells me this should all be straightened out soon, but since the SS office is two months behind, Ben's premiums will continue to come out of his benefit check for another two months, and then he will be reimbursed.

I call Harrison House, where Ben resides. I think we have this straightened out. But no one seems to know how this occured in the first place. My lawyer returns my call and says she's glad I was able to get this straightened out. Me, too - if it is.

What do consumers with a mental illness do if they have no mother to chase down the answers with phone call after phone call? If six mentally healthy adults can't figure it out, don't know where to turn, how does the system work for someone whose mental capacity is compromised by more than just a ridiculously complicated system? No wonder homelessness seems like a simpler option.

I'm so grateful Ben has people on his side, including me. I'm so grateful.