Winter 2014
Exploring Mental Illness on the Big Screen Halle Berry Portrays DID with Compassion and Perseverance
Inside: The Journey of Recovery • Service Dogs and Vets • Parity Update
NAMI ELECTION 2014 NAMI Board Nominations, Bylaws, Amendments and Resolutions Sought for 2014
Board Nominations: Nominations are being accepted for candidates for election to the NAMI national board of directors at this year’s national convention. Five (5) candidates will be elected to serve for the standard three-year term. Nominees must be NAMI members and members of the NAMI Affiliate or NAMI State Organization making the nomination. Nominations may be made only by NAMI Affiliates and NAMI State Organizations that have submitted their memberships and paid their dues by the nomination deadline. Each NAMI Affiliate and NAMI State Organization may nominate no more than one candidate. Nominations must be received by NAMI no later than June 7, 2014 (90 days prior to the NAMI National Convention), and addressed to: NAMI Elections 2014 Attn: Lynn Borton 3803 North Fairfax Drive, Suite 100 Arlington, VA 22203 A nomination form is available at www.nami.org/voting. The form must be accompanied by a nomination letter made on the letterhead of the nominating NAMI Affiliate or NAMI State Organization, including evidence of authorization by the board of the NAMI Affiliate or NAMI State Organization to make the nomination and signed by the chief officer of the NAMI Affiliate or NAMI State Organization. (If the chief officer is the nominee, then another proper officer must sign.) Nominations via email may be submitted to voting@nami.org along with a PDF of the nomination letter and form, which must be electronically signed. Bylaws Amendment Proposals and Resolutions. For consideration at the 2014 NAMI National Convention, proposed amendments to the NAMI bylaws and proposed resolutions must be sent to the NAMI office at the above address by return-receipt mail and received by NAMI no later than June 7, 2014. Proposed amendments to the NAMI Bylaws must be submitted in amendment form. Visit www.nami.org/voting for complete election information. After June 22, 2014, this site will also include: • Candidate information (personal statement, letter of nomination and answers to questions of importance to NAMI). • Bylaws proposals. • Proposed resolutions. Questions about the election process may be directed to voting@nami.org.
To ensure compliance with NAMI’s bylaws, 75 percent of the NAMI National Board of Directors must be “persons who have or have had mental illness, or parents or other relatives thereof.” Candidates will be asked to make a statement to this effect. No more than five (5) members who do not have a lived experience with mental illness themselves or as a relative may serve on the NAMI National Board of Directors at any time. All current NAMI board members identify as having lived experience as described above.
Contents
Winter 2014 | Vol. 12, No. 1 www.nami.org/advocate
National Alliance on Mental Illness • Find Help, Find Hope
in this issue...
The NAMI Advocate is published by NAMI, the National Alliance on Mental Illness. 3803 N. Fairfax Drive, Suite 100 Arlington, VA 22203-1701 Ph: (703) 524-7600 Mary Giliberti, executive director Ken Duckworth, M.D., medical director Katrina Gay, national communications director Bob Carolla, media relations director Courtney Reyers, publishing director Brendan McLean, communications manager Kathleen Vogtle, communications coordinator Susie McKinley, graphic designer Blackline Editorial, additional copyediting NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. NAMI advocates for access to services, treatment, supports and research and is steadfast in its commitment to raising awareness and building a community of hope for all of those in need. Members of NAMI are families, friends and people living with mental illness such as major depression, schizophrenia, bipolar disorder, obsessivecompulsive disorder, panic disorder, posttraumatic stress disorder and borderline personality disorder.
www.nami.org NAMI HelpLine: 1 (800) 950-6264 Follow us on Twitter: @NAMICommunicate Find us on Facebook: www.facebook.com/NAMIofficial Submission guidelines: www.nami.org/advocate/submissions Editorial Note: Information provided in this publication is for informational purposes only and is not intended as medical advice. NAMI does not endorse any advertisements or advertising companies in this publication. Individuals and their family members should always consult their own treatment providers about decisions concerning treatment and medications. Some stock photos in this publication are being used for illustrative purposes only, and any person depicted in stock images is a model. © 2014 by National Alliance on Mental Illness. All rights reserved.
6
Final Parity Rule Requires Equal Coverage of Mental Illness in Insurance
7 8
Schizophrenia
11
16
New Report Highlights Need for Global Action
Science Meets the Human Experience Integrating the Medical and Recovery Models
Drumming Up Research on the Human Brain
Mickey Hart, Dr. Adam Gazzaley and the Healing Power of Rhythm
12
Service Dogs Help Veterans Still Battling the Effects of War
13 14
Peer Support
An Integral Element of Recovery
Lack of Research Means Less Effective Treatment for Minorities
Halle Berry as Frankie in Frankie & Alice. Cover and feature photos by Sergei Bachlakov.
16 19 20
Mental Illness on the Big Screen
Halle Berry Plays a Woman with DID in the Upcoming Film Frankie & Alice
Early Intervention
More Complete and Lasting Mental Health Recovery
Different Strokes: Whole Health, CAM and Lifestyle
When It Comes to Recovery, Many Approaches Can Help
DEP AR T M E N T S 2 3 4
From the Executive Director NAMI President's Letter
22 26
You Are Not Alone Book Film Art
NAMI News Winter 2014 | NAMI ADVOCATE | 1
FROM THE EXECUTIVE DIRECTOR
Changing of the Guard
I
am thrilled to be NAMI’s new executive director. For me, it is a homecoming, having served as director of policy and advocacy from 2006 to 2008.
Like you, I am committed to NAMI’s mission: helping to improve the lives of individuals and families living with mental illness through education, Mary Giliberti support and advocacy. I also consider NAMI’s leaders and members to be our greatest resource. We have an unrivaled grassroots network of volunteers in communities throughout the nation who touch the lives of many people and make a difference every day. As NAMI observes its 35th anniversary in 2014, we stand at a unique moment in time. The country seems to be waking up to the need to provide treatment and supports to people living with mental illness. The president, vice president and governors have been talking about our issues, as have members of state legislatures and, in some cases, Congress. At the same time, the health care system is rapidly changing, involving greater integration, accountability and use of technology. NAMI needs to be at the forefront to ensure that these changes remain opportunities, rather than broken promises. We need to be the champions of new ideas for engagement, education and supports that improve both treatment and life outcomes. When it comes to mental health care, “more of the same” is not enough. NAMI must embrace and advance a bold vision for the sake of our loved ones, ourselves and the millions of other Americans living with mental illness. Each of us brings a personal story that fuels our passion and dedication to NAMI’s mission. In my case, years ago, I lost one of my college roommates to major depression and suicide. While in law school, I also worked in a disability law clinic where I represented adults and children living with mental illness. I quickly saw that they were not given the same respect as others because of the nature of their illnesses, and both the legal and health care systems did not adequately respond to their needs.
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In my previous work with NAMI, two memories in particular stand out. In 2006, I visited the emergency room in an area that had been decimated by Hurricane Katrina. We saw a person in restraints waiting for a hospital bed and a log book with entry after entry of people experiencing mental distress with long wait times to get help. Police had taken over in responding to emergencies, but they could not keep up with the demand. One police officer described how the hospital staff had rushed out onto the hospital ramp—not to help a person with mental illness who was being brought in, but to wave her away. The person had asked the officer why she was not wanted. The other memory I have is working with a NAMI Smarts advocacy class in Maryland. One of our members wanted to be able to tell the story of her mental illness to legislators in the few short minutes we always recommend—but as is often the case, it was a struggle to do it. We sat down together and talked about what she wanted to say and worked on her statement. She was finally able to tell a compelling, succinct story about her journey to recovery. I cheered. She looked at me first with disbelief, followed by a huge smile. NAMI does not tell people that they are not wanted. We do not turn them away. We stand up for individuals. We stand up for families. We stand for helping people who need help. Most of all, we stand for hope. Thank you for your support of NAMI in the past. I look forward to working for and with you in the future.
Mary Giliberti, J.D. NAMI Executive Director
NAMI PRESIDENT’S LETTER
President’s Letter
D
id you know that in the field of business and organizational psychology, we talk about the recovery of organizations? The concept—taken from the health world and applied to the everyday— focuses on organizational “health” based on a number of criteria. Organizational recovery is seen as a transformation from low-performing Keris Jän Myrick to high-performing. In the field of mental health, many of us are stakeholders or advocates for system transformation, which generally refers to our public mental health system changing to provide better services with improved outcomes, thus moving from low-performing to high-performing. If organizations are underperforming, change interventions are used to help them become high-performing. Clearly, we have seen how hard and long the transformation process is for systems like mental health care. Organizations— much like people—can be resistant to change and stuck in denial, refusing to acknowledge that they are in distress. One would think that, given my profession and that I am a person living with mental illness, writing about recovery would be easy. Unfortunately, it is not. For weeks, I have been confounded by the difficulty of writing about recovery because our nation, advocates, members and organizations are at odds about what recovery is. I am confounded that something that seems so elementary has become so complex and contentious. I am confounded because something that should be expected, desired and supported often times is not. I am confounded because we fight over who can recover and who cannot, we disagree over the point at which a person can be considered recovered, and we set recovery up to be something that is unattainable for many (“recovery is for people who are highfunctioning”) rather than continuous (“recovery is a process that starts from diagnosis and is ongoing”).
I think I can understand why we are in this conundrum. I can understand and have experienced the fear of change, the dashed hopes when things are going well only to see them take a turn for the worse, and the belief that recovery can’t possibly be achieved. I have received calls from people who are looking for a loved one who disappeared at the most serious point of his or her illness, people who are calling for support, understanding and action. Talking about recovery is indeed difficult at a time like that. Our fear that detrimental events will happen again and again results in a fear to talk about, and even possibly believe in, recovery. Perhaps I am not confounded after all, but sad in that moment of realization that recovery is difficult, recovery is not linear and recovery is hard. But recovery is not impossible! How can we move past our fears and embrace recovery? How can we build resiliency so that those twists and turns encountered along the road to recovery are more tolerable? How can we embrace recovery as an expectation that starts the moment we are at our worst so that we can have access to and experience moments that are better? Recovery and resilience are not things that should be withheld from people who are seriously ill, but rather demanded from our providers, policymakers, agencies and ourselves. Anything less relegates people living with mental illness and their loved ones to second-class status. We can all agree that being treated differently and as less-than-acceptable is unconscionable. I hope that at NAMI and in our lives, we can open ourselves up to the importance of recovery for all. As Audrey Hepburn once said, “Nothing is impossible; the word itself says, ‘I’m possible!’”
Keris Jän Myrick President, NAMI Board of Directors
Winter 2014 | NAMI ADVOCATE | 3
N A M I
N E W S
Spring NAMIWalks: Get In on the Action
Participants in last year’s NAMI Los Angeles County’s NAMIWalk pose before the start.
A Fantastic Tool for Raising Awareness in Young Adults Raising mental health awareness on college campuses just got a whole lot easier. NAMI has created a toolkit that includes everything needed to raise mental health awareness on campuses, educate the college community and help combat stigma. This is important, because one in four young adults lives with a mental health condition, yet many college students know little about mental illness. Here’s what’s in the toolkit: • A dynamic presentation on raising mental health awareness. • A step-by-step guide on how to deliver a successful presentation. • Four fact sheets to complement the presentation and to reinforce key issues. • Eye-catching promotional flyers to spread the word on campus and in the community and more. The toolkit is for anyone interested in presenting mental health information to college students. It is currently available on a free USB flash drive while supplies last. To request a flash drive or to learn more, please contact namioncampus@nami.org. You can also access the toolkit online and learn more about NAMI’s growing work on college campuses by visiting www.nami.org/namioncampus.
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NAMIWalks celebrates its 12th anniversary in 2014. The program began with 12 events in 12 states; now NAMIWalks has 84 walks in 44 states. Since its inception, NAMIWalks has raised $78 million, which benefits programs throughout the country. Funds raised through each NAMIWalk stay in the local community. NAMIWalks is a celebratory way for people to show their support of individuals living with mental illness. Participants enjoy a festive-like environment while walking on a scenic path with family and friends. Registration for spring NAMIWalks is underway. Sign up at www.namiwalks.org.
NAMI Launches Signature Program for Families of Military Service Members and Vets NAMI has launched a new education program called NAMI Homefront, a six-session adaptation of the evidence-based NAMI Family-to-Family program. This free program will focus on the unique needs of families of military service members and veterans who are living with mental illness and often face post-deployment or post-discharge challenges. In early 2014, NAMI will begin to implement this new program in six states. The free course is comprised of six peer-led sessions of instruction. Trained teachers in the program have family members who themselves are service members or veterans who live with mental illness. The program will be held at VA facilities in Maryland, Ohio, New York, North Carolina, South Carolina and Illinois. Future plans include a free online option. For more information, visit nami.org/homefront.
N A M I
State Legislation Report:
N E W S
New NAMI Program for High School Students:
A Deeper Look at Mental Health Care
Ending the Silence
In October 2013, NAMI released its State Legislation Report 2013: Trends, Themes and Best Practices in State Mental Health Legislation. The report surveys legislation enacted by state legislatures in 2013 and summarizes trends, themes and best practices in mental health legislation that will continue to be important in 2014. Download the report at nami.org/statelegislation.
NAMI Ending the Silence (ETS) was launched in October 2013 to inform teens about the signs and symptoms of mental illness and to help combat the stigma and end the silence around mental health issues in this age group. The program sends presenters into classrooms in high schools across the country. To date, the program is active in 15 states. To learn more, become a presenter or get ETS in your school, visit www.nami.org/ets.
[From the NAMI Blog]
‘‘
rapid changes in the health
We are experiencing overall. The Affordable Care Act is one of the forces driving change, but there are others, including mental health insurance parity.
care system
NAMI needs to be at the forefront
in advancing new ideas to improve treatment and life outcomes for people living with mental illness. for “more of the same,” because more of the same is not enough. It is that anyone be allowed to fall through the cracks due to neglect or an unresponsive system of care.
