Thursday, January 20, 2011

Failure of Our System

Becca and I have yet to comment on the Arizona Tragedy and its relationship to the failed mental health system in America. We are both deeply sorry for what has occurred in Arizona and our thoughts and prayers go out to the victims, the victim’s families, and the Loughner family.

Since the tragedy occurred almost two weeks ago I have watched, listened to, and read countless stories and reports on the incidents. Almost all of these reports touch on mental illness. I wanted to share with our readers two reports that I found very informative. One is a television program on CNN called State of the Union another is a radio program on NPR called the Diana Rehm show featuring Pete Earley, a NAMI father and author of Crazy: A Father's Search Through America's Mental Health Madness; Lisa Dixon, M.D., leading researcher and NAMI scientific advisory council member; E. Fuller Torrey, M.D., of the Treatment Advocacy Center and Dr. Ken Duckworth, NAMI Medical Director. Candy Crowley also spoke with Pete Earley on Sunday December 16 on her State of the Union Show on CNN along with two members of congress.

I encourage all of our readers to watch/listen to both of these programs but I would like to give you all a summary of the important highlights and points made by these professionals.

Pete Earley is an individual that has inspired and continues to inspire Becca and me on a daily basis. Earley’s son has schizophrenia. Earley points out that as a parent you are faced with some very specific challenges. Earley says: “We cannot sit back in the face of a tragedy like the one in Arizona and say ‘what is wrong with those parents?’ or ‘why didn’t they help their son?’ The truth is that the parents often do not have a lot of options with the mental health system currently in place in the United States.” We are in a state of profound public health crisis. It is difficult and sometimes nearly impossible to access mental health care in this country. We do not have a culture where it is accepted for people to get mental health care and we are closing hospitals and treatment facilities. In our country we are weak on prevention aspects of mental health but we know that treatment does work. However, we do not make treatment readily available to individuals who need it most.

Individuals who develop serious mental illnesses are often not aware that they have a biological process going on. A psychotic person does not know they are psychotic and he or she does not see their delusions as delusions at all but as reality. When you have a person that is not aware that they are becoming ill the family and the community must step in to help.

Pete Earley has been faced with many difficult experiences as the father of a child with schizophrenia. He has had to tell his son that if he won’t take his medications than he will not live in his house. His son decided he would rather be homeless than take medication. In another incident, Earley was forced to call the police when his son became violent. The police tazored his son and Earley was left with a son who blamed his father for the events. Earley points out that psychosis isn’t acting out in the way Jared Loughner acted. In fact, only 1% of individuals with a serious mental illness are violent. Bipolar disorder, schizophrenia, and major depression are illnesses and there should be no shame in having these illnesses. The real shame should come from not treating these illnesses.

Dr. Lisa Dixon points out that we are unable to prove that a person is dangerous before they commit a dangerous act. However, we must look for risk factors that could cause a person to commit an act. Substance abuse is a huge risk factor and should be taken very seriously. Judgment is impaired with psychotic illnesses. Parents must follow their gut instincts and if they are waking up early in the morning feeling anxious about their child’s behavior then they should first speak with their general practitioner.

Dr. Torrey, President of treatment advocacy center, pointed out that the system has failed completely, we are dealing with a broken system and the tragedy that we saw in Arizona is the result of a broken system. The vast majority of people with severe mental illness are not violent or dangerous, only about 1% of individuals with serious mental illness are dangerous and these are often the people that need involuntary commitment. I feel that this cannot be said enough.

Dr. Torrey gave a plan for parents: First call your state mental health agency and research commitment laws in your state.
Next, look at the Substance Abuse and Mental Health Association website. Finally, research the National Alliance on Mental Illness and more specifically see how your state compares on their grading the states.

Finally remember: Mental Health is part of health, the brain gets sick and it is part of the process of health.
Become a partner to those with mental illness. It is an illness so it can happy to you. Listen to your loved ones and learn as much as possible about their illness.

You can watch the CNN State of the Union clips by clicking on the following link:

And listen to the NPR program by clicking on the following link:

Sunday, January 16, 2011


As long as I can remember I thought I wanted to be a doctor.  Now that I have completed my undergrad my focus has shifted a bit but is still in the health care field.  I am working towards a masters in public health and then will continue on to a master of science in physician assistant studies.  I am currently working as a medical assistant at a cardiology clinic to get some direct patient care experience.

Every day I am amazed by the ignorance and intolerance health care professionals have towards the mentally ill.  I guess it was my own personal ignorance to think that individuals in health care would be compassionate to all patients.  I cannot count the number of times I have heard “oh that patient is crazy” or before going in a room I hear “Mrs. So and so yeah she’s crazy.”  I constantly ask my co-workers to please stop using this phrase.  I have even gone as far to bring in copies of NAMI stigma busters.

