Wednesday, October 31, 2012

Besides Voting, Let’s Talk with the Winners

By Sita Diehl, NAMI Director of State Policy and Advocacy

Election campaigns are supposed to be dialogues between candidates and voters. It’s very important to vote on Tuesday, Nov. 6 (or early if your state allows it), but it’s also important to keep the dialogue about mental health care going after the election.

“You’re the boss,” said my congressman, U.S. Representative Jim Cooper, to me when I asked how comments from voters influence his position on issues. He’s got a point, although that does mean he has many “bosses” and I have to speak up to have an impact. So I email him regularly with questions and to express concerns. He always responds sometimes agreeing with me, sometimes not, often adding information to illustrate the issue. We continue the conversation at community forums and I visit his office from time to time.  

I’d like to share our recent conversation on the importance of voting.

Rep. Cooper: “I’m a hired hand with about 700,000 bosses. All of their thoughts are important and I try to make decisions that put our country first. It starts with your vote. These are difficult times, but we live in the greatest country on earth and we can solve our problems. It takes patience, moderation, a willingness to work with others, compassion for the most vulnerable and fact-based discussions about our nation’s future.”  

         
SD: What about Americans who don’t think their vote matters?

Rep. Cooper: “Every vote counts. Some elections have been decided by just a few votes. It’s Americans’ civic duty to pick elected officials and we must all do our part.  Mark your calendar. Before work, after work, or between errands; make a plan to vote and follow it through. I took my 93-year-old mother to vote on the first day of early voting. We never miss an election.”


SD: What if they don’t know who to vote for?

Rep. Cooper: “Research is critical. If you don’t know the people on the ballot or the job description of the position, do a little homework. It’s important to make informed decisions so you can pick who would best represent you.”


SD: What if they can’t get to the polls?

Rep. Cooper: “Check requirements to vote via absentee ballot by contacting your local election commission. Or, you can call a friend, family member or neighbor to see if they’ll join you at the polls. Many local organizations and political parties also provide free rides to polls.”


SD: After the election, how can NAMI members most effectively engage legislators?

Rep. Cooper: “Send introductory letters to newly elected officials and engage with their staff. It’s important to build relationships and begin a dialogue.”


SD: How can NAMI members determine where their officials stand on the issues?

Rep. Cooper: “Again, research is critical. This is where your relationship with the staff comes into play. If you can’t find the answers, request a meeting and ask any questions that you have. My staff is here to serve the people of my district, and is always happy to answer questions that folks have.”


SD: Why should voters connect with elected officials on health care issues?

Rep. Cooper: “Health care is a personal and often emotional issue. It’s important for elected officials to hear from the people they represent. It’s just as important for Americans to understand the laws being debated. Many emails that our office receives contain misinformation, so we spend a lot of time debunking myths and trying to help people understand how health care laws work. I would encourage people to call or write their elected officials not only to express their viewpoints, but to ask questions and to learn about health care bills. Congressional offices are always happy to answer questions from constituents.”


SD: What is the most effective way to communicate with you?
 

Rep. Cooper: “Email is the most cost-effective way, but letters and phone calls are good, too. Our office reads each letter and email that is sent to us, so I can promise that when constituents write in, we pay attention to them. Each year we receive fewer handwritten, personal letters. While we read all correspondence, including form letters, it’s always nice when someone takes the time to write a heartfelt note.”


SD: What messages impact your decision making?

Rep Cooper: “Know the other side to your argument. If you want your elected official to support a bill, know how much it costs and how it is being funded. Know which groups both support and oppose it, and why. Elected officials have to weigh pros and cons of all sides before making a decision.”

 

Like my congressman, I have already voted, so on Election Day I will help others get to the polls. After the election, he and I will continue our conversation. He probably will challenge me as much as I challenge him.

That’s where all of us need to come in together. Elected officials need to hear first-hand about the real-life experience of individuals and families who have been affected by mental illness. They need to hear about barriers to care and about what helps and doesn’t help people. Statistics, legal and legislative analysis have a role when elected officials make a decision, but real, personal stories - brief and to the point – move both their hearts and minds.