We must not settle
not acceptable
— Mary Giliberti, J.D., NAMI Executive Director Read more at blog.nami.org.
‘‘
Winter 2014 | NAMI ADVOCATE | 5
Final Parity Rule Requires Equal Coverage of Mental Illness in Insurance By Ron Honberg, NAMI Director of Policy and Legal Affairs
I
n 2008, Congress passed and President George W. Bush signed into law the Paul Wellstone and Pete Domenici Mental Health Parity and Addictions Equity Act. Five years later, in the fall of 2013, the U.S. Department of Health and Human Services (HHS) issued a final rule setting forth the essential requirements of this landmark law and providing clarity for what is needed to move forward in implementing mental health parity. The Scope of the Parity Law When the law was passed in 2008, it applied to all group health insurance plans offered by employers with 50 or more employees. This was broadened significantly after passage of the Affordable Care Act (ACA), also known as Obamacare, to include individual and group health insurance policies offered through Health Insurance Marketplaces (“Exchanges”) run by individual states or for states by the federal government. The final parity rule applies to health insurance policies that begin on or after July 1, 2014. The Requirements of Federal Parity One important feature of the final rule is that it requires that financial limits imposed on coverage of mental health or addiction treatment in health insurance policies be no greater than those for coverage of medical/surgical treatment. For example, co-payments, deductibles and other out-of-pocket expenses for mental health treatment can be no higher than those for physical health treatment. Similarly, limits on the numbers of days or visits covered for psychiatric or mental health treatment must be equivalent to those covered for physical health treatment. The final rule also clearly establishes that the criteria used by insurance plans to make decisions about specific types of care and treatment must be equivalent in regards to both mental health care and physical health care. This is very important, because insurance plans 6 | NAMI ADVOCATE | Winter 2014
frequently use medical necessity or other clinical criteria to approve or deny specific types of mental health treatment. Insurance policies are frequently complicated, and the criteria used for decisions in individual cases are not always clear. The parity rule requires insurers to be forthright and transparent about the criteria they use to approve or deny mental health care. Understanding the basis upon which coverage decisions are made is fundamentally important for individuals and their families in exercising their rights under these policies, including their right to appeal denials of care. Lastly, the final rule states that parity requirements apply to intermediate levels of care in addition to inpatient and outpatient treatment. For example, if a plan covers rehabilitative services for the treatment of physical conditions, a strong argument can be made that psychiatric rehabilitation services should be covered as well. NAMI Executive Director Mary Giliberti, J.D., praised the publication of the final parity rule. “People living with mental illness and their families have been waiting for many years for this rule to be published,” Giliberti said. “With this rule, we have taken a giant step forward toward ending discrimination against mental illness in health insurance. Moving forward, strong enforcement of the new law will be critically important.” Unresolved Issues Although the 2008 Wellstone-Domenici Parity Act was clearly intended to apply to private managed care plans offered through Medicaid and the Children’s Health Insurance Program (CHIP), the final rule did not provide guidance on this topic. The Obama Administration has stated that they will issue guidance on the applicability of parity to Medicaid and CHIP in the near future. Neither the final parity rule nor the ACA directly address serious workforce shortages in the mental health field, particularly among child psychiatrists
and in rural areas. Nor do they require mental health practitioners to participate in health insurance networks. The Obama Administration recently took a positive step forward in this area by allocating $100 million for increasing the mental health workforce, splitting this money equally between building up rural mental health workforces and adding mental health professionals at Federally Qualified Health Centers (FQHCs). These significant workforce shortages must be addressed in order for the hopes engendered by parity and the ACA to come to fruition. How Can I Enforce My Rights Under the Parity Rule? Some plans subject to the parity requirements are regulated at the federal level, and others are regulated at the state level. Individual policies purchased through State Health Insurance Marketplaces are subject to regulation and oversight by State Health Insurance Departments or Commissions. You can access the relevant agency in your state through the National Association of Insurance Commissioners (NAIC) at www.naic.org by clicking on “States & Jurisdiction Map.” The Federal Center for Medicare and Medicaid Services (CMS) has secondary enforcement authority if states do not comply with carrying out their enforcement authority. If you have concerns about your plan’s compliance with parity, contact the CMS helpline at (877) 267-2323, extension 6-1565, or email phig@cms.hhs.gov. Finally, the U.S. Department of Labor has authority over enforcing parity in selfinsured plans. To find out more, call the Department of Labor’s toll-free number at (866) 444-3272, or contact a benefit advisor in one of the department’s regional offices via www.askebsa.dol.gov. A copy of NAMI’s Frequently Asked Questions on parity can be found at www.nami.org/parity/FAQ.
Schizophrenia
New Report Highlights Need for Global Action By Bob Carolla, NAMI Director of Media Relations
I
n 2013, the World Health Organization (WHO) adopted a seven-year mental health action plan that has set a target of a 20 percent increase in mental health services worldwide. As part of that vision, NAMI Medical Director Ken Duckworth and co-authors from five other countries issued a major report, Schizophrenia: Time to Commit to Policy Change. The report noted that 26 million people live with schizophrenia worldwide, and that mental illness is among the top 10 causes of disability globally. With appropriate care, 50 percent of diagnosed cases have the potential for good outcomes—but access to treatment is the caveat. The report asserts three evidence-based principles: The likelihood of a good outcome for people with schizophrenia has improved in recent decades. With appropriate management, many people affected by the condition can now achieve an acceptable quality of life. • A modern approach to schizophrenia management should aim to move individuals along a pathway toward the recovery of normal function, as well as to alleviate distressing symptoms. • Driving further change toward a more positive outlook for schizophrenia requires fundamental policy modification. NAMI recently spoke with Sigrid Steffen, former president of the European Federation of Families of People with Mental Illness (EUFAMI), about the impact that the report will have on the international mental health community, the role of caregivers and her own personal connection to mental illness. This international report outlines many ideas that can be implemented for improving care. What significance does this report have for caregivers of individuals living with mental illness? All caregivers hope for effective and good care for their family members. The report summarizes the current situation of schizophrenia, listing success factors of past developments, but also making current challenges and treatments, as well as system deficits, transparent. It acknowledges the very important role of family carers in the treatment and recovery process. Also, it takes a “health in all” policies approach, stating that health, social, educational and employment interventions have to be considered when aiming to improve the life of people living with schizophrenia and their families. It urges policymakers to take action and to assume responsibility for improving the quality of life of those affected and their families. The report emphasises the need to create a sound evidence base and to engage in research. The report reflects a need for all persons working with individuals living with schizophrenia—e.g., health care professionals in hospital and community settings, social
Sigrid Steffen, former president of EUFAMI work professionals, and families and advocacy groups—to work more closely and consistently. Why is integrated care important? We have all experienced that medication and the treatment of symptoms alone are not enough for people living with schizophrenia. Integrated care places a special focus on the indvidual’s needs. An evidence base already exists, including scientific evaluation, of its effectiveness. If the treatment of schizophrenia focuses on recovery, shared decision-making is the key for achieving a better treatment outcome. For the recovery process, it is crucial to take a broad view, considering all aspects of care (mental, physical and psychosocial). Stronger professional cooperation and a continuous and well-managed exchange of information, as well as networking, are essential. What role do research and development play in the everyday wellbeing of individuals living with schizophrenia and their families? To date, outcome studies for schizophrenia have focused on clinical ratings of symptom severity. These may miss and undervalue important benefits as viewed by individuals living with mental illness or their caregivers. A study has been proposed that will assess how people living with schizophrenia and their carers themselves view the benefits of various treatments, and which aspects of quality of life are valued by both individuals and caregivers. Using qualitative methods to pay attention to the individuals’ and caregivers’ own accounts, it will be possible to identify other domains and dimensions, not just symptoms, with which the value of treatment is judged. Can you tell me about your own personal connection to schizophrenia? What was the most difficult part in trying to get treatment and support? The reason I became involved in mental health advocacy is because of one of my two sons, Frank. He is now 43 years old and has been living with schizophrenia for 17 years. The most difficult part was the lack of his own insight into his illness for many years, but also the frequently recurring crises and his non-compliance with the medication. It was also difficult for me to cope with the challenges of the unpleasant and strange behavior of my son. The attitude of the professionals toward me was very disturbing, because I felt like I was being regarded not as a caregiver but as an onlooker. Receiving support and advice from peers and professionals is what ultimately helped me to understand and to deal with the process of a long-lasting, serious mental illness. To access the report and the accompanying advocacy toolkit, visit nami.org/schizophreniaguides. Winter 2014 | NAMI ADVOCATE | 7
Science Meets the Human Experience Integrating the Medical and Recovery Models By Ken Duckworth, M.D., NAMI Medical Director
T
he best way to maximize progress on a challenging journey is to use every resource at your disposal. On a journey, it is often best to maximize scientific (e.g., compass, maps, equipment) resources, as well as learn from prior experience by using hope and intuition. Similarly, in the world of living with mental illness, two models—the medical model and the recovery model—are each great tools to promote progress. I have come to see that these models can make a big difference for people, particularly when they are integrated. I use a “both/and,” not an “either/or,” approach with the young adults I serve as a psychiatrist at the Prevention and Recovery from Early Psychosis Clinic (PREP) at Harvard University. Together, we use all the tools available for the journey of recovery: science, diagnosis, shared medical decision-making, hope, strengths, education, work and family. The recovery model is relatively new in the field of mental health and clearly speaks to the needs of many people living with mental illness. It emphasizes many things, but hope, empowerment,
The key to effective treatment is getting the correct diagnosis, which doesn’t happen often the first few times around. It's a label and does not define who the person is, but it is crucial to get the right treatment. – Lanny Q.*
8 | NAMI ADVOCATE | Winter 2014
peer support and self-management stand out to me as key principles of the model. The medical model has a long tradition and is rooted in evidence and science. At its best, the medical model can be implemented with humanity and compassion. I hope to make a case for both of these models and ultimately show why they are complementary. The Recovery Model Recovery means different things to different people, but some similar principles are found across most models, and its concept has its roots in the substance-abuse community. The Substance Abuse and Mental Health Services Administration (SAMSHA) engaged in a process with many stakeholders to come up with the following definition for recovery from mental illness and substance use disorders: A process of change through which individuals improve their health and wellness, live a self-directed life and strive to reach their full potential. Through the Recovery Support Strategic Initiative, SAMHSA has outlined four major dimensions that support a life in recovery: • H ealth. Overcoming or managing one’s disease(s) or symptoms—for example, abstaining from the use of alcohol, illicit drugs and unprescribed medications if one has trouble with addiction—and for everyone in recovery, making informed, healthy choices that support physical and emotional wellbeing. • Home. A stable and safe place to live. • Purpose. Meaningful daily activities, such as a job, school, volunteerism, family caretaking or creative
endeavors, and the independence, income and resources to participate in society. • Community. Relationships and social networks that provide support, friendship, love and hope. Strengths The recovery model speaks to people’s goals and addresses the ways in which they want to live. It focuses on the goal of having a good life that is not deficit- and symptom-focused. The recovery model involves many aspects of life that are common to all people, thereby promoting shared concerns. It focuses on the individual’s experience as a source of expertise. It also creates positive expectations for people engaged in a recovery process, and supports a strong peer culture. Finally, the recovery model instills hope in a field that has long lacked this kind of vision. Weaknesses A vulnerability of the model is that the subjective experience of recovery is inherently hard to measure. In a world with shrinking resources, things that aren’t measured are often not adequately attended to or funded. There are a few measures of recovery that are in process, but there is no consensus on using them in the field or a strong way to validate the quality of these measures. Another criticism of the model is that some people with psychosis do not see themselves as ill (the neurological condition known as anosognosia), have not responded to treatment and have overwhelming symptoms. These individuals and their families may feel that the higher expectations fostered by the recovery model leave them behind.
The Medical Model The medical model relies on science— such as a correct biological diagnosis and research. Diagnosis is rooted in pathology—i.e., what is wrong—in order to develop ways to help either cure or reduce symptoms. The medical model relies on scientific proof of a pathological process or treatment intervention that can be replicated in other studies. Strengths The medical model involves the pursuit of scientific truth and has objective facts as its ideal. The model has been robustly successful in acute conditions such as infectious disease and has made great strides in helping people, such as guiding the medical community toward which chemotherapy best treats which cancer or which antibiotic works best for which bacteria. Through this model, some conditions, such as HIV infection, have been turned from being lethal conditions to being chronicbut-manageable illnesses. Medical model care, at its best, marries science with compassion for the individual in treatment. Excellent doctors employ science while also using Dr. Francis
Peabody‘s philosophy: “... for the secret of the care of the patient is in caring for the patient.” Weaknesses In psychiatry, conditions don’t generally lend themselves to acute intervention models. In regards to illnesses that are more chronic, the medical model has been criticized for being too deficitoriented and physician-defined. The medical model can also ignore a person’s strengths and thereby turn people off by being too pathology-based. Psychiatry faces the additional challenge of dealing with the incredibly complex brain, so the underlying biology that leads to clear treatments based on neurobiology is elusive—at least for now. Integrating the Two Models Can the first-person vision for hopefulness and reliance on experience be integrated with scientific knowledge to inform better care and outcomes? Yes. I believe that integrating these models is the best way to promote better care and outcomes for both individuals and systems. As a field, we are moving toward this kind of integration, but it— like many things in life—is a process.