Friday another thing happened.  A patient’s insurance company due to patient noncompliance had denied a medication.  After speaking with the R.N. about the situation we decided it was best to first call the patient.  So I dial the patient’s number and begin talking with the patient.  While I am on the phone the nurse passes me a little note, which reads:  “this patient is schizophrenic.”  She was just letting me know while I was talking with him.  But the truth is that no, the patient is not schizophrenic.  This particular patient has schizophrenia.  As we have said before at Supporting Our Siblings:  an individual is not their disease, they are a person who also suffers from a particular illness. 

But what difference does it make if the patient has schizophrenia, or coronary artery disease, or diabetes?  Would this change the way I speak with the patient and what I try to do to help the patient?  No, it won’t change anything.  So why are we so quick to point out a person’s mental illness?

I let this situation resonate in my mind for a day and then began to write about it.  While I was writing I was browsing the familiar mental health sites and blogs I look at least every week.  I came across a very riveting post by Guy from A Father’s Journey.  Guy previously made us a short video for our blog.  He is running marathons across the country to raise money for mental health awareness.
In his post:  Mental Illness:  The Last Great Stigma, he compares the progress that has been made in other social sectors to progress made in the stigma to combat mental illness.  Guy ends the post saying:  “say no more.”

We all must say “no more” and not take this stigma anymore.  Please join Becca and I in our fight to say no more.

Thank you for all you do,

Sunday, January 9, 2011

If Only I Would Have

Per Anna’s suggestion, I just began reading Elyn Sak’s book Center Cannot Hold. Elyn is a successful author, lawyer and advocate for mental illness. Elyn was diagnosed with chronic paranoid schizophrenia and has shared her story in the aforementioned book. I’m currently only a couple of chapters in but found one excerpt particularly interesting to share with you all.

Elyn discusses the onset of delusions and paranoia as a young girl and the attempts to change said behavior that followed. This excerpt reminded me of my own brother’s attempt to control or change what was going on in his mind by manipulating his diet, schedule and the people he interacted with. I understood what he was doing – simply trying to change the terrible thoughts in his mind by discovering what exactly it was that was doing this to him. Unfortunately, those affected by mental illness cannot do anything to prevent the onset of the illness. Studies have proven aspirin can prevent heart failure, dark chocolate can prevent cancer and a healthy diet of greens and lean meats can prevent obesity. Wouldn’t life be easier if preventing mental illness was as easy as a bowl of peas a day?

As a family member of someone suffering from schizophrenia I know how easy it is to blame yourself or your loved one for the disease. As a parent you may say you could’ve done something different. As a sibling you may think something you said made their delusion worsen. As a significant other you may feel that they just ‘need some space.’ I want to reiterate that mental illness is a chemical imbalance. Unfortunately at this time, there is no way to prevent or anticipate the onset. How can you help? Advocate. Educate yourself. Speak out! Talking about the illness can be therapeutic for you and can do more to help raise money and increase research in the world of mental health.

If you’d like to tell your story, let us know! We here at SOS would love to hear your story and be there to support you and your loved one.

Continue to follow our blog! Want do you want to know more about? Send us suggestions at and we’ll provide the information YOU have been looking for.

Until next time, keep advocating!


Wednesday, January 5, 2011

People NOT Numbers

            Statistics are a way of bringing a problem in a given population to light.  Statistics are also a way for individuals to constructively understand an unseen trend in their area.   The National Institute of Mental Health is a good resource for mental health statistics.  The goal of the organization is to “transform the understanding and treatment of mental illness through research.”  In order to transform mental health in the United States individuals must understand the scope of the problem.

            Statistics can also be very frustrating for a mental health patient and their families.   As a family member I know that these individuals are NOT just numbers, they are people we love.  Without forgetting this fact, I would like to discuss some of the statistics presented by the National Institute of Mental Health.

Bipolar Disorder
o   2.6 % of U.S. Adult Population
o   Most prevalent in 18 to 29 year olds  -This is the time when you are supposed to be going to college, falling in love, starting careers, and enjoying life.  But for many Americans this is the age when their minds begin to unravel.

o   1.1% of U.S. Adult Population
o   60% of adults with schizophrenia used a health care facility in the last year – The 2010 census reports U.S. population has reached 308,745,538 people. If 1.1% of these people are schizophrenic then about 3,339,200 people suffer from schizophrenia, granted this number is probably too large since the NIMH estimate is based on the adult population.  The U.S census website at did not have information about the U.S. adult population.