That’s how democracy works. Remember to vote, but also keep up the conversation after Election Day.

Tuesday, October 23, 2012

Is American Horror Story Stigmatizing or Just Silly?

By Doug Bradley, NAMI HelpLine Coordinator

The new season of American Horror Story is set on the grounds of a 1960’s psychiatric hospital and, of course, uses imagery of a hopefully bygone era of psychiatry as practiced in a large, dehumanizing forensic facility. As the title indicates, this show is meant to scare or at least disconcert the viewer. Although there are many themes in the first episode, including the role of women, religion and sexuality, the show also uses classic horror props such as strait jackets, locked rooms, and forced electroconvulsive therapy (ECT).

The staff members are generally portrayed as dysfunctional, at best. The clergy in the Catholic-run hospital all have personal issues and one doctor seems to be conducting brutal experiments. When patients “act out” the staff immediately retaliate with heavy-duty tranquilizers, restraints and ECT without any muscle relaxant or consent.

The plot is most concerned with what society considers “normal,” and psychiatry represents society’s control of “abnormal” behavior. As such, the people sent to the hospital for treatment do not seem dangerous, at least in relation to the staff, merely different. For example, a white man in the facility is suspected of murder, but his true “crime” was marrying a black woman. Likewise, a female reporter investigating conditions at the hospital is committed for being a lesbian. While cases like these did occur, to medicine’s shame, there are no characters in the episode being treated for serious mental illness such as depression or schizophrenia.

By some standards, the show could be considered stigmatizing. It does reinforce the image of psychiatric hospitals as using torture and retribution, but little in the way of treatment. While such actions happened, and still occur, the show portrays only examples of cruel and barbaric behavior by clinicians.

One could also consider the use of straitjackets, restraints, and involuntary ECT as offensive and insensitive. These things are typically used to elicit fear in viewers, especially when the characters are wrongly subject to them.

So, is the show stigmatizing? On the whole, it seems so over-the-top that viewers, even in the mental health community, might have trouble taking it seriously. Furthermore, from a consumer standpoint, the patients appear to be the least troubled occupants of the facility. However, the imagery and scenes might be traumatic to anyone who has ever been abused, neglected by the mental health system. For clips of the episode visit the FX channel’s website.  Perhaps the only ones offended might be clinicians, although even their portrayals are exaggerated almost beyond belief.

In short, American Horror Story has an intentionally improbable plot on many levels. While it can strike a nerve with anyone who has been hospitalized or knows someone who has, especially in past decades, it is almost a spoof of life 50 years ago. Even so, it will be nice when psychiatry, even with all its faults, is no longer used as a symbol for all that is wrong in society.

Viewers will likely have a variety of reactions to this show. Some may not be bothered at all, yet others may be greatly offended. If you watch the show, or parts of it from the link above, let us know what you think by leaving a comment below.

Friday, October 19, 2012

Making a Difference with Just a Phone Call

By Helen Singer

This spring, after several of my close friends and family reached out to share the news that Mike Wallace, the legendary investigative journalist and “60 Minutes” anchor, had died, I sat down and had a good cry as if I had lost a favorite uncle. I know that it probably sounds strange that I was so personally affected by the passing of a famous newsman whose life was seemingly very different and removed from mine, but the fact is that Mike Wallace played a significant role in life and my decision to pursue a career in public health.

Let me try to explain. In remembering Mr. Wallace, his colleagues at CBS News illustrated his reputation as a fierce interrogator noting that among the most dreaded phrases one might ever hear was, “Mike Wallace is here to see you.” Well, for me, that actually couldn’t be further from the truth.

In 1996, after purposefully stopping the medication that I knew had helped me, I was in the middle of my third—and thankfully last—major struggle with severe and debilitating depression. I had gone to spend the day at my parents’ house where I could basically hide out and not have to keep up the fa├žade of being “OK.” From my cocoon of misery on the sofa, I heard the phone ring, mom answered, said something typically Southern to the caller like, “Well bless your heart!” and then, “Helen, Mike Wallace is on the phone for you.” Those words turned out to be a lifeline and one of the best gifts I have ever been given.

