Tuesday, January 20, 2015

When I Stand In Your Shoes: An Open Letter from a Mom to a Teen

By Nina Bingham

I’m going to say to you what I wish I’d gotten a chance to say to my daughter. In 2013 she took her own life at the age of 15 due to severe depression. Since I’ll never be able to say these things to her, as part of me getting better, I’ll say it to you instead (thanks for listening):

Just because I don’t understand you, talk too much and don’t listen, think I know everything (which I definitely do not), can be demanding and harsh, expect too much of you, and don’t show an interest in what you are into, doesn’t mean I still don’t love you. I get so worried about how I’m going to pay the bills, buy the groceries, make the rent and car payments, buy you the things you need like new clothes and stuff for school that I lose sight of you as a person. I start thinking of you as one more responsibility that I have to take care of-and that’s when I turn into a dreaded parent. I stop being me, and I take on this super-mom attitude, and then we’re reduced to the parent and child, which isn’t working anymore, because you’re not a child anymore.

You’re becoming an adult-and it completely throws me off. Your friends have become the people you talk to now, and suddenly I’m the odd man out. I’m supposed to know how to handle all this change, but I don’t, not really. I got used to being your best friend. I’m expected to let go one day like you’re a balloon, and let you fly like you’re supposed to, like I taught you to, like I told you to.

But here I am, still holding onto this string, my fist just won’t let go. I see you growing into a sane and strong person, sometimes even stronger than me. But I can also see (because I’m older) when you’ve chosen the wrong path. It’s in these moments that I get worried and lose my cool. Instead of talking to you like me, the understanding person that I am inside, I talk to you like a parent (which you hate), and suddenly I’m talking but you’re not listening because I’m lecturing.

And I’m using that “know-it-all” tone because once, when I was your age, I faced the same kind of decisions-and got hurt. So really, when you look at it, the “mom-tone” is used when I’m feeling scared for you. In an irritating way, that should tell you I care. A LOT. I care enough to stop and lecture you, enough to stand up to you when you’re angry with me, enough to hug you when you go stiff on me. I probably care too much, which is why I either give up when you’re mad at me (because I really, really don’t want to alienate you), or I push too hard. It’s so frustrating, wanting to help-and feeling you can’t see me over my mom voice. Sigh.

So here we are, you on that side and me over here, and both of us wanting the same thing-to be close, to have a healthy relationship. This has been a problem for every single mother and daughter throughout time, and they’ve had to work through it. Some do, and some don’t. Some mothers and daughters just give up trying to understand each other and stay estranged. Others keep trying, throughout their whole lives; trying to stand in each other's shoes.

I think that’s what it takes to have a good relationship-any relationship: seeing for a minute through the other person’s eyes. When I stand in your shoes (and I wouldn’t want to go back to being a teen, not for a million bucks), I see a world that’s completely messed up. And you’re probably wondering how the heck you’re supposed to grow up to be normal in a society like this, where everything is depicted as perfect and romantic and enchanted, but where everything is actually screwed up, dysfunctional and crazy. Sometimes I wonder the same thing, and I’m an adult!

When I stand in your shoes I feel like I don’t stand a chance, because I’ve grown up in a family where nobody understands me, and everybody’s busy with their own problems, and so it makes me feel like I’m gonna have to do this alone. And that thought scares the crap out of me. So I hook up with a boyfriend or a girlfriend, which is what I’ve been dreaming of, this amazing soul connection-only to find out they are messed up too, but at least I’m not doing this alone anymore.

When I stand in your shoes I begin to get the sinking feeling that life is going to be this way forever-insane, confusing, frustrating, and just plain pointless. So I start to get depressed, because the world, which commercials tell you is just waiting for you to conquer it, is, in fact, unconquerable. As I look through your eyes, I see a world where everything is upside-down.

