Loving Our Daughter Is Not a Choice, Just Like Who She Truly Is

By Annette, NAMI Western Slope (Colo.)

Simone Sneed speaking in NAMI’s LGBT Recovery Perspectives
Video.

Last winter, my family and I received a great blessing: we were introduced to NAMI. After nearly five years of isolation, we finally found a place of support for my daughter’s mental illness. We are so grateful for NAMI’s acceptance and compassion. Because of our experience, I am pleased and honored to volunteer for my affiliate, NAMI Western Slope in Grand Junction, Colo. I have a deep desire to work with members of the lesbian, gay, bisexual and transgender (LGBT) community who have mental illness and their families, an aspiration that has grown out of witnessing my daughter Adrian’s development of bipolar disorder and schizophrenia hallucinations in addition to the struggle of being born transgender.

My husband and I have three grown children and until May 2008, we thought we had two handsome sons and a beautiful daughter in the middle. As our youngest son, James, grew he constantly said and did things to make us laugh and we all loved him more than can be put into words. Out of the blue, at just 3 years of age, he strongly insisted, repeating over and over, “Don’t call me James, I’m not James. My name is Adrian!” Sadly, we did not understand that he was trying to tell us that not only was his name Adrian, he was really a she. So we only honored this request for a little while and then went right back to calling him James. He gave up and we never thought about it again. Little did we know that his battle had just begun.

During his early years, James gave us more clues that he was a transgender child but we overlooked them. To us, he was just a sweet little boy. We recognized the importance of gender neutral play, so we thought nothing of his love for dressing up in dresses and costume jewelry and playing with his sister’s Barbie Dolls, because he also loved to play with Star Wars toys, Ninja Turtles and everything else little boys enjoy. However, a defining moment came one afternoon when he was 9 years old: James announced that he was finished playing with boys. This was a mystery to us because it seemed so inconsistent with his life. He was well-liked by his peers, spent most of his free time playing with friends and participating in sports. For the next 11 years, we were proud to see our child do well in school, continue to make us laugh and never get into trouble or act out.

They say that if a frog is placed in boiling water, it will immediately jump out to save its life, yet if the same frog is placed in tepid water that is gradually heated, it will not be able to perceive the danger and eventually be cooked to death. People are often unwilling or unable to see significant changes in their lives if these changes occur slowly over a long period of time. What we didn’t realize was that when James, who we now know as Adrian, announced that she was no longer going to play with boys, she was already in the pot of water that had been heating up since she was 3 years old. She gradually shut herself off from life as the water became hotter and hotter. This can influence the mental health of our LGBT loved ones: the stress of constantly having to hide who they truly are and conform to what their families and society expect them to be is the pot of water that heats up through the years to such a scalding degree it causes them to either break or die.

It took Adrian until she was 20 years old to tell us her truth. Those of us who love her could tell that the light in her eyes was slowly dimming. We just didn’t know why. We didn’t know that she was petrified of coming out because when she looked online for answers, all she could find were stories of abandonment and sorrow, so she drank alone in her room to dull the overwhelming pain of holding in her secret. We could not see the wounds she hid beneath her jeans from cutting herself with a utility knife, a way she found to ease the frustration of having her male body develop in a way that made her hate herself. We didn’t realize that she anguished in silence because she didn’t want to “disappoint us” or that she thought of herself as a “freak” because she had never met anyone else who shared her feelings. We had no idea that she tried to kill herself three times and the only thing keeping her from it was her concern for me—she didn’t want me to have to clean up the mess.

Adrian’s experience is not unique. In fact, compared to many, Adrian is one of the lucky ones. In the last five years, I have met many LGBT individuals whose families have kicked them out of their homes and disowned them, who face discrimination wherever they turn, making it difficult for them to secure employment. They feel lost and abandoned by the people they love and the communities to which they long to contribute, leading to homelessness, alcoholism, drug addiction and suicide. This needless distress could be stopped if only we as a society recognized that being a member of the LGBT community is not a choice or a lifestyle or something a person decides to be. It is innate, just like the color of your eyes. As parents, siblings, neighbors, co-workers and friends, it is our duty to treat LGBT individuals with respect, kindness, consideration and love.

Additionally, we must all recognize that being lesbian, gay, bisexual or transgender is not a mental illness, although the increased stress and social stigma that accompanies being LGBT affects mental health. This fact is so beautifully illustrated in NAMI’s LGBT Recovery Perspectives Video.