My diagnosis does not define me. But it gives me a better understanding of who I am and why I sometimes do the things I do. – Candy A.*
Here are some examples of how the two models can work together. The Wellness Recovery Action Plan (WRAP), developed by Mary Ellen Copeland, helps people self-manage their experiences and promotes illnessmanagement strategies. This model was created by Copeland to attend to her own challenges and has intuitive appeal. Research studies now validate its effectiveness. This means that the program isn’t only a subjective positive for the individuals who use it; it is worthy of replication, dissemination and funding. Similar findings have concluded that an intervention known as Illness Management and Recovery (IMR), which was developed at Dartmouth College, also has scientific validity. The idea
Finding Treatment and Services to Aid Recovery There are many effective treatments that can support people living with mental illness on the path of recovery. The type of treatment depends on the individual, but many report that a combination of treatments is most effective. It is important to work with your health care provider to ensure an effective treatment plan. In addition to those mentioned in this article, here are some others: Psychotherapy, or “talk therapy,” is a way of helping individuals understand why they are acting and thinking in ways that are troubling or dangerous to themselves (or others). Different types of therapies include dialectical behavior therapy (DBT), interpersonal therapy (IPT) and cognitive behavioral therapy (CBT). CBT, which is one of the most widely used forms of therapy, focuses on examining the relationships among thoughts, feelings and behaviors. By exploring patterns of thinking that lead to selfdestructive actions and the beliefs that direct these thoughts, people with mental illness can modify their patterns of thinking to improve their coping mechanisms. Psychiatric medications are often used to treat the symptoms of many mental illnesses. Sometimes
called psychotropic or psychotherapeutic medications, psychiatric medications can help individuals living with mental illness function more effectively on a daily basis by treating their symptoms. It is important to note that they are not cures. Medications do not work the same way for everyone, and some people will have negative side effects, but they are a valuable method of treatment for many. There are many other tools that can support people in their pursuit of recovery. Sobriety supports such as Alcoholics Anonymous or Smart Recovery can be key for people who live with co-occurring substance addiction. Peer mentoring and navigation is a growing area in the field of learning from someone who has “been there.” Supported employment can help a person get and keep a job. Complementary and alternative medicine (CAM) is a term that is used to describe methods of treatment that are not often part of traditional care. To read more about forms of CAM that can help support recovery, read “Different Strokes: Whole Health, CAM and Lifestyle” on page 20. To learn more about all of these treatments and others, visit www.nami.org/treatment.
Winter 2014 | NAMI ADVOCATE | 9
that recovery-oriented strategies pass research muster adds another important dimension to their success. Similarly, NAMI’s Family-to-Family program, developed by Dr. Joyce Burland, is the classic, home-grown NAMI signature program that many NAMI readers and members have taken or taught. It was declared an evidenced-based practice in 2013. The medical model of scientific inquiry led Dr. Lisa Dixon, a service researcher, to demonstrate that NAMI Family-toFamily worked better than a placebo (people on the waiting list did not show the same results). The medical model took a creative homegrown idea and validated it with scientific inquiry. Cognitive Enhancement Therapy (CET) is a model of “brain training” that is based on the idea that “neurons that fire together wire together.” It is a way to encourage recovery by promoting an active approach to cognition and upholding the construct that the brain is plastic and not fixed. CET is a good example of a recovery approach that grew out of the medical model, as it has its roots in stroke rehabilitation. It has now been studied in individuals in the early stage of psychosis and has been found to make a positive difference in cognition for those individuals. Studies are now underway to examine how it can be used for people living with major mental illnesses who have had cognitive problems for longer periods of time. For a summary of the scientific research that looks at these three recovery models, see my review at www.nami.org/psychosis and click on “research directions.” Diagnosis is one of the cornerstones of the medical model. Yet diagnosis can also be a key to organizing a recovery plan. For example, if a person lives with bipolar disorder, then taking antidepressants is unlikely to be of
It took me a very long time (years) for a diagnosis ... You cannot deal with an illness if you do not know you have it. Therefore, I say a diagnosis is the beginning of recovery: Knowing is half the battle, but finding out is a battle all its own. – Theresa T.*
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much help in the depressive phase (see the Systematic Treatment Enhancement Program for Bipolar Disorder (STEPBD) study), and they may actually make things worse by activating mania. A diagnosis of bipolar disorder also increases the need for self-care: getting regular sleep, managing stress, exercising and creating supportive relationships. These are key recovery self-care principles that research has demonstrated to be effective for the management of bipolar disorder. Even when there isn’t such a clear course charted from an accurate diagnosis, I have been impressed by the fact that the diagnosis itself can still provide relief and hope. I was recently thanked for telling a person that I thought her major issue was in the selfregulation of emotions that is commonly found in borderline personality disorder. She responded with relief, exclaiming, “Now I can do something about it!” When I was first training as a psychiatric resident, the term “borderline” was often used derisively. Today, led by the work of Dr. Marsha Linehan (whose own recovery with this condition was featured in the New York Times), borderline personality disorder is viewed as a challenge that has scientifically validated strategies. The recovery strategies of several interventions— Dialectical Behavioral Therapy (DBT) and mentalization have been wellstudied—focus on developing skills for how to handle difficulties in managing emotions. The work of DBT is recoverybased and has been shown in research to reduce the risk of suicide. This is another great example of integration: A recovery intervention developed by a person who thrived while living with the condition has the scientific validity to promote the prevention of suicide. Symptoms sometimes confuse people when we talk about recovery. Can a person be in recovery when they are still hearing voices? Some traditional medical practitioners might say no—that symptom control is what defines recovery. I think a more modern view says that recovery with an illness as opposed to only from an illness is possible. We don’t have cures in our field, so living with auditory hallucinations is likely to be part of life for those affected by them. I encourage people to maximize their biological
I went 10 years undiagnosed/ untreated. I had truly no idea what had become of my life. I lived a manic lifestyle the majority of those years.... One year ago I was finally diagnosed with bipolar disorder and given the right meds, treatment and a great support system. The right diagnosis saved my life. – Kelly W.*
return to minimize their symptoms, and to also find goals that they want to focus on, like love and work. Engaging in life fully is a way to embrace recovery, with or without symptoms. Shared decision-making is another great example of how these models can be well integrated. For example, at my clinic, considering a change in medicine that is helping but is generating medical risk is a common dilemma. By looking at the science (and the limits of what we know) and incorporating what the person knows about their stresses, supports and capacity for risk, only then can a sensible collaborative course be charted. Recovery meets medical model again in the office. The key is to learn from all decisions scientifically and experientially. Learning is one essential aspect of both the recovery and medical models. The recovery model emphasizes experiential learning and how that learning can be used to help self-manage and to offer support for a person on his or her journey. The medical model looks at levels of knowledge to see what can be reliably identified, validated and ultimately treated. Consequently, learning is a core thread that runs through both models. As long as we are all learning and using all the tools at our disposal, we are moving forward in our journeys. *Quotes taken from a December 2013 NAMI Facebook poll: What is the importance of receiving a mental health diagnosis? Visit us at facebook.com/officialNAMI.
Drumming Up Research on the Human Brain Mickey Hart, Dr. Adam Gazzaley and the Healing Power of Rhythm By Kathleen Vogtle, NAMI Communications Coordinator
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hen the lead drummer of the Grateful Dead, Mickey Hart, takes the stage, the audience knows they are in for a good time. He once again seized the limelight on Sept. 30, 2013. For this appearance, however, Hart left the drum set in the wings; he was here for a different purpose. Together with Dr. Adam Gazzaley, who has worked extensively on how the brain handles memory, attention and aging, Hart spoke before the U.S. Senate Committee to discuss the healing benefits of music. Hart first appeared before the U.S. Senate Committee on Aging in August 1991 to speak on the healing value of drumming and rhythm on the brain. He has since partnered with Dr. Gazzaley to develop the “Rhythm and the Brain Project.” The event was sponsored by the American Brain Coalition. The project was born from an interaction Hart had with his grandmother, who lives with Alzheimer’s. “He noticed she was most communicative when he played the drums,” Dr. Gazzaley recalled before the committee. “It hit home that music and rhythm could have therapeutic impact, something he’d suspected for a long time.” “The real future frontier is the human brain,” Hart said. “Anything that moves has auditory and visual components—we are dealing with a ‘vibratory’ universe, and rhythm is controlled vibrations.” In his estimation, the human body is the epitome of a rhythm machine, with the brain as the center “rhythm-maker.” The first step is to understand how it works, how this rhythm really affects the body. “The brain has a song, a rhythm of its own,” Hart explained. “There are multiple, simultaneous rhythms in the brain, which change with different stages of consciousness,”
Dr. Gazzaley continued. “The different parts of the brain communicate by synchronizing their rhythms. When synchronized, the brain operates more efficiently. However, brain rhythms can become disordered.” Such is the case when one lives with a mental illness. Using rhythm to temporarily correct these irregularities is not a new concept. Hart recalls that “way back,” healers would use drums to induce a trance in their patients, which would aid in healing. Now, he and Dr. Gazzaley are working to understand how certain rhythms, specifically their wavelengths, can help adjust these “brain rhythm disorders,” even in major mental illnesses such as schizophrenia or bipolar disorder. “For example,” Dr. Gazzaley explained, “we’ve already seen that deep brain stimulation has proven very effective in treating Parkinson’s Disease. Rhythm therapy has been shown to speed recovery in those who have experienced a stroke. Neurofeedback is a powerful tool in treating ADHD.… The problem with meds is they are very blunt and cannot be used selectively. Here, we are using a very specific rhythm to treat a very specific rhythmic disorder.” Rhythm therapy shows immense promise for those who are mentally healthy as well, particularly in those who have lost a certain degree of brain function due to aging. Part of the work the Gazzaley Lab is conducting is to develop a series of video games based on the observations and data gained from studying Hart’s brain. About 180 participants of varying ages played a racing game in which they had to either drive a car or react to a symbol that appeared on the screen—in other words, single-tasking. The older demographic in the study then played the game in “multitasking” mode, wherein they had to drive and
react to the symbol. The effects were astonishing, with this group’s cognitive and multitasking ability surpassing that of a 22-year-old. Hart explained, “This is about breaking the rhythm code, our genome project. Once we know what rhythm truly does, then we’ll be able to control it and use it medicinally for diagnostics, for health reasons. To be able to reconnect the synapses, the connections that are broken in (mental illnesses), that’s where we are heading.” The implications of the study for improving overall mental health and treating mental illness are utterly compelling for Hart and Dr. Gazzaley, and they are excited for others to come aboard. Hart is helping to expedite this process through his Superorganizm tour. Much as he did in Dr. Gazzaley’s lab, Hart spends the duration of the show hooked up to an EEG cap, which projects his changing brainwaves onto massive screens and generates a light show worthy of the Grateful Dead’s heyday. “We need to seize this chance,” Hart concluded. “This is the future—this is here, this is now. We’re trying to train the vehicle that makes us us.”
Mickey Hart performing live at the 75th Anniversary of the San Francisco Golden Gate Bridge in 2013. Photo by Gayle Laird © Exploratorium (www.exploratorium.edu). Winter 2014 | NAMI ADVOCATE | 11
Service Dogs Help Veterans Still Battling the Effects of War By Kathleen Vogtle, NAMI Communications Coordinator
Shepherds for Lost Sheep staff members with their trained service dogs. Photo courtesy of Shepherds for Lost Sheep, Inc.
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hepherds for Lost Sheep was founded in 2012 in Colville, Wash., by veterans hoping to enrich the lives of fellow veterans who are dealing with physical and psychological injuries. Their method of choice? Man’s best friend. Since 2012, the organization has grown rapidly. “In our first year, we were able to train and work with 10 veterans and their families,” says Maggie McDonough, vice president of Shepherds for Lost Sheep. “We had dogs in four states: New Hampshire, Massachusetts, New York and North Carolina. Last year, 2013, was our second year, and we had 46 teams—veterans and their service dogs. The dogs were placed in 28 states.” Shepherds for Lost Sheep gained its name from the lived experience of its first veterans. McDonough explains that they were used to being around military working dogs, which are usually German Shepherds, Belgian Malinois or Labradors, and wished to have a service dog that was of a familiar breed. However, as veterans’ needs and desires changed, the organization shifted to accommodate them. “In the beginning, we were working with reputable breeders to get our first set of dogs,” says McDonough. “The program has evolved to provide other breeds and mixed breeds.” The primary goal is to make sure that there is a good connection between the veteran and the service animal. “We can formulate a specialized training schedule for each of our dogs, again dependent on the needs of the veteran. We also work 12 | NAMI ADVOCATE | Winter 2014
very closely with their families, their support systems, and especially their mental health or primary care doctor,” says McDonough. According to McDonough, what makes Shepherds for Lost Sheep unique is its primary focus on the mental wellbeing of veterans. “The goal of these dogs is to provide the veteran with a 24-hour constant, reassuring, canine partner to help mitigate their symptoms,” she says. “Once placed with the individual veteran, these dogs will help to keep the veteran focused, help them reenter life by mitigating their condition and give them something [to focus on] other than their symptoms.” Their efforts are certainly having a powerful impact. McDonough tells a story of a veteran who was home bound for six months before applying to the program; his first two visits with his dog were in his living room. Now, one year later, he is an active participant in his local Wounded Warrior Project Peer Facilitated Support Group, is driving himself to appointments and, most recently, was able to take his grown son out hunting, something his son had been wanting to do with him for years. These moments of hope are not isolated incidents. Steven Novosad, a foster parent of dogs for the organization, helped care for a Belgian Malinois named Felix. Despite the dog’s trouble-making (he once stole a whole pecan pie and the leftovers from a de-boned turkey at Thanksgiving), he was paired with a veteran from Utah. “The veteran says that Felix gave him back his life,” says Novosad. The dogs are not only changing the lives of veterans, but the lives of all those who are part of the program. “Everyone involved with Shepherds for Lost Sheep is humbled every day by the tenacity and drive each of our veterans gains in our program,” says McDonough. “We are often told that we are able to give them ‘hope again’ where they had given up. “We are veterans from multiple eras or are family members of veterans,” she adds. “All are committed to helping and
enhancing the lives of other veterans. Some have service dogs of their own, and the rest live with veterans who have service dogs. It is about ‘paying it forward,’ helping veterans create a ‘new normal.’ Only someone who has walked in the shoes of a wounded veteran can understand what they go through when they return [a] different [person] than [when] they left.” Riding the wave of the program’s ongoing success, McDonough sees the organization growing to encompass volunteer trainers in all 50 states, and she sees that many veterans who have received a dog will have gone on to train dogs for other veterans. Ultimately, though, she wants to see awareness of service dogs and the benefits of their use increasing within communities across the country. “Outreach to our veterans is a continual need. It doesn’t simply end once the veteran and the dog are paired,” she says. “We offer a network of support through similar experiences and commonalities. Our veterans begin to form relationships with one another, thereby increasing [their] success rate in adapting and reintegrating back into society. Veterans and active-duty members write a blank check to this country for ‘up to and including their life.’ It is up to us to return the favor when they come home wounded.” If you would like to learn more about this program, please visit www. shepherdsforlostsheepinc.org. Shepherds for Lost Sheep is accepting applications for veterans in need of a service animal, as well as for volunteer trainers. You can also donate to assist the service dogs as they go through the training process. Extra toys, blankets and dog treats always help, too. Service animals help many people living with mental health challenges. For more organizations that provide animals, please visit www.mentalhealthdogs.org, www.petpartners.org and http://usdogregistry.org.
