Guest Blogger: CJ Hanson, Mental Health/Brain Illness Advocate

One day into June, and the official #MentalHealthAwarenessMonth is over - but the fight is far from over.

Please welcome guest blogger, C.J. Hanson, with these thoughts regarding her brother who has serious brain disease.  CJ is one of the authors in Dede Ranahan's award-winning book,

Tomorrow Was Yesterday.

"I have strong opinions regarding the many different causes for the continual denial of help and easier access to real treatment for my brother since the beginning of his trauma and brain illness of Schizophrenia and Anosognosia.

We initially thought the care he needed was going to be available to him given how severe his multiple disabilities including having lost his eyes in an accident and then brain illness.

We each have our own obstacles. But, like most families - access to that elusive help - was slammed shut on us because Mark is an adult who happens to have anosognosia related to the brain illness.

Waiting for him to figure out what is best for him.. what is safe for him... that he even has a serious mental/brain illness... will never happen.

CJ Hanson, Mental Health/Brain Illness Advocate

No one can understand the respective roles that we are each left to play amidst the absolute expectation from society that we should just innately have all the answers, when we have a loved one with SMI/SBD - an expectation that we are fully capable to physically house and care for someone so floridly psychotic after he has fallen 34 years into the abyss and the tiniest of cracks of his mental illness. Our shattered and fragmented Mental Health Policy & Laws which includes abandoning the most vulnerable of those among us and their families is cruel.

Many of us are just family members struggling to be what we are not. - Medical professionals, Neuro Psychiatric professionals, Medical intervention, Legal and Financial advisor, Psychiatric Technician, Social Worker, Protector, Nurse, even Guard - day and night. Every day and night.

From what I have seen some of the top advocates for Mental Healthcare Reform are those who have paid the ultimate price already... either the loss of their loved one to suicide, abuse, injustice or just completely and forever lost in their illness.

Some family members, advocates and activists are still smack in the middle of their struggle to avoid those outcomes.

But, we are all advocates and activists - for Serious Mental/Brain Illnesses and the change towards quality of life, comfort, justice and fairness in #MentalHealthcareReform. Which means including the family members."

~ CJ Hanson

PS - I hope that my friends, group members, and followers will visit the new Facebook page which will follow the development of the movie documentary and give us a "like," follow it... and if you are moved - to contribute to the production and success of the documentary. Please share the link to the page on your timelines and to your friends too for the success of this important project. We will be successful with your help!

https://www.facebook.com/noonecaresaboutcrazypeople

#LPSReform

#HIPAAReform

#NationalShatteringSilenceCoalition

#MayisMentalHealthAwarenessMonth

#NoOneCaresAboutCrazyPeople

Finally...A New Word About Antipsychotics and Weight Gain

If you were asked to take a medication (for an illness you don’t believe you have) and warned that the side effects might include:

• fatigue

• drooling

• sexual disfunction and

• weight gain,

would you take it?

Silly question. 

And, to paraphrase the famous movie line, “You had me (saying hell, no!) at weight gain.”

Seriously.

Still so much to learn

This has been one of the reasons my son hates to take his meds, and refuses or pretends to swallow them whenever possible.  For years, we have worked around this, but yes. I get why.

Finally, though, there is some explanation about the weight gain, which may lead to more research and better medications.

According to new research,  the problem is  in " blocking certain dopamine receptors, known as D2-like receptors.” This is how most antipsychotics work.

But – and I never knew this before (not a neuroscientist, but I sure feel like one sometimes) - “the body actually has more dopamine receptors outside the brain than within it”.

Whoa! This is according to Dr. Zachary Freyberg, the senior researcher on the new study.

And where are these receptors? Many are in the pancreas, too, and “when the researchers used antipsychotic medications to block the pancreatic cells' D2-like receptors, that ramped up the production of both glucagon and insulin. In the body, unchecked release of those hormones could quickly lead to a loss in insulin sensitivity and chronically high blood sugar levels.”

So – the weight gain my son experiences when on these meds is not his fault.

So what now?

Researchers are looking to find new meds that don’t block dopamine, and find other ways.

Wouldn’t that be nice? Please, yes, more research, new treatments. Save our loved ones.

In the meanwhile, I will add that three things have helped my son keep his weight gain to minimum: physical exercise (he lost at least ten pounds when he began to work as a restaurant server), keeping the carb intake down (not so easy for a vegetarian, but the more he used vegetables and fruits the healthier he got), and keeping an eye on boredom eating.  the busier he is, the better his eating.