It seems that my mother had seen Mr. Wallace speaking out about his recovery from depression on Larry King and had written a letter to him describing my struggle. Though I would never have imagined it when I was younger watching with my dad as Mr. Wallace went “toe-to-toe” with powerful world leaders, business tycoons and cultural icons on Sunday night television; Mike Wallace and I had a very real connection. We had both experienced the desolation and sheer terror of living with major depression. The connection was strong enough to move Mr. Wallace to pick up his phone in Manhattan and reach out to this young woman in Commerce, Ga. whom he had never met.

I will never forget that when I answered he said, “Helen, this is Mike Wallace. Your mother wrote and told me what you are going through. I have been there myself, and it is hell. Now, why won’t you take your medication?” I said that I hated the idea that I was “damaged goods” who had to take medicine every day just to be “normal.” He acknowledged his own deep sense of shame and helpless ness in the throws depression and went on to explain that he had always been someone who refused to even take an aspirin for a headache, but that he would be taking his antidepressant every day for the rest of his life and be grateful that the treatment existed. Comparing notes on shame and helplessness with Mike Wallace was an almost surreal experience on one hand. On the other hand, it was a very human and comforting connection that really did change my life.

Trying to explain the anguish of depression to someone who has not lived it themselves is almost impossible. Though the exact nature and quality of the pain is unique for everyone, as a survivor, when you meet or talk with another person who has been through depression with a capital “D,” you both know immediately that the other person understands your harrowing journey firsthand.

By the time Mr. Wallace and I spoke on the phone that day, I had already survived two bouts of severe depression. Honestly, I guess I had really known things were not ‘OK” since I was 8 or 9 years old but it wasn’t until I was off at college attempting to fumble my way into adulthood with the rest of the first year students at the University of Virginia that depression hit with its full force. Without the benefit of a familiar routine and established support system, I couldn’t escape the irrational yet overwhelming worries, sadness, guilt and sense of worthlessness. I knew I needed help—serious help—and told my parents over winter break that I couldn’t return to school. “Bottoming out” like that at a time when most of my friends and peers were enjoying new found freedoms and blossoming into their own was excruciatingly painful.

As painful as it was, I can honestly say that when I look back on my experience with depression, the overriding feeling that I have is gratitude. I was truly one of the very lucky ones. I know very well that things could have turned out quite differently, even tragically, for me without the support and connections that I had. I felt safe enough with my family to let them know that I needed help, they had the resources to access competent treatment and I was surrounded by people who were willing to reach out and let me know they cared, even if they didn’t really understand what was going on with me. This is a rare combination, and a case of sheer good fortune and circumstances that I will never take for granted.

Even so, it was still a rough slow climb up out of the abyss. Through therapy and medication, I got well and got on with my life. But the shame of having a mental illness and needing medication dogged me and caused me at points in my life, as I mentioned earlier, to stop taking my medication. Each time I did this, I slowly slid right back down into a severe depression. It was during the last of those crashes that my mother had written to Mike Wallace.

While medication and therapy had helped me get well during each of these episodes, it was the phone call from Mike Wallace that finally put me on the road to true recovery and healing. For that I will be forever grateful. After talking with him, I began to see myself through a new lens. Rather than a weakly failure, I gradually developed a real sense of self-respect as a survivor, a fighter, waging a life and death struggle with something powerful enough to move someone like Mike Wallace, who was willing to discard any reservations he might have had about tarnishing his professional image, and who reached out to share his own pain. He shared it not only with me personally, but with the world, through many interviews and public appearances to support access to mental health treatment, research, and to provide others with encouragement and hope for recovery. After talking with him, not only did I start taking my medication again, I started to make a real effort to acknowledge the gifts and strengths that I had been given and to recognize and share my own story without shame when I thought it might be helpful to someone.

That gets me back to why I chose public health. There is so much pain in the world; there is pain from disease, violence, social inequalities and injustices, and there are no quick fixes or easy answers. Though enormous to me at the time, I realize that my pain was just an infinitesimally small piece of that larger pain. Each and everyone of us wants safety, security and contentment for ourselves and for those we love, but these things are not a given for anyone…no matter what neighborhood you live in, what school you go to or even what good works you do. We all have to work hard and continuously to create and maintain the conditions that make hope and security, even in the face of adversity, a real possibility for everyone.