Peer Support
An Integral Element of Recovery By Holly Davison, NAMI Program Manager NAMI Ending the Silence, NAMI Parents and Teachers as Allies and NAMI Provider Education
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AMI began as an informal peer-support group in which family members of individuals living with mental illness gathered to learn from each other and to share their personal experiences. Peer support is a major component of a successful recovery journey from mental illness for the individual living with the illness and his or her family. In their 2011 review of peer-support programs, U.K.-based researchers Repper and Carter defined “peer support” as “mutual support provided by people with similar life experiences as they move through difficult situations.” Due to their own similar challenges that they have endured and overcome, individuals with lived experience are uniquely qualified to provide valuable hope, support and guidance to their peers who may be struggling. While a definition is a good start, the words of someone who has participated in this kind of program do the importance of peer support more justice. Joe Teixiera, a participant in NAMI Peer-to-Peer, a peer-support program, describes what peer support means to him: “We were all in the same boat, we had a common cause, and that cause was mental illness. We were going to get well, and we were going to do it together.” Services that leverage peer support are typically divided into three primary categories: support groups, peer-run programs and providers of supports and services. Peer-support groups are voluntary gatherings in which individuals with similar challenges meet on a regular basis to share experiences and coping strategies for promoting understanding and acceptance. Examples of peer-support groups are the NAMI Family Support Groups for family, caregivers and friends of individuals living with mental illness and the NAMI Connection Recovery Support Groups for individuals living with mental illness. “We spend a lot of time in group wisdom and focus on building a dialog amongst peers. This dialog empowers individuals,” says Doug Smith, a NAMI Connection facilitator and trainer. Peer-run programs are led by individuals who have experienced challenges that are similar to the participants’ own, and they offer activities or education other than or in addition to support. NAMI understands the importance of peer-run programs to many different groups. Programs such as NAMI Peer-to-Peer, a recovery education course for individuals living with a mental illness, and NAMI
Family-to-Family, an evidence-based education course for family, caregivers and friends of individuals living with mental illness, are great examples of peer-run programs. “The empathy and understanding NAMI Family-to-Family teachers are able to provide because they’ve lived these experiences are the cornerstones to the course,” says Gini Haffner, a NAMI Family-to-Family trainer and teacher. Peers that function as providers of services are commonly referred to as peer-support specialists. Peersupport specialists typically live with mental illness themselves, have experienced significant improvements and are living well in their recovery journey, affording them the ability to offer guidance and support to individuals who are early on in their own recovery journey. An important distinction between peer-support specialists and other peer-support facilitators is that for peer-support specialists, there is a clear separation between the individual giving and receiving support, as the relationship boundaries are more firmly defined. The extensive benefits and effectiveness of peer support have been documented in scientific literature. Benefits such as greater understanding, respect and empathy often create a more open and trusting environment that is critical to empowering individuals to take responsibility for their own recovery. Peer support has also been shown to benefit communities and the mental health system as a whole by reducing institutional admission and readmission rates and increasing the length of time an individual is able to remain in the community. Increased empowerment and hope, described as being two fundamental elements of recovery by the Substance Abuse and Mental Health Services Administration (SAMHSA), are additional advantages of peer support. The individual providing the support serves as a constant reminder that people can and do overcome the challenges that confront them. Hope fosters the belief that recovery is real and provides essential motivation for individuals to strive to lead healthy, fulfilling and productive lives. “When I provide peer support, I unintentionally get support back,” says Teixiera. “This is a critical part of me staying well.” The experts agree that peer support plays a vital role in the recovery process and has proven effective at providing numerous benefits to those giving and receiving support. Where you find an individual living well in recovery, you are also likely to find that they have been the recipient of peer support at some point in their recovery journey.
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Lack of Research Means Less Effective Treatment for Minorities By Lisa R. Rhodes, NAMI Prince George’s County, Md.
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n July, the Office of Minority Health at the U.S. Department of Health and Human Services (HHS) reported that according to the U.S. Surgeon General, minorities are less likely to receive a diagnosis and treatment for a mental illness, have less access to and availability of mental health services, and often receive a poorer quality of mental health care. According to the National Healthcare Quality Disparities Report released in 2010 by HHS, in 2008, 8.7 percent of non-Hispanic black adults age 18 and over received mental health treatment or counseling, compared to 16 percent of non-Hispanic Whites. For the same year, only 5.3 percent of Hispanics, 4.5 percent of Asians and 9.6 percent of American Indians/Alaska Natives adults over the age of 18 received treatment or counseling. Determining the genetic factors that contribute to mental illnesses and advancements in the treatment of these conditions largely depends on the results of psychiatric research, which in turn is dependent on a fair representation of research subjects. Studies show that minorities also are less likely to participate in psychiatric research trials or to arrange for a postmortem donation to a brain bank, thereby largely rendering research trials ineffective due to their lack of adequate representation. Margarita Alegria, director of the Multicultural Mental Health Research Center at Cambridge Mental Health Alliance and Harvard Medical School, says minority participation in psychiatric research is critical. “It is extremely important if we want to have scientific data that can help us judge what are the best treatment options, for whom, [and] under what conditions,” Alegria says. The absence of minorities “has limited what we can say about what are the best available treatments and whether some treatments work or not for certain populations,” she adds.
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William B. Lawson, M.D., Ph.D, DLFAPA, a professor and chair of the Department of Psychiatry and Behavioral Sciences at Howard University College of Medicine and Hospital, says studies have shown that effective treatment methods differ for people of color when compared to whites. “Many treatments found to be useful in Caucasians may not be beneficial to people of color or have different side effect profiles,” Dr. Lawson says. “Large-scale studies for depression and schizophrenia show that AfricanAmericans may not be as responsive to antidepressants and have more side effects at purportedly standard doses of antipsychotics.” Francine Benes, M.D., Ph.D., director of the Harvard Brain Tissue Resource Center (HBTRC), which is funded by the National Institutes of Health, acquires postmortem brains from donors with a variety of neurodegenerative and neuropsychiatric disorders. “All areas of neuroscience and neuropathology would benefit from having ethnic minorities represented because it would help to definitively identify what changes or mutations are uniformly associated with a particular disease, such as schizophrenia or bipolar disorder, that presents a similar clinical phenotype across all ethnic groups,” Dr. Benes says. However, HBTRC has not been successful in diversifying its acquisitions of postmortem brains. Last year, the center received 265 brains. Less than 10 percent of donations were from minorities. “This has been a consistent trend for the 35 years that [HBTRC] has been in existence,” Dr. Benes says. But the shortage in minority brain donations is not necessarily a national trend. “Some brain banks show a higher representation of minority groups, such as those in larger cities. However, they are fundamentally different from the HBTRC,” Dr. Benes says. “Whereas we
receive our brains through communitybased referral sources, primarily families, other banks typically receive the vast majority of their cases through medical examiner offices.” Part of the reason why minorities do not donate their brains to scientific research, Dr. Benes says, is that they sometimes have “different cultural beliefs about death, the status of the body and brain after death, and how to preserve the integrity of the deceased.” “For example, there are some African-Americans who experience solicitation for brain donation in the context of exploitation,” Dr. Benes says. “On the other hand, there are Asian groups who believe that removal of the brain from the body will disturb the ancestral continuity of their families and their basic integrity.” While these are just two examples, Dr. Benes says that the center is beginning a new study that will try to assess attitudes toward brain removal among different ethnic groups and how these impact brain donation. Dr. Benes says that the center plans to work with community-based groups such as NAMI and a Parkinson’s diseaserelated group because the center has the distinct impression that families affected with mental illness and those with neurodegenerative disorders view brain donation differently. “This strategy will improve the efficiency with which we receive input from those who are most likely to actually engage—or not engage—in brain donation,” Dr. Benes says. According to Charlene LeFauve, Ph.D., deputy director of the Office for Research Disparities and Global Mental Health at the National Institutes of Mental Health (NIMH), in fiscal year 2012, NIMH supported more than 2,000 clinical research projects. “Nearly all NIMH research studies include members of racial and ethnic minority groups,” Dr. LeFauve says. In fiscal year 2012, in NIMH research trials, 18 to 23 percent of
participants identified themselves as black or African-American, but less than 10 percent identified themselves as Hispanic, Asian or American Indian or Alaska Native. The NIH policy on the Inclusion of Women and Minorities in Clinical Research requires that all clinical research studies include members of racial and ethnic minority groups, unless there is a compelling rationale for exclusion that shows that inclusion of these groups is inappropriate with respect to the health of the subjects or the purpose of the research. Yet despite its commitment to diversity, Dr. LeFauve says that the NIMH “is always seeking greater diversity in its clinical trials.” In line with the NIH’s overall policy, Dr. LeFauve says that NIMH expects investigators (those who conduct the research) to consider barriers to recruitment when developing a research proposal. “Investigators are required to include a recruitment plan explaining the demographics of the study, participants and proposed outreach plan for recruiting these participants when they submit their applications,” she says. However, Dr. Lawson says that there are well-documented examples of the “unsavory role of racism in scientific research of African Americans.” He cites the infamous Tuskegee Syphilis Study, conducted from 1932 to 1972 by the federal government, which involved more than 300 African American men with syphilis who were studied by researchers to learn the effects of the disease but were not told they were sick. The men never received treatment for their syphilis and were denied access to penicillin. Eleanor Murphy, Ph.D, in the Department of Psychiatry at the New York State Psychiatric Institute at Columbia University’s College of Physicians and Surgeons, and Azure Thompson, Dr. PH, MPH, now an associate research scientist and a Building Interdisciplinary Research Careers in Women’s Health scholar in the Department of Psychiatry at the Yale University School of Medicine, published a study in Psychiatry in the summer of 2009 that examined how African Americans feel about psychiatric genetic research. The study found that the subjects revealed “a perceived lack of knowledge about genetics and concerns about potentially harmful study
procedures and [the] confidentiality surrounding mental illness in families.” About 25 percent of the responses noted a lack of knowledge or understanding of genetics, yet Drs. Murphy and Thompson write that most of the study subjects were able to identify “what they believed were some advantages of genetic research, such as understanding the origins of disease and conditions (48 percent) and preventing and curing diseases through more timely, efficient and targeted treatment (35 percent).” In regard to the research of psychiatric disorders, participants expressed concerns about stigma and confidentiality. One participant said, “I think some of my family might be more willing to have a blood test to see if certain people are predisposed to cancer or something [other] than this mental illness.” Dr. LeFauve says a proactive approach to recruiting diverse populations in research is the goal and that the research results should be applicable to help improve the health outcomes of racial and minority groups. To address the issue of recruiting and retaining people from diverse backgrounds for its research workforce, NIH has established the Enhancing Diversity of the NIH-Funded Workforce Program, which is supported by the NIH Common Fund. According to Dr. LeFauve, the program consists of three highly integrated initiatives that explore what training and/or education experiences work in various contexts. Other efforts include ensuring fairness in peer review, implementing an NIH
Steering Committee Working Group on Diversity, and recruiting an NIH Chief Officer of Scientific Workforce Diversity. NIMH is working to provide opportunities for advanced research experiences for outstanding students, researchers and early career physicians from diverse backgrounds through two administrative supplement programs: Research Supplements to Promote Diversity in Health-Related Research, and Providing Research Experiences for Physicians and Medical Students from Diverse Backgrounds. NIMH has also spearheaded the development of a funding opportunity announcement, the Blueprint Program for Enhancing Neuroscience Diversity through Undergraduate Research Education Experiences, to encourage and prepare undergraduate students from diverse backgrounds to enter Ph.D. programs in neuroscience. Dr. LeFauve says that NAMI and its affiliates already play an important role in educating the public about research and promoting participation in clinical trials. The national office of NAMI and 17 NAMI State Organizations participate in the NIMH Outreach Partnership Program, an initiative of the NIMH’s Office of Constituency Relations and Public Liaison, which works to increase the public’s access to science-based mental health information and strives to reach historically underserved populations. Dr. Lawson agrees: “NAMI can go a long way to promote research as valuable to all communities to show how research has been valuable, to organize community stakeholders and create a bridge within the research community.”