When you’re depressed because the world and everybody in it seems completely untrustworthy, I want you to remember one thing, probably the most important lesson you’ll ever learn. It is: Life is hell not just for you, but for everybody-and that’s why there are so many crazy people in the world doing crazy things to hurt each other. So while you’re in your room thinking that nobody understands what you’re going through, I’m in my room thinking the exact same thing. Kind of ironic, isn’t it that we feel the same way, yet have such a hard time reaching out to each other?

I’m in the next room feeling left out, misunderstood, pushed away and confused, just like you. I’ll try harder to be brave-to ask you for a hug when I need reassurance, and I’ll try not to pretend I’m perfect (because you see how messed up I can be). In exchange, I hope you’ll try to bust out of the myth that I don’t care, or you’re not important, because the truth is: YOU ARE EVERYTHING, everything that’s important to me. I just get scared to say it, just like you do, and I just get busy, just like you do. You see, we’re not as different as we thought.

Here’s my motherly advice (this time, said from the heart): next time you feel like you can’t go on, please try and remember me. I’m probably just barely holding on, too. Maybe if we stand in each other’s shoes for a minute and are honest about our feelings, we’ll be able to get through this crazy hell-hole called life together. I don’t know about you, but that’s all I really need-to know you’re on my side.

Love you, imperfectly, but forever-

Nina Bingham is an author, life coach, and clinical hypnotherapist. Her fifth book, "Once The Storm Is Over: From Grieving to Healing After The Suicide of My Daughter," is due out in February 2015. Her website is www.ninabingham.blogspot.com.

If you or a person you love is having thoughts of suicide please call the National Suicide Prevention Lifeline at 1-800-273-8255.

Sunday, January 11, 2015

NAMI’s Top 10 Online Stories from 2014

By Brendan McLean, NAMI Communications Manager

Every week NAMI publishes articles and blogs about the latest research, advocacy breakthroughs, interviews with leading researchers, advice on how to manage a mental health condition and other topics of interest to our active and information hungry audience.

In 2015, don’t miss of our stories by signing up for our monthly newsletter NAMI Now. All you need to do is sign for a free account on NAMI.org. But before we get too far into the New Year, here’s a look back at the most read stories from 2014.

  1. Should a Mental Illness Mean You Lose Your Kid? – Mindi has never harmed her daughter and is capably raising a son, but authorities took her daughter under a concept sometimes called “predictive neglect.”
  2. 60 Minutes: Here’s the Full Story – On Jan. 26, 60 Minutes aired "Nowhere to Go: Mentally Ill Youth in Crisis," to help bring attention to failures in the mental health care system and the effect on youth and families.
  3. What We Can Do about Depression – Robin Williams' passing reminds us that depression and suicide can affect everyone.
  4. Why Do Y’all Have Tattoos? – A simple question can have a much bigger impact than you'd expect.
  5. Trying to Unlock the Secrets of Schizophrenia – With new technology, scientists are taking a deeper look in the human genome to find the cause of schizophrenia.
  6. Stopping Schizophrenia in Its Tracks – When the right supports and services are available, tragedies can be prevented.
  7. NAMI Statement by Mary Giliberti: Reflecting on the Passing of Robin Williams – NAMI remembers the life Robin Williams and reminds us all how important it is to reach out and help one another.
  8. Federal Proposal to Limit Access to Psychiatric Medication Causes Concern – Proposed alterations to Medicare Part D could mean changes in the availability of medication for individuals with mental illness.
  9. Hyperbole and a Half Draws a Unique Picture of Depression – Allie Brosh chronicles many of her difficult days as a child, including living with depression, in her humorous and poignant new book.
  10. Depression: A Scientific Approach – A 7th grader shows an understanding that many people much older don't even have.

Friday, January 9, 2015

A New Act Will Help Those Affected by Mental Illness Save Money

By Andrew Sperling, NAMI Director of Federal Legislative Advocacy

The Achieving a Better Life Experience, or ABLE Act, was signed by President Barack Obama on Dec. 19. This new law allows some families and individuals to establish tax-free savings accounts for the qualified expenses of people with blindness, physical or mental disabilities without the fear of losing government benefits.