I chose a career in public health because it allows me the opportunity to do some of that work. There is strong research that shows that building connectedness at the individual, family, community and societal level and encouraging safe, secure, nurturing relationships is protective against violence, suicide and child maltreatment particularly.

The types of connections and relationships that are most important include things like regular social contact, strong family attachments, involvement in community activities, access to services, and communication among helping organizations (Centers for Disease Control and Prevention, 2012). On an individual level, it is exactly these types of connections and relationships that led to that phone call from Mike Wallace that gave me back my life. (He actually called me back about six months later to check on me and see how I was doing—amazing!)

Public health, in all its various forms, is not easy work – attempting to understand patterns of disease and behavior, identifying risk and protective factors, developing and testing prevention programs as well as building bridges between the research and practice worlds can be daunting and, frankly, sometimes feels esoteric and quite removed from the impact that we are all so eager to see. However, it is my lived experience that there is real power in the connections we are trying to develop. If we can encourage and sustain these connections at the population level, I believe we really do have chance to prevent suffering.

This essay is an expanded version of a blog post that appeared September 25, 2012 at: http://blogs.cdc.gov/ncipc/2012/09/25/helping-cope-depression-helensinger/

Thursday, October 18, 2012

Why I Vote for Mental Health Care (and More)

By Logan Stewart

This is my first presidential election and I’m very excited to have a say about who is going to lead our country.

I’m 21 years old, just graduated from college with a degree in psychology and I have been diagnosed with several mental illnesses, most recently bipolar disorder. As a teen you feel like you don’t have a choice because parents and teachers decide everything for you. Finally, I get a chance help decide who is going to run the country. It’s also not just about who will run the country, but also what happens worldwide because the U.S. president has such a big influence internationally.

When I was a child my parents made a point of taking me to the polls every election. I registered as a voter on my 18th birthday. I just filled out the application at school and popped it in the mail. It’s really easy—you can even fill it out on line, print and mail.

When I went to vote for the first time, a few months after I turned 18, it was exhilarating to have a say. I was surprised that the line went so quickly, about 15 minutes and casting a ballot took maybe two minutes. I just pushed the buttons for the candidates I wanted to vote for and I was done. And the people at the polling place all clapped because I was a first time voter. I felt so proud.

It’s really easy to find out which candidates align most with your views. There are websites all over the internet where you can research each candidate.

On the League of Women Voters or Project Vote Smart websites, all you need to do is put in your ZIP code and read candidate platforms. You can also read articles and blogs from their supporters and critics. If you want to find out what to say or questions to ask about mental health issues go to NAMI’s “Mental Health Care Gets My Vote” website.

The youth vote was influential in the 2008 election and also will have an impact in 2012. Candidates who are elected in 2012 will have a say on issues young people are concerned with, like gay rights, education, abortion and health services.

The 2012 election is important for young voters who care about mental health because we are still in a recession and services need funding. Many people don’t realize how greatly mental health services affect the well-being of our entire nation. If we can help people with mental illness through peer support groups, hospitalization, medication and community services, not only do we help individuals, but then they can go back to work and the whole community is stronger. When you are in your early 20s—in college or not—it can be a stressful time for people with emerging mental illness. We need service to stay in school and go on to be part of running the country.

Health care reform affects young voters because the Affordable Care Act currently allows people age 26 and under to stay on their parents’ health insurance. If that were repealed, young Americans will have to find their own health care, which is becoming more and more expensive. Without insurance young people with mental illness would not be able to find a doctor or pay for medication. There would be more hospitalizations the person could not pay for, which would also be a drain on the economy.

Casting an informed vote is really simple, especially with the internet and the technology we have now. It’s not hard to reach the candidates. By writing to them you are helping influence and create a country that is run the way the people want it to be.