Want to Help? Check out the Brain Bank The Harvard Brain Tissue Resource Center (a.k.a. the Brain Bank) at McLean Hospital in Belmont, Mass. serves as a centralized resource for the collection and distribution of human brain specimens for brain research. Research over the past decade has shown that the study of human brain tissue is essential to increasing our understanding of how the nervous system functions. Scientists from the nation's top research and medical centers request tissue from the Brain Bank for their investigations. Since the majority of these studies can be carried out on a very small amount of tissue, each donated brain provides a large number of samples for many researchers. However, in order to conduct valid experiments, it is necessary to supply researchers with a variety of brain specimens. You can become a brain donor by calling (800) 272-4622 or visiting www.brainbank.mclean.org. Winter 2014 | NAMI ADVOCATE | 15
DID
Exploring on the Big Screen
In Frankie & Alice, Halle Berry Portrays Mental Illness with Compassion and Perseverance By Katrina Gay, National Director of Communications, and Courtney Reyers, Director of Publishing, NAMI
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n her latest film, Frankie & Alice, Academy Award-winner Halle Berry plays a ’70s-era go-go dancer with dissociative identity disorder (DID) named Frankie—a black woman with two alternative identities: a scared, 7-year-old little girl named Genius and a white, bigoted Southern belle named Alice. With the care and support of a dedicated psychiatrist, Frankie is able to progress on a recovery journey that saves her and helps her reclaim her life. The film is set to premiere in select theaters on April 4, 2014. NAMI recently talked with Ms. Berry about her role, the film and her commitment to the project. Why was this project important to you? Aside from the role being desirable as an actor—the opportunity to embrace a challenging, complex role—it was important to me because the film helps put light into a dark space. People who live with mental illness often struggle. Others often look down on them or have negative opinions of them. Hopefully, this film will do some good. I am happy that the film is being released in theaters and, eventually, DVD, and hope that it promotes the importance of compassion for others, that it helps to educate the public. In playing Frankie Murdoch, based on the true story of her life, as I grew to understand the condition of DID, and as I acted through Frankie’s struggle, I grew as a human being. I would like to inspire that with this film. You play a character that lives with DID. How did you prepare for this role? Initially, it was through meeting the real woman that the story is modeled after, Frankie. She was my greatest source of information and inspiration; I wanted to protect her and her story. I wanted to understand and portray her stories
of frustration and fear. I felt responsible for making sure that these stories were addressed in the movie. I also did basic reading on DID and mental illness— but most of my understanding and inspiration came from Frankie’s life and her story; the personal story is the best source. And finally, Dr. Oz, her doctor, had transcripts as well that spoke to his feelings. I was able to secure some videotapes of health care providers who have worked with and helped people with DID in their recovery. Watching these was very beneficial to helping me ensure that we were incorporating the medical side of the condition into the film, too. When I recently watched the film, I have to say that parts of the film were difficult for me to watch. Witnessing the scenes where Frankie was self-destructive was hard to see—and yet I couldn’t look away. It was very real. What do you want people to take away from the film, and why was it important for you to include these raw moments? Often, movies are sheer entertainment. This movie was, of course, intended to be entertaining, but it was also designed to help educate and make people aware. We wanted to offer a human perspective to mental illness, to reveal the constant life struggle of mental illness and the devastating impact it can have. I hope that people are enlightened as a result of Frankie & Alice, that they learn something. I want people to feel hopeful. Watching the character come to terms with what her illness was and her process and acceptance of that—it was hopeful. Frankie manages to find her journey of recovery, to live her life and to eventually achieve a full life. She will always struggle with her condition, to some degree, for the rest of her life because it is a part of who she is, but she has learned how to deal with it. The
end message, therefore, is positive and uplifting. And part of it is this: When we can embrace recovery, there is hope. Did playing this role change you at all? Did it change the way you see mental illness or your understanding of what individuals dealing with mental illness are going through? Yes, it did. Speaking to Frankie when I was preparing for this role—listening to what she told me—I came to understand that there were moments that she felt like she didn’t want to be here anymore. This illness had a hold on her; it was so big and large. But underneath it, a deep desire and a true love of self won. This battle within and a realization of her own love and desires to accomplish her dreams helped her to keep fighting. Yes, to keep fighting. And Dr. Oz, her psychiatrist, made her feel worthy. He validated her and reminded her of that character genius in her that was there. Her relationship with her psychiatrist was, for Frankie, instrumental in helping her hold on to keep fighting to manage her condition. As we discussed at the beginning of this conversation, NAMI is the largest grassroots organization in the country, and we work every day to make sure people living with mental illness get the services and support they need. What do you want other people to know? If you had one thing to say to NAMI members, what would it be? That we are all worth it. What I found in preparing for this role was that, sadly, most people don’t think they are worth it. They don’t have strong support systems that remind them that they are worth it. Loving families are a huge help—but not everyone has access to a loving and supportive family. So, if they don’t, they need to know that help and support are important and that they are
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available. We have to help people and assist them in holding on and finding ways to get the support they need. Throughout your career, have you seen a connection between creativity and mental illness? I have been curious about that myself, yes. Over the years, I have looked into it. Yes. There is an argument to be made—some say yes, and some say no—that there is a connection between creativity and mental illness, at least in the entertainment industry. It is really hard to say one way or the other, but within my industry, I have come across some of the most complicated individuals who are highly creative who have on some level suffered from some sort of mental illness. There are many things about them that would lend you to believe they have a mental health condition that has impacted their lives and, thus, their creativity. I do believe that as a matter of point, if you have a mental illness you may not be creative and, conversely, if you are creative you may not have a mental illness. But there does often seem to be some connection. NAMI has a large membership and community. Are there any parting thoughts you’d like to share with them? My main message is one of hope. As in the movie, the way the movie ends, Frankie found a way to rise above her illness. There were moments when it could have destroyed her life and her will. But in the end, her will to live and survive ultimately won. This is a message for all of us, regardless of our personal struggle, but certainly one that is important for people affected by mental illness.
I worked on this for eight years. It has been my passion to bring this to light. I was influenced by my mother, who for 35 years was a psychiatric nurse in the VA. In addition, I have had mental illness and alcohol abuse in my family, and I think that many other people can say the same thing. The stories of mental illness have been a part of my life and have been on my radar for a long time. When the story of Frankie Murdoch came along, it was no surprise to those who know me that I would champion this film. Now, that fight continues: I have worked equally hard so that the film is distributed, is available and gets seen. Finally, the film is coming out! And these important messages—fighting for self, human compassion, hope, understanding—will become part of others’ awareness, too. Learn more about DID and this film at nami.org/frankieandalice. Halle Berry is an actress, producer, Revlon cosmetics spokesperson and former model. She is the mother of two children, a daughter and son, and the wife of French actor Olivier Martinez. She was the first and, as of 2013, only woman of African-American descent to win an Oscar for Best Actress, receiving the Academy Award® in 2002 for her performance in Monster’s Ball. In addition to Frankie & Alice, Ms. Berry can be seen in the Steven Spielberg futuristic thriller series, “Extant,” which debuts on the CBS network Wednesday, July 2. NAMI is grateful to Codeblack Films, Lionsgate and Halle Berry for their support of our important movement. For more information, including theater and ticket information, a discussion guide, resources and more, visit NAMI.org/Frankie&Alice, or follow the conversation at #FrankieAndAlice.
About DID Dissociative Identity Disorder (DID) is a dissociative disorder involving a disturbance of identity in which two or more separate and distinct personality states (or identities) control the individual’s behavior at different times. When under the control of one identity, the person is usually unable to remember some of the events that occurred while other personalities were in control. The different identities, referred to as “alters,” may exhibit differences in speech, mannerisms, attitudes, thoughts and gender orientation. The alters may even differ in “physical” properties such as allergies, right- or lefthandedness, or the need for eyeglass prescriptions. These differences between alters are often quite striking. “DID—once called multiple personality disorder—is frequently the result of severe stress in early life—often incest or multiple rape cases—and functions as a coping mechanism for the person,” says Dr. William Lawson, professor and chairman at the Department of Psychiatry at Howard University in Washington, D.C. “It’s a serious mental disorder that occurs across all ethnic groups and all income levels, and has a high rate of self-harm and suicidality.” A person with DID may have as few as two alters or as many as 100; most people living with DID average about 10 different identities. Alters are often stable over time, continuing to play specific roles in the person’s life for years. Some alters may harbor aggressive tendencies that are directed toward individuals in the person’s environment or toward other alters within the person.
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When a person with DID first seeks professional help, he or she is usually not aware of the condition. A very common complaint in people with DID is episodes of amnesia, or time loss. These individuals may be unable to remember events in all or part of a proceeding time period. They may repeatedly encounter unfamiliar people who claim to know them, find themselves somewhere without knowing how they got there or find items among their possessions that they don’t remember purchasing. DID affects women nine times more often than men. Approximately one-third of individuals complain of auditory or visual hallucinations—but it is crucial that DID not be confused with schizophrenia, as the two illnesses require very different treatment. Treatment for DID consists primarily of psychotherapy with hypnosis. The therapist seeks to make contact with as many alters as possible and to understand their roles and functions in a person's life. In particular, the therapist seeks to form an effective relationship with any personalities that are responsible for violent or self-destructive behavior, and to curb this behavior. The therapist seeks to establish communication among the personality states and to find ones that have memories of traumatic events in the person’s past. The goal of the therapist is to enable the individual to achieve a breakdown of separate identities and their unification into a single identity.
More Complete and Lasting Mental Health Recovery By Patrick McGorry, A.O., M.D., Ph.D., F.R.C.P., FRANZCP
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ecent population studies, including the National Institute of Mental Health (NIMH)-funded NCS (National Comorbidity survey) Replication survey (NCS-R), have revealed that at least one-half of us will experience a mental health challenge during our lifetime. In fact, all of us will be affected, since mental health impacts nearly every family, as well as many friends and colleagues. For too many of us, mental illness will be persistent and result in much anguish and disability, undermining our potential as individuals and members of society. Mental illness represents a major source of disability in modern society and has the most profound economic impact, largely because of when mental illness often manifests itself. The major adult mental illnesses principally emerge during the transition from childhood to adulthood, a critically sensitive period when a young person is struggling to establish his or her individual psychological, social and vocational pathways leading to independent adulthood. Ample evidence exists to show that mental illness in young people is associated with high rates of enduring disability, including educational failure, unstable employment, poor social skills and family functioning, which may lead to a spiral of disability and disadvantage that becomes difficult—though certainly not impossible—to reverse. Recent decades have seen major improvements in the mortality and morbidity rates of various cancers and cardiovascular disease. While there have been some breakthroughs in treatment, and prevention has played a key role, many of these benefits have stemmed from earlier detection and more efficient and sustained delivery of existing treatments. Timing is critical, and comprehensive and assertive service delivery systems are essential to shrinking the burden of disease and improving outcomes. The great news is that these rules apply equally well in forms of serious mental illness. For nearly a century, the pessimism and learned helplessness that we inherited from 19th century concepts and models of care prevailed. And while the promise of a neuroscientific revolution has been glimpsed, it actually consists of reforms based on improved timing
and quality of care that have begun to transform the landscape of mental health care and the outlook for individuals living with it. This process began in the early 1990s with psychotic illnesses including schizophrenia (ironically the most difficult place to start), and is now spreading to a broad range of mental and substance disorders in young people. Evidence from large, international studies has shown that the course of psychotic disorders is by no means fixed, with a poor prognosis culminating in the inevitable deterioration of social and occupational functioning, but is rather fluid and malleable. For psychosis, there have been three main targets. First, reducing the duration of untreated psychosis has been shown in a landmark Norwegian study to improve the short- and longer-term outcomes for people with first-episode psychosis. Second, guaranteeing multidisciplinary care in stage-specific programs following diagnosis has been shown in two large European studies to improve the two-year outcome for individuals. It appears to be critical to create a “streamed” culture of optimistic care that fully engages individuals and families, because when individuals are transferred to traditional services that focus mainly on older people with severe and persistent illness, some of the gains are lost. It looks like up to five years of such specialised care in lowstigma settings may be necessary for many or most people. The NIMH-funded RAISE (Recovery After an Initial Schizophrenia Episode) project is seeking to replicate and apply these findings on a large scale in the U.S. Lastly, and perhaps most dramatically, there is evidence from 10 clinical trials to show that for some individuals who receive help at an earlier stage in psychosis—when psychotic symptoms are less severe and not sustained, but distress, functional impairment and need for care are already apparent—that the risk of progression to first-episode psychosis can be reduced by 50 percent for the ensuing 12-month period. Safe psychosocial treatments like cognitive behaviour therapy and possibly omega-3 fatty acids (fish oil) are first lines of treatment here; it has been demonstrated that antipsychotics should be reserved for clear-cut and sustained first-episode psychosis because of the risk/benefit ratio.