Adrian experienced severe depression and social anxiety for most of her teen years, even though she hid it very well. After coming out, she experienced PTSD and she eventually also received the diagnosis of bipolar disorder and schizophrenia hallucinations. If our society could only understand that LGBT individuals come by who they are naturally and embrace them, my daughter would not have had to endure all those years alone.

Since coming out in 2008, Adrian has graduated cum laude with a degree in sociology, received gender reassignment surgery and excels at her job that she has had for two years, all the while learning to manage her mental health issues. I will be forever thankful for NAMI Western Slope for reaching out to me and to Adrian. Being part of our local affiliate gave us hope. Moreover, we are excited to see local NAMI support groups starting for the LGBT members of our community.  

I strive to help our society understand the millions of talented, hard-working, intelligent, loving and wonderful people who are part of the LGBT community and also need support for mental illness.  I am so very grateful NAMI is reaching out to the LGBT community because it truly is a matter of life and death: it is instrumental in saving lives.

Editor’s Note:  During June, we observe Pride Month in honor of LGBT communities and allies. It is an important time for NAMI members and our partners around the country to consider the mental health challenges facing individuals, particularly youth, who “come out” about their sexual orientation or gender identity. Read HHS Secretary Kathleen Sebelius' statement on LGBT Pride Month. Share your own perspective and experience through NAMI's You Are Not Alone campaign. We also invite you to view our new video encouraging NAMI leaders to consider this community in our organization's inclusion and support.

To Peer or Not to Peer

By Livette Porter, NAMI New Orleans

In September 2012, I was sent to Baton Rouge, La. to attend the NAMI Peer-to-Peer training class. I attended this class as I am a person who does what I am told to do and I am a "team player." Since I had no previous experience with Peer-to-Peer, I used to think, what's the point of all this training anyway? How much could it really help?

I found myself in a class with about 15 peers. I soon found that the training was very informative but also intense. The instructors were very good in explaining various things to us. During a part of the class (I think the part of the class where we think of a safe area), it brought to memory something that had recently happened and it hit a nerve. I started quietly crying in the class. I heard the instructor through my hands tell the class to let me cry as long as I needed to. After my good cry, I was able to move on.

I could go on and on about all the things in the class, but the part that stuck out to me most from the Peer-to-Peer training was something called the Relapse Prevention Grid. The Grid is complex and involves different things about our feelings, thought, how we have taken care of some of our problems, and options of how to do the opposite of what we have done in order to arrive at better solutions. In the Grid I had filled out, I had mentioned things such as having to deal with Hurricane Isaac, losing my $200 disaster relief food stamp card and my wallet and not be able to replace either of them, and avoiding to look at myself in the mirror.

While attending the class, I had a great deal of rage and repulsion boiling around inside unable to come out. During the class, I felt I was the most repugnant, repulsive creature ever to have lived on planet Earth. I relayed this to my classmates and they were shocked to hear this and they told me I just couldn't see it at all. The last column in the Grid was about doing the opposite of what I had done in the past. The information in my last column was to start walking to get rid of my anger and to face myself in the mirror and take a good look.

Our class ended on Sunday afternoon. The next day, I faced my worst fears and took a good look in the mirror. I thought, hey, I'm not as bad looking as I thought. In fact, I thought, hey, I have a lot to work with if I only try. I then got out my hair care products and my various cosmetics and went to work. After I finished, later that day, someone didn't even recognize me at all (they thought I was a total stranger).

Also, I came up with the idea to start a fitness program. I knew I had to be very careful as I weighed about 278 pounds at the time. Too much exercise too soon and I could give myself a heart attack. Now let me tell you something, for about two years, various professionals had been advising me to do some sort of physical activity for my health. I used to hem and haw and come up with practically every excuse in the book as to why I couldn't (or wouldn't) exercise. Exercise seemed so BORING at the time. With my new fitness plan, I started off very slowly. September was one lap (1.8 miles) around Audubon Park in New Orleans one day a week; October was one lap two days a week; November was one lap three days a week; December was one lap four days a week. During December, I had a major setback. In my right knee a ligament or tendon "flared" up severely. I had to completely rest until my knee healed.

In January 2013, I was back at it. I’ve been slowly increasing how much I do each month. Since the last week of March, I have been doing two laps four times a week. I am weighed each week and measure myself with a tape measure about every two months. I have lost about 8 lbs. I feel I would have lost more weight, but that my metabolism is slower due to my age (54) and my medicine.

No matter what, I am determined more than ever to keep up my fitness program. In fact, I have an award system in conjunction with my fitness plan. I even have the beginning ankle weights as I plan to start weight training in July 2013. I even have a person who trains with me now. I also teach an exercise class one or two times a week at NAMI New Orleans as needed to my fellow peers. I feel so very strongly about physical fitness now. I am even planning on participating in 5Ks starting in June 2013. My first one is a bridge race with a walking division.

In the end all I am trying to say is thank you for NAMI Peer-to-Peer training and thank you for allowing me to be a peer to my peers.

Mental Illness: Let the Dialogue Begin

By Mike Fitzpatrick, NAMI Executive Director

On Monday, June 3, President Obama hosted a White House Conference on Mental Health. It was remarkable in several respects.

For one, President Obama, Vice President Joe Biden, celebrities Bradley Cooper, Glenn Close and other participants were all singing the same song—articulating messages that could have been taken from NAMI’s own website. In fact, some of them were.

NAMI members were thrilled, for example that the conference website www.mentalhealth.gov includes a NAMI video with poet, author and advocate Yashi Brown—who also participated in the conference.

The President’s remarks proclaimed a goal of bringing mental illness “out of the shadows,” ending stigma and elevating mental health concerns to the level of a national dialogue. 

The conference was not about preaching to the choir. Leaders from the mental health community participated, but so did representatives of broader communities such as the Boys and Girls Clubs of America, the National Baptists Convention, U.S. and Save the Children—and social media leaders such as Facebook, Google, Upworthy and Web M.D.

The conference also a represents a new model—in which  the dialogue begun at the White House event will purposely extend over time to other communities in other places. The initiative is not branded—neither the presidential seal, the NAMI logo nor the imprint of any other organization appears on the website. The identity is simply “the national conference.” The goal is a broad national movement for change.

The White House released a list of list of initiatives that specific groups will undertake as part of the dialogue, including one in which NAMI is partnering with the National Panhellenic Conference (NPC) and North American Interfraternity Council (NIC) cited by the White House to deliver mental health education presentations on approximately 800 campuses starting this fall.

The National Association of Broadcasters (NAB) which represents television and radio stations and networks, will launch a national public service announcement (PSA) campaign to combat stigma.

One of the purposes of any conference is to bring people from diverse background together, focus on a common interest and both build and energize a broader community

The White House conference accomplished that purpose. At one point, as I sat a break-out session with eight other people, I was gratified to realize that three of them already had connections to NAMI in some way. With our grassroots network of NAMI State Organizations and NAMI Affiliates nationwide, we are well-situated to influence the dialogue—as the largest grassroots mental health organization in the country.

The conference was historic, but we must keep it in perspective.

Talk precedes action. The role of conferences is to help stimulate action. But they are not a substitute for action.

The real challenge is to expand awareness and support for improving the lives of individuals and families affected by mental illness. That means creating a mental health care system that is truly accessible to all who need it, when they need it.

In 2000, President Clinton convened the first White House Conference on Mental Health. In 2003, President Bush created a Presidential Commission on Mental Health.  They resulted in some progress, particularly in enacting mental health insurance parity.

But there is still a long way to go.

The White House Conference recognizes that real change happens through communities.

It is a call to keep building on progress. It is a call to build new partnerships and to expand health care—including Medicaid, which NAMI recently highlighted in a special report.

It is a call for support of young people, veterans, and families affected by mental illness.

It is a call for scientific research.

It is a call for early identification and treatment.

Ultimately, it is a call for national investment.

Let the dialogue begin.

Providing Hope Through Music

By Kyrsten Roseman and Kourtney Roseman

Adversity has a way of refining a soul. The hands of despair and pain reach inside and although grieve you, they also somehow renew. I am sure to some that sounds a bit dark but ponder for a moment all your past struggles and proceed to ask yourself, “How did that affect me?” Most likely the answer is: strength. Our trials make us stronger. The battles revive our yearning to be victorious; to overcome.

Watching our father, Glen, walk the rigorous journey of mental illness has cultivated a drive to be artists of honesty. We, The Rosies, have no interest in sugar coating our lyrics just to satiate the popular opinion. However, we are passionate about depicting the human condition in its entirety. Joy and sadness, blight and strain, happiness and sorrow are all part of life and each of those emotions wind their way through our music.

Mental illness is a serious matter, far too often silenced and/or ignored. The time is now to rise up and speak out. Together, we wrote “Silently Suffering” to be an anthem for the many people struggling. The song begins with a portrayal of the early stages of depression, progresses into a life fraught with loneliness, builds into a bridge of encouragement and support, and ends with the hope that no one has to face affliction alone. The depth of this composition is credited to mental illness and the difficult but successful life our father and family have endured.

Many times, losing ourselves is the greatest fear. You hide behind drugs or alcohol for fear that medication will change you or take away your artistry and vigor. We have poignant reason to believe that outlook is false. Our father has not only been a poster child for faithfulness and dedication to staying well but has also maintained his creative mind. Working every day in a company he and our mother, Joyce, developed proves your gifts and talents are valuable. Strung up, a line of recycled guitar string jewelry has become an engine for change, a vessel for awareness. We are advocates for mental illness and herald our support by wearing and sharing the jewelry. A portion of all proceeds are donated to our non-profit, Concerts of Hope and every performance is just another platform to spread the word.

As Aldous Huxley said “After silence, that which comes closest to expressing the inexpressible is music.” We whole-heartedly agree. Music should be robust with depth, meaning and substance. We believe our talent is not only our voices or writing, but our ability to relate, reach out, and remind our listeners that light will filter in, darkness will not last, and hope is every bit tangible and alive.

To discover, listen, or purchase The Rosies music visit http://www.facebook.com/therosies.

NAMI Family-to-Family Gets the Recognition it Deserves

By Teri Brister, NAMI Director of Content Integrity and NAMI Basics

The recent announcement that the NAMI Family-to-Family program is now listed on the National Registry of Evidence-Based Programs and Practices (NREPP) is an accomplishment that everyone connected with NAMI should be proud of. It represents a journey that is not unlike the personal journeys that many of us have lived; the journey from obscurity and feeling lost while trying to find our voice to becoming a confident and effective advocate with a knowledgeable commitment to our common purpose.

NAMI grew from the grassroots need for support and information of family members of individuals living with mental illness. In an effort to meet some of those needs in a consistent, replicable way the Family-to-Family Education program was developed by family member and psychologist Dr. Joyce Burland more than 20 years ago. The program was designed to provide scientific information about the illnesses, research on the latest treatments available and specific skills that would be helpful to families navigating the day-to-day challenges that develop when someone has a mental illness. The truly unique feature of the course is the fact that it is provided entirely by volunteer family members who are trained to channel their invaluable personal lived experience and use it to augment the course curriculum to provide participants in the class not only with information, resources and skills, but with the much needed support, empathy and wisdom that is not available elsewhere.

Just as many of us have consistently stayed the course of our journey to find our way through fragmented treatment systems and the public scrutiny associated to mental illness, the Family-to-Family program has continued its gradual expansion across this country and three others; quietly meeting the needs of family members by letting them know that mental illness is no one’s fault and that they are not alone. These two messages are consistently listed by participants as the most valuable components of the course.

The consistent expansion of the Family-to-Family program has been possible because of the hundreds of committed teachers, trainers and program coordinators who have never given up on taking the phone calls, distributing posters and flyers and raising money for printing program manuals for participants—because NAMI programs are always offered free of charge to participants.

These volunteers have continued to provide the course, year after year, based on the structured curriculum and the co-teacher model in which they each received extensive training. It is this consistency and fidelity to the course model that have allowed the rigorous level of research necessary for the Family-to-Family program to attain the level of credibility that comes with being listed as an “EBP” on the NREPP.

This listing is indeed a milestone in the journey of the NAMI Family-to-Family program. The national recognition of the effectiveness of the course brings a level of credibility that will only enhance the value of a program that we at NAMI have been aware of all along. Whether you were part of one of the three research studies that were conducted on the course; a Family-to-Family teacher/trainer/coordinator; someone who has taken the course; someone whose family has benefitted from the course; or someone who has raised money through a NAMIWalk to help fund the course, you should feel very proud. The pride that comes from being part of a program developed by family members, for their peers to learn from each other in a supportive environment is one that should be shared. The pride that a grassroots mental health advocacy organization now has a program which is listed alongside other well-known mental health programs and interventions, most provided by professionals, is an accomplishment.

The NAMI Family-to-Family program has not only found its voice but that voice now carries an air of credibility that will allow it to be heard with a new level of respect from mental health providers and policy makers for the family members who make it all possible.

Trauma Healing and the Importance of Family and Compassion

By Connee Gorman

Three years ago I left the corporate world to advocate for individuals living with mental illness. And my decision to “come out” as a person with a mental illness has been essential to my work. Advocating has helped me accomplish things I did not know I was capable of. (A wonderful surprise at the age of 60!) One of those things is becoming a children’s book author! I have finished two in a series of five books. My first is focused on bipolar disorder within a family. And my second is about trauma, I Need Dad and Dad Needs Me (a loving lesson about posttraumatic stress disorder (PTSD) for families).

In the book, the main character is a little boy named Hank. Hank’s dad has returned from Afghanistan and is showing signs of PTSD. Hank starts to notice and has a healthy concern about his Dad. They talk, share their fears and physical reactions and through this they come to understand that healing can happen.

We all know there are an incredible number of men and women in our military who are living with (PTSD) and more will be diagnosed. Speaking realistically it is impossible for all of them to get the proper amount of care and type of care they need. I saw a way I could make a small but important contribution toward trauma healing. Because PTSD affects every family member, I decided to write my book for families: to open up a discussion about how PTSD is affecting them.

The discussion begins about what PTSD means to their family and most importantly taking that giant step toward compassion and support and love needed for traumatic healing.

In fact, it is an example of the goal of one of NAMI’s signature programs! The NAMI Family-to-Family education program has proven the importance of a family support system. (I am honored to teach this class that is designed for caregivers of individuals living with severe mental illness.) The 12-week program teaches family members strategies for handling crises and relapses and provides up-to-date information on medications, mental illness and support groups and services within the community.

Shortly before I wrote this book, I also discovered a trauma healing technique called Somatic Experiencing (SE). While forms of talk therapy work for some, for me it only seemed to make me relive my trauma. Somatic Experiencing is a body-awareness approach to trauma. I greatly respect SE because it is compassion based and asks the question “What happened to you?” and not “What is wrong with you?”

My goal is to become a SE facilitator within the next three years and hopefully focus on our veterans. (Yet another way I am surprising myself!)

Memorial Day is one of gratitude to our past and present armed services. But that gratitude must be shown every day. We must show this gratitude by doing everything we can to support these men and women in healing and becoming whole once.

Connee Gorman is a mental health advocate, educator and author of I Need Dad and Dad Needs Me. Her website is www.conneegorman.com.

Share Your Strength. What Songs Inspire You?

By Bob Carolla, NAMI Director of Media Relations

I always hesitate to write about music. It tends to date me. My kids roll their eyes whenever I mention the 1970s, let alone folk rock. In the car, there’s a constant battle over which radio stations or CDs to play.

Every now and then, however, there’s a song that resonates and bridges the generational divide. These days, the song is "Carry On" by the band fun. It strikes a chord somehow with teenage angst and inspires my own kids to rally forward.

If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on

“Carry On” strikes a chord in me as well, rooted in past battles with depression. Its message is an exhortation, a call to arms and an affirmation of faith. It also has caused me to remember the song that touched me when I was 16 years old—long before I learned that my moodiness was only a hint of worst things to come. Arlo Guthrie sang Somebody Turned on the Light, which is partly about coming of age in the tumultuous decade between 1961 and 1971.

When the world is wrong better right yourself
It'll make the dark clouds fly
Nobody tall can put out the lights
Just don't let the spirit die
If you never see the sun till '91
Don't you ever give up the fight
Sure be glad when you see the dawn
Somebody, somebody turns on the light
Somebody turns on the light.

Other songs reflect the same theme. In 2001, Gospel singer Yolanda Adams’ "Never Give Up"  was a call for personal perseverance, but also provided encouragement and hope to a stunned, grief-stricken nation after the terrorist attacks of 9/11.

An important distinction is that such songs are inspirational in nature, encouraging listeners to draw on inner strength. They don’t wallow in sadness or pain. I’ve always liked Gilbert O’Sullivan’s  “Alone Again (Naturally),” but face it, the fact that in the lyrics, he is on his way to throw himself off a tower doesn’t do much for inspiring a person to hold on.

From a biological perspective, music can calm stress and elevate mood by increasing levels of serotonin or dopamine in the brain. Music can literally lift and energize a person’s spirits, helping to overcome anxiety or depression.

Tunes and lyrics also stir memories. Music from a pleasurable time and place can therapeutically put people living with depression “back in touch” with important parts of themselves, helping to pull them out of isolation inside their own minds.

Thirty years ago, I was struggling with depression, unemployed and disconnected from most of my friends who lived in other cities. Turning points in my recovery came when a close college friends stopped for a night en route from Vermont to Michigan. As we talked into the night, he put one of my records on stereo—Abbey Road by the Beatles—which we had listened to many times together several years before. One song was particularly apt:

Here comes the sun
Here comes the sun, and I say
It's all right
Little darling
It's been a long, cold lonely winter
Little darling
It feels like years since it's been here

In that moment I realized that it had been over a year since I had listened to music for music’s sake. It had been part of my withdrawal from the world and suppression of my energy and strength.

Turning the music back on helped turn me back on.

It doesn’t matter what decade you’re from. Carry on. Don’t ever give up the fight.

Share your strength.

Tell us the songs that inspire you.