Tuesday, October 16, 2012

Living Well with ADHD

By Darcy Gruttadaro, NAMI Director of the Child and Adolescent Action Center

ADHD Awareness Week, Oct. 14-20, is a time to take stock of what we know about attention-deficit hyperactivity disorder (ADHD). It is one of the most common mental health conditions in children. Although it is often thought of as primarily existing in children, much has been learned about its impact on teens and adults.

NAMI invites you to visit the new resources prepared especially for ADHD Awareness Week as part of our ADHD Resource Center, including tips on how to live well, chats with experts, personal stories from parents and podcasts.

About nine percent of children and four percent of adults live with ADHD. It impacts school performance, work and relationships. Most of us from time to time experience distraction, may act impulsively and may struggle to pay attention. But that does not necessarily qualify for ADHD. It is when one or more of these symptoms significantly impact and disrupt school, work and/or relationships that ADHD should be considered.

More than half of all individuals with ADHD also have co-occurring conditions like anxiety, depression and substance use disorders.

If you suspect that you or your child may have ADHD, here is what you can do:

  1. Talk with your primary care physician about your concerns. Write them down before the appointment so that you are prepared to address each one. Arrive at the appointment ready to discuss what is happening in school, at work and/or in relationships that concerns you have.
  2. Ask for a comprehensive assessment to determine whether you or your child may have ADHD. This is important to help rule out other psychological or medical conditions that may be causing the symptoms and to help ensure an accurate diagnosis.
  3. If you or your child is diagnosed with ADHD, be prepared to be an active partner in developing and adhering to the treatment plan. Ask questions. No question is off limits when it comes to understanding treatment options. Your primary care physician may treat ADHD in his or her office or may refer you to a mental health specialist.

ADHD is most often treated with some combination of behavior therapy and medication. There is no one size fits all when it comes to treating ADHD. This is especially true when it co-occurs with other mental health conditions. It is important to find the right combination of treatments that work best for you or your child. 

Learning about ADHD is extremely important. Fortunately, there are plenty of helpful resources available from NAMI’s ADHD Resource Center for both children and adults. Visit the new section and listen to the podcast on ADHD Coaching, a growing field of professionals working to support and motivate youth and adults living with ADHD to improve school and work performance and other aspects of life.

Check out the newly posted personal stories of parents sharing tips on supporting your child and living well as an adult with ADHD. And don’t miss the podcasts on ADHD and Back to School. The key to living well with ADHD is to find the services and supports that best address your unique needs. Exercise and healthy diet help to enhance your overall health and are a wonderful compliment to ADHD treatment.

Many children and adults living with ADHD develop effective coping strategies that help reduce symptoms and increase overall quality of life.

ADHD Awareness Week is the perfect time to recognize that we have come a long way and there is much support out there for all of those impacted by ADHD.

Friday, October 12, 2012

Halloween Protests: Haunted Asylums and Mental Illness

By Bob Carolla, NAMI Director of Media Relations

Halloween will soon be here!

Unfortunately, “Halloween Horrors” have already arrived.

They involve “haunted asylum” attractions with depictions of residents as violent monsters. In other cases, stores sell “mental patient” costumes with straitjackets. They perpetuate stigmatizing, offensive stereotypes of people living with mental illness.

Don’t get me wrong, NAMI loves Halloween as much as anyone else. But would anyone sponsor an attraction based on a cancer ward? Take middle school kids on a field trip to see one? Promote one based on offensive racial or ethnic stereotypes?

The U.S. Surgeon General has identified stigma as a major barrier to people in reaching out for mental health care when they need it. People struggling with mental illness also often internalize it, impeding recovery.

In 2010, NAMI Ohio led a protest of a major amusement park's special Halloween attraction “Dr. D. Mented's Asylum for the Criminally Insane.” It provided an important “teaching moment” in the news media and dialogue with the park, which to its credit, ultimately agreed to change the name and theme of the attraction for future years.

Here are just a few targets for protest this year. Contact information is included if you wish to lend your voice (Don’t forget to also post a comment on their Facebook pages!) See also the tactics outlined below.