In Australia, and increasingly in some other countries, early intervention is spreading to cover the full range of emerging mental illnesses in young people aged 12 to 25 years. This means mood and anxiety, personality, eating and substance use disorders, or more commonly, combinations of these patterns. Stigmafree youth centers (www.headspace.org. au) have been established across Australia with minimum requirements for entry. Young people and their families who are distressed or struggling can find a listening ear, support and skilled multidisciplinary professional help through what is essentially a blend of enhanced primary care in a one-stop-shop, youth-cultural environment. An evidence base and new expertise is being developed along with a process similar to the early psychosis reforms experienced a decade ago. With a growing recognition that the mental health of young people is a major public health issue, these developments are of crucial importance in inspiring a global wave of progress in mental health care. Seventy-five percent of mental illnesses appear before the age of 25, and the pattern of illness onset is the mirror image of that seen in physical illnesses. Addressing this will require new investment and transformational reform in mental health care, yet that is clearly our best chance of reducing the burden and economic cost of mental illness in the short to medium term. Ultimately, there should be a major return on investment— an investment we cannot afford not to make. Early intervention is highly consistent with the goals of the recovery movement in that it seeks to reduce the impact of these illnesses and pre-empt the need for recovery from severe mental illness in as many people as possible. Patrick McGorry is the executive director at Orygen Youth Health in Victoria, Australia, as well as the associate professor of youth mental health at the University of Melbourne. A leading clinician and researcher in the areas of early psychosis, early intervention and youth mental health, he is the recipient of the 2013 NAMI Scientific Research Award. Dr. McGorry’s work has played an integral role in the development of safe, effective treatments and innovative research involving the needs of young people with emerging mental disorders, notably psychotic and severe mood disorders. Winter 2014 | NAMI ADVOCATE | 19
Different Strokes: Whole Health, CAM and Lifestyle When It Comes to Recovery, Many Approaches Can Help By Courtney Reyers, NAMI Director of Publishing
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iving with mental illness often necessitates a full mind-bodyspirit approach for many people. In addition to medications, there are multiple methods, supplements, approaches and lifestyle choices that can aid in recovery management for individuals living with mental health challenges. Complementary and alternative medicine (CAM) is a term used in the health care field for practices that are not part of standard care; in a nutshell, it means using practices that historically have not been part of U.S. medical treatment. According to the National Institutes of Health
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(NIH), “complementary” generally refers to using a non-mainstream approach together with conventional medicine. “Alternative” refers to using a non-mainstream approach in place of conventional medicine. It’s a good idea to make sure that a healthy diet, regular exercise program and good sleep patterns are part of your daily life—especially if you have mental health concerns. However, incorporating natural products, alternative approaches and mind/body practices can be beneficial to everyone—not just people living with mental illness. Below, you’ll find a brief overview of some of the most commonly used and beneficial CAM
elements, as well as elements of good overall health that have been shown to aid recovery. Be sure to consult with your health care provider before incorporating any additions into your regimen. Diet and Exercise Regular exercise (most experts recommend at least 30 minutes per day) helps maintain body weight, relieve stress and keep your heart healthy. The foods we eat—allergies or not—can certainly have an effect on our bodies, moods and other areas of wellbeing. For more tools, like food and exercise logs, visit www.nami.org/heartsandminds.
Omega-3 Omega-3 fatty acids are a group of related chemicals that have been identified in a number of different foods but are primarily found in fish. Two specific omega-3 fatty acids, eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA), have been identified as being useful in the treatment of both medical and mental illnesses. While the exact manner in which these chemicals are beneficial is not known, it is thought that they are helpful in decreasing systemic inflammation, a potentially harmful process that occurs throughout the brain and body. Scientific research has shown that inflammation can be a contributing factor to developing schizophrenia and other psychotic illnesses. It has also been found that people who have died by suicide have lower levels of Omega-3s present in their brains. For many people, omega-3 fatty acids will be most useful as a supplemental treatment along with other regularly prescribed psychiatric medications (e.g., antidepressants and antipsychotics). Omega-3s are not FDAapproved for the treatment of psychotic illnesses and could possibly carry other health risks if not monitored, so check with your health care provider before incorporating fish oil into your regimen. Acupuncture and Massage Acupuncture is a component of traditional Chinese medicine that involves penetrating the skin to stimulate particular areas of the body. The theory behind this method is that stimulating specific points in the body can correct imbalances in the flow of energy through channels known as meridians. This practice can aid people in a variety of health matters, from smoking cessation to headaches and even fertility. Research has shown that acupuncture can provide relief from symptoms of anxiety and depression. Massage helps millions of people relieve stress, relax and soothe tight muscles, but research studies have also shown that regular massage therapy can alleviate symptoms of anxiety, depression and posttraumatic stress disorder (PTSD). In a December 2012 study published in Military Medicine, researchers noted that “[v]eterans reported significant reductions in ratings of physical pain, physical
tension, irritability, anxiety/worry, and depression after massage, and longitudinal analysis suggested declining baseline levels of tension and irritability.” Meditation, Yoga and Tai Chi Meditation is a mindfulness practice that allows you to “let go” and be present in the moment. In the fast-paced world that we live in, we often do not take the time to clear our heads and be truly present in our surroundings. This can be especially true for those who live with mental illness, because they often experience high levels of anxiety or constantly racing thoughts. Yoga is a great way to unite your mind and body through different poses and controlled breathing. Practicing yoga for just five or 10 minutes a day can help you relax and feel more at peace with yourself. Make sure to start slow and be in control of your body to avoid injury. Yoga is not about being perfect, but respecting what your body tells you. You can also try tai chi—a relaxing Chinese martial art. According to research findings in BMC Complementary and Alternative Medicine, “Twenty-one of 33 … trials reported that … regular tai chi significantly increased psychological well-being, including reduction of stress, anxiety and depression, and enhanced mood in community-dwelling healthy participants and in patients with chronic conditions. Seven observational studies … reinforced the beneficial association between tai chi practice and psychological health.” There are many great yoga, guided imagery, meditation and tai chi videos available online. YouTube is a great video resource where you can get started exploring these practices for free. In a recent review of studies conducted on mindfulness meditation in JAMA Internal Medicine, researchers looked back at more than 18,000 studies. Ultimately, they selected 47 previous studies—all randomized trials—that involved 3,515 people. They discovered that mindfulness meditation was effective in reducing anxiety, pain and depression—and that there was no evidence that meditation was harmful. The study found that improvement in individuals experiencing mild symptoms of depression using mindfulness meditation was similar to
what one might see in individuals using antidepressants. L-Methylfolate Levomefolic acid (l-methylfolate) is an active form of folic acid found in a variety of foods and in nutritional supplements, and it is considered to be a “medical food.” While researchers have seen low levels of folate in individuals with major depression for the last 50 years, recent studies (many done in 2011 and 2012) have shown promising results from the use of l-methylfolate, particularly for individuals with treatment-resistant depression. L-methylfolate helps the body make certain brain chemicals, specifically serotonin, dopamine and norepinephrine, the chemicals that selective serotonin reuptake inhibitors (SSRIs, types of antidepressants) need to utilize in order to be effective in treating depression. If folate levels are low, antidepressants may not be able to work as well. Combining l-methylfolate with an SSRI looks promising, but talk to your health care provider before incorporating this supplement. Sleep More than 70 types of sleep disorders exist, and according to a 2009 Harvard Mental Health Letter, chronic sleep problems affect 50 to 80 percent of people in a typical psychiatric practice compared with 10 to 18 percent of adults in the general U.S. population. Sleep disorders are very common in individuals who live with anxiety, depression, bipolar disorder and ADHD. If you are having trouble sleeping, it’s a good idea to avoid caffeine (especially later in the day), maintain a regular exercise routine and try to stick to a regular sleep schedule. All of these approaches to lifestyle management can help you become more in touch with your mind, body, spirit and overall health, and can provide you with an increased sense of control over your recovery process. Each person’s recovery journey and experience with mental illness is different. Accordingly, these suggestions might only work for some. Read more at nami.org and consult with your health care practitioner to explore adding CAM and other lifestyle changes to your daily routine.
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Shared Stories of Recovery NAMI's You Are Not Alone (YANA) story bank is a place where people can share personal messages of hope and inspiration for all those affected by mental illness. Each story is as unique as the person who wrote it. Included in this section are just a few of the many powerful stories NAMI receives every week. If you want to read other stories, or share your own, visit notalone.nami.org.
Kamara's Story Speaking Up! I am a 30-year-old Navy veteran and college student. I live with generalized anxiety disorder (GAD) and depression. About two weeks ago, I was in my medical anthropology class. We were having a class discussion, and a student asked why psychological pain wasn’t a valid form of pain. Another student said, because it doesn’t affect the person’s quality of life. I passionately and very loudly asked if they had ever met someone living with mental illness. I then stated that I have one, and it sucks, and it is hard and painful every day. Nobody really said much after that; I had shocked myself by proclaiming I lived with a mental illness, not to mention feeling embarrassed about what I had just said. And then I thought, well, if it takes me disclosing my mental illness in front of 40 semi-strangers and educating them with my personal experience, knowledge of mental illness and the real pain and shame that comes with the illness in order to start removing the stigma, then so be it! You are not alone. We are not alone in this fight! 22 | NAMI ADVOCATE | Winter 2014
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Ashley’s Story “Just Get Over It” For years, I was told by friends and family that I was overly dramatic and overreacting to situations around me. I was told to “just get over it” and “be normal.” For all those years, I tried desperately hard to act like everyone around me. Yet I always realized that they had something that I didn’t have. They were able to process events and not get upset. They weren’t changing from extremely happy to super sad in a matter of hours. They didn’t think about killing themselves every moment of the day. They didn’t get relief by cutting up their bodies. Something was different, and I just couldn’t figure it out. In college, I decided to major in psychology. I guess subconsciously it was a way to help me understand these differences that I saw in myself. We learned everything there is to know about the human brain and all of the chemical imbalances that go along with different disorders. My sophomore year, I had my first incidence with suicide. Before I was able to do anything, my friends caught wind of it and called the police. From that day through the next few years, suicide was about the only thing on my mind. The police were called intermittently during these years, but no treatment or counseling was ever sought. I was under the impression that I did not need therapy because I already knew everything there was to know about the brain and disorders. Besides, I had found a different outlet for my pain: cutting and alcoholism. My drinking quickly evolved into full-blown alcoholism within weeks of taking my first drink. At the time, I knew that alcohol was basically the only thing that was keeping me alive. Then Feb. 15, 2013, happened. That morning, I went to work chemically altered with a lot of the new anti-anxiety pills that were just prescribed to me. I was going to kill myself that night. I had given away my dog, packed up my house, and got everything all set. Somehow my boss caught wind of it and ended up calling the police. I was sent to a special psychiatric hospital, where I stayed for about a month. There, I was officially diagnosed for the first time in my life with borderline personality disorder (BPD) and bipolar II disorder. I had flashbacks to college lectures where we learned all about these disorders, and I thought that it sounded exactly like how I was. It explained my life to a T. It was perfect. However, I did not want to admit that I had a mental illness. After being told this information, something snapped in my
brain and I began getting violent and ended up in four-point restraints. Upon being released from the psychiatric hospital, my denial of living with a mental illness continued to grow. Over the next four months, I was in and out of different psychiatric hospitals and wards seven times. I was placed in restraints multiple times and given just about every medication known to man. It varied from mood stabilizers to antidepressants to anti-anxiety medication to medication for schizophrenia to various sleeping medications. Nothing seemed to work, and each place that I was admitted to just seemed to pump me with more medication. Finally, I was sent to a local hospital with a psychiatric unit after another attempt to kill myself. I was blessed with being assigned an amazing psychiatrist who finally figured out my medication. He took me off the boat-load of medications that were basically just sedating me and put me on a mood stabilizer and an antidepressant. Suddenly, life was beginning to feel easier to handle. My moods weren’t swinging from one extreme to another and I no longer wanted to kill myself every day. He set me up with a community agency that would provide me my medication and therapy on a long-term basis. I was able to return to school and pursue psychiatric nursing while obtaining a new job. I was finally beginning to function like those “normal” people that I had admired ever since childhood. Throughout my journey, I have been hit with many negative views and criticisms about what I was going through. The stigma of having a mental illness began to flood into my life and affect everything. However, thanks to NAMI’s Peer-to-Peer classes, I began to understand that I wasn’t alone in the fight against stigma and that together we can enlighten the world one person at a time.
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Lisa’s Story Music in His Heart I can remember so well the first time my son showed an interest in music. He wasn’t even two years old when he picked up drumsticks and began to play the mini drum kit my husband had purchased for his older brother. He would pull himself up by grabbing the end of the bedpost and position himself behind the kit with sticks in hand. Then he would carefully hit each drum. He could tell the difference in the sounds. First the snare with its tin ringing. And then the tom-toms, with their resonance. He loved the crash of the symbols. I would often help him by pressing the kickpedal of the base drum and the hi-hat. He loved the sounds! I knew he was different from other toddlers his age. He would often wander around the small apartment we lived in, in his own little world. He was independent (I thought), and there is nothing wrong with that. In preschool, his teacher noticed that he was having trouble processing simple concepts, following directions, remembering what he was asked to do and in what order, and so on. She didn’t think it would pose a problem for him in kindergarten, though, so she advanced him. From then on it was an uphill battle with the school district and the school psychologists, who, when I had him tested for disabilities, insisted that he had none. Soon came the stomachaches and anxiety. He was only in 5th grade when I had to have him taken to Loma Linda University to have tests done on his digestive tract to determine why he was having so much trouble with his stomach. It turned out that there was nothing wrong with his stomach. He was nervous all the time. His pediatrician ruled out all “physical” causes and referred me to a psychiatrist. The doctor I took him to looked over his school history and his medical records and thought that my son showed signs of attention-deficit disorder (ADD) and also some school-related anxiety. He began taking medication, and it seemed to help for the rest of his school career. We were able to have him put in special education classes. 24 | NAMI ADVOCATE | Winter 2014
He had a great advocate in his teacher, Mrs. T. To her, we are forever grateful. He even graduated high school. It was a beautiful, God-given moment for a child who had struggled all of his life thus far; he was the last to stand on the stage and receive his diploma. He raised up his hands with his diploma firmly gripped in his right hand, and the whole auditorium cheered. All this time, his music skills had been developing. He is an exceptional drummer, and an even more amazing guitar player. He writes all of his own music. All of the parts are his. He was in his first band with his older brother, who is also an excellent musician, at the age of 11. The gift of music that God gave him is what has gotten him this far in life. But the biggest battles were to come. When my husband lost his job and we lost our insurance, my son decided to give up being on his medication because he knew we couldn’t afford it. By then he was 18, and I couldn’t make him keep taking it. That summer, he did OK for about a month. But soon, he was sinking into a world of anxiety and depression. He was trying to self-medicate by binge drinking and hanging out with other youth who were wild and running the streets. I knew this was happening, but I never caught him. To his older brother’s credit, he would let me know what was going on and that I needed to talk to his younger brother. He really looked out for him. But as time went on, my youngest son’s symptoms were increasing. So I took him back to the doctor’s office we were going to before my husband lost his job. We put him back on medication. Only this time, the medication wasn’t working. Something new had emerged. The doctor diagnosed him with bipolar disorder. His illness became progressively worse over the next three years. He had a difficult time getting the right medication. At one point, he rode his bicycle in the middle of the night to a psychiatric facility about 10 miles from our house because he was suicidal and he didn’t want to worry me. He was also afraid of his dad and brother judging him. They tended to make light of his illness because none of us fully understood it. This was the beginning of his stays in and out of hospitals. This lasted until we could get his meds balanced out. In and out he went. Sometimes he was driven by his brother after a psychotic episode spent locked in the bathroom. Another time he was with my husband and me in the car with him on the way to the lab to have bloodwork done, and he tried to jump out of the car while we were going down an off-ramp from the freeway. All the while during his suffering he would cry out to God for relief, with me by
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those who are unable to protect themselves. I am very proud of him. I will always fight at his side to help him.