This isn’t earthshattering news for any of us watching our weight – but it has been nice to see that even on psych meds these methods can help.  

Still – when he lost his job due to Covid crash (economic, not medical), his activity went down and boredom went up.

So – please – keep that research coming.

And thanks for some good news.

On Glee, Odd Behavior, and - Schizophrenia?

Today's post comes courtesy of Ben Behind His Voices reader - and fellow Mom and blogger - Kari Larson. She wrote to me about a recent episode of Glee that I had also watched....and noticed Sue Sylvester's line of dialogue that compares character Blaine's new interest (talking with puppets) to that of someone "with schizophrenia and off meds"

I had noticed it, but it didn't really hit me as insulting because...well, hey, this is Glee, where they exaggerate pretty much everything and nothing is really off limits. Everyone acts erratically on Glee, and eventually they usually redeem themselves with some lesson following the farce.

But my son Ben doesn't watch Glee, so he had no reaction to the episode. Kari, however, wrote about a different experience. 

Hi Randye,

My daughter is 17 and has schizophrenia. She and I have watched Glee since the very beginning and overall it's been a show that embraces all types of people.

The most recent episodes have really upset us, and I'm wondering if some of the dialogue has come to your attention.

In one episode, the character of Marley is complaining about her ex-boyfriend's erratic behavior, that he's nice one minute and horrible the next, and says it's so "schizo."

This not only upset me because it was said in a negative way, but because it's not even correct, further perpetuating the myth that schizophrenia entails a split personality disorder. Untrue.

Another episode -- quite possibly the very next one -- has Sue Sylvester complaining that she didn't want school board members coming to the school and seeing "schizophrenia" students talking to imaginary puppets (one character had a hand puppet).

My daughter is heartbroken. I've sent Twitter comments to Ryan Murphy (Glee creator), Glee on Fox (official Glee Twitter account) and one of the executive producers. I don't expect to hear anything back, but I was wondering if any of this has come across your radar.

Thank you,
Kari Larson

In her blog(http://ninepillsaday.com/) , Kari adds: "I’m annoyed by two things. One: Schizophrenia DOES NOT MEAN split personalities. Two: Please, unless you, the writers of Glee, are headed toward a fantastic teaching moment, STOP USING THAT WORD. Stop using any form of that word. It’s insulting and, more often than not, used incorrectly."

What do you think? Glee "just joking" in the way it does for many issues, or stigma to to be protested? Does Sue Sylvester owe us an apology in a future episode? 

Schizophrenia and Social Security Benefits

Where to Start?

When we began the process for Ben to qualify for Social Security Disability benefits, I was overwhelmed by confusion, options, paperwork....and had very little idea how to begin, much less proceed. I welcome a guest blogger today, Ram Meyyappan, who has written this about Social Security Disability Help. If you have questions, you can contact him at ram@ssd-help.org 

Thanks!

Here is his article:

Applying for Social Security Disability Benefits with Schizophrenia

The Social Security Administration (SSA) recognizes Schizophrenia as a condition that qualifies for monthly disability payments. In order to be found eligible for either one of the disability programs you must show that despite following prescribed treatments your disease still prevents you from working.

Disability Programs

The SSA administers two different disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits.Basic eligibility for either program requires:

• you suffer from a debilitating and formally diagnosed medical condition that has been present for at least 12 months, or which is expected to last at least that long, or which is terminal.

AND

• your condition prevents you from maintaining gainful employment in any field for which you would otherwise be qualified.

In order to qualify for SSDI, you must have a strong work history during which you paid FICA taxes. SSI does not take your work history into account. It is a needs-based program for people with limited income and assets. For more specific information on the requirements for SSI and SSDI, visit: http://www.ssa.gov/disability/

Meeting the Disability Listing for Schizophrenia

After meeting the basic eligibility criteria for SSD benefits, your application with the SSA will be reviewed to see if it meets the listing for Schizophrenia in the SSA’s manual of condition that qualify known as the Blue Book. This listing, which appears in section 12.03 of the Blue Book, requires you suffer from one of more the following issues on a consistent or intermittent basis:

• isolationistic behaviors that make you socially and emotionally withdraw

• illogical thinking

• incoherent speech

• inappropriate moods

• hallucinations

• delusions

• catatonia

• overly disorganized behavior

In addition to your application and accompanying medical documentation proving the previously mentioned signs and symptoms, your medical records and other supporting documentation must also show you experience serve limitations, including at least two of the following:

• the ability to participate or complete normal daily activities of living

• the ability to focus on and complete tasks, including normal job duties and tasks in your personal life

• the ability to maintain relationships or otherwise function in social situations

• to persist in life without experiencing lengthy and recurrent “episodes of decompensation”, which are periods during which your symptoms get substantially more prominent and pervasive

 For more information on applying with Schizophrenia, visit: http://www.disability-benefits-help.org/disabling-conditions/schizophrenia-and-social-security-disability

Getting Benefits without Meeting the Listing

Even if you are unable to qualify under either of the listings detailed above, you may still be able to receive disability benefits with Schizophrenia. To do so, you must show through your medical records and other documentation that you qualify for a medical vocational allowance, which simply means that while you do not meet a listed condition, your symptoms of Schizophrenia are still so severe that they prevent you from working.Residual Functional Capacity (RFC) report forms completed by you and by your doctor are the backbone of a medical vocational allowance. RFC reports on mental functioning and physical functioning may be required, dependent upon the symptoms and limitations you experience.

Applying for Benefits and What to Expect

Disability benefit applications can be completed online with the SSA’s website (http://www.ssa.gov/applyfordisability/) or in person at your local SSA office. Either way, it is important that you collect as many of your medical records and other documentation as possible before beginning your application. All of this documentation should be submitted at the same time, or just after, you turn in your completed application forms.

After submitting your application, you should expect to wait at least three months before receiving a decision. Don’t be discouraged if your application is denied. Almost 60% of applications are initially denied, There is an extensive appeals process during which you may still be approved for benefits.

Article by Ram Meyyappan, http://www.disability-benefits-help.org/blog

Social Security Disability Help 

Amanda Bynes: Will She Become the Celebrity Face of Schizophrenia?

Amanda Bynes is in the news - again. But this time, much of the focus is on the possibility of a schizophrenia diagnosis.  I mention this to Ben, and he says, "Hmmm. Interesting." This story will not, I suspect, make a dent in Ben's insight into his own illness - not now, at least. Patience is key when you love someone with schizophrenia - along with many other qualities.

But we follow the story, to see what the media does with it.  I see Hollywood Gossip report she is on a "drug cocktail" and comment:

"I'm so glad to hear that Amanda is responding to medication (not "drugs"...these are medications to restore balance, not drugs to alter it). Yes, the big question is there: will she take the meds on her own? In my experience, probably not. Many medical reasons for that (see "anosognosia") but her parents should definitely go ahead with conservatorship. It has been a huge help for us! I blogged about this at healthyplace.com, website with great info and support."

My blogs on conservatorship have gotten the attention of Marketplace, a smart and fair show on NPR that is business-oriented, and they have invited me to be part of a show  (coming up this week) on the topic of conservatorship, with Amanda in the news and all. This same issue came to light in when Britney Spears' parents sought to help their child after bizarre behaviors in public brought attention to her possible mental illness as well.  At that time, I was booked to appear on Dr. Drew's HLN show, but got bumped by a Hurricane Irene story. This time, I hope I can be of some help on Marketplace, sharing the family view of how conservatorship can help.

I am Ben's conservator, but it doesn't mean I run his life, or control him. I am simply allowed to help him when he needs the help - and, yes, sometimes when he doesn't know he needs that help. (when schizophrenia symptoms take hold.) It's a safety net. And we need it.

Watch this blog for updates!

Book Tour Continues: Trains, Planes, Automobiles

Catching a train to Boston today, then a drive to Marlborough, Massachusetts to participate in the Parent / Professional Advocacy League (PPAL) 2nd Annual Conference & Celebration as keynote speaker, then a car to Logan Intl airport and a plane to Los Angeles for a US Psych Congress regional event. Presenting about partnering for best recovery outcomes in mental illness by sharing our story as told in the book - and in the year since its publication.

After a book-signing, it's back on the plane home to Ben and the rest of the family. After one day together, I drive back to the Boston area to speak with pharmaceutical reps about how more medication options can keep hope alive. Then home, then back to the airport Wednesday - this time to Seattle, to present with Susan Inman, author of After Her Brain Broke, at the NAMI National Convention.

So many are working so hard to increase understanding, reduce stigma, foster respect, advocate for the right to mental illness treatment and better research in the field.  I am so grateful for the opportunities to be one of them. And grateful that the rest of my family is here for Ben, as I travel to hopefully inspire others to become part of recovery in any way they can.

