Another person has joined the campaign to end discrimination against people with mental illness.  Glenn Close, whose sister has bi-polar, is speaking out about removing stigma and creating hope for people living with these illnesses.

Close has appeared on numerous television talk shows with her sister, Jessie, who lives in Montana.  Jessie’s son is also living with schizophrenia and they credit NAMI with giving them the strength to speak out.

They star in a new public service announcement that is airing on several major market television stations.  Ron Howard, who made the movie “A Beautiful Mind”, directed the PSA “film shoot” in New York’s Grand Central Station.  The campaign has received broad support from the mental health community.

Earlier this year, Close helped lead Maine’s NAMI Walks near her home. The campaign Web site, www.bringChange2Mind.com  has had over 80,000 visitors to date and its Facebook community has over 3,000 friends.

see the video here:  “http://blip.tv/play/hMYXgafJfwI“

It’s already starting…..including right here on the Tucson Citizen site……..the man, Major Nadil Malik Hasan was “crazy.”  If you have read any of my blogs before, you know how important it is to me to try and create a world where people living with mental illnesses do not feel stigmatized and one of the first steps is to stop using horribly discrimating terms like “crazy” or “crazed.”  Yes, I agree that someone who goes on a rampage killing 12 people and wounding at least 31 others is not of sound mind, but why don’t we take a look at why this happened? 

If you believe, as I do, that mental illnesses are illness just like any other, than why was this man, who supposedly treated other people with brain disorders, not receiving treatment himself?  Did  anyone not notice how he was struggling?  According to the “God Blogging” post on this site, NPR interviewed others at Walter Reed who said he was. 

Which brings us back to the same problem, the same issues that continue to plague people with mental illness and their families.  Because of the stigma, because of the inattention by our health care system that doesn’t think the mind is part of one’s physical health, because of an overburdened mental healthcare system, because people suffering from a mental illness can feel isoloated and abandoned by their support structure, people with diagnosable brain disorders are falling through the cracks.  One again, as President Obama called this tragedy, “a horrific” catastrophe has occured in this country.

Who knows what was going on in Hasan’s head……Certainly listening to war stories from our returning Veterans experiencing Post Traumatic Stress Disorder was not an easy thing to do, but why is it that no one saw the signs, especially when he was set to deploy at the end of the month? Maybe Major Hasan will be able to shed some light on our questions.

Halloween Horrors from the NAMI Website

It’s trick or treat time again. We don’t mind ghosts and goblins, but when “haunted house” attractions become “insane asylums,” featuring “mental patients” as murderous ghouls, we protest.

Violent stereotypes are inaccurate and offensive and the U.S. Surgeon General has determined that stigma is a major barrier to people getting help when they need it. Help send the message!

Local Attractions
Here’s an example. NAMI New Jersey is fighting an “Asylum of Terror” sponsored by a local museum and supported by a local Walmart and Dunkin’ Donuts, to name a few. Please e-mail the museum to let them know that perpetuating stigma towards persons with a mental illness is a national — as well as local — concern.

In Your Own Communities:
If offensive Halloween attractions or products appear, contact sponsors, advertisers or sellers personally. Educate them. Ask them to remove offensive parts of any attraction, advertisements or merchandise that mock mental illness.
If dialogue fails, alert NAMI members, family and friends to phone, send letters or e-mail the sponsors or stores.
Contact local newspaper editors and television news directors. Educate them about stigma and your concerns. Make the protest a “news event” and a “teaching moment.” Offer consumers and family members for personal interviews.

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Am I being sensitive, but is anyone tired of the pink ribbon campaign? I just returned from a conference in North Carolina and even the flight attendants were wearing pink t-shirts, scarves and/or dresses. It seems like the marketing department for breast cancer research has become overly obsessed with getting their message out. I wonder just how much of the money they raise goes to pay their salaries?

Perhaps I’m just jealous, and I know this blog is probably going to cause many people to be angry with me and I apologize for that. It’s not that I don’t believe in breast cancer awareness (my grandmother had to have a double mastectomy), but as an advocate for people with mental illness I wish there was more awareness and less stigma about mentall illnesses that effect 25% of our population in any given year and causes more disability that any other illness. Yet, with proper treatment, 70-80% of people living with mental illness do recover! Still, no one knows about it! Even the National Mental Illness Awareness Week the first part of October was totally overshawdowed by “pink ribbons.”

The National Alliance on Mental Illness has called for an increase in research spending for the National Institutes for Mental Health.  Below is the statement from their website.
Please take the time to register your thoughts.