  • In Lancaster, Pa., “Field of Screams” includes a Frightmare Asylum that features an “axe murderer,” a padded room and a “chainsaw-wielding lunatic.” .Send comments via this page and/or cream@fieldofscreams.com
  • In Provo, Utah, the Anguish Asylum Haunted House asks “how much fear would it take to drive you to insanity?” Ironically (or bizarrely), the operators thank 4 the Youth, which provides therapy to at-risk youth and families,” for their support and friendship.” Contact anguishasylum@comcast.net.
  • BuyCostumes.com features “Goin’ Out of My Mind,” “Straightjacket” and “Cell Block Psycho” adult costumes. The company claims to be the “#1 online costume retailer worldwide for kids and adults and also has its costumes carried in big-box retail stores. Its corporate headquarters Buyseasons, Inc. is located outside Milwaukee. Please contact it through its service page and/or Kristen Crump, Manager, Public & Community Relations at kristenc@buyseasons.com and Karen Van Ert, Director of Marketing at karen@buyseasons.com.

So What Can You Do?

Is there a “Halloween Horror” in your own community? Do you want to speak out? Here are some tactics to consider:

  • Contact sponsors, companies or store managers personally. Start a polite dialogue. Educate them. Ask them to remove offensive parts of any attraction, advertisements or merchandise that mock mental illness. Don’t underestimate the power of one person to make a difference.
  • Alert other NAMI members, family and friends to phone, send letters or e-mail the sponsors or stores. Check the websites of the sponsoring company or attraction. Most have connections to Facebook. Post comments and put them on your news feed to friends. Ask them to do the same.
  • Contact local newspaper editors and television news directors. Educate them about stigma and your concerns. If they have run promotional stories about a “Haunted Attraction” ask them to run a story about the protest. (Fair is fair). Make the protest both a "news event" and a "teaching moment." Offer local individual or family members who have been affected by mental illness for personal interviews
  • Organize local leaders in the mental health community. Request a private meeting with the sponsors of an attraction or store owner to start a dialogue about how to resolve the controversy and to work together in the future. Be flexible. In some cases a company or sponsor can’t make changes immediately but will agree to do so in the future. In some cases, they have become ongoing partners and supporters.
  • Local civic organizations, high schools or similar community groups may be the sponsor of an offensive attraction. Keep in mind that they often have no awareness of stigma and did not intend to offend. They often have a strong desire to resolve controversy. Be neighborly and in finding solutions.
  • A portion (or all) of ticket sales to haunted asylum attractions sometimes are donated to worthy non-profit causes in the community. Privately approach local leaders of those organizations and ask them to join in communicating concerns with the sponsors of the attraction. Publicly suggest that people in the community donate to the cause directly, rather than buy a ticket, if they agree with your concerns.
  • Be prepared for some backlash. Many people in the community may say “It’s only Halloween” or even something nasty (particularly on Facebook). Take the high road. Stay polite and respectful in the public dialogue. Even if it seems that too many people disagree with your position, you win simply by raising awareness.

Friday, October 5, 2012

Megan's Story

By Deanna L. Adams

The children sat quietly in their first grade classroom completing a Thanksgiving coloring project. Most of the students at age 6 needed to improve their fine motor coordination, so sometimes coloring within the lines represented a challenge. When the brown crayon Megan used to color her turkey rolled over the line, she believed that her turkey was ruined. A disaster ensued.

Megan uncontrollably leaped out of her seat and grabbed the box of crayons that lay on her desk. In anger, she screamed and threw the crayons one by one into the classroom wall with great force. Since incidents like this had previously occurred, the teacher, Mrs. Hill, was prepared. She used the school contact system and summoned the security guard.

Within minutes, Megan was removed from the classroom and made to sit outside the principal’s office, as she had done many times before. Here she remained for the next 90 minutes until the principal believed that she was calm enough to return to class.

As the months of the school year progressed, Megan became known as “the bad one” by both the teaching staff and the other first grade parents. With this reputation, she was excluded from birthday parties and play dates. When she became upset at a Brownie troop meeting and stomped on a cupcake that she had dropped, the troop leader contacted Megan’s parents and advised them that Megan was no longer welcome to be a member of the troop.

