Tag Archives: schizophrenia education

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?

 

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Schizophrenia and Social Security Benefits

paperwork
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 Continue reading Schizophrenia and Social Security Benefits

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

BynesAmanda 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 marketplaceNPR 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.
safety-net
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!

 

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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.

PPAL conferneceAfter 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.

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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.

Voices Documentary
Voices Documentary

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. Continue reading Mental Health Links of Hope and Understanding

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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
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. Continue reading Mental Health Students: Learning from Personal Stories

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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!

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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

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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.

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“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.

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

Treatment Advocacy Center, for info and advocacy

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. Continue reading “Person-Centered Treatment”: Yes, please!

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