NAMI Calls for Increase in NIH Funding
NAMI is joining advocates from across the nation in asking President Obama to make medical research for improving health care a priority and support robust funding for the National Institutes of Health (NIH) and the National Institute of Mental Health (NIMH).
NAMI and other illness and patient advocacy groups are rallying advocates to contact the White House this week in support of significant annual increases for NIH.
“NAMI is pleased to join other disease advocacy organizations in support of the ‘Research Means Hope’ movement to ensure that the president’s FY 2011 budget meets the goal of making biomedical research funding a national priority,” says Michael J. Fitzpatrick, NAMI Executive Director. “Investment in medical research is the source of hope for people living with serious mental illness.”
“Direct and indirect costs of mental illness impact the federal budget overall and state and local communities nationwide, including a substantial and growing burden imposed on “default” systems such as emergency rooms, homeless shelters, police, jails and prisons.”
“Adequate investment in research on schizophrenia, bipolar disorder, major depression and other disorders is essential for our nation to address these human and financial costs. The National Institute of Mental Health (NIMH) has received more than $368 million in ARRA funding to support meritorious grants and invest in new ‘challenge’ grants and ‘grand opportunity’ grants.”
President Obama needs to continue this investment in his FY 2011 budget proposal.”
How you can help
Now is a particularly important time for President Obama to hear from advocates because he is working with his administration to determine the FY 2011 budget priorities.
• Take Action: Send a message to President Obama on NIH funding.
• Learn more: Details on Proposed Mental Illness Research Funding.

You can access direct links for taking action on the blogroll lists on this site.

There are times when we have all thought if that person would just change, if that person would just see my point of view, if that person understood me, things would be better.  We would get along better.  We would be happier; he would be happier, etc. etc.

 But a quote from Gandhi says it all – “I can’t change the world, but I can change myself.”

When you really think about it, he is right.  We have no control over how someone else is, but we do have control over how we are.  I use the present tense, because the present is also what matters.

 In the Family to Family class taught at the local non-profit, NAMI of Southern Arizona, participants are first taught about the reality of mental illness and the biological basis of mental illness.  Then everyone learns what it means to be empathetic and to put themselves in their loved ones shoes. It can be an emotional realization for some who have come to the class trying to cope with what can be a day to day struggle.  Parents feel guilty, siblings feel anger and children of adults with mental illness can feel abandoned, or worse. Emotions vary and people can feel like they are experiencing never ending grief after their relative is diagnosed. The young man who was going to go to Harvard now struggles to comprehend a story in the newspaper, the high powered attorney who successfully represented clients in the courtroom no longer has the confidence to speak in public, or as in Daniel Ayers case (the man with schizophrenia in the move “The Soloist,”) an incredibly gifted musician is living on the streets.

 A person’s journey with mental illness can be heart-breaking.  We want so much to help them, advise them, and convince them to take medications.  But, in reality all we can do is support and encourage them and remind them there is hope.  Recovery is a reality and once we convince ourselves of that and acknowledge that today is a present and tomorrow is just a dream and we can’t and shouldn’t force our relative into anything the dynamic changes.

 People living with mental illness need emotional support.  They need to feel like someone genuinely cares.  People with mental illness tend to isolate, so it is incumbent upon us, as people that want the best for them to be there for them and be a much needed friend.

 If you are interested in being a friend to someone with mental illness, NAMI of Southern Arizona also has a “buddy” program.  It is called “Heart to Heart” and it pairs a compassionate volunteer with a person who truly appreciates the value of friendship.

For more information, call the local office at 520-622-5582 or visit the website www.namisa.org

Education Needed to Build Stronger Communities

As the great debate rages over healthcare reform, once again those with mental illnesses are being marginalized because none of the proposals even mention mental health insurance parity.  This is in spite of the fact that those debating the issue in our nation’s capital all have mental health insurance coverage due to the Wellstone-Dominici Act of 1996.  Also, in spite of the mental health parity act that was signed into law in November 2008 and is set to go into effect in November 2009.

Tonight at 7pm at Duval Auditorium at UMC a 90 minute educational discussion sponsored by NAMI Southern Arizona will explore the biological basis of mental illnesses, the recognition and treatment of mental illnesses in children and youth, the state of mental health insurance parity in the nation and Arizona and finally receiving mental health treatment in Pima County from a consumer and a family member’s perspective.  