Megan’s parents, Sandra and Daniel, became deeply concerned about Megan’s behavior and outbursts both at school and at home. Hyperactive and distractible, her tantrums frequently dominated her days. She seemed unable to focus or complete tasks assigned to her. In addition, she had trouble sleeping and kept them awake night after night. It was time to seek help.

The evaluations seemed endless. They began with the psychologist and pediatrician. They continued with neurologists and specialists in the field of cognitive and executive functioning. Megan was questioned extensively to determine if she had been sexually abused, and given an MRI of the brain to detect abnormalities. She was also interviewed and tested by the special education team in her school.

Time passed. No diagnosis, only ideas. And Megan’s life deteriorated as she isolated herself more and more from the pressures of her stressful world. Fearful of people and life outside the home, sadness and depression now dominated her thoughts.

Sandra and Daniel had one more idea. Desperate, they made an appointment with a renowned child psychiatrist. Dr. Evelyn Smith led Megan to her private office and began with a series of questions.

“Megan, do you ever hear anyone talking to you even though you cannot see them?”       

Megan was completely surprised but seemed relieved to hear this question. A smile appeared upon her face. “Yes, I do,” she replied. “How did you know?”   

“Is it just one person that you hear, or more than one?”

“It’s always the same one.”

“Does this person have a name?”

“His name is Jason but I call him J.”

“Does J ever ask you to do anything that you do not want to do?”

Tears came into Megan’s eyes and began to stream down her cheeks. “Yes, sometimes he tells me to hurt my Mommy and once he told me to kill my cat. But I love Mommy and my pet cat and I didn’t want to do it.” She folded her arms and buried her head in her lap.

“When do you hear J speaking?”

“All different times. I hear him in school a lot when the teacher is talking. I hear him in bed at night and I get afraid and can’t sleep because he scares me. Mostly I hear just J but sometimes I hear loud noises in my ears and I can’t get them to stop.”

Dr. Smith completed her interview, and Sandra and Daniel had a diagnosis for their child at last: early onset schizoaffective disorder, most likely caused by an imbalance of chemicals in the brain. Megan had been experiencing a series of psychotic episodes. No one, including Megan, had understood what was happening to her. She did not know how to distinguish reality from the character that existed only in her mind.

Megan had been experiencing the symptoms of an illness, but society had blamed her for its ravaging effects. Now Megan’s family needed to seek answers and learn how to provide for her special needs. This would be the only path to Megan’s chance at a normal life. First, Megan needed to be stabilized on medication. The second step was to work with the special education team in Megan’s school district to provide a safe and successful school environment with small classes and an appropriate IEP.

The new medication successfully stabilized Megan’s moods, but it failed to address the issues of psychosis, and soon Megan began to have further experiences with imaginary beings. Her parents recall the day when they heard Megan’s screams coming from the bathroom.

“Mommy! Daddy! Help me! I see them now. Come and look! The vampires are in the toilet bowl!” Her parents followed her into the bathroom to investigate, but saw nothing. Sandra picked up her daughter and hugged her.

“It’s OK, Megan. There is really nothing there that will hurt you. The next time you need to use the restroom, come and get me, and I will be there with you always, to keep you safe from harm.”

Dr. Smith responded to the situation by prescribing an antipsychotic. It is sometimes a risk when prescribing such medications to young children, as each individual reacts differently. Megan was one of those rare cases that had a life-threatening reaction to the drug. Within a few days after the initial dose, the muscles in Megan’s body tightened, leaving her unable to move or breathe. After 12 hours of unconsciousness in the emergency room, she survived.

Megan’s journey through her illness did not end there. It was only the beginning. Trial and error of other medications ensued. When she was still not stabilized by the beginning of second grade, Dr. Smith recommended it would be best for Megan to be removed from the traditional school system, and home schooled during her second grade year. With tutoring and family support, Megan successfully completed the state mandated core curriculum of second grade, using her dining room as the learning center.

More challenges lay ahead. With Megan’s wavering moods still out of control, as a last resort her parents placed her into a residential hospital for children. A team of doctors and psychiatrists monitored her behaviors and reactions to various medications. Sandra and Daniel longed for their child, and silence reigned through every hour and day that passed without their precious daughter.