Under the ABLE Act, people living with disabilities will be able to deposit up to $14,000 annually in a qualified savings account and save up to $100,000 without losing eligibility for Supplemental Security Income (SSI). Setting up an account will not affect eligibility for Medicaid. The law also allows the account to earn tax-free interest. Funds in ABLE accounts can be used to pay for health care, education, and other expenses, including housing.

However, in the final stages of the legislative process an important restriction was included on ABLE accounts: only people whose onset of disability occurred before age 26 will be eligible. This means that many adults living with serious mental illness will not be eligible for these accounts. It is important to note that the age of 26 is not related to the onset of illness, but rather the point at which the Social Security Administration (SSA) deemed an individual to be so disabled that they became eligible for benefits under SSI. For many adults with serious mental illness this is long after their initial diagnosis.

Why was this restriction put in the ABLE Act? The cost. Earlier versions of the ABLE Act did not include this restriction on eligibility. However, the Congressional Budget Office (CBO) projected that the cost would exceed more than $20 billion over the coming decade. With this age 26 eligibility requirement in place, the projected 10 year costs were lowered to $2 billion. This forced the bill’s sponsors to accept this restriction in order to pass the bill.

NAMI will continue to work with ABLE sponsors in 2015, including Senators Bob Casey (R-Pa.) and Richard Burr (R-N.C.) and Representative Ander Crenshaw (R-Fla.), to remove this restriction.

Mental Health is #Trending

By Joni Agronin, NAMI Communications Coordinator

I love Twitter. I use it every day for tracking all kinds of things like how late I can expect to be to work because of Metro busy my morning commute will be, what my favorite brands and celebrities are up to and what’s happening in the news. I also use Twitter to express myself and my emotions through pictures, song lyrics and various emojis ;). From the time I have spent on NAMI’s twitter account I can say that I frequently see many others doing the same.

There are more than 500,000,000 tweets sent every day and that number is increasing every day. We tweet when we are happy and share our accomplishments. Some of us ask whether we should dress up as Superman or Batman (but really know the right answer deep down). Some of us also tweet when we aren’t happy, when we’re afraid, alone or going through a hard time.

We know that people are sharing a lot of information on Twitter, so how can we sift through millions of tweets to see if people are asking for help?

Researchers at Johns Hopkins University in Baltimore, Md. may have found a way. Computer scientists there have previously used Twitter posts to track flu cases and are optimistic that they can use the same techniques to track mental illness.

According to The Hub, where JHU publishes their research endeavors,  they have mined tweets from users who either mention their diagnosis or display particular language cues linked with certain disorders to quickly collect rough data on posttraumatic stress disorder, depression, bipolar disorder and others.

This technique can also be used to determine rates of mental illness in certain geographic areas.  The examples they used included trends showing higher rates of PTSD found at military installations that frequently deployed and higher rates of depression in areas with high unemployment rates.

Researchers say their goal is to share this information with treatment providers and public health officials. Maybe eventually we can even use this information to predict trends and set up resources to ensure that care is available as soon as people need it and not after it’s too late.

Tuesday, December 23, 2014

Looking Forward to 2015

By Mary Giliberti, J.D., NAMI Executive Director

It’s no secret that NAMI wants to build a broad movement to improve the lives of all people affected by mental illness. In 2014, I could feel the movement growing, especially in trips to meet with grassroots NAMI leaders in such diverse states such as Georgia, Illinois, Massachusetts, Montana, Tennessee and Texas. The energy and commitment of NAMI volunteers is always impressive—and essential to the future.

Taken together, many developments in 2014 provide a foundation for 2015 and years ahead. The challenge is to keep building on these opportunities.

