Mental Health, Community and Potential:The Clubhouse Model

Last week NAMI-CT's Fairfield Affiliate hosted an informative and inspiring Legislative Social - over 100 in attendance, including about a dozen state legislators, all there to hear about programs and services that help those affected by mental illness live fulfilling, purposeful, hopeful lives. I wrote about it here as well, on my Mental Illness in the Family blog.

My point there, as expressed in my comments at the meeting: don't let the success of these programs and the amazing young adults participating in them lull you into a false sense of security that continued funding is not necessary. It is. Oh, it is. In this climate of budget cuts for the look of the bottom line, never forget that treated mental illness is always way less expensive than the cost - financial and emotional - of untreated mental illness. Keep funding what works!

And here is something that works: the International Clubhouse model. Fountain House in NYC, Laurel House in Stamford CT, Shore Clubhouse in NJ, many others, and here an example from Bridge House in Bridgeport CT. This video was written, produced and voiced by the young adult members at Bridge House.

Possibility, Respect, Understanding. Here is the video. Enjoy.

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!

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....

"Schizo!!!"

Last night, 7 PM. Place: our local community college. Event: theatre department's performance of Lanford Wilson's play, Book of Days. Ben has a nice size role in this, including a page-long monologue he worked hard to memorize.  Ben, who has been hospitalized seven times in his lifetime for various degrees of psychosis, has come far enough to be in this, his second play in one year.  He may major in theatre.  No future in it? I do not care. Ben is completing six credits each semester, and is not cracking under the pressure.  A miracle.

Few know how much of a miracle it really is. Certainly not the 20-something girl seated in front of us, head to head with her boyfriend.  They're looking at the program before the house lights dim for the start of the play.  "Ben Kaye," says the boyfriend. "I know him."  "Me, too." says the girl.  She rolls her eyes and adds, "more like - Ben schizo!", her tone a schoolgirl taunt.

I am shocked. I am shocked at how shocked I actually am. And hurt.  Here I sit, so proud of Ben, so thrilled to be attending this play that he has worked  to memorize and perform.  He is part of something, my child whose illness adds countless obstacles to socialization, to caring, to focus, to belonging somewhere.  And this - this ignorant girl. How dare she! I want to grab her by the wrist, take her out into the hall, and educate her as to how brave my son really is. I want to make her sit down and read about schizophrenia.  I want the stigma to stop.

I share my thoughts with my husband and daughter. Ali looks at this girl, my Cruella de Ville, and takes in her appearance: fishnet stockings, too-short skirt, heavy make-up, superior sneer. "Mom," she says, "all I can say is - consider the source."

Later I will see that Cruella will behave without manners throughout the play: whispering to her neighbors, texting, leaving and re-entering the theatre many times while the play is in progress. Sacrilige. Consider the source, indeed. I don't want to hate this girl, but I do. She has insulted my son.

After the curtain call (and Ben has performed really well, thank you very much), Cruella runs up to Ben and gives him a big hug. Hypocrite or friend? I don't know, I don't ask. But it softens my heart a bit toward her.  She can't help her own ignorance.  But I want to wipe this stigma away with the truth. I want Ben to have the respect he deserves. I want this for every brave person coping with mental illness.

Dean's List

If anyone had told me, 5 years ago, that my son Ben would return to college, earn and A and a B - to make the Dean's List! - and would be well enough to drive me to work as I recover from hip replacement surgery, I'd have been both doubtful and grateful. Grateful for the hope and faith, doubtful because it would have seemed like such a pipe dream. Even now I know it's best to stay in the moment; really, the only way to approach happiness of any sort. Feel it, appreciate it, live in that happiness. Don't think about what the success may predict; just know that there is success.

Ben, who began this semester by refusing his meds - afraid to succeed? - finished with the best results since eighth grade. There is hope; there is a maturation process, there is recovery, no matter how slowly it progresses.

I am SO proud of Ben!

grades

Ben texted me today, with the usual message: "Call me when you get this." Often, this causes my anxiety level to rise - what could be wrong now?" . This time, Ben added "I have good news for you." The news? He got an 85 on his first acting assignment! Wow. Wow. I am happy today. So is Ben. Staying in the moment, always a goal. But I'm so glad about any day that brings news like this. Also, listening to a taped "Psych 101" course, learned that over half of the people with schizophrenia are also addicted to drugs...and Ben has been clean 5 1/2 years. He has so much courage. I must never take that for granted.

college admission, and new research

News came in Google alerts today: "Schizophrenia may blur the boundary between internal and external realities by overactivating and hyper-connecting a brain system that is involved in self-reflection, and thus causing an exaggerated focus on self, a new MIT and Harvard brain imaging study has found." This is a new research finding, and it could explain a lot about Ben and his difficulty in seeing outside of himself. He tries, though - oh, how he tries to act as if he is interested in others. He hugs us, says he loves us, goes through the motions - and, sometimes, I even see the spark in his eyes that used to be there, like a candle struggling to remain lit. I know that he experiences and expresses love as much as his illness will allow. I also know, for sure, that he feels the love from his family and that it is essential to his recovery.

This afternoon we went to the local community college; Ben wants to sign up for classes again. I am both proud and worried about this. He was so sweet - introduced himself to everyone from the advisors and the bursar to the bookstore security guards and shook hands all around. He seems so happy to be going back to school. And yet -there was more than his usual amount of retreating inside of himself. I caught him muttering to himself a few times, or wearing that cagey expression on his face that says he doesn't quite trust the world. When I looked at him, he snapped immediately out of it.He kept saying "Thanks so much Mom. This is great!" What choice is there but to support this, his plan to take six credits and get good grades? I can only hope. I want to threaten him, to make sure that he knows not to blow it. This nagging, I know on a deeper level, will not help. But it's really hard to keep my mouth shut. Ben had initially decided to take only three credits, which seemed much more manageable to me. But it's his life - especially after I fill out the financial aid forms for him, so he can pay the tuition. I've laid out the money, but am going deeper and deeper in credit card debt trying to supplement his meager income from social security. I am more than broke. Where are the caseworkers to help him with these forms? What would happen to Ben if he had no mother around?

Do I do too much for him? I don't think so. He lives in a group home where his benefits cover room and board with $20 a week in spending money left over. I help out by paying for the dentist, supplementing his food with a $100 budget each month (he shops and keeps track), and getting him cartons of cigarettes. Beyond that, Ben has to budget his money. It doesn't go very far. He's working on getting a job, with an employment coach. That's in his lap. His life is in his own lap, and I can't let it break my heart that he has so little in the eyes of the world. Ben is almost 27 years old, and his friends from high school passed him by long ago on the standard paths. This is Ben's journey, not mine.

Ben wants so much to be normal. Will his illness let him have this dream? Will the stress of college be too much for him? Will he wind up overwhelmed, and escape with a psychotic episode like last time? Or will he be uplifted by this chance to rise to the occasion? Will he make some new friends at school? Will he ever get to the point where he accepts what has happened to him, so others he meets can accept and understand it as well?

Classes begin next week. Stay in the moment. I'm proud he has come far enough to try this.

Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal.
contact Claire Gerus, literary representation.