Dr. H. Clarke Romans, Executive Director of NAMI Southern Arizona says  “Mental illnesses are medical illnesses. That is the starting point for understanding, as well as treatment and recovery. Mental Illness does not discriminate. No one is immune. The U.S. Surgeon General has noted that stigma is a major barrier to people seeking help when they need it. That’s why education is important.”

Panel members include Dr. Francisco Moreno,  Associate Professor of Psychiatry at the University of Arizona, Dr. Ann Lettes, Child and Adolecent Psychiatrist, Gabe Zimmerman, Representing Congressional Office of Gabrielle Giffords, Scott Whitley, representing people living with mental illness and Susan Moreno, Advocate and family member of person who had mental illness.  Dr. Romans will moderate.              

On average, people with serious mental illness live 25 years less than the rest of the population. One reason is that less than a third of adults and less than half of children with a diagnosed illness receive treatment.

 Half of all lifetime cases begin by age 14. Long delays occur—as much as a decade—between the onset of symptoms and getting help.

 Yet, “Treatment works if you can get it,” said Dr. Clarke. “We need to remove stigma and offer help in local communities. That’s a challenge that requires action. Education must precede action.”

 Mental Illness Awareness Week (MIAW) is October 4-10. Designated by Congress to promote public education about serious mental illnesses such as major depression, bipolar disorder and schizophrenia, MIAW was established almost twenty years ago. Other disorders included are post-traumatic stress disorder, anxiety disorders including obsessive-compulsive disorder and borderline personality disorder. About 60 million Americans experience mental health problems in any given year with one in four families being affected. One in 17 lives with the most serious conditions.

That’s what MIAW is about. It means taking a step forward to strengthen our community.

For more information about mental illness, please visit www.nami.org.

Established by Congress and now in its 19^th year, MIAW takes place the first week of October each year, and recognizes the National Alliance on Mental Illness’ (NAMI) efforts to raise mental illness awareness through early detection and accurate diagnosis and to reduce the associated stigma and create awareness though outreach, support and educational programs focused on brain disorders. 

Several activities are scheduled for the week beginning with the Daniel Moreno Recovery Award Event at Skyline Country Club on Friday, October 2nd.  It’s open to the public and tickets may be purchased for $55 per person by calling NAMI Southern Arizona at 622-5582.

Sunday, October 4th

PBS Station KUAT Channel 6 will air the first in the Fred Friendly series on mental illness called “Minds on the Edge” (www.mindsontheedge.org) about current issues in the mental health care system. It will be aired four times that day at 5am, 11am, 6pm, and 10pm.

October 6-8, 2009

10th Annual Community Mental Health Arts Show – Community Partnership of Southern Arizona – 2502 N. Dodge Blvd.         For information, call (520) 318-6994                   Website: www.cpsa-rbha.org

What are shame and guilt?
Shame and guilt are the:
* Feelings of embarrassment, blame and responsibility for negative circumstances that have befallen yourself or others.
* Feelings of regret for your real or imagined misdeeds, both past and present.
* Sense of remorse for thoughts, feelings or attitudes that were or are negative, uncomplimentary or non-accepting concerning yourself or others.
* Feelings of obligation for not pleasing, not helping or not placating another.
* Feelings of bewilderment and lack of balance for not responding to a situation in the “correct way.”
* Feelings of loss for not having done or said something to someone who is no longer available to you.
* Accepting of responsibility for someone else’s misfortune or problem because it bothers you to see that person suffer.
* Motivators to amend all real or perceived wrongs.
* Strong moral sense of right and wrong that inhibits you from choosing a “wrong” course of action.
* Driving forces or masks behind which irrational beliefs hide.

If you are a family member or loved one of someone who has a mental illness you undoubtedly have experienced one if not all of the feeling listed above.  I know I have.

When my son was first diagnosed with a serious mental illness I blamed everything from the flu I had while I was pregnant with him to the bug spray I used in the house when he was growing up.  Could it have been my parenting?   Was I too permissive or over-protective?  Did I spoil him, or not give him enough? Should I have re-married after his father died in a car accident? (one very cruel psychiatric nurse suggested that) Did I not handle the grief properly?  (Both my children went to grief counseling) What about the early signs?  Did I ignore them or was it that I was just ignorant of the symptoms?  Did I get him into treatment early enough? 

The questions can go on forever, but now I know something that anyone with a family member with a brain disorder should know……….IT IS NOT YOUR FAULT!!!  It never was and it never will be.  You certainly cannot blame yourself if mental illness runs in your family.  Yes, there is a genetic component, but who says that’s your fault?