· Philanthropist Ted Stanley donated $650 million to the Broad Institute for brain research to potentially develop new treatments. In the words of NAMI’s medical director, Ken Duckworth, it is a new “ ground-breaker” for scientific research on mental illness. Medical science is a cornerstone for NAMI’s commitment to improve the lives of individuals and families affected by mental illness.

· USA Today launched a special series, The Cost of Not Caring , about the inadequate mental health care system which inspired dialogue in communities around the country. NAMI worked closely on the series, helping identify people affected by the issues so their personal stories could educate readers.

· Diverse faith communities increased their focus on the need to help people find treatment for mental health problems. The most dramatic event was "The Gathering" of religious leaders and mental health experts organized by the Saddleback Church, the Roman Catholic Diocese of Orange and NAMI Orange County that provided a nationally significant model for outreach.

· The call for Congress to pass mental health care legislation increased. NAMI sponsored a National Day of Action in which recording artist and actress Demi Lovato participated, amplifying our voice. NAMI also published a state legislative report for 2014, gathering all of the mental health legislation that passed in the past year. We will be continuing our efforts at the state and federal level to meet the objectives of our new strategic plan and address issues such as homelessness, criminalization of people with mental illness, early intervention and treatment, and the needs of service men and women, veterans and their families.

· Along with others, NAMI won an important victory by defeating proposed restrictions on access to medications under Medicare Part D. Protection of shared decision-making by doctors and individuals is a key NAMI value and we will continue our efforts to ensure access to treatment that works.

· Attention increased this year on the need to end the criminalization of mental illness. NAMI helped shape the debate with its call for nationwide expansion of crisis intervention teams (CIT). In 2015, NAMI, the Council of State Governments, the National Association of Counties and others will build on this momentum by launching an unprecedented campaign to lower the number of people with mental illnesses in jails by improving access to effective mental health and co-occurring substance use treatment.

· Major inroads were made with youth and young adults through the NAMI on Campus program, with 85 active clubs on campuses across the country and 240 in the process of being formed. Additionally, NAMI’s Raising Mental Health Awareness on College Campuses toolkit was sent to more than 300 campus communities. Young adults leading these groups and activities are NAMI leaders of the future!

Every movement has many different centers of energy, creativity and commitment. Both large and small events converge to form greater waves of change. Looking back on 2014, are there trends or events that you think provide hope, inspiration or opportunities for the future?

Do you have ideas you want to share for 2015?

Please feel free to share them with me at executivedirector@nami.org. I may not be able to reply individually, but I can promise to read every message personally.

In the meantime, best wishes for the holidays and the New Year. Thank you for all you do on behalf of people living with mental illness and their families!

Friday, December 19, 2014

Depression: A Scientific Approach

By Marisa Balades

“Of all the major illnesses, mental or physical, depression has been one of the toughest to subdue.” – Dr. Richard A. Friedman.

Millions of teens and adults all over the world are affected by depression every year and it may be a more complex problem than we thought.

With over 350 million people affected by depression worldwide, it’s no doubt an incredibly real and serious problem, but what exactly is going on inside a depressed person?

“There might be something genetic about it”, Beverly Lehr, health sciences clinical professor and staff psychologist from the University of San Francisco. She talks about how depression might actually be hereditary and is usually misconstrued as a disease “you can just get.”

In the past, depression was often described as simply a chemical imbalance in the brain. In recent years, scientists began to notice that the brain cell growth and connections actually may play a larger roll. The hippocampus region in particular controls memory and emotion and the longer a person has been depressed, the smaller the hippocampus becomes. The cells and networks literally deteriorate.

Stress may actually be a main trigger in the increase of new neurons in this area of the brain. Interestingly, many modern drugs have an indirect effect on the growth of brain cells. This is likely why serotonin-based drugs seem to help some patients, but not for the reasons we once thought. Instead, they promote the release of other chemicals which ultimately stimulate neurogenesis.

