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.

Later this week, the U.S. House of Representatives will begin debate on comprehensive health care reform legislation. The bill, known as the Affordable Health Care for America Act (HR 3962), contains a number of critical coverage expansions and improvements critical for people living with mental illness. Among these are:

1. Expanded Medicaid eligibility for childless adults up to 150 percent of the federal poverty level (about $16,200 in annual income for individual), including individuals living with serious mental illness who currently do not qualify for Medicaid coverage in their state. These individuals are currently more likely to be uninsured and most likely to be without any health care insurance coverage at all. HR 3962 will ensure access to lifesaving medical care for this vulnerable group.
2.  Expanded coverage for the uninsured through a new national health insurance “Exchange” would be required to have mental health benefits and cover those benefits at parity. This would expand the 2008 federal parity law into the individual and small group market in many states.
3. New protections for individuals that already have insurance coverage or are at risk of losing coverage. Insurance reforms included in the House bill would ensure that people with mental illness could not be denied health insurance benefits on the basis of a preexisting condition or could not be dropped from existing coverage due to their medical condition.

Please contact your House Member and ask them to Support HR 3962

And remember – 1 in 4 families are effected by mental illness

                                  Mental Illness causes more disability that any other illness.

Yet – with proper treatment 80% of those diagnosed do recover!

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!

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. 

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.