All family members of those living with mental illness can do is support and love them.  Be encouraging, but don’t pressure.  Especially after a serious crisis……it will take your loved one time to heal – just like an injury to the physical body takes time. And, don’t feel guilty because you may have pressured  him, quarreled, or  not understood what was happening before.  Be empathetic and put yourselves in their shoes.  Imagine what it must be like to have the rug pulled out from under you and your reality.  And, then imagine what it will be like when a sense of balance returns. Your relative is in recovery and he’s able to feel your love and support and you’ve been there to assist him in his journey. 

If I’ve said it before, it needs to be repeated.  It’s important to educate yourself about mental illness.  It’s not an easy road to be on……actually it’s more like a roller coaster with the ups and downs and sometimes terrifying sense of no control.  So learn what you can and remember to take care of yourself as well!  If you are not doing well and your guilt is making you ill, you can’t be there for your loved one either. 

An article in the New York Times today motivated me to talk about housing.  A Federal Judge has ruled that the state has discriminated against people with mental illness.

http://www.nytimes.com/2009/09/09/nyregion/09mental.html

Above is the link to the New York Times article about discrimination against people with mental illness in poorly run adult “care” homes.  I put the word in quotes because I don’t think “care” is appropriate in many cases.  Evidently in New York privately run adult homes aren’t much better than many of the facilities in Tucson. The article states that the residents are essentially warehoused and in the case of New York, unlike some in  Arizona, their facilities are licensed!

My son spent less than 2 months in one 3 bedroom apartment that his provider had arranged for him.  It was a nightmare.  Without going into too many details, suffice it to say that street drugs are rampant, nutritional meals don’t exist, personal safety and privacy is not garanteed and in his case the house manager who was supposed to be on-site would disappear for days on end leaving the 6 residents to fend for themselves.

The Tucson Weekly reported in their article, “Slums or Salvation,” that the local unlicensed “necessary evils” are finally beginning to draw some attention and the Pima County Human Rights Committee are starting to make visits to some of these homes.

The annual state audit of the mental health system’s performance that was released this year found it fails nearly all of its patients on key measures.  Among other things,  placing them in stable housing is at the top of the list.  For those who have not been in jail or hospitalized for their illness, the system failed 86 percent of the time. 

And, now with budget cuts who knows how much worse this system is going to get.  For some, living on the streets may be a better choice, but a stable environment is key to mental health recovery and I’m not sure the wash under a bridge qualifies.

Every year as part of Mental Illness Awareness Week the first part of October The National Alliance on Mental Illness of Southern Arizona  sponsors the Annual Daniel Moreno Recovery Award.  This year marks the third anniversary for the event.  Daniel Moreno was living with schizophrenia before his tragic passing in December of 2005 and his family has established this recognition event in his memory.  The Recovery Awards will recognize individuals that exemplify the current reality of recovery for those who have lived with serious mental illness. 

 According to the President’s New Freedom Commission Report, the word “recovery” refers to the process in which people are able to live, work, learn, and participate fully in their communities.  For some individuals, recovery is the ability to live a fulfilling and productive life despite a disability.  For others, recovery implies the reduction or complete remission of symptoms.  The Recovery Award Event provides positive recognition of a person’s struggle, progress and of the courage needed to overcome often overwhelming adversity and stresses. Publicity surrounding the event has assisted in building awareness about brain disorders and encourages anti-stigma.

 If you know someone who fits the criteria you are encouraged to nominate the individual(s) who has courageously faced their illness and recovered.  The Award will be presented at a Reception and Silent Auction on October 2nd, 2009 at the Skyline Country Club. Tickets for the dinner event can be purchased in advance for $50.00.

 To R.S.V.P. for the event or for a Nomination Form call the office at 520 622-5582 or visit the website at www.namisa.org and submit to NAMI of Southern Arizona by September 15, 2009.  A short narrative (not to exceed 500 words) should be attached describing how the nominee(s) meets the criteria above. Points to consider include obstacles overcome, age of onset and duration, degree of improvement, ability to advocate for ones self and others as well as ability to speak publicly about his/her journey. In addition, please ask your nominee to describe in 250 words or less their recovery journey. Submit by mail, email or fax to NAMI Southern Arizona.

 The Moreno Family will make the selection by September 25th at which time the Nominators and Award Recipients will be notified.  If a nominee is not selected, please consider resubmission next year.