Some scientists now believe the focus should be on drugs which directly affect neurogenesis. However, while your neurons and chemicals may be the direct influencers, many genetic factors have been discovered as well. Every part of your body is controlled by genes. “If the genes get it wrong, they can alter your biology in a way that results in your mood becoming unstable.” Harvard Health Publications explains. Knowing this, we are informed how genes make biological processes and how they can alter your biology.

Obviously, more research needs to be conducted in order to prove that depression could have be hereditary.  

“They are considered usually to be vulnerable to depression because of family history,” Lehr said.  She explains how depression is a disease involving genetics. This is imperative because you can see if your parents or grandparents had depression and be better prepared. One particular study found that in a variation in the serotonin transporter gene leaves individuals more vulnerable to depression.

So while the true cause or causes of depression are yet to be identified, it is important to remember that depression is a disease with a biological basis along with psychological social implications. It is not simply a weakness that somebody should get over or even something we have a say in. Just like heart disease or cancer, shedding light onto the subject is of the utmost importance in order to bring funding and proper research.

Psychologist David Burns is quoted as saying, “Depression can seem worse than terminal cancer.” He tells us this because most people with cancer feel loved, have hope, and have self-esteem.
Jan Silver Maguire, who lives with depression, shares, “I’ve come to understand that recurrent depression is my Achilles’s heel. There is also a strong biological component in my family; my mother and sister both struggled with severe postpartum depression. I know that medication alone is not the cure-all so I’ve expanded my arsenal of coping skills. I exercise, try to eat healthfully, volunteer, set boundaries like saying “no” when I need to, work on turning negative to positive self-talk, and cultivate an attitude of gratitude whenever possible. Some days are better than others, but that’s OK.”

Jan shares her depression story on Anxiety and Depression Association of America (AADA) and explains her journey through her recurrent depression. Jan’s story helps truly understand some important information. She talks about how there is a strong biological component in her family which goes to show that depression stands on a biological basis.

“It pains me that there are still so many misconceptions about mental illness because it prevents so many people from seeking treatment,” she writes. “It’s your life and you absolutely matter.” Jan provides hope for people suffering with depression, stating that they can get help. This lets us know, that even Jan, knows that there is hope for anyone who has depression. People shouldn’t stop when there is a better way to solve the issue.
Although depression cannot actually be cured without medicine and more research, studies do show that just by saying ‘hi’ to a depressed person can make their day better.  Try to say hi to someone who you know is not feeling the happiest in their lives. It is hard for people struggling with depression. Every aspect of life can be impacted.

Marisa is a 7th grader in California. This is an edited version of a class assignment.

Thursday, December 18, 2014

Congressional Budget Bill a Mixed Bag

By Andrew Sperling, NAMI Director of Federal Legislative Advocacy

This past weekend Congress passed the “Continuing Resolution – Omnibus” spending bill (HR 83) for the remaining months of fiscal year 2015 which runs through Sept. 30, 2015. The measure is now waiting for the President’s signature. This bill contains good news and bad news for mental health. The good news: HR 83 provides a small increase in funding for mental illness research. Bad news: the bill includes a small reduction for mental health services.

Mental Illness Research Funding

The omnibus bill prevents any further cuts to funding at the National Institute of Mental Health (NIMH). Overall the National Institutes of Health (NIH) budget for 2015 will be increased by almost $150 million. NIMH received a budget increase of almost $17 million for a total budget of $1.463 billion for 2015. The bill also allocates funding to the NIMH as part of the President’s Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative. Multiple federal agencies and a number of foundations collaborate in the BRAIN Initiative designed to release new technologies and undertake basic mapping of circuits and neurons in the brain.

