Grey Matters

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“

I believe in karma and what you “put out there, you get back, tenfold.”  I think this applies to more than just our actions….I think the intention behind what we say has power as well.  So, when I read about the most recent radical right bumper sticker I was shocked. 

From the Progress Report:  RADICAL RIGHT — NEW RIGHT-WING CRAZE PRAYS THAT OBAMA’S ‘DAYS BE FEW’: The newest far-right craze is an anti-Obama slogan making its way onto t-shirts, bumper stickers, mugs, and even teddy bears and baby bibs: “Pray for Obama: Psalm 109:8,” which reads, “Let his days be few; and let another take his office.” It’s unclear whether the intent is to hope for an end to Obama’s time in office — or an end to his life. But the sentiment of the rest of psalm suggests the latter: “Let his children be fatherless, and his wife a widow.” Diana Butler Bass at Beliefnet explains that Psalm 109 is one of the “imprecatory” prayers, “a lament in the form of petition to destroy one’s enemies.” While perhaps intended to be a joke, she notes that the psalm actually “entreats God to destroy the president.” CafePress.com and Zazzle.com, which had been selling “Pray for Obama” items, took them down. Yesterday, however, a Cafe Press representative told The Progress Report that the site was reinstating the merchandise because it deemed it “fair political commentary.” Cafe Press is now asking users to vote on whether the merchandise should continue to be sold. On Tuesday, MSNBC’s Rachel Maddow spoke with “Patience With God” author Frank Schaeffer, who said that while the psalm was “frightening” in a secular context, it’s even “more threatening” in a biblical context.

I know there are many people that don’t like our President, but this is not the first time I have heard of slogans and rhetoric that have been openly threatening to him and his family.  What ever happened to “you reap what you sew?’  Or, the power of positive thought?  Some may say that “wishing his days are few” isn’t threatening, but what about the intent behind it?  Intent means more than words.

I may not be thrilled with the economy, the wars, the growing deficit, and the current state of healthcare insurance,  but the last thing I wish is for someone, anyone for that matter, is to wish “his days be few.”

Oh, and just to end this on a funny note for the holidays…..

Why won’t President Obama be having turkey for Thanksgiving?

Vice-President Biden will be out of town!  (now that’s the kind of political humor that makes me laugh and no, the intention is not to turn Biden into a turkey!)

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.

Finding your passion in life.  I think that is something that eludes most.  I’m lucky I guess, because I have found mine, but it has been because of the tramatic experience of losing my son to mental illness.  I know my mission in life is to do everything I can, using my skills and abilities to educate people about mental illness and create awareness about the reality of mental health recovery. I’m also fortunate because my job as Development Director at NAMI of Southern Arizona utilizes my experience in sales and marketing in our ongoing effort to fundraise.  I’m also offered  the opportunity to speak publically about the many issues surrounding this topic from a family members perspective.  I love what I do and it gives me a mission in life.

Even without a life altering experience, finding your passion is not an easy thing to do.  But, finding it and being able to do if for a living is well worth the effort and enables you to come closer to realizing your potential. I don’t always jump out of bed, excited to get my day started, but at the end of the day I am thankful that what I do means something to me. I admire people I know that work closely with people in mental health crisis.  The stories can be heart breaking and have on many occassions brought me to tears.  These people, like medical doctors and nurses, have to be able to balance their compassion with a focused determination to help the person and the situation.  It’s intensely sad and it would be difficult to not bring home with me.  I like what I do.

So, what can you do to find you passion?  Here are a few suggestions.

1. Do you have a hobby or something you loved as a kid?  Research the possibilites of finding a way to make money doing it.
2. What do you spend hours reading about? Maybe there are some possibilities there?
3. Get out a sheet of paper and just start writing ideas down.  No matter how silly – write it down and evaluate later.
4. Don’t be afraid to ask for help!  Ask you friends and relatives what they think would be a great career for you.
5. When something seems like it might fit, research, research, research. Find out all you can about the topic. Is there a way for you to volunteer in the field and see if it really works for you before making a committment?
6. If you had all the financial resources in the world, what would you do for free?
7. If you can’t do it now, is there a way to work towards your goal? Set a time-table.

One thing to remember – you can have more than one passion in life and sometimes your passion can change.  So, even if you feel you are already doing what you were meant to, don’t close your eyes to something new or something you can additonally do.   I am not an expert and I am certainly no life coach, but doing something that has meaning to you helps you to feel better about yourself  and your life.  And the possibilites are limitless!

With the aniversary  of the September 11th attacks, I find myself thinking about those that experienced first hand the trauma of the day and those that lost a loved one in the tragedies.  As horrible as it was for me to experience, I cannot imagine the horror of being in or near the World Trade Center during the attacks nor can I imagine  experiencing  the death of a loved due to the events of that day.

For me, my protective Mother role kicked in and I immediately called my daughter who was living here at the time and told her to come over.  I waited to talk to my son until he came over later that afternoon as I was concerned it would be too difficult for him to come to terms with given his serious mental illness at the time – I wanted to be present for him in case it caused too much anxiety. I called repeatedly to Hoboken, New Jersey where my step-daughter lived at the time and was relieved when her friend finally got in touch to tell me she had spoken with her and all was fine as my step-daughter hadn’t gone into the City that morning.

As awful as it was for us, I  can’t imagine the horror those intimately involved experienced.  I think their grief, like those of a combat soldier, is more like post traumatic stress disorder.  And, although they are both similar in that they show many of the same symptoms,  through a normal grief process we learn to adapt to the change -  in the case of PTSD the process is overloaded.

As we mature we learn to accept change as part of being human.  We expererience the death of a grandparent and learn to accept the change,  but when our entire view of the world changes, as it did on 9/11, our foundation, our reality of the world being a just place  is challenged.  For someone intimately involved in a tragedy of that magnitude, the anxiety and panic can be  overwhelming.

I know people that moved away from New York City after 9/11.  Some of those that stayed still get reminded of the trauma when fire alarms go off and they have to evacuate their high rise building. My thoughts go out to them.  I have experienced tragedy and unbearable grief in  my life, but I have always known that my world would continue and life would go on.  For them, their world no longer exists.  Like the twin towers, they were brought to their knees and like the twin towers they are slowly rebuilding in a new world.

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.