Six months later Megan returned home. When she did, a miracle happened. She had changed. Now she laughed and played and enjoyed the people around her. She was filled with love and hugs and the joys of living. She made friends and for the first time, had a chance to succeed. Megan was now ready to return to school.

Sandra and Daniel had one more challenge in Megan’s recovery. They wanted Megan’s new school experience to be a positive one, so they petitioned Megan’s school district to pay for placement in a private school to address her special needs. Worried about funding, the school district refused. A year long court battle followed, as Megan’s parents learned how to navigate the legal system and fight for their child’s rights to an appropriate education. Finally, Megan was placed in the school where she belongs.

Today Megan is 13 years old. This past June, she graduated from middle school and surprised her family when she was chosen to be the valedictorian of her seventh grade class. She proudly spoke from the stage, thanking her parents for their love, and her special teachers for their support and dedication. After her speech, the principal presented Megan with the President’s Education Award for her outstanding academic achievement.

Megan’s story has touched the lives of all who know her. Family and friends who shared her journey have become enlightened about the stigma of mental illness in our society. They have learned that those living with mental illness can thrive and prosper with appropriate interventions and the ongoing medical research that is available today.

There is hope.

I am Megan’s grandmother.

Tuesday, October 2, 2012

Building Awareness: Mental Illness’ Special Week

By Michael J. Fitzpatrick NAMI Executive Director

Mental Illness Awareness Week is Oct. 7-13.

This year’s theme is “Changing Attitudes, Changing Minds.”

Every year, a truly grassroots mobilization occurs.

What are you doing to observe it?

In 1990, Congress proclaimed MIAW as a means of increasing public understanding of mental illness, promoting treatment and helping to eliminate the stigma imposed on it.

There are many other “awareness” months, weeks and days throughout the year for many causes. For the most part, national news media don’t pay attention to them, but local media do, because local events demonstrate direct community interest.

Each year, NAMI Affiliates sponsor diverse activities in local communities: candlelight vigils, speakers in schools, film series, donations of books to libraries or special prayer readings in churches and synagogues. Some submit op-ed articles to local newspapers or are interviewed on local television news as part of stories about treatment and recovery.

Let’s also not forget National Depression Screening Day on Oct. 11, which NAMI has long supported.

Because MIAW this year coincides with the election season, some Affiliates are including the non-partisan Mental Health Care Gets My Vote in their plans.

This year, NAMI also has launched a television campaign of public service announcements (PSAs) featuring images of Abraham Lincoln, Winston Churchill and Mahatma Gandhi, great leaders who each struggled with mental illness.

Many NAMIWalks take place on weekends throughout the fall, providing a long reach for MIAW. There are 42 NAMI walks this fall alone.

Other NAMIWalks took place in the spring around Mental Health Awareness Month. They are just as important, but some people do wonder about the distinction between MIAW and Mental Health Month.

According to the U.S. Surgeon General, “mental health” and “mental illness” are points of reference on the same “continuum.” Mental health is not always easy to define: “wellness” is one definition, but mental health increasingly has been applied to include concerns over mental illness. Mental illness refers to diagnosable brain disorders characterized by changes in mood, thinking and behavior.

“Mental health problems” may be less intense, but can lead to mental illness. One in four American adults experiences mental health problems in any given year. One in 17 lives with more severe conditions. MIAW focuses on the more severe point on the continuum where neglect and stigma often has been greatest—along with the need for public education. That’s why NAMI traditionally observes MIAW, as well as other opportunities to build awareness.

So how can you participate?

  • Attend a local NAMI event, like a NAMIWalk or speakers program
  • Ask a local television station to run NAMI’s new PSA
  • Speak up in your place of worship to offer a prayer for helping all individuals and families affected by mental illness
  • Write a letter to the editor of a local newspaper outlining mental health issues that are important in the elections—regardless of party
  • Contact your local NAMI Affiliate to ask how you can help year-round
  • Consider making a donation to support NAMI’s work

Let’s all work together to change attitudes and change lives.