But the music kept coming through him and continues to come through him. The gift that God gave him has been a way for him to cope with this illness. And what a gift it is. He has been doing well lately. He is definitely unable to hold a job, so he is trying to qualify for disability. He tries to live as normal a life as possible, all things considered. I have to say, he is my hero. He is so resilient and brave. He never gives up. And he always has a heart to help others. He had been on two mission trips and was a teacher’s aide in high school for severely disabled kids. He has a reputation around campus as the protector of
And thankfully, since my husband and I took the NAMI Family-to-Family class that is offered through NAMI, so will my husband. We are a team. We hope that his story and his gift for music will be used to help others who are affected by mental illness. We pray that God will lift our son up to a place where he can give a voice to those unable to speak for themselves. His father and I have pledged to always keep a place for him in our home, a safe place to retreat from the world if necessary. We look forward to hearing the music he writes and sings, and we have the privilege of overhearing the process of the beautiful music that comes from his heart.
Doug’s Story Coping with the Thought of Fighting Alone I was diagnosed with schizoaffective disorder in 1999. I was experiencing mood swings, delusions and hallucinations about evil spirits. I felt like I was very much alone. There are times I still do think I’m uniquely singled out to suffer. But through the help of NAMI and other support groups available to me at my mental health behavior provider, I see clearly that the focus doesn’t have to be on myself anymore. Many people come to the meetings and get to share their difficulties, which are a lot like mine. My meds help me a thousand times over, as well as pastoral care, counseling and case management. When I struggle now with feeling like I’m alone, I usually am able to use some of the skills I’ve learned in the support group to realize I am not alone. For example, cognitive behavioral therapy (CBT) has rewired my thought processes in a positive way, bringing hope and confidence, which bring both balance and happiness to my life. The fight is real. Those living with mental illness need real intervention—from meds and doctor’s visits to attending NAMI meetings to see our own struggles through someone else’s life. Often, counseling should be added to the regiment, because counseling and meds, at least in my experience, are the primary means for getting better, being able to cope and to gain confidence over our disorders. When we think we’re alone, we sort of give more power to the disorder over our minds. We start “psyching ourselves out” and obsessing on top of the original disorder. Hope diminishes, and despair takes over. Deep depression takes a place in our minds, which adds to the confusion we are already experiencing. The best place to go from there is some kind of meeting—be it NAMI, support groups offered through your behavioral health office or support telephone lines. I’ve even used the emergency line offered through our behavioral health office just to talk. I think they know me personally. I always feared as a very young boy that I was going to be affected by a mental illness. I read about it in our old encyclopedias we had at home, and the notion just scared me. I grew up and found myself fighting myself all alone, unable to express what was really going through my mind—until the day I got treatment and support. Then I knew I could cope with my disorder. Winter 2014 | NAMI ADVOCATE | 25
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Anxiety Monster
Bringing Mental Illness to Life as “Real Monsters”
Dissociative Identity Disorder Monster
By Brendan McLean, NAMI Communications Manager
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oby Allen has lived with anxiety for much of his life. Three years ago, the now 22-year-old artist from the U.K. made his first attempt to take those feelings and experiences and represent them visually in a story called Toby and the Monsters. Based on the positive response he received from friends and the therapeutic benefits he experienced himself, Allen continued to revise those drawings and add other mental illnesses in the hope that others might find some benefit as well. In his watercolor collection, Real Monsters, Allen puts faces onto serious mental illnesses, including schizophrenia, borderline personality disorder and depression. NAMI connected with Allen to gain some insight into where the monsters came from, what they’re here to do and where they’re headed next. To see all of Allen's monsters, visit zestydoesthings.tumblr.com. Where did the idea for the Real Monsters project come from? The project originated from my dealing with my own anxiety. I found that drawing my worries and fears as little monsters would help me think about them differently and make my anxiety feel more manageable. I imagined 26 | NAMI ADVOCATE | Winter 2014
that my anxiety could be overcome by giving it a physical form, giving it a visible weakness that I could learn to exploit. I created the anxiety monster first based on my personal experience, and upon receiving a great response from my friends, I decided to develop the concept into a much larger project that tackled a variety of mental illnesses or conditions that people close to me dealt with on a daily basis. What did you hope to achieve by illustrating mental illness with these characters? I hoped to draw attention to mental illnesses that often get ignored or aren’t taken seriously. Anxiety disorder is a very good example, the condition often being seen as trivial or not serious enough. I know this from personal experience, as I often have to remind people how difficult it can be to live with anxiety and do ordinary tasks that other people find easy. I want to make people aware of how damaging these illnesses are and how much of a burden they can be to those who suffer from them. The project highlights conditions that some people may have never even heard of, so the work aims to raise awareness for these. I hope that people can relate to the work and that it helps them to see their own illnesses in a different light. I think there is enough comedy within the illustrations
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that can help people see their own “monster” in a less threatening way, but still emphasize how serious these conditions can be. In all the work that I create, I want to make people smile, but if I can help raise awareness for mental illnesses too, then it is even more rewarding. How did you decide how to represent each of the specific illnesses? I begin each monster design by researching the condition or disorder extensively, often relying on real-life case studies or first-person stories to get a better understanding of the illness I intend to draw. I constantly sketch throughout the researching process and try out many different ideas until I get something that works. I try to incorporate many different elements of the disorder into the monster’s character or look, which are then reflected in the descriptions, deepening the concept or understanding of each character. Looking specifically at the anxiety monster, its form is based on small rodents that like to hide in dark places. The dark colors reflect the heavy and oppressive feelings that I associate with being anxious, and the shock of bright pink in its design represents the intense rush of fear that occurs when I have an anxiety-related panic attack. The clock refers to a common anxiety related to worries or fears of unpleasant future events that may never actually happen— something I know about very well. With all of the monsters, I try to reflect other people’s experiences with their own disorders or conditions to help develop a character that people can relate to. Of course, each person’s experience with a mental illness will differ, so I try to create something that many people will find familiar. What kind of reactions have you received to the work? The work has gained a huge positive response from the Tumblr community in particular, and the project went viral within a week of it being published on my blog. I have received so many wonderful messages from people who live with one or many of the disorders I have drawn, each telling me how much the work means to them and how it has helped them to think about their condition in a different or more positive way. I regularly receive heartfelt and sincere emails from people who wish to thank me for creating the work, as if I created it especially for them. It is a real pleasure to hear from people who really appreciate all the hard work that has gone into the project, and it is more than I could ever have expected.
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What plans do you have for the project in the future? I will be continuing the project and creating at least two new sets of monsters in the near future. There are some very common illnesses that weren’t presented in the first set, such as OCD and bipolar disorder, so I would like to tackle those and also represent some illnesses that people may not be so familiar with. These would include selective mutism, schizotypal personality disorder and seasonal affective disorder. After creating the monster sets, I would like to compile the work into a book so that people can enjoy the work up-close and the book could be put to use in helping young people especially come to terms with their mental illnesses. I have already had a lot of interest from psychotherapists and doctors who would like to use the work in this way.
Borderline Personality Disorder Monster
Why do you think that reaction has been so positive? I think that people appreciate the artwork, as well as the unique presentation and stories behind the monster characters. People can relate to the monsters and imagine their condition in a different way than they had thought previously; it is something that makes them laugh or simply feel a little bit better about their condition. Art has always had a big impact on its audiences, and I’m glad that my work has had a profound and positive effect on my audience. Winter 2014 | NAMI ADVOCATE | 27
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Beyond That Meg Hutchinson Red House Records (2013)
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he healing power of music” is a phrase often heard in our modern vernacular. However, for many, these are not just words, but a lived experience. Meg Hutchinson is a testament to this. Since her debut album, Meg Hutchinson, in 1996, she has produced eight albums, participated in an award-winning documentary “For the Love of the Music: The Club 47 Folk Revival,” and is currently working on a feature-length documentary that, according to her website, “will explore many of the topics nearest and dearest to her heart: music, mental health, wellness, healing, spirituality, and how those elements converge in making the world a better place.” Hutchinson’s previous albums have also addressed these topics, particularly that of mental health. Having lived with mental illness, her songs are unique in that they reflect her personal experience, which is clearly heard in her latest album, Beyond That. Beyond That is comprised of songs that celebrate overcoming adversity, and invites listeners to look beyond the difficulties in their lives to the potential of the future. Each of the 14 tracks possesses a reflective, peaceful quality. The songs tell of a person who acknowledges the trials and difficulties of the past, but who has learned that these experiences should not haunt her, as those trials have shaped the person she is today. The lyrics of the first track speak poignantly to this theme: Don’t let the darkness in, oh November – I’m already beyond that – Meet me on that sunny hill – Cause I’m already beyond that now – Don’t let the darkness in, oh remember The entire album tells a story, beginning with an introduction and a reminder that these events are all in the past while acknowledging that the journey of recovery is a never-ending one. The middle tracks are reminiscent of difficult times and a challenging start toward recovery. These tracks contain elements of sadness, regret or nostalgia, such as in the track “Osa”:
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I was never lonely, now I’m always lonely Take me back to our path through the dappled light However, Hutchinson invariably returns to her central theme, that recovery cannot be achieved without first understanding and forgiving yourself, and the necessity of support and understanding from others. As such, her final tracks are steeped in appreciation for the world around her and reveal a growing inner peace. In the song “Everything More Beautiful,” Hutchinson sings, The moon so fast, the clouds so still Cracked like silver mud – Or the tiles of that old church ceiling, I slept under when I was young… And everything more beautiful the quieter I become Hutchinson’s work urges her listeners to never give up hope, even in life’s darkest moments. Indeed, the album tells a powerful personal story on what it means to live with mental illness, a story listeners can easily connect with for strength and inspiration. For, as Hutchinson sings, My best work has only just begun – Our best work has only just begun — Kathleen Vogtle, NAMI Communications Coordinator
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Healing Vision
Commissioned Photographs for Appalachian Behavioral Healthcare Various Artists Athens Photographic Project (2013) The path of healing and recovery is unique for each person living with mental illness. If you listen to their stories, you will discover that many of them have found a physical or creative outlet. Activities such as walking, writing and music are not only enjoyable but can also help people center themselves. Appalachian Behavioral Healthcare (ABH), a psychiatric hospital in Athens, Ohio, saw photography as a powerful tool to use in the recovery process and commissioned the Athens Photographic Project (APP) to create a collection of images as a resource for their residents. APP began as a program under NAMI Athens in 2000 and is currently an independent nonprofit organization serving as part of the Network of Care for The Alcohol, Drug Addiction and Mental Health Services Board of Athens, Hocking and Vinton Counties (317 Board) in Ohio. The APP has “supported mental health recovery in southeast Ohio by providing opportunities for community members living with mental illness to express themselves creatively through photography.” As part of their commission, the 38 artists participating in APP’s 2012-2013 30-week photography class sought “to provide patients with a large-format photographic print of their choice to display in their bedroom during their stay at (ABH).” The resulting images are now available in a new collection, Healing Vision. As part of the introduction, Nate Thomson, Executive Director of AAP, describes the project: “Artists had the unique opportunity to learn about the arts in the health care field and to then define for themselves how the arts heal. APP artists considered the symbolic quality of their subjects, use of color and light, as well as personal meaning. The result is a diverse body of work representing a full spectrum of emotion and complexity.” Thomson’s description is wholly accurate. The sheer diversity of the subjects and themes portrayed by these images is inspiring. Photographs range from the realistic to the abstract. Many include people, but an equal number do not. Landscape shots are displayed alongside detailed close-ups. Animals and flowers, trees and rivers, architecture and mesmerizing collections of bric-à-brac are all depicted. Whatever the focus of the photo may be, the love, care and consideration put into each piece are universally visible throughout the book. The students’ descriptions of their photographs are equally as intriguing. Each is an intimate glimpse into the mind of the individual and his or her motivation for capturing the image. In many ways, these observations engage viewers at an even deeper level, allowing them to feel as though they are capturing the images themselves.