Mental Health Links of Hope and Understanding

There are so many working to increase awareness, reduce stigma,  advocate for proper treatment and services for those with mental illness - and their families. Sharing stories, spreading the word, creating events, producing documentaries, writing letters, speaking to legislators - we are everywhere.

Here are some terrific links I hope you will check out and support - and that they might be of some inspiration to you as well.

Check out this trailer for a documentary-in-progress called Voices. ("A documentary about people who live in the shadows of society") Gary Tsai, a resident psychiatrist in the Bay area, is one of its producers.

Why this film? (still in post-production, not yet released, but there is lots to see on its website)

"Some have been living on the streets for decades, others are now housed, but all are connected by their struggles, and successes, with mental illness. By shining a light on their experiences, we aspire to give them a voice and to humanize their experiences so that they are defined not by their disability or homelessness, but by their unique and compelling stories."

Here is another documentary, which has its first hometown screening tonight in Chapel Hill, NC.

view the trailer here

According to producer KevinCullen, “A Moment of Clarity” is an intimate documentary providing true insight into the world of bipolar disorder told through the life and art of emerging painter Isti Kaldor...Hospitalized during a manic period at UNC Hospital, Isti started to paint. Never having painted prior to his manic break, something in his mind was awoken, the results of which were evident in the dynamic expression of his artwork...(and Isti)has arrived at an unforeseen destination. A place where he can finally do what he dreamed of years ago. Touch peoples lives."

And here is a story of love and friendship:"

Schizophrenia Makes Finding Love Difficult, But Not Impossible"

Another wonderful source of "Links of Hope" come from the readers of Ben Behind His Voices. I am so grateful to you for reaching out to share your stories with me, comment on the book, and continue to spread the messages of understanding and possibility.

One such call led to a chance for me to see a newly-recovered side of Ben's empathy and progress. I blogged about it at healthyplace.com

Together we can truly make this particular change, one story (and, hopefully, solution) at a time.

Thank you for keeping the dialogue going.

Mental Health Students: Learning from Personal Stories

This entry is a synopsis of a recent post in my "Mental Illness in the Family" blog, where I talk specifically about how mental health nurses have made a difference for Ben, and for our family.

I know from conversations with mental health professionals that they often feel unsatisfied with the fact that they seldom get to see the results of treatment: patients doing better, people in recovery. For mental health nurses, there is no equivalent of the "reunions" that NICU nurses get to see , to witness  the premature infants they'd cared for, now healthy and grown. That is a shame, I think. I wish sometimes that Ben could "visit" the hospital where he got stabilized, to share how well he is doing now. Maybe someday.

Nursing Students at Fairfield University

For now - I feel really proud to have had the privilege of addressing a group of mental health nursing students at Fairfield University in Connecticut. Their professor, Joyce Shea, had heard me speak at the APNA (American Psychiatric Nurses Association) Annual 2011 Conference, and assigned Ben Behind His Voices as required reading for her mental health nursing students.

To my great delight, Ms. Shea shared with me some of her students' reactions to the memoir, and invited me to speak with them about how mental health nurses can make a real difference in the family experience when mental illness results in hospitalization.

The students had to answer some questions after reading the book, and Ms. Shea was kind enough to share their answers with me.

Question #3 was thought-provoking: What would be like to have Ben as a client?

some answers: "a great experience because these people are special and unique...frustrating because he can be stubborn...challenging yet rewarding to see improvements...his illness does not define him..."

Question #4 brought tears to my eyes: What would be like to have Ben as a brother?

some answers: " like most other diseases mental illness is a family disease...emotionally draining, difficult not knowing what would come next...struggle to accept everything...scary not knowing which version of my brother I would be dealing with each day...however Ben is very loving so it would probably also be very rewarding if I could help him..."

Not an easy question, perhaps - but a key to the compassion that helps families so much.

I loved meeting these students, and hearing their commitment to the work they are training to do. I was thrilled to have the chance to humanize not only the patients they will meet in their careers, but their families as well.  Since they had already read my book, the messages only had to be reinforced rather than introduced.

I look forward to similar opportunities in the future. One of my hopes for Ben Behind His Voices is that it will reach the professionals, both practicing and in training, to help them see the human face of the illnesses they will try to treat.  I speak soon at Arizona State, Mount Union, and other venues. Please feel free to contact me if you would like to know more about Ben Behind His Voices as required reading. Thanks!

