Morning Zen Guest Blog Post ~ This Zen Moment brought to you by Kimberley Blaine, former employee at CII ~
Mary M. Emmons, President and Chief Executive Officer of the Children’s Institute Inc. (CII), is retiring after many years of dedicated service. For 35 years of her career, Mary oversaw the operations of CII, a Los Angeles-based child welfare agency with more than 47 programs dealing with child abuse prevention, treatment, and training.
A graduate of The University of Chicago, Mary has a background of more than 40 years in government and nonprofit health and children’s services including positions with HeadStart, the U.S. Office of Child Development, City of Chicago Model Cities Program, and the Daniel Freeman Hospital Medical Center.
After joining CII in 1981, Mary expanded its capabilities to create a comprehensive, community-based continuum of services for children and families and a training center for professionals working with abused children.
Mary proved herself to be a quiet leader whose brilliance had a positive impact, improving services and support systems for the families of children with mental health challenges. From effecting changes in policy, childcare and advocacy efforts to best practices for mental health services, Mary was the pillar of strength that stood behind over 900 employees at CII.
When you meet Mary, you quickly discover she is a fierce advocate for vulnerable children. For over 18 years I witnessed her assemble top-notch teams of mental health leaders. Watched as she led policy summits, approved and implemented best practices for in-home and foster care services and developed state of the art early childhood mental health teams that would change the way we viewed mental health forever. Through the development of innovative projects addressing child sexual abuse, therapeutic day care and perinatal substance abuse, Mary pioneered new methods of preventing and treating abuse that are now considered models throughout the nation and the world.
There was never a dull moment for Mary at CII. She was so busy that if you wanted to see her but didn’t have an appointment, you’d never get in. Your only option was to wait in the hall and chase her down as she headed to her next meeting. If you were able to get into her office, it surely meant you’d have more work when you walked out for she was the golden goose of delegation. However, if you had a problem, she’d make sure you had the tools and support to find a solution.
Mary was great in crowded events, amazing under pressure and a woman who could navigate the political waters of government entities. What most people don’t know is she loves to travel and loves photography. Her office at CII was adorned with professional-quality photographs she and her late partner, Bill, had taken on their travels around the world. During our weekly meetings, I loved to look at the pictures behind her desk and daydream about traveling as she did. Her photographs made her real—more dimensional. More importantly, they made her happy.
What do you say to a woman who has done so much for the well-being of thousand of families? For all those who have thrived off Mary’s tireless accomplishments, you don’t say a word. You offer gratitude for those who believe that we can all live better and be better while protecting America’s most vulnerable children—which is what she’s done.
Mary, I thank you with all my heart. We at the Children's Mental Health Network wish Mary the best in her ‘next chapter’—for whoever she’s with next is in for real treat.
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Kimberley Clayton Blaine is a licensed marriage and family therapist (LMFT) and is named one of the most powerful moms in social media by Working Mother Magazine. She is an inspirational speaker, author and a nationally recognized mindfulness and positive-psychology thought-leader. Kimberley’s writings have appeared in Wall Street Journal and USA Today Best-sellers as a contributor to the soul healing site of SimpleReminders.com which has over 50 million readers weekly. She was one ofGoogle+‘s first family partners, launching their Online community where parents share and communicate about family life. Today you’ll find Kimberley hosting empowerment retreats all over the country. Her retreats focus on balance and wellness not only for moms but for all women striving to find that perfect mix of mindfulness and empowerment. Kimberley serves on the Children's Mental Health Network Advisory Council.
Morning Zen Guest Blog Post ~ By Eliot Brenner, Ph.D. ~
Two years ago, my wife and I decided it was time for our family to join a church. Our search focused primarily on finding a church where our three young children could learn the values we believed were important. We wanted a church where the congregation was open to differences and accepting of others. Where the pastor and the congregation supported each other and promoted values like integrity, honesty, hard work, charity, and respect for others. It took a while, but we found the right place. And our Sunday worship began.
But it did not last long.
Soon we found ourselves sitting in the pew of another institution: the Church of Children’s Sports. It did not happen overnight. First, our seven year-old daughter joined a town recreational league soccer team. I volunteered to coach her team. In practices and games, I emphasized safety, having fun, and learning soccer skills. The next year, I was assistant coach for my son’s tee-ball team. The team was comprised of seven-year old boys of varying skill levels. As a coach, I taught boys how to catch and hit a baseball, and emphasized supporting one another and being kind and considerate. These are the values I wanted to teach my children.
Then things changed. My oldest daughter, then eight years old, joined a travel soccer team. Practices and games were four days a week. The parents on the sidelines talked more about winning than about teamwork. In close games children who were less skilled spent most of the game on the bench, even though league rules required that all children play at least two quarters of each game.
In the final game of the season, the technical coach became irate with the referee and was eventually thrown out of the game. He was told to leave the field or the police would be called. Several girls on the team were in tears. Surprisingly, I was the only parent that was upset enough about this incident to report it to the league administration. Following this incident, my daughter announced she was done with travel soccer. She would return to the town recreation department league, and pursue other interests in the arts. I was proud of her decision.
A year later, my eight year-old son fell in love with baseball. After deliberating, my wife and I gave him permission to try out for an intensive seven-week baseball league. We knew this would be a strain on the family because practices and games were initially three days a week and progressed to six days a week by the end of the season. Tournaments sometimes involved multiple games on the weekends.
Within a few weeks, baseball games were scheduled on Sunday mornings, conflicting with our church services. I was surprised; I thought there were enough churchgoers that Sunday mornings would be sacrosanct.
In fact, a recent study found children’s sports is the primary reason for declining church attendance. In a related commentary on this topic, the authors said “The idea that Chariots of Fire runner Eric Liddell made it all the way to the 1924 Olympic Games before being asked to compete on a Sunday seems almost quaint.” Some pastors have started offering services on Saturdays. For my family, Saturday is no better than Sunday because both weekend days are filled with sports. For many of today’s parents, there is no escaping the Church of Children’s Sports.
Skipping church to attend our son’s baseball game was in some ways a test of values. On the one hand, we joined a church to be part of a community that reinforced our values. On the other hand, we both appreciated the many benefits of team sports: the development of social skills and social behaviors, self-esteem, and academic and cognitive development.
However, research indicates that these positive effects are mediated by the ways in which coaches, teachers, and parents shape children’s experience of sports. Children need to have positive and enjoyable experiences in which they feel a sense of self-determination and competence.
In other words, the benefits of improved physical and mental health are mediated by the values transmitted by the coaches, teachers, and parents. As parents, we have to be especially aware of the ways in which our children, particularly our younger children, are coached. If it is all about winning rather than developing skills and a sense of competence and self-determination, then many of the benefits of sports may be lost.
The focus on winning at all costs may have additional adverse long-term consequences. For example, the push to excel has led to children specializing in one sport at an early age. Currently, 60 million children in the U.S. play sports each year, and 27% of them play only one sport. A recent report by the American Academy of Pediatrics highlighted the substantial risk of repetitive injuries for children that specialize early.
To reduce repetitive injuries, mental stress, and burnout, the Academy recommends that specializing in one sport be delayed until children are at least 15 years old. Parents often push their children to excel in one sport because they believe it will increase their chances of getting a college scholarship, even though the odds of getting a college scholarship are very slim. This pressure may contribute to the fact that 70% of children drop out of organized sports by the age of 13. The drop out rate is a reminder for parents to focus on the values they want their children to learn from sports: the importance of teamwork, self-determination, and having fun while exercising.
In addition to the risk of repetitive injuries, there is considerable risk of concussion in contact sports such as football, soccer, and hockey. Following on the heals of the National Football League’s scrutiny over their handling of player concussions, the youth football league Pop Warner now faces a similar class action lawsuit.
To reduce the likelihood of concussion in youth sports, nonprofit organizations such as ConcussionCorps offer protocols to help coaches handle concussions and education and advocacy for concussion prevention. For example, ConcussionCorps and the Connecticut Chapter of the American Academy of Pediatrics recommend that children not head a soccer ball before they enter high school.
The risk of concussion in children’s sports is another reminder to parents and coaches to focus on values. To minimize the chances of long-term injury, parents need to ensure that children are removed from play when there is question of a concussion. We all want to our children to excel, but not at the cost of long-term brain injury.
Youth sports is big business: Parents in the U.S. spend $7 billion annually on travel costs related to their children’s travel athletic leagues. Finding the right balance of participation in sports for your child and family is not easy. There are intense pressures to have children compete and win. Sometimes parents feel as though they must have their children play one sport year round for them to remain competitive.
The push for excellence and the time demands on the family of the Church of Children’s Sports can push parents to loose perspective. Focusing on the critical values and skills you want your child to learn from sports can help you maintain perspective.
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Eliot Brenner is a nonprofit executive with 15+ years experience in child welfare, mental health, and philanthropy. He is also a licensed clinical psychologist with a private practice. Dr. Brenner is currently the President and Chief Executive Officer of the Child Guidance Center of Southern Connecticut, which provides mental health treatment, education, and support to more than 3,300 children annually. Dr. Brenner currently serves on the Praesidium National Advisory Council for the development and implementation of national child safety and abuse prevention policies and practices for 2,600 YMCAs that have 20,000 staff and serve 9 million children annually. Dr. Brenner holds a B.A. from the University of Chicago, where he was Phi Beta Kappa and a Ph.D. in clinical psychology from Yale University. Dr. Brenner currently serves on the Children's Mental Health Network Advisory Council.
Amidst the increasingly distasteful clamor that is currently engulfing the presidential campaigns of both Donald Trump and Hillary Clinton, it could be easy to lose site of where the candidates stand on mental health.
Regardless of your opinion about who should be President, if you are a mental health advocate, there are points from both campaigns that bear a closer look. When it comes to ensuring effective services and supports for families who have loved ones with mental health challenges, politics should take a back seat to getting what is best for families.
Bipartisan Reforms in Congress, Strengthening HIPAA – In the one paragraph that specifically addresses mental health, Mr. Trump mentions “promising reforms being developed in Congress that should receive bi-partisan support.” Along with that is a reference to the need for stronger HIPAA guidelines, when Mr. Trump states, “Families, without the ability to get the information needed to help those who are ailing, are too often not given the tools to help their loved ones.”
Medicaid Block Grants – Advocates should note that Mr. Trump also promotes the concept of Medicaid block grants to the states, writing that “The state governments know their people best and can manage the administration of Medicaid far better without federal overhead.”
Alarming Views on Mental Health by Campaign Leadership – Perhaps the most troubling statement concerning the Trump position on mental health comes not from his Health Care Reform document, but from a sentence in anemail sent by Steve Bannon, CEO of the Trump campaign. In the email, discussing the possibility of getting behind Paul Ryan’s efforts to overhaul the mental health system, Mr. Bannon nixes the idea and says, “I’ve got a cure for mental health issue. Spank your children more.”
While we don’t know if Mr. Trump shares this position, the fact that the highest leadership in the Trump campaign are making statements like this suggest that mental health advocates who support Donald Trump have an important opportunity to educate the campaign about the complexities involved in mental health reform. Long gone are the days of suggesting that mental health challenges can be dealt with by just “spanking your children more.”
Hillary Clinton Position on Mental Health
Hillary Clinton has produced a 12-page document titled Hillary Clinton’s Comprehensive Agenda on Mental Health. The Clinton plan provides a detailed review of structural changes in the mental health service delivery system that will need to be addressed to achieve true comprehensive reform. A few of the highlights include:
Integration of physical and mental health – Clinton recognizes the critical importance of promoting the integration of physical and mental health, with a strong emphasis on early diagnosis and treatment.
Focus on early intervention – I was pleased to see that in her plan, she is encouraging an increase in the set-aside in the Mental Health Block Grant for early intervention, and even further, moving its status from set-aside to stand-alone program. The only way we will achieve meaningful mental health reform is if we devote the resources necessary to intervening early with a focus on positive mental health.
Expanding reimbursement structures – Clinton astutely recognizes the importance of expanding reimbursement structures in Medicare and Medicaid for collaborative care. We have a drastic shortage of behavioral health providers in this country and creating and implementing new payment models is a must if we are going to support an effective behavioral care workforce to reach those families in most need of mental health services. As well, Clinton calls for supporting the creation of high-quality, comprehensive community health centers in every state.
There are more detailed recommendations in the Clinton plan, but I chose these three as examples that could and should be shared goals across both campaigns.
Advocates supporting Trump or Clinton – doesn’t matter to me. What does matter is that advocates get behind some solid proposals for improving the mental health service delivery system in America. The Clinton plan has some excellent points. Share them widely.
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Scott Bryant-Comstock President & CEO Children's Mental Health Network
Trauma occurs in a variety of forms and to varying degrees. It has a lasting effect on those who experience it. For a long time, I underestimated the effect that trauma had on me.
On April 16, 2007, two weeks after my 21st birthday, I was sitting in class at Virginia Tech when I heard an unfamiliar popping sound. It sounded like gunshots, but I was confused as to why there would be gunshots inside the building. Part of me deep down knew something wasn’t right and that something might be terribly wrong.
Thankfully, several of my quick-responding classmates inquired about the gunshot noise, a few braved the hallways to confirm there was a shooter, and another had the idea to build a barricade with desks and chairs to prevent the shooter from entering our classroom. In just a few seconds, the gunman firing those gunshots was headed for our classroom. During the next twelve minutes, I laid on the floor pushing the desks and chairs against the door while the shooter shot at our door and tried to push it open. Fortunately, our barricade held and the shooter was unable to enter our classroom. Unfortunately, he entered the other four classrooms, killing 30 and injuring 17 students and professors.
When law enforcement arrived and knocked on our classroom door, we didn’t let them in. We were scared and unsure. Approximately thirty minutes later, with greater confidence that the police were who they said they were, we let them in. I hadn’t prepared myself for the tragedy, the horror, and the catastrophe that was all too visible outside my classroom door. I had survived the shooting, and law enforcement came to escort us to a secure location. As I was escorted out of the building, I thought, this has got to be a really bad nightmare.
The days that followed were filled with flowers, candlelight vigils, phone calls and messages from family and friends, and an outpouring of prayers from around the nation. The nights were filled with tears and nightmares. Friends and family told me that I was strong, poised, relaxed, and composed. In my mind, I was anxious, vulnerable, scared, and lonely. How could I tell my friends and family about my feelings of vulnerability when they were complimenting me about my strength? I wanted them to think highly of me. I fooled my family and friends at the cost of my mental health.
In order to push the anxiety and sadness away, I stopped feeling. To stopping feeling means I stopped feeling the “bad” feelings as well as the “good” ones. It is no way to live. I began obsessing about food and exercise. I thought that if I just lost weight, then life would be much better. I created a new problem so that I didn’t have to deal with the trauma that I had experienced.
At the time, I didn’t think my feelings of anxiety and vulnerability were justified. Professors and classmates had died, others were physically injured, and many watched their classmates die next to them. Mothers and fathers lost their children, and brothers and sisters lost their siblings. I didn’t lose a classmate, and I wasn’t physically harmed. I created an imaginary totem pole based on one’s closeness to the shooting and put myself and my feelings at the bottom. I’ve since learned that I’m entitled to my own feelings, regardless of how close to the shooting I was. I didn’t have to be shot to be injured. There is no totem pole of trauma, and there is no good in comparing my experience to others.
I stopped being present because for twelve minutes being present really sucked. I constantly felt vulnerable because for twelve minutes I was really vulnerable. I felt lonely because I didn’t have anyone to talk to. I didn’t share my feelings with others because I couldn’t find anyone who understood what I experienced. Trauma creates a wall between you and anyone who didn’t experience the event with you. I want to tell all survivors of school shootings and other traumatic experiences that these feelings are normal! Don’t push the feelings away because they are telling you something really important – you just have to listen to those feelings to find out what that something important is! I wish someone had told me that nine years ago.
It took me years to admit that I had a problem. I went to counseling a week after the event, the summer after the event, and eight years after the event. It took me three counselors until I found one that worked for me. “I don’t think people understand how stressful it is to explain what’s going on in your head when you don’t understand it yourself” (Instagram @veteranswithptsd). I had to realize that my eating disorder developed gradually over eight years and therefore, it wasn’t going away after one session of counseling. Recovery is not a linear process. There will be setbacks along the way. It takes consistent work, but it is so worth it!
Today, writing and presenting about my personal experience helps me continue in my recovery. I share my story so that I can encourage others who have experienced trauma and may be having similar feelings. Mental health illnesses are nothing to be ashamed about. Seeking counseling isn’t for the weak, but for the brave. The shooting lasted from 9:40 AM to 9:52 AM on April 16, 2007. While 9:52 AM marked the end of the shooting, it was just the beginning of a long recovery.
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Lisa Hamp is a survivor of the 2007 Virginia Tech shooting. Lisa has dedicated herself to sharing her personal experience so that she can encourage others who have experienced trauma and may be having similar feelings. Learn more about Lisa and the work she is doing by visiting her website www.lisahamp.com.
Morning Zen Guest Blog Post ~ John Franz and Patricia Miles ~
Blame it on the Wine As Apollina Smith sat down at the cluster of ancient green, rubber-topped Steelcase tables that had been shoved together for her meeting in the upstairs conference room at Kenyon County Human Services she asked herself, not for the first time, why she had let Cassie Nightingale, the new county executive, talk her into coming back to the county to once again become Director of Human Services. She had been there and done that and had the scars to prove it.
Thirty years ago she had been a unit supervisor and was part of a team that put together the county’s first Wraparound Project. Ten years later she had become the director of the department and wrote the grant proposal that funded the county’s first system of care for families with children who had severe emotional disorders. Ten years after that the great recession hit Kenyon and efforts became focused on efficiency and cuts. Apollina fell on her sword by cutting management rather than line positions. The focus on efficiency and cutbacks continued and eventually placements started creeping up until Kenyon County experienced a full force explosion in out-of-home and out-of-county foster placements and even out-of-state residential placements.
From there Apollina had drifted, heart-broken at what was happening to children and families in her county. For a while, she worked as a consultant. Finally, she took a job managing a child welfare department in a county in Minnesota and assumed that was where she would retire.
But then Cassie, who had been a young and green county board member when Apollina was let go but had grown into a thoughtful and determined change agent, called. Cassie invited her to return to Kenyon to restore stability to the Human Services Department, which had gone through another unpleasant reorganization. As much out of curiosity as any thought that she might take the job, Apollina agreed to at least talk it over.
When she came to town for her initial interview, Cassie took her out to lunch at the Feed Mill, a new restaurant appropriately installed in a restored 19th-century feed mill at the edge of town. The two women shared a bottle of Sauvignon Blanc and a couple of plates of bruschetta on the back deck of the restaurant, looking out over the Kenyon River as it slowly snaked through bottom land thick with goldenrod and milkweed.
“This would give you the chance to finally put your own stamp on how services get delivered in this county,” Cassie had said.
For a few moments, Apollina tried to think of a way to respond to her young friend’s enthusiasm. She didn’t want to sound snarky or condescending, or as old as she sometimes felt. But she had been through so many reforms and reorganizations, innovations and disasters, and just plain ups and downs, that she wasn’t sure she had it in her to take on another challenge. She was no longer under the delusion that there was one, secret, exactly right way to do things. On the other hand, she had also learned the hard way that there were definitely some ways to do things that should be avoided if at all possible.
Finally, undoubtedly influenced by the wine, Apollina had answered, “You know, Cassie, I’ve put my own stamp on a number of things, including a couple of marriages that could have gone better, so I think another option might be to find a way for the people we are trying to help put their stamp on how services get delivered.”
Apollina had hoped that would be enough to knock her out of running for the job, but instead it ignited Cassie’s enthusiasm. A few months later she found herself back in her old offices in Kenyon and preparing to chair her first interagency meeting since her return. Surrounded by well-meaning managers from all of Kenyon’s helping organizations, Apollina wondered why she hadn’t taken her social security and what was left of her pension and retired to a bungalow in Duluth near her daughter and grandkids rather than trying to sell this group on the idea of using a new approach for aligning their services.
After more than forty years in human services, she had come to dread interagency meetings. It wasn’t the people – well, maybe sometimes it was the people – but mostly it was the circular conversations. There were times when she wanted to shout, “Why can’t we all just get along!” But then she remembered that was what Jack Nicholson, playing the president of the United States, said at the end of his speech to the Martian leader in the movie Mars Attacks, just before the Martian used a mechanical handshake to skewer Jack and declare victory over Earth.
When everyone was settled, Apollina looked out at the apprehensive faces around the table. Each person seemed to be wondering what new disaster she would inflict on them. So, instead of an agenda, she reached behind her and brought out a cake to share.
As she uncovered the still-warm pineapple upside down cake topped with golden rings of glistening fruit, each with a bright red cherry in the middle, Fred Armisen, the city of Kenyon’s police chief for the past 30 years, inhaled deeply and said, “If you are trying to bribe me with that cake, Apollina, you are succeeding. I don’t care what you’re up to this time, just give me a piece and show me where to sign.”
Apollina began cutting pieces of cake and passing them around the table. When everyone had some, she said, “Fred, this is not just a cake. It is also a diagram for our new system of care.”
“Mmph,” Fred said as he put the last forkful of cake in his mouth, then slid his plate toward Apollina. “That works for me as long as I can have just a bit more.”
Apollina knew less than a third of the group from her earlier days in Kenyon. From the apprehensive expressions on the new faces around the table, she knew she only had a couple of minutes to engage them.
“So, how many of you have made a cake like this?”
A few people raised their hands. Apollina nodded toward Augustus Waters, a young psychologist who had recently become the director of the community mental health center. She asked him, “What’s the secret to making a good pineapple upside down cake?”
“It’s not so much a secret, as just thinking about the cake from the bottom up,” he answered. “You mix your glaze and put it in the pan, then you set in the pineapple rings and cherries, and finally you pour the batter on top. You want to cut your pineapple slices thick enough to hold together during the baking, and your batter needs to be just the right consistency so that the crumb is light but firm.” He took a bite and then added, “I have to say that if this was a baking competition, you’d get a blue ribbon. But I’m not sure how a cake is going to help us straighten out the service systems in this county.”
Apollina smiled. “Good point, Gus. Even though I do believe that a good piece of cake can cure a variety of ills, in this case, the cake represents a new approach that I hope can bring some energy and direction to the work that we’re all trying to do.”
“Oh, it’s a metaphor,” said Hazel Lancaster, the lead public health nurse. “In that case can I have another piece of metaphor?”
With that, Apollina felt the ice was broken sufficiently for her to dive into her proposal.
Systems of Care Are Good Things, Except… “Raise your fork if you are tired of building systems of care here in Kenyon County,” Apollina said, and saw raised forks and suspicious looks. “And yet how many of you wish we had a better way of working together when people have complex needs?”
More forks were raised, and the expressions changed to a mix between curiosity and incipient boredom.
“Okay, so what are the problems with the systems of care we’ve had over the years, including the one I helped put together in the nineties?”
Slowly, the answers came out:
“We spend more time talking with each other than with the people we serve.”
“People have to be labeled twice to get help – no one wants to be called a ‘multi- problem family.’”
“No one is sure who’s in charge when we’re supposed to be working together.”
“There’s always a limit on enrollment. We might cap the project at 30, but then there are 50 people who need help.”
“We make up these rules in advance about who’s in and who’s out, but a lot of times we don’t know who needs special help until we get to know them. And if they don’t exactly fit the rules for being in the ‘special help’ pool, we’re stuck figuring out how to help them on our own.”
“There are just too many hoops to jump through before someone can actually get some help.”
“The project runs out before the need gets completely addressed. We raise hope only to drop it again when funding or personnel run out.”
“Each of our attempts at having a system of care has only lasted as long as the people who set it up stayed in their positions. Whenever a key member left we were back to square one.”
Apollina listened carefully as each person shared their concerns. Then she asked, “So why do you keep trying?”
Kerry Pope, who Apollina had brought in to resolve issues in the child welfare division, said, “It’s simple. Because when we’ve worked together we’ve helped kids and families have better lives. That would never have happened if we were doing things on our own. What we’ve done may not be perfect, but it’s better than not even trying.”
“So, I think you are saying that systems of care are good things, except when they’re not. Maybe that means we need to build our next one differently,” Apollina said. Then she pointed to the layers in the one piece of cake remaining in the pan. “I wonder what would happen if, like we do with this cake, we started with the pineapples and cherries rather than the batter.”
Shifting to a People First Design “Instead of creating a special but limited space where a group of our service agencies can work together, and then selecting the folks who can be helped in that space,” Apollina said, “we might begin by looking at how needs are distributed in our community and focus on improving all of our agencies’ abilities to respond more flexibly and naturally to complex and changing individual, family and community needs.”
Here’s what Apollina was getting at:
When health and human services planners agree that specific needs in specific communities are their focus of concern and that their task is to begin by understanding the people with those concerns, collaboration becomes people-driven. This means leaders and planners should work to understand people’s experiences of their needs, how the needs are changing over time, what drives the emergence of the needs, where the people with these needs are, how their situations vary, how they are doing currently and what they feel would help them do better. In 1970, one author put it this way in the context of responding to the needs of people with mental illnesses:
“At times like these, researchers are, or should be, thrown back to the first principles of description and classification, trying to see what the mentally ill are experiencing in the world and how they move about and what factors are associated with changes in status (clinical, economic, residential, etc.). Researchers should begin by studying lives: how they change, what remains constant, and most important, how the persons involved (especially the mentally ill person) shape the outcomes of interest. If we do not return to these first principles of social and clinical science, we face the unflattering possibility of distorting both the scientific endeavor and the policy-making process.”1
Ten years later, Jerry Elder and Phyllis Magrab offered a similar observation in their ground- breaking book, CoordinatingServices to Handicapped Children: A Handbook for Interagency Collaboration. In the opening chapter, they point out that because the situations they studied “varied so much from community to community, along with the environment in those communities … [t]here is no set prescription or model that can be given or followed in a step-by-step fashion and applied to every community. Each community has its own unique characteristics, needs, political and geographic boundaries, and problems, and its own members are best prepared to address these issues and develop efficient, collaborative service delivery.” 2
This is people-first, or population-based health planning. There are many definitions of a population-based approach. Here’s one example:
“A population-based approach addresses the health care needs of a defined population of patients instead of providing just-in-time illness care to individuals. Population-based health care ensures design and delivery of evidence-based interventions that address the full continuum of care while monitoring performance results and encouraging changes in practice patterns to optimize patient outcomes.”3
When leaders start from a people-first perspective, they expand their organizations’ capacities to flexibly respond to emerging situations, such as teen suicides, frail elderly people with multiple and complex diagnoses and treatment regimens, children in foster homes, or those exposed to lead paint, or families where the parents have told their pediatrician that their children have behaviors that they cannot manage. This approach can also be applied when people in certain geographic locations are experiencing difficulties caused by the impact of local determinates of health, such as compromised and inadequate water supplies, excess heat, lack of fresh food, or the collapse of the local economy.4
The Collaboration Trap In the following decades, the system of care movement expanded until most counties and states in America had some kind of collaborative interagency operation. However, research on the outcomes produced by these arrangements showed mixed results.
For example, eighteen years after Magrab and Elder’s book, Charles Glisson and Anthony Hemmelgarn published the results of a longitudinal study to assess the effect that increasing inter organizational services coordination had on child and family outcomes.5 The abstract of that article summarized the results of their study in this way:
“Findings show that organizational climate (including low conflict, cooperation, role clarity, and personalization) is the primary predictor of positive service outcomes (the children’s improved psychosocial functioning) and a significant predictor of service quality. In contrast, inter-organizational coordination had a negative effect on service quality and no effect on outcomes.”6 (emphasis added)
A year later, Leonard Bickman and his associates published the results of a multi-year study of a large-scale system of care in Ohio that was done as a follow-up to an earlier evaluation of a care coordination system in a federal demonstration project at Fort Bragg. The Ohio study compared youth who were served through the system of care with another group who received services without care coordination. In addition, the authors were also able to track a third group who did not receive any services at all. The abstract of that article summarizes their findings in this way:
“While access to care, type of care and the amount of care were better in the system of care, there were no differences in clinical outcomes compared to care received outside the system. In addition, children who did not receive any services, regardless of experimental condition, improved at the same rate as treated children. Similar to the Fort Bragg results, the effectsof systems of care are primarily limited to system-level outcomes but do not appear to affect individual outcomes such as functioning and symptomatology.”7 (emphasis added)
In 2016 Mick Cooper and his associates published a comprehensive review of the past twenty years of research on the impact of interagency collaboration. They initially examined over 4,000 articles on the topic but were only able to find 33 that were useful and reliable for purposes of comparison. The authors summarized the results of their review as follows:
“Outcomes were mixed, with some findings indicating that interagency collaboration was associated with greater service use and equity of service provision, but others suggesting negative outcomes on service use and quality.”8
One of the difficulties that tended to undermine many of the system of care efforts was initially identified by Glisson and Hemmelgarn. They found that:
“In areas where coordination increased, caseworkers relinquished responsibility across the board [for activities associated with delivering quality services] based on the incorrect but expedient assumption that they would be assumed by the service coordination teams.”9
This is the collaboration trap. Sometimes when communities try to get multiple systems to work together, the result is not many hands make light work, but instead, too many cooks spoil the broth as collaborative partners spend more time interacting with one another than they do with the people their agencies are supposed to be serving.
What Works? Because they found that interagency collaboration works sometimes and doesn’t work other times, Cooper’s group identified the factors that seemed to promote and inhibit effective collaboration:
“The factors most commonly identified as facilitating interagency collaboration were good interagency communication, joint trainings, good understandings across agencies,mutual valuing across agencies, senior management support, protocols on interagency collaboration and a named link person. The most commonly perceived barriers to interagency collaboration were inadequate resourcing, poor interagency communication, lack of valuing across agencies, differing perspectives, poor understandings across agencies and confidentiality issues.”10 (emphasis added)
While most states and counties find it difficult to put all of the positive elements in place at the same time while avoiding the negative ones, a review of the literature provides some suggestions for strategies that communities can use to improve the effectiveness of their collaborative efforts within the existing constraint
Better organizational climates. Effective individual agencies have line staff who are able to collaborate naturally with staff from other agencies when a particular client’s needs require it. This is the perspective that Glisson and his associates took. They developed a systematic approach to improving organizational climate and have demonstrated that those improvements do result in better outcomes.11 They found that a positive organizational climate produces many of the attributes that Cooper, et al., found to be necessary for effective cooperation. Even though people who work in supportive environments generally produce better results, efforts to establish positive environments for human services workers are often short-changed as leaders struggle to manage the pressures of workload, resources, and increasing expectations.
Better information systems. Another strategy for improving the effectiveness of direct services is to incorporate tools that provide real-time feedback to practitioners so that they can see what’s working and what needs improvement. One system for implementing this approach was developed by Leonard Bickman. He and his associates have helped agencies create and implement management information feedback systems (such as dashboards) so that clinicians and managers can use continuous quality improvement techniques to gradually advance the outcomes that their systems are producing.12 The challenge with this approach is that even though many sites are buried under documentation requirements, they still lack fluid, flexible and well-designed information systems. This presents a classic ‘missing the forest because of the trees’ dilemma. As documentation increases, the ability to use data for effective decision- making gets buried under the weight of the forms that have to be filled out.
Blended funding. A third strategy is to link coordinated care with service funding through blended funding and the development of a carve-in or carve-out care management organization for people with complex needs, such as families with children who have severe emotional disorders. Wraparound Milwaukee was one successful pioneer using this approach.13 The challenge with this option is getting all of the stakeholders in the systems to agree to blend funds and to accept the autonomy and power of the care management organization to make critical decisions about service access, including the use of residential treatment. These arrangements can be difficult to compose in a way that is big enough to matter initially. Many sites may substitute a blended pool of flexible funds that are used around the margins of the service system while leaving out the larger funding decisions such as residential care. Over time this makes the original effort irrelevant to the big issues of each system. If leaders in a community don’t have the political will to “go bold” with their first blended pool, it is difficult to maintain as budget pressures increase and each new wave of leaders have a different idea about what the community’s priorities are and how they should be addressed.
Health Homes. A fourth approach takes advantage of the flexibility provided under the Affordable Care Act by establishing specialized health homes for children with severe emotional disorders. In a thoughtful and well-researched policy paper, David de Voursney and Larke Huang from SAMHSA have described the necessary elements of a health home that would meet the needs of a child or youth with a severe emotional disorder. They summarize their recommendations in this way:
“We define a health home as a care arrangement that maintains a continuous relationship with a young person and their family, provides a set of services that are central to the health care needs of the child or youth and their family, serves as a central point for the coordination of behavioral and physical health services and other supportive services inside and outside of the health sector, provides or coordinates culturally and linguistically competent care, and takes responsibility for the broader health and wellbeing of the young person being served.”14
Some of the challenges with using a health home model as the basis for establishing a system of care include finding a way to bridge the gap between health care and life care, working out the time and timing issues so that health care professionals can be fully engaged in the integrated approach – as opposed to marginalizing health care until it is a commodity that only needs to be accessed as an add-on when needed, and structuring the model so it has the solid feel of a true and present physical entity rather than an ephemeral collection of processes.
Underlying Challenges of System-First Designs Even though these strategies show promise, high quality implementation is often beyond the capacity of many community human service systems. But even in locales that have the political will, resources, talent pool and capacity to implement one or more of these options, their efforts may still be weakened by the limitations of top down, system-first designs.
Top down models start by focusing on the system partners who will be part of the collaborative, and then establish specific circumstances for eligibility and rules for service delivery. For example, many systems of care for children and families require multi-system involvement combined with a diagnosed mental disorder as a basis for enrollment. These systems may also have strict limits on the number of youth and families who can be served and require that all enrolled families have teams that meet the same minimum number of times and that include the same membership categories.15
While Cooper’s article indicates that some states and counties using system-first designs have been able to address issues of shared responsibility, provide purposeful collaboration, and help enrolled individuals and families by providing a single point of contact, individualized and integrated plans of care and efficient access to treatment and services, these arrangements still present several challenges:
First, requiring individuals or families to be labeled “multi-system” for them to enter a system of care can say more about the services in a community than it does about the people to whom the label is given.
Second, the labeling needed to enter the system of care can cause more distance between the helper and helpee and result in the people receiving services becoming objectified. Individuals may become known as “mentally-disordered, multi-system clients” rather than our neighbors or fellow citizens with complex needs.
Third, even in specialized interagency settings that seem to be working, the people referred to these settings usually continue their original system ties. If the people who are enrolled in the specialized system of care are still connected with, or have mandates under other categorical programs in the community, the issues of interagency competition identified by Glisson and Hemmelgarn may be exacerbated. Lines of authority, responsibility and communication can break down over time and turn into a contest between the collaborative group and the home system in which a family or individual is lodged. Some sites resolve this by reducing engagement through a hand-off process from the primary care provider when the specialized program steps in. While this can lessen friction during the period of engagement, it often makes reconnection with primary services difficult when the individual or family’s period of engagement with the specialized service ends.
Fourth, specialized and highly resourced services tend to have limited enrollment capacity, so that even if they have successful outcomes with the specific individuals and families that have been admitted to the program, they often aren’t able to serve many of the other people in the community who also have similar complex needs. This can result in a feeling of increasing cynicism by the line staff from the various home systems who see the specialized effort as irrelevant to the needs of many of the people that they serve.
Finally, it assumes that there is a coherent subgroup of people in a community who are involved in multiple systems, when in fact heterogeneity is the rule. Thus the children who a pediatrician sees that have needs than span traditional categorical systems are often different from the youths that a juvenile probation officer is working with, and the frail elderly person with multiple needs that a public health nurse visits may be different from other older patients being seen in oncology, diabetes or rheumatology clinics. This heterogeneity means that the social determinates of health underlying the complexity of each person or family’s needs will vary, as should the response being made to those determinates.
An alternative to a top-down approach to designing a system of care might be one that harkens back to Elder and Magrab’s emphasis on the importance of locality and flexibility.
Creating Responsive Healing Spaces Because the people living in communities have many different kinds of needs and many different ways of seeking and benefiting from assistance, and because those needs are changing all the time, for communities to be vibrant and healthy they need a wide variety of flexible and responsive healing spaces. For these spaces to serve the community effectively they should also be sufficiently inter-connected so that each person or family with complex needs can obtain the combination of assistance that is right for them.
This means that good healing spaces should provide: geographic proximity, so that people can get to the space quickly; resource deliverability, so that once in the healing space, people can quickly receive the help they need; and interoperability, so that helpers from multiple spaces can easily mesh efforts when needed.
Healing spaces should also be responsive, respectful and most importantly anchored to the cultures, identities and lives of the citizens who will be entering into them and have the capacity to adapt the assistance provided to fit with the characteristics of the individuals and families seeking help.
Not only do healthy communities need multiple and diverse healing spaces, the nature and structure of those spaces, the rituals for entering and engaging healing within them, and the ways the operation and upkeep of these spaces are sponsored and supported must also be able to change and adjust over time to match the people they are welcoming and the needs those people bring with them.
Healing spaces are not clinics or addresses, but instead should reflect a mutual, cross system commitment to creating and maintaining pathways to assistance so that people with complex needs are able to find the right amount of response to produce relief in the shortest amount of time. These spaces should be thought of as people, agencies and other community resources who together make an intentional commitment to follow certain practice patterns designed to produce a desired result. The point is not to enmesh everyone in the same bureaucracy but to find a way for them to all operate on the same or at least compatible wavelengths. That way unique acts of partnership can emerge as needed in ways that fit the equally unique situations of the people who are being helped.
Balancing Structure and Soul Attempting to increase flexibility in a system of care creates a dilemma. On the one hand communities need large infrastructures to gather resources and distribute them equitably across multiple locations, which creates pressure for uniformity in practice, accountability, and resource access. But on the other hand, the push for uniformity and accountability makes it difficult to match the help offered through these resources with ongoing changes in the nature and distribution of complex needs in the community.
One size fits all can end up meaning that no one has a resource that truly fits them.
Balancing top-down prescription with bottom-up promotion so that evolving systems of care can avoid the collaboration trap and nurture the emergence of approachable healing spaces in every locality requires a strategy that can manage both large-scale resource distribution and accountability with indigenous responsiveness – a strategy that can balance structure and soul.
One way to create this balance is to start by reimagining the mental model of how systems of care are designed. This involves shifting from hierarchical system designs that mandate care to a new perspective that focuses on building networks to organize care. This change underlies many of the current developments in technology from smart cars and energy grids to finding places to stay and ways to get from one place to another.
Nesting People-First Design in Networks of Care People-first design means listening to the concerns of individuals and families in a community and to their vision for what would be better. But their message can be lost in the long transition from local, community-anchored activism to state level implementation.16 To overcome this dilemma, system implementers must devise protocols to insure that local determinates of health and well-being are quickly and accurately identified and addressed, without strangling these efforts by excessive limits on who can be served, who can provide those services, and how those services can be delivered.
Shortening the time between need identification and service response and increasing the response bandwidth so that new and different needs can be addressed swiftly before they overwhelm a community presents a big challenge.
To respond to this challenge, communities need a platform for their system of care designs that:
Gathers, and aggregates and updates concrete data about the nature and extent of felt need in the community:
Alerts both those with the needs and those who are available to respond to those needs about the situation;
Cross references data about needs with potential services, supports or other forms of assistance that might be useful in the response;
Provides a forum for assembling a collaborative response to complex needs; and,
Generates connections for accessing the formal and informal resources needed to implement the responses.
Traditionally, both public and private organizations have used top-down models like enterprise architecture to support their collaborative infrastructures. 17 But emerging companies like AirBnB and Lyft use a different, bottom-up approach to generate their platforms. They use networking, virtual infrastructure and maximized customer choice to manage their operations. Like them, reimagined approaches to improving the integration and impact of human services should focus on growing emergent networks of care.
So that a network of care can quickly collect, analyze and respond to a community’s needs, its operational platform should be able to incorporate all of the key elements of a community’s service and helping opportunities in a holistic representation that captures both the evolving needs of the people and families in the community and the interrelationships that exist among the formal and informal healing spaces that currently exist to meet those needs.
Perhaps the best way for a community to improve its ability to get the right help to the right people at the right time and in the right way is to take advantage of advances in information technology by building multi-modal, multi-nodal, inter-connected, and responsive networks for identifying, generating, distributing and coordinating its resources for help and healing.
Each of these elements can help strengthen the flexibility and effectiveness of a system of care:
Multi-modal: The representation of the community’s healing and helping spaces in the platform should mirror the different types of helping activities in the community including all of the formal and informal types of assistance that are present or are hoped to be present in a community, from housing and transportation, to wellness program, to primary health care, to time banks, to specialized care. Somewhat analogously, AirBnB and Lyft maintain constantly updated maps of the rental and transportation options in a given location that maximizes choice for someone looking for a place to stay or a way of getting around.
Multi-nodal: Modes describe the various ways help happens in a network of care. Nodes show the points where the various pathways of helping intersect. The platform for a network of care should capture these connection points as they emerge or become identified, including the best ways for a person or family to link with specific individuals, organizations and other resources who provide or support healing and helping efforts in a community. As with AirBnB and Lyft, a person seeking help should be able to quickly sort through helping options in the same way they would decide whether they wanted to rent a condo, a spare bedroom or a whole house and elect whether to ride there in an SUV or a hybrid.
Inter-connected: The platform for a network of care should be able to identify the nature of the formal and informal relationships between the modes and nodes of the network, reflecting where good help and connections exist and where better ones are needed, how they operate, and how they are changing over time. Each of the various spaces should be able to produce a reliable pathway to healing without making that pathway more important than the person entering the space. To stretch the AirBnB and Lyft analogy a bit further, the network should be able to identify the current distribution of service options across neighborhoods to guide the development of new options, and describe differences and similarities in access and exit rituals for a given type of option to improve the usability of each resource. (For example, does the host leave the key for the apartment in a box, or do guests have to meet with the host before checking in? Do guests strip the beds or put the towels in the washing machine before leaving?).
Responsive: The platform for the network cannot be a static representation but instead should have the capacity to continually update, grow and incorporate additions and changes in modes, nodes and connections as well as input from the community, consumers and providers about what is needed, what is working and what needs to work better. AirBnB and Lyft can easily add new hosts and drivers but also have systems for rating the quality of the services that existing hosts and drivers provide and respond to suggestions for new types of services. Both platforms grew organically from very small beginnings to include broad geographic areas and a wide range of services.18
If this seems to be an impossible level of infrastructure to imagine, let alone build, consider how easy it now is to identify a place to stay in almost any community in the world using programs like AirBnB that will tell you whose place it is, what it looks like, whether it matches with the type of home or room you are looking for, how other guests have evaluated the place, what the hosts are like, and even tells the hosts something about the people who are inquiring about a place to stay.
A well-connected network of care would be a platform where multiple helping and healing opportunities are linked and customized according to the needs and wishes of the people and families that need help. In this way, it would let everyone in a community find the right help at the right time as efficiently as a person can find a good place to stay for their next vacation.
Starting with the Basics “We’re talking about human lives and not just vacation stays,” said Chris Cooper, the grizzled, head of Kenyon’s family advocacy organization, after Apollina had shared her ideas for re- imagining their system of care as a bottom-up network.
“Absolutely, Chris,” Apollina said. “I don’t want to rush into anything. We need to reconnect with the community at the same time we are working to re-invigorate our agencies after they’ve gone through so many disruptions. But how about if we start by re-asserting the basic values we want to see expressed as we put things back together?”
With that Apollina’s team, who began to call themselves the Pineapple Express, developed a work plan for developing and implementing a set of shared values to inform the way their new network of care would be constructed. For some it felt like the work over the following months was duplicating efforts that had taken place in the past. But for most the inclusion of population-based planning and the emphasis on creating a model that could flex its targets and response protocols based on changing needs in the community was exciting.
Using community generated values statements as a frame for their system operations required more than simply adopting a list. It meant that each manager had to spend time with both their clients and their staff listening to their perceptions of what was working and what could work better. They had to talk to people in the wider community to identify areas of need that the current system was not addressing effectively. They had to find an organization willing to host the new platform for gathering an accurate and responsive network of need expression and response resources in the county and the technical support for designing and assembling the interactive database.
The Pineapple Express Team agreed that when establishing a statement of shared values, less was more and that efforts should be made to assure that the language reflected a covenant between the helpers and helpees and other members of the community who were working toward the same goals.
In the end, they came up with ten principles to support consistency and alignment as modes, nodes and connections were added to their network of care, and its responsiveness was measured and improved.
Here’s what they proposed:
Coordination Counts: Our network of care helps individuals, families and our community deal with complex life challenges through well-coordinated action plans that build on strengths to meet the critical needs that are the driving forces underlying those challenges.
People Participation: Effective action plans must be developed with the active participation of the individual, family, or community members involved and be reflective of and responsive to their voices and choices.
One to One Responsiveness: Every individual, family and community situation is unique, and plans to help those involved deal with complex life challenges should be equally unique, with solutions, services, assistance and strategies that are well-aligned with the situation, culture and preferences of those individuals, families or community members, and take into account ways in which poverty, trauma, or other circumstances may have impacted them.
Learning Lessons from First Efforts: Our action plans are tools for learning as well as helping. Once we commit to help an individual, family or group of community members, we pay careful attention to what is working and what needs to work better and use that ongoing input to adjust the plan as needed until the individual, family, or community group has surmounted the obstacles for which they sought assistance.
Everyone Can Help: Based on the story of the individual, family, or group of community members, and with their permission we may invite additional people or organizations from our network who are likely to be useful in dealing with the obstacles that have been identified. These people or organizations may be sources of formal or informal assistance and support, both.
Form Follows Need: When individuals, families or organizations identify a situation that affects the well-being of large groups of people in our community, or the well-being of the community as a whole, the network of care may convene a collaborative action forum to devise a community-wide action plan that builds on the strengths and cultures of our community.
Welcome, Help, Learn, Improve: The basic process we follow in developing action plans for individuals, families or community members who present their concerns to the network of care is:
Welcoming. We begin by welcoming the individuals or families or groups who are presenting a concern, taking the time to hear their story, and from that story identifying their expressed and hidden strengths and/or those of the community surrounding them, inferring potential driving forces underlying the area of concern, and formulating a brief statement of how things would be if the concern were to be effectively addressed that will serve as the guiding mission and call to action for the effort.
Helping. We bring together additional people or organizations as needed to develop and implement a strength-based action plan to address one or more of the underlying driving forces affecting the people who come to us for help.
Learning. We monitor the implementation of the plan and make adjustments as necessary to improve its effectiveness with an ongoing commitment to do whatever it takes to finally resolve or manage the identified concern.