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Healing Vision provides a rare visualization of the road to recovery. The collection is a refreshing and empowering resource on an often long and difficult journey—and serves as a reminder that we are not on this journey alone. — KV
Hyperbole and a Half
Unfortunate Situations, Flawed Coping Mechanisms, and Other Things That Happened Allie Brosh Touchstone (2013) At first glance, Allie Brosh’s drawings look like nothing more than a collection of crudely drawn stick figures. But the true effort she puts forth into each drawing is astounding. For example, in a video from the New York Times, the 28-year-old blogger describes how her artwork comes to life, such as the difference that moving the pupils half a millimeter can make. This attention to detail—and her humor—allow Brosh’s collection of drawings and text in her debut novel to become expressive depictions of her life experiences. Brosh’s new book, Hyperbole and a Half: Unfortunate Situations, Flawed Coping Mechanisms, and Other Things That Happened, chronicles many of her rocky days as a child, adventures with her dogs and thoughts on her traits and troubles. While the humorous anecdotes are what gave life to her blog, it was her posts about her experiences with depression that often resonated most with her readers. In October 2011, Brosh posted an online comic called “Adventures in Depression,” detailing the sadness, selfloathing and other thoughts that she has experienced with the illness. She then went silent on her blog for a year and a half before making another post this past May that depicted her downward spiral and thoughts of suicide. “No, see, I don’t necessarily want to KILL myself,” the comic version of Brosh explains to her mother. “I just want to become dead somehow.” The web post received more than 5,000 comments and more than 1.5 million visits in a single day. The painful honesty with which she describes her thoughts and experiences allows her simple drawings to convey much more than what might be considered possible. In an interview with Mother Jones, Brosh describes how her isolated childhood helped her develop her love for drawing. She had to be more resourceful than others her age because she was not able to simply visit a friend’s house. As she grew older, her passion for art continued—and her blog was born. For Brosh, the responses she receives from readers, particularly on her posts about depression, encourage her in her work. “Depression is a really isolating experience, and so you don’t really think of other people going through that, even though cognitively you know that other people Winter 2014 | NAMI ADVOCATE | 29
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are depressed,” she told Mother Jones. “Just seeing how many people identified with the post was actually really helpful for me. The amount of support that I received was pretty shocking.” Brosh’s use of her drawings and words to chronicle her sometimes-bizarre life is truly enjoyable and enlightening. Her openness about her experience with depression—as well as her humorous tales of her dogs, stealing cakes and other childhood experiences—is something that can be enjoyed by all. — Brendan McLean, NAMI Communications Manager
Remnants of a Life on Paper
A Mother and Daughter’s Struggle with Borderline Personality Disorder Bea Tusiani, Pamela Tusiani and Paula Tusiani-Eng Baroque Press (2013) Mental illness is like a ripple on a pond. The waves are most well-defined and cause the greatest disturbance near their origin, rocking family and friends the hardest even as they maintain a tight cluster around their loved one. As the ripple widens and spreads outward, the waves soften, yet still leave a distinct impression on an untold number of people. The displacement of the water also draws unknown and unpredictable elements to the surface, which may then influence the direction, spread or even the longevity of the ripple. Bea Tusiani felt this ripple effect first-hand when her daughter, Pamela, was diagnosed with borderline personality disorder (BPD). Remnants of a Life on Paper: A Mother and Daughter’s Struggle with Borderline Personality Disorder is a moving, impactful account of their family’s journey through symptoms, medication, health care issues, government agencies and lawsuits, and in so doing, urges others to reach out and seek help. Remnants of a Life on Paper immediately draws the reader in through its structure. Each of the 12 chapters begins with a series of question-and-answer sessions that took place between Ed Davis, a lawyer, and Pamela’s mother and father, Bea and Michael. These excerpts provide not only a lead-in to each chapter, but also how Bea and Michael perceived their daughter’s thoughts and actions at the time and the understanding they gained after the fact. The content of each chapter is presented in a unique way, with excerpts from Pamela’s diaries—her artwork, poetry and inner musings—alternating with her mother’s recollections and viewpoints on the same events. Both accounts are incredibly moving and insightful, offering a rare understanding of BPD. Pamela’s diary entries very clearly illustrate her periods of depressed mood, irritability, anxiety and impulsiveness, all of which put a real face on typical BPD symptoms.
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December 4, 1999 DO NOT GET HIGH EVER AGAIN! I am an idiot! I must be insane! I hate myself for everything! I am not normal. I go from fine to freak-out. December 5, 1999 I feel stupid for how I acted last night. I should not doubt my drug problem. I want to be in control of my life. December 29, 1999 I feel crappy. Called everyone I know…. I am in a cold sweat. Should I go out to some bar tonight? No! I know that drill … but still…. I don’t want to sleep or watch TV, I want some human contact. I bought a damn outfit for New Year’s Eve and don’t have anyone to look good for. No chance of love. Bea’s accounts are rife with a mother’s worry, her attempts to live her own life while caring for and worrying about Pamela, the hope as her daughter seems to improve, and the disappointment, frustration and helplessness as she slides back down again. The reader hopes and grieves with them both. Remnants of a Life on Paper not only recounts the relationship between mother and daughter, it also offers their differing perspectives on her treatment. The most notable instance of this occurs upon Pamela’s dual diagnosis and the family’s subsequent discussion of possible treatment facilities. Her strong desire to attend Road to Recovery, a dual-diagnosis facility in Malibu, Calif., was met with uncertainty from her parents, as neither they nor any of Pamela’s psychiatrists had ever heard of it. “It amazes me,” Bea recalls of Pamela’s insistence, “how, in such a short time, my daughter transitions from being withdrawn and dependent to someone in control and decisive.” Remnants of a Life on Paper is a gripping reminder of how deeply mental illness affects millions of people around the world. As Pamela writes, “There I stood, in a hole, deep in the ground. Did I dig it or just get in? Did I fall into it? Did someone else dig it and throw me in?” In the aftermath of their experience, Bea echoes her daughter in saying, “The hole Pamela wrote about is still there, but through the telling of valiant struggle, she has extended a hand to help others climb out.” — KV
Walks on the Margins A Story of Bipolar Illness
Kathy Brandt and Max Maddox Monkshood Press (2013) Walks on the Margins: A Story of Bipolar Illness is a tale told in tandem by a mother and son fighting the devastation of bipolar disorder together. In alternating chapters, Kathy Brandt describes the heartbreak of becoming both her son’s drillmaster and his most passionate advocate, while Max Maddox offers a lyrical
B O O K narrative of what his descent into the disorder looked like from the inside. The honest combination of their two perspectives is a refreshing and meaningful contribution to the landscape of mental health memoirs. Kathy Brandt, a writer, professor and most recently mystery novelist, presents the family background and early events of her son’s diagnosis—multiple arrests, recognition of symptoms and diagnosis, sojourns into various hospitals sometimes mediocre, sometimes dreadful—with an eloquent clarity without which it would be difficult to piece together her son’s more abstract chapters. “Max’s sister, Jessi … was the first to put a name to it—manic depression,” she writes. “She stared out the window on a sweet fall afternoon as she told the story of a girl in her biochemistry class last year.” Max Maddox’s chapters, on the other hand, are both an expression of artistry and a glimpse into the confusing realities of psychosis and mania. Max writes, “Perched in the windowsill of the ward, I watched the sun rise over Lake Michigan. When it was light enough, I would find a plastic palette of watercolors.” And later: “Buffalo, stark-naked in a motel on a king mattress with no blankets, confounding the sparkles in the ceiling for star maps in hold chips. Simply unable to break the boundary of waking life.” There’s no question he is a gifted artist, and he has retained his talents throughout his tangled path from illness to recovery. Kathy’s and Max’s accounts both leave undiscussed the question of how connected his creativity is to his illness, although enough research has been done on this topic that the reader will probably wonder. Kathy does, however, suggest that Max’s art was something of a salvation during his darkest years, giving him something to hold onto, although Max’s chapters present his artwork more as a constant habit than as a saving grace.
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Taken together, Kathy and Max’s narrative is an optimistic one. In this realm of literature, we’re used to reading about how a mother or father recalibrated their expectations for a child with a new psychiatric diagnosis. These expectations usually begin with achievements like a graduate degree or starting a business, then become painfully downgraded to getting out of the bed each morning, or taking a shower. I kept waiting for the same process with Kathy and Max. However, in one of her early chapters, while describing her experiences seeking consolation from other parents of children living with bipolar disorder, Kathy admits, “I was incapable of lowering my expectations or imagining Max should lower his.” Perhaps it helped that she “never had those kinds of ambitions for my kids”—i.e., that they become “doctors, lawyers, millionaires, … great artists and poets”; she “just wanted Max to be happy and successful in his own right.” But Max eventually came to realize success in his field by anybody’s standards: Following his diagnosis, he achieved a B.A. in philosophy from Grinnell College, an M.F.A. from the Pennsylvania Academy of Fine Arts, a prestigious fellowship, gallery exhibitions and multiple curatorial positions. He continued to create inspired artwork; his passages in this very book are prime examples of his impressive artistic capabilities. While it may not be realistic for every individual diagnosed with mental illness to maintain his or her prediagnosis expectations, we are uncovering more evidence that abandoning those expectations completely can sometimes do more harm than good to an individual’s chances of recovery. Kathy and Max’s story is a valuable testament that even the very darkest moments—psychosis, depression, failed medications, arrest—don’t last forever. — Taylor Poor
Is Your Bipolar Depression Hard to Treat ? NIH RESEARCH STUDIES Brain Imaging & Medication Studies
Participation includes 1-4 visits, psychiatric interviews, medical history, Experiencing thoughts of sadness, hopelessness, guilt, worthlessness, lacking interest in everyday activities you physical exam, blood and other medical tests. Some studies are conducted on an outpatient basis, others on an inpatient basis. once enjoyed? Participants must be free of other serious medical conditions. NIH researchers seek persons between the ages of 18-55 Research evaluations and medications are provided at no cost. with bipolar disorder, who are currently in a depressive There is no cost to participate. We enroll eligible participants locally and from around phase, for participation in several brain imaging and the country. Travel arrangements are provided and costs covered by NIMH. medication studies that are evaluating how experimental (Arrangements vary by distance and by specific study.) After completing the study medications (ketamine, riluzole & scopolamine) may participants receive short-term follow-up care while transitioning back to a provider. reduce symptoms rapidly.
Call: 1-877-MIND-NIH Research Studies Enrolling Participants Call About Eligibility
TTY: 1-866-411-1010 e-mail: moodresearch@mail.nih.gov http://patient info.nimh.nih.gov Atendemos pacientes de habla hispana.
(1-877-646-3644)
www.clinicaltrials.gov Protocol # 01-M-0254
Winter 2014 | NAMI ADVOCATE | 31
2014 NAMI National Convention Advocates for Change: From Dialogue to Action
NAMI returns to the nation’s capital for its 2014 national convention!
Having the NAMI National Convention in Washington, D.C. affords NAMI advocates the chance to educate their Congressional delegations about issues related to mental illness. Two thousand grassroots activists will meet face-to-face with our nation’s policymakers to demand change to our nation’s mental health care system. The 2014 NAMI National Convention will feature: • Top-notch researchers and clinicians providing information and tools to advance and sustain recovery from mental illness. • An opportunity to meet with your legislators during advocacy visits on Capitol Hill. • People living with mental illness and their families providing their own important perspectives on recovery. • The country’s keenest minds and savviest policymakers offering strategies and tactics to effectively advocate for changing the mental health system in our nation. • Abundant networking opportunities enabling us to learn from each other about how to improve the lives of all people living with mental illness and their families.
Washington, D.C. Sept. 3-6
PRELIMINARY CONVENTION SCHEDULE (Please note: This schedule is subject to change.) WEDNESDAY, SEPT. 3
FRIDAY, SEPT. 5
Morning: • Change the Frame Summit • Advancing Recovery – Part One Afternoon: • Council Business Meetings • Advancing Recovery – Part Two • Education, Training and Peer Support Center Program Directors Meeting Evening: • Convention Orientation • Legislative Briefing
Morning: • Open Mic with NAMI Board • Special-Topic Sessions Afternoon: • Research Updates • Workshops – Group Two Evening: • Special Presentation
THURSDAY, SEPT. 4
Morning: • Opening Legislative Plenary • Capitol Hill Visits Afternoon: • Networking Meetings • Workshops – Group One Evening: • State Caucuses • Film Night
SATURDAY, SEPT. 6
Morning: • Research Plenary • Annual Business Meeting Afternoon: • Arts at Lunchtime • Education, Training & Policy Forums • Special-Interest Networking Sessions Evening: • Convention Banquet
• Inspiration, innovation and an exhilarating four days in the nation’s capital.
Make your plans now to attend this life-changing event Sept. 3-6 at the Marriott Wardman Park Hotel. Register early and save money. First on Board registration rates — just $195 — are available for members who register by Feb. 28, 2014!
HOW TO REGISTER
Register online at www.nami.org/convention. (When you register online, you’ll also receive valuable program updates via email).
FULL CONVENTION REGISTRATION FEES Rates
Member
Non-member
First on Board (deadline 2/28/14) Super Saver (deadline 5/1/14) Early Bird (deadline 7/31/14) Last Minute (after 8/1/14) Consumer (deadline 7/31/14) Consumer (after 8/1/14)
£ $195 £ $210 £ $235 £ $250 £ $150 £ $160
£ $250 £ $275 £ $310 £ $350 £ $210 £ $220
Can’t attend the entire convention? Convention registration day rates are also available! Don’t have access to the website? Call Hanem Ali, NAMI’s Registration Manager, at (703) 524-7600.
WHY WE LOVE WASHINGTON, D.C.!
The Smithsonian museums, monuments, Capitol Hill, the National Zoo, the National Mall and more! Washington, D.C. is full of wonderful places to enjoy. And one of the best things about Washington, D.C. is that many of these sites are free to visit.
HOTEL INFORMATION
The location of the Marriott Wardman Park Hotel is unbelievably convenient. The entrance to the Woodley Park metro station is just 100 yards from the hotel’s rear entrance. A five-minute walk takes you to more than a dozen great restaurants on Connecticut Avenue and a 10-minute walk up Connecticut Avenue will take you to the National Zoo. NAMI’s room rates at the Marriott are $155/night plus tax for single or double occupancy. Book online through the convention website (www.nami.org/convention), or call Marriott Reservations toll-free at 1 (800) 393-3058. Make your reservation no later than July 15 to receive these great hotel rates!
TRAVEL INFORMATION
Reagan National Airport is only 10 miles from the Marriott Wardman Park Hotel. You can easily travel from the airport to the hotel via the Metro. United, AirTran, US Airways, American and Delta all fly to Reagan National Airport. NAMI National Convention staff is currently in negotiations with certain airlines for special travel deals to the 2014 NAMI National Convention.
Join us for the 2014 NAMI National Convention in this wonderful city! For more information, visit www.nami.org/convention.
3803 N. Fairfax Dr., Suite 100 Arlington, VA 22203-1701 (703) 524-7600 www.nami.org