Years of Life Lost
In almost every book I read with the subject of mental illness there is a discussion about years of life lost among mental health patients.  These years could be lost to illness itself, complications of medications, loss of productivity, or suicide.
Here are the stats:
o   Missouri 2000: meant no. years of life lost 27.9
o   Texas 1999: mean no. years of life lost 29.3
o   This is the difference between 25 and 50 or 50 and 75
o   A lot of life happens in 25-30 years time

o   In 2007 suicide rates were 11.26 per 100,000 people in the U.S.
o   More than 35,000 people died by suicide in 2007
o   Suicide was ranked 4th in the top 10 causes of death in 2007 for individuals age 18 to 65
o   For all age groups suicide is ranked 10th in 2007 out of the top 15 causes of death

 Many individuals battle mental illness every day, yet it is still stigmatized in our society.  I just finished reading The Center Cannot Hold:  My Journey Through Madness by Elyn Saks.  Elyn is schizophrenic and has dealt with psychotic episodes for over 20 years.  She also has had breast cancers.  After experiencing both cancer and psychosis Saks writes:  “When you have cancer, people send flowers; when you lose your mind, they don’t”

Let’s send our own sort of flowers:  tolerance, education, and advocacy.  Help bring support to all the individuals dealing with mental illness all over the world.

As always, please let us know if you have any questions or comments.  We appreciate your continued support and spreading the word about our blog.
Email Becca and I at or follow us on twitter at

Monday, January 3, 2011

Stand Up For One Thing: Unconditional Love

I am sure many of you have heard the story of the courageous mother speaking out on behalf of her 5 yr old son who prefers to dress in sparkly, princess outfits than what many would call 'boy clothes'. Months ago I read this brave mother's testimony via a blog a friend had posted on her Facebook. I watched the mother, Cheryl Kilodavis, on the Today show this morning promote her new book and discuss her son's interest in dressing more feminine. As I watched I thought to myself "isn't it funny how societal views can deeply impact our way of thinking and our classifying what may be 'right' or 'wrong'"?

People are very quick and eager to judge an individual's perspective that they might not understand. I found myself wanting to jump off my bed and raise my coffee to the air and yell "Go get 'em Cheryl, change societal views!" Then I realized (albeit I have several friends that aren't 'conventional' and have fallen in love with someone of the same sex and support them wholeheartedly) I wasn't passionate about this story because this little boy might be gay or might just love girls' clothing and is chastised for it. I was passionate about this story because someone was defending an individual that society doesn't understand.

This past weekend I flew to Chicago to see my dear friend Aly. On my flight I sat next to a young woman that from the minute she sat down was very...well, chatty. Sure, I'll admit that in most instances I like to put my headphones on, open my book and enjoy an hour of uninterrupted "me" time. The woman started with "why are you flying? Well, I'm headed out of town because I need a break. My husband has a mental illness and we have two young kids and I'm just done. I can't do it anymore." That was my cue. I closed my book, put my iPod in my purse and settled in for an opportunity to talk about mental illness; I knew we had been seated to each other for a good reason.  The woman began spouting out frustrations and emotions that were all too familiar. I said, "I understand, my brother was diagnosed with schizophrenia years ago. I won't lie to you, it's an uphill battle that you just can't stop fighting." Her response? "You understand. No one understands, but you really understand." I had that gut wrenching feeling in my stomach that made me want to burst into tears. I bit my tongue, the only thing I could do to allow this woman to tell her story and keep myself from crying. We shared stories, frustrations with hospitals, medications, laws and family members that just don't get it. I provided her with names of websites, support groups and urged her to keep talking. She was so open, so willing to share her story, even when she didn't think I understood.

My point in sharing this story with you, readers, is that it's easier to stand up for someone when you understand where they may be coming from. Moms all over the nation aren't standing behind Cheryl Kilodavis because their sons also prefer a tiara to a football; they are standing behind Cheryl because of her message: that we must provide unconditional love and not allow societal notions to shape our own perspective and understanding.

Readers, continue conversation! Purchase books! Watch movies! Urge your friends to learn more about mental health issues. There are so many amazing resources today that no one knows about because we're hesitant to talk about mental health. I encourage you to sit down on a plane, strike up a conversation, and make a connection. Allowing someone an open ear is worth so much.

Interested in more articles and research? Check us out on Twitter!
Got an extra ten minutes? Read Cheryl Kilodavis' story as well:

Thanks for reading!

Sunday, January 2, 2011


Laura Burke an artist who was diagnosed with schizophrenia in 2005 will be the keynote speaker at the 2011 Depression and Bipolar Support Alliance National Conference. She shares her spoken word poetry and her journey through mental illness in “Superman a Visual Poem.” Click here to watch the video: