Why America Should Expand the Excellence in Mental Health Act: A Survivor’s Tale
Most babies need to be weaned off their mother’s breast milk. When I was six years old — no longer a baby, but still a child — I had to be weaned off morphine.
It was a rude entry into the world.
You wouldn’t know that’s how it started if you saw me today. You’d probably think: partner, mother, dog lover and gardener. Someone who’s confident leaving the house or traveling for work. You would see a friend and a community member, holding her head high. And you’d be right. But just beneath the surface lurks something more complex, maybe more uncomfortable. The kind of thing that lurks below the surface of any number of people you or I know — or think we know.
That thing is mental health, and with Congress debating the Expanding Excellence in Mental Health Act right now, it’s something the nation is finally talking about honestly and openly, decades after too many were too ashamed to speak frankly about their struggles.
I know that I was.
As a small child I withstood significant medical trauma, and from the age of 3 to 6, I was in and out of hospitals. Things were different then. There were no basketball players or movie stars coming in to see me.
I was left alone in a steel crib, able to get a peek at my parents and two brothers only briefly in the morning and in the evening. After one particular surgery, I was given morphine and realized that it took every kind of pain away. I became addicted at the age of six — and what was supposed to last a few weeks instead continued for decades.
From ages 7 to 13, I didn’t fit in anywhere, something I called being “othered.” This was not typical preteen angst, but a feeling of genuine separation; of being adrift from peers, classmates and even family based on real trauma.
I come from a family where we had most of what we wanted and everything we needed. To other families in the small, rural North Carolina town where I grew up, I’m sure everything seemed fine. But, even as a child, I knew that what was behind the white picket fence was more uncomfortable, more complex and more chaotic.
My mother struggled with significant mental health challenges. She wasn’t able to provide the care and nurturing I needed as she herself plunged deeper into mental and emotional distress. My father tried to be as supportive as he knew how to be, but was preoccupied with trying to support my mother through her illness. I was devastated to watch my mother not be able to get appropriate care for her own illness and felt hopeless knowing she couldn’t help me as I struggled with similar challenges.
Even as a teenager, I knew the system was not built to help us. From my own experience, I knew it was not built to help me. I saw only one way out; at 13, I attempted suicide for the first time.
“Suicide attempt survivor” is not tattooed across my forehead. The face of mental health — and of those with mental health challenges — is not the face of my mother or me. It’s not the face of the Orlando or Dallas shooter, the Newtown shooter or the Rosemont shooter. It’s the face of every American. While all of us might not be struggling, many of us are. If you’re not struggling, you likely have a family member, friend, neighbor or colleague who is at a point of desperation.
After my first suicide attempt, I knew when I returned to school that the system wasn’t capable of fixing me. It was as if my mind had been hardwired to the way things were when I was in the hospital — ‘here, have a shot, it’ll make you feel better’ — and it opened the door to another ten years of disillusion and dissolute behavior. I was in trouble all the time, getting involved with drugs. I allowed myself to be put into dangerous situations and was beaten and raped. Compounding the trauma from these events, the police officer to which I reported the rape refused to believe me. During that decade, I attempted suicide eight more times and was admitted to psychiatric hospitals as many times. Nothing helped.
Still, I wanted to get better. I desperately did not want to feel what I was feeling. At age 24, I couldn’t endure another effort to end my own life.
What I wanted more than anything was to have someone I could talk to about the psychological pain I was experiencing. When you spend most of your life wanting to die, it is hard to take in all of the reasons to live. Wanting to live is a habit that develops over time. I’m pretty determined, and I started looking for connections with people who had had similar experiences. With hard work, I found people in my community who believed in me. People who looked beyond my past and believed that there could be something different for my future.
In one intensive workshop with a group of peers, we did an activity where we would tell our life story. Over time, this activity helped me to recognize and acknowledge the inner strength it took me to keep trying to improve, even when I was feeling desperate. What changed for me was learning that it is not another person’s responsibility to help me, but to support me as I find my way. It enabled me to start using my own personal strengths to develop the skills, gifts and talents that I have today.
That is empowerment.
What is dawning on America is that a comprehensive national effort to treat mental illness is desperately needed. As states are starting to define Certified Community Behavioral Health Clinics (CCBHCs), there is a new opportunity for people to access and experience community-based, safety-net mental health and addictions treatment. In January, the Secretary of Health and Human Services will select eight states that will be able to demonstrate how services offered through CCBHCs — individualized services that include care coordination and are trauma-sensitive — can improve the treatment and recovery experience for people like me.
It was not just traditional treatment — show up, get a diagnosis, get medication — that made the difference for me. Early on, medication did help to lift my depression, but I sometimes felt like a guinea pig with all of the combinations I was prescribed. I eventually found a good psychiatrist that listened to me, incorporated alternative therapeutic modalities and prescribed medication in a personalized way.
Our mental health is equally as important as our physical health. I should be able to access mental health services in much the same way I can access services for any physical condition. And I should be able to do so without fear of discrimination, without fear of lesser services than what I was being provided for physical ailments.
If I were seeking treatment today, I would be looking for a central place where I could receive peer support services in addition to other options. My expectation is that the therapists I saw would be skilled and knowledgeable about trauma and that there would be trauma specific treatments.
That diverse combination of services is the essence of the CCBHC, and why I know that the Expanding Excellence in Mental Health Act — which would triple the number of states participating in the national demonstration program — is the right model for America. It will empower people to take responsibility for their own wellness in their own communities and provide them with the support they need to get there.
We also need to look at the entire chain of trauma — especially the impact of early childhood trauma, and how more often than not, children don’t just “get over it.” Early childhood trauma is not only from neglect. It’s not just from sexual abuse. It can germinate through simple dysfunction in the family, through poverty, racism, bullying and even a natural disaster. Its effects will grow like a cancer unless it is treated.
I was lucky to get treatment and to survive; many can’t – and don’t. There is still so much stigma, internal and external, as well as blatant discrimination to those of us who are challenged with mental health issues.
I want other Americans to know what it’s like to find a second chance. Today, I have four children, one granddaughter, two undergraduate degrees and a master’s in social work. I’m also a recent widow. Had the loss of my husband occurred twenty years earlier, I wouldn’t have been able to manage that level of distress. I am ever hopeful and optimistic. I have the opportunity to work with some of the most amazing organizations, the most amazing people; those whose hearts and souls are invested in making a difference. There’s so much passion around providing people with the support that they need. It’s why I get up in the morning: I get to be part of making that difference, and watching that difference being made in communities around the country.
The thing with suicide survivors like me is that we wish we could stay and not be in such pain. If we could find a connection within the community, our families, or ourselves, our lives would be richer and worth living.
Had there been CCBHCs years ago, they could have saved me from decades of distress and helped me to find those connections. I believe they will now be able to help so many other Americans find theirs, too. By allowing each of the 24 planning grant states to participate in the demonstration program, Congress could expand capacity of the behavioral health system to care for more Americans.
Forty-five years ago, my mother was not able to get access to the kinds of services that today’s CCBHCs offer. She died in 1991 as the result of medication mismanagement by her psychiatrist. For her memory and the futures of so many we can help today, it is one of my greatest wishes that America will pull together and work to ensure the expansion of the Excellence in Mental Health Act. I hope it can become yours, too.