Mental Health Services Funding

The Substance Abuse and Mental Health Services Administration (SAMHSA) will receive a $39 million increase over fiscal year 2014 levels, for a total budget of $3.62 billion. However, most of this increase is directed to the Center for Substance Abuse Treatment to address the growing crisis of opiate addiction in America. Funding at the SAMHSA Center for Mental Health Services (CMHS) will actually be reduced for 2015 – a reduction of $9.4 million out of total CMHS funding level of $1.079 billion. Almost every line item in the CMHS budget endures a small reduction, in most cases, less than 0.5%. Among the highlights of the final CMHS budget for 2015 are:

  • $481.5 million for the Mental Health Block Grant (MHBG) – a $1.2 million reduction. The MHBG is dedicated to building and supporting the community-based public mental health system across the country. Despite this reduction the bill does continue the 5% set aside for early intervention in first break psychosis that Congress put in place last year. This requires each state and territory to direct 5% of the block grant funds for evidence-based programs that address the needs of young adults experiencing first break psychosis. NIMH will continue its role of validating evidence-based approaches for early intervention and psychosis.
  • $64.6 million is allocated for the PATH program, a $100,000 reduction from its 2014 level. The PATH program is a state grant program for outreach and engagement for individuals with serious mental illness who are homeless.
  • $117 million is allocated for the Children’s Mental Health program, $300,000 below the current level.

Most programs under the CMHS “Programs of Regional and National Significance” (PRNS) would continue at levels slightly below their 2014 level. The total amount for 2015 for PRNS is $366.6 million which is a $7.7 million reduction. Among these line items are:

  • $49.8 million for the Primary-Behavioral Health Care Integration (PBHCI) program, which supports the co-location of services in behavioral health and primary care settings.
  • $54.9 million for suicide prevention activities, including the Garrett Lee Smith state and campus grant programs.
  • $39.9 million for new Project AWARE (Advancing Wellness and Resilience in Education) grants.
  • $14.9 million for Mental Health First Aid training.
  • $30.7 million for homelessness prevention programs.

Supportive Housing Funding

This bill regrettably does not include the increases put forward in President Obama’s 2015 budget proposal for supportive housing programs. Back in February, the President proposed $301 million in additional funding for development of new permanent supportive housing (PSH). These new funds were projected to continue the program on a trajectory to end chronic homelessness by 2017. The President’s budget also called for a $25 million increase for the HUD Section 811 Project-Based Rental Assistance (PRA) program which supports the lowest income people with long-term disabilities to live independently in the community. The spending bill did not include either of these requests and instead provides only enough funding to renew the operating subsidies associated with existing PSH units in both programs. The bill does include an additional $75 million in funding for new rental vouchers for supportive housing for veterans experiencing homelessness under the Veterans Affairs Supportive Housing (VASH) program.

Veterans Funding

The U.S. Department of Veterans Affairs (VA) medical services are funded for 2015 at $45.2 billion – which will provide care and treatment for about 6.7 million veterans.

This funding includes:

  • $7.2 billion in mental health care services.
  • $133 million in suicide prevention activities.
  • $229 million for traumatic brain injury treatment.
  • $7.4 billion in homeless veterans’ treatment, services, housing and job training.
  • $250 million in rural health initiatives.

The bill also includes $209 million to help address new costs related to the Veterans Access, Choice, and Accountability Act of 2014 (VACAA) – such as hiring medical staff and expanding facility capacity – and to implement the Caregivers Act, which provides stipends and other assistance to families of seriously wounded veterans.

To assist the VA in meeting its goal of ending the disability compensation claims backlog by the end of 2015, the bill includes $2.5 billion for the costs of processing disability claims. This level is a $69 million increase from last year. Language is also included directing that $40 million of the increase should be used to support digital scanning of claims, to hire additional claims processors in regional offices, and for the centralized mail initiative. Funding for the Board of Veterans Appeals is increased by $11 million for a total of $99 million to address the looming appeals backlog.

Finally, the bill contains $58.7 billion in advance fiscal year 2016 funding for the VA – the same level provided in the House budget resolution. This funding will provide for medical services, medical support and compliance, and medical facilities, and ensure that our veterans have continued, full access to their medical care.

Want to become a NAMI Advocate? Sign-up for alerts so that you can raise your voice and help NAMI make mental health a priority in the halls of Congress and beyond!