Improving. We develop a follow-up plan as needed to provide for ongoing support to the individual, family or group of community members, and/or to support the continuing efforts of the community to keep the identified concern in check when the individual, family or group of community members is near to accomplishing the mission that was formulated.
Open Access with Continuous & Participatory Review: The network of care will provide opportunities for interested individuals to become trained to facilitate strength-based action planning. Those who complete the training will be listed on the network as potential resources and can be chosen by individuals, families or community groups to coordinate a response to the concern that they are posting. As with all resources listed in the network of care, available action plan facilitators can be rated by those who use them. Facilitators can indicate the type of concerns they have helped individuals, families or community-groups address and note whether they are offering their services on a voluntary basis or if they charge a fee.
Everyone is an Investor: The network of care is a stand-alone non-profit entity. Its operations and resources are supported by joint contributions from organizations committed to improving the health and well-being of the community including health care organizations, insurance companies, school districts and the community’s human services agencies. It is hosted by a neutral organization with a sufficiently large information technology infrastructure to support the network’s platform. The network is curated by a community board with diverse representation and operated by staff hired by the board. Allocations from the network toward the implementation of action plans
is done according to guidelines developed by the board, with smaller allocations automatically approved and larger commitments requiring board approval.
Option Versus Substitution: The network of care supplements and supports the efforts of the community’s health care and human services agencies but does not replace them. Most help happens through the ongoing efforts of those other groups. The network is there to respond quickly and efficiently to emergent community issues and challenges, to provide a resource for individuals and families whose needs and concerns fall between the cracks in the current array of human services, straddle multiple services leaving primary responsibility unclear, or present such complex challenges that a coordinated effort is needed to develop and implement a creative solution to the situation.
Conclusion: Not So Much Rules as Guidelines
It was a start, but Apollina and the Pineapple Express Team had to cook up a lot more cakes, pineapple and otherwise, before they felt like they had a viable recipe for the new design. One of the challenges was to help each service agency concentrate on establishing or re-establishing its own positive organizational culture but to do it in a way that supported spontaneous and flexible cooperation with a wide variety of other resources depending on the needs of a given individual or family.
“The difference,” as Fred put it when he met with the mayor to explain what was going on, “is that in the past we would spend a lot of time getting a select group of agencies to work together. It was like belonging to a club with a bunch of rules. We helped a quite a few kids and families, but we missed many others because we didn’t always have the people in our club that we needed, or important club members would drop out, or because we didn’t have room for all the people the club wanted to help. Now we sort of got rid of the membership hassles. If a doctor has a patient that could use some extra help, she taps into the network and pulls together the folks that are needed to deal with that patient’s specific situation. Same for one of my juvenile officers or a teacher or a social worker.
“So, there are no more rules?” The mayor said, looking skeptical.
“Well, we don’t so much have rules as guidelines,” Fred answered after a short pause. “You see, we’re all one cake, but in it there are many pineapples.”
“You realize that I have no idea what you’re talking about, don’t you Fred?”
“It’s a metaphor, Mayor. Just a metaphor.”
* * * * * * * * * *
1 Lewis, D.A. (1990). From programs to lives: A comment. American Journal of Community Psychology, Vol. 18, No. 6.
2 Elder, J.O. & Magrab, P.R. Coordinating Services to Handicapped Children: A Handbook for Interagency Collaboration. Baltimore: Paul Brookes, p. 3.
3 Rychnovshy, J. (2003). Population-based health care. Journal of Pediatric Health Care, v. 17, n.
3, pp. 154-156 at 154.
4 Cf. Block, R.W. (2015) Recognizing the importance of the social determinates of health. Pediatrics, v. 135, n. 2, pp. e526-527. “There is an urgent need to recognize the importance of toxic stress, childhood adversities, and other social factors as we provide pediatric care to children. What good is providing routine care exemplified perhaps by giving an immunization, if a child leaves the office to continue living in poverty, with food insecurity, maternal depression, lack of affordable child care, violence in the home, drug abuse, and other adversities?
5 Glisson, C. and Hemmelgarn, A. (1998) The effects of organizational climate and interorganizational coordination on the quality and outcomes of children’s service systems. Child Abuse and Neglect, v. 22, i. 5, pp. 401-421.
6 Ibid, p. 401.
7 Bickman, L., Noser, K., and Sommerfelt, W.T. (1999) Long term effects of a system of care on children and adolescents. The Journal of Behavioral Health Services and Research, v. 26, n. 2, pp 185 – 202, abstract quote at 185.
8 Cooper, M., Evans, Y., &Pybis, J. (2016) Interagency collaboration in children and young people’s mental health: a systematic review of outcomes, facilitating factors and inhibiting factors. Child: Care, Health and Development, v. 42, n. 3, pp. 325-342, at 325.
9 Glisson and Hemmelgarn, op. cit., p. 417.
10 Cooper at 325.
11 See, for example, Glisson, C. and Shoenwald, S.K. (2005) The ARC organizational and community intervention strategy for implementing evidence-based children’s mental health treatments. Mental Health Services Research, v.7, pp. 243-259; Glisson, C. and Green, P. (2011) Organizational climate, services and outcomes in child welfare systems. ChildAbuseand Neglect, v.35, i. 8, pp. 582-591; and Glisson, C. & Williams, N.J. et al. (2016) Increasing clinicians’ EBT exploration and preparation behavior in youth mental health services by changing organization culture with ARC. Behaviour Research and Therapy, v.76 pp. 40-16.
12 See, for example, Bickman, L. (2008) A measurement feedback system (MFS) is necessary to improve mental health outcomes. Journal of the American Academy of Child and Adolescent Psychiatry, v. 47, n. 10., pp. 1114-1119; and Bickman, L. (2012) Why can’t mental health services be more like modern baseball? Administration in Policy and Mental Health Services Research, v. 39, n. 1, pp. 1-2.
13 Kamradt, B. (2000) Wraparound Milwaukee: Aiding youth with mental health needs. Juvenile Justice, v. 7, n. 1, pp. 14-23.
14 De Voursney, D. & Huang, L.N. (2016). Meeting the mental health needs of children and youth through integrated care: A systems and policy perspective. Psychological Services, v. 13, n. 1, 77-91, at page 79.
15 The impact of strict limitations on access to specialized services was discussed in detail in Miles, P. & Franz, J. Apollina Smith and the Amazing Exploding Triangle: A Cautionary Tale on the Hazards of Large Scale Integration of Human Services. (1995) Available on line at: http://paperboat.com/images/stories/ArticleArchive/Apollina%20&%20the%20Triangle.pdf. The current article is an expansion on the ideas presented in the Amazing Exploding Triangle article in light of 21 additional years of experiences with systems of care.
I wake up in a bed I don’t know. Yellow lights, soft sighs, and three girls lying nearby on the same stiff mattresses. Everything is institutionally white: the bare walls, the tightly tucked sheets