BBHV's Readers react, review, and share

Psychology section, B&N

If getting a memoir from  inside your head to the shelves of Barnes and Noble and the Amazon inventory is like pregnancy, labor, and giving birth, then the process from that point is like raising a child: constant work, many possibilities and rewards, letting go of your baby and letting it find its way in the world. 

Every so often, though, I hear from a reader - someone I have never met face-to-face but who now knows my story in a surprisingly intimate way - and the journey my "baby" is on becomes real to me. These comments from former strangers, now readers, have touched me in so many ways, and have already made all the hard work more than worth it. Thank you for taking the time to write!

from a psychiatrist in Michigan:

" I received your book at a recent conference.  I just finished reading it:  it was amazing - I couldn't put it down! Thank you for the courage to tell your and your son's story - I am sorry you went through all you did until the correct diagnosis was made and Ben rec'd the help he desperately needed.  Your openness and honesty has reminded me again of the frailty of life, but also the hope that there is help.  I have referred many families to NAMI and your book and your commitment to this fine organization has confirmed my trust in their work."

from a mental healthcare provider in Connecticut:

"I just finished your book, and I want to thank you for this beautifully written text.  The love for your son comes through the pages so strongly.  There is not one ounce of blame towards the providers, who often feel helpless as well, yet also want the best for those individuals- and their families- who are facing the challenge of a mental illness."

Jennifer, a student, writes:

"I just finished reading your book.Your last chapter moved me to tears. I'm currently doing an internship at an acute care mental hospital and your book helps me to be optimistic and relate to each patient as a human being. I appreciate the honesty and hope you express in your book which I feel speaks to the struggles that all parents to different extents experience. "

Another Mom shares:

"I read your book this summer on my Kindle, and it really had a powerful impact on me. Your writing was so genuine and heartfelt, and I  have much admiration and respect for you. I appreciate how far you have gone to openly share your story, to take the stigma away from mental illness, to inform families of the resources available, to share the ups and downs of your family's struggle in such an warm, honest manner, and to commit yourself to helping others who are facing similar struggles. You are a truly amazing Mom and your story hit home in a gripping way, giving me much strength."

Keep writing, please - I love to hear from you!

Connecticut Style, WTNH: Interview with Jocelyn Maminta

Jocelyn Maminta is a wonderful journalist and talk-show host - and our paths have crossed many times throughout the years. During my years as a radio personality,  speaker and now author, we often appeared together at local events, and I've had the privilege of hearing about her personal inspiring project, Caroline's Room. She is a skilled newswoman, warm and genuine person, and a fellow working Mom.

Today Jocelyn interviewed me for WTNH's daytime show, Connecticut Style. Thanks to all involved for the chance to share our story and increase awareness of Ben Behind His Voices, as well as the reality and hope it contains.

Ben Behind His Voices: wtnh.com

Practical Advice: Treatment Advocacy Center

This post is for you if you need some clear, practical advice on how to be prepared for a mental illness emergency. The possibility always lurks in the corner, while we try to keep on eye on gratitude for the good days.  The Treatment Advocacy Center has an excellent page on this topic, with step-by-step instructions for keeping the monsters at bay by knowing we are ready for them.

I will send you there through this blog post by their Communications Director, Doris Fuller, who says:

We who love someone with a severe mental illness probably all have our own personal coping mechanisms for getting through the worry and fear and frustration of living with the impact of treatable but chronic brain disease. The demons retreat, but they never retire. For me, being ready for them is the first defense.

I suggest you read her short, poignant-yet-realistic post first, but if you're impatient here's the link to the Be Prepared for an Emergency page.

Like all preparation, this takes time - but will save you a lot more in the future. Trust me.

Thanks, by the way, to all of you who wrote to express concern about Ben and his "adventure" in a questionable neighborhood. Like Doris in the above blog post, I had my eye out for a stress-triggered return of symptoms, but luckily his reactions to the stress all seem quite conventional. The only "demons" were the ones I could see as well: fear of returning to that neighborhood, reminding us to set our home alarm and change the locks, some reluctance to be alone. I would feel the same way.

"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

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!

Why the title "Ben Behind His Voices""? Excerpt from Introduction

why? because Ben is still in there, struggling to connect through the chaos of senses gone haywire, or sometimes dulled by the meds that keep him out of the hospital, in his brain.

Introduction - 2010

My son Ben knows the lyrics to every song I’ve never really noticed on the radio. He’s the one who teaches to me to appreciate the poetry in songs by Led Zeppelin, Pink Floyd, and Eminem. He’s my favorite companion for performances of Shakespeare in the Park, because just at the point when I’m starting to think why don’t they just speak English already?, he invariably whispers something like, “Wasn’t Shakespeare a genius, Mom? Listen to the music in the way he wrote those lines.” Shame on me.

Ben loves nature, children, fantasy video games, helping others, the Indianapolis Colts, Thanksgiving with the family, and vegetarian Thai food. He made the Dean’s List at college last semester. He kills at Scrabble. He has offered to counsel my best friend’s nephew, who is still lost in the world of drug addiction.

Ben is 27 years old. And – oh, yes – he has paranoid schizophrenia.

Ben is not “supposed to” care about others - that's one of the symptoms of schizophrenia. But he does. He is full of love, and we're grateful for his presence. Our family has learned to live in the moment; there are, thankfully, many moments to treasure these days. But it wasn’t always like this, and we know, all too well, that tomorrow could bring more change. Still, we have found hope and love that we once thought might be lost forever.

When Ben was hospitalized five times in 2003 – the height of his crisis period - for symptoms of this illness, no one in my life really knew how to react. No one showed up with casseroles at our door– especially not by the third or fourth hospitalization. People don’t really know what to do, how to support the patient and the family. Unlike a physical illness like a broken leg, there’s no timetable for recovery from something like schizophrenia. There’s no sure moment of getting better. There is no cure; there is only management. As is also true with cancer, there’s always a chance for recurrence after remission. But unlike most cancers, the patient’s very soul seems to be affected by mental illness. The organ it affects is the brain, and that’s the window to our personality, perhaps to our soul. People are frightened of mental illness; they’re uncomfortable visiting someone on the psych floor. The family feels isolated, stigmatized, and often very alone. But there is hope. Ben is in recovery. He is not “cured”, but he can be kept in careful balance. He is part of our family. He is worth knowing. He deserves to be understood and accepted, just like anyone with a more visible disabilty.

Every morning and evening, Ben takes medication to keep his brain in balance. He doesn’t agree that these meds do anything to help him, even though if he stops taking them he winds up back in the hospital within days. All he knows is that they make him feel mentally cloudy and physically exhausted. Ben tells me that he feels like a blanket has been thrown over his mind when he’s on his medication; he loves the initial feeling of clarity and energy that comes if he stops taking it. I know that this euphoria lasts only a day or so, but by the time Ben’s brain has raced past that first phase, he’s too symptomatic to realize that anything’s wrong. He generally just thinks that “people are treating him differently” for some reason. Sure we are. When Ben shifts focus to his inner world, and we try like hell to bring him back to us.

Without the medication that restores the chemical balance in Ben’s brain, he has to fight to remain connected to what’s happening around him instead of within him – and the strain of that effort is heartbreakingly apparent. Ben wants, with all his heart, to prove that he doesn’t need the medication that we know has brought him back to us – at least halfway back.

Daring to Hope

As Ben grows, and grows up (he will be 27 next week), it seems increasingly clear that his maturation process is in slow motion - but that it is happening, however slowly. This gives me hope, and great joy - as long as I remember to stay in, and enjoy, the present.

The Medicare issue seems to be resolved for now - a few calls and one visit to the Social Security office, where even the caseworker struggled to understand the government language of the letters I've received as Ben's conservator. I felt much better, and less stupid, after witnessing that.

Ben has called me three times this week with good news. Twice to tell me about good grades for his school assignments (!!!), and once to tell me he has a job interview on Saturday, which his job coach will help him prepare for. Yes, there was another call with another agenda - he and a night staff person in his group home are butting heads, and it's frustrating for him; but all in all, the good news calls outweighed the calls for help, and that's a miracle I'm savoring. I do think Ben is showing amazing progress, especially now that he's been on his medication more consistently, and out of the hospital for a few years. Could his brain cells be in repair mode, as research suggests?

If the other shoe falls - and family members of people with mental illness live with that, always- I know we'll handle it somehow. Meanwhile, I'm choosing to be happy! And to notice that Ben is showing signs of maturity that I prayed for while he was in high school, in what I now know was the early stage of his illness. He's doing his homework! He's even earning extra credit. He does not WANT to miss class.

So he's ten years behind in exhibiting these signs. Ten years behind kids who are luckier than he was - lucky enough to have unimpaired brain chemistry. This is still progress -and I'm so proud of him. Let this be a sign of hope to parents who are still lost in despair. There is hope. Patience. Do your best, and savor the good moments. With luck, there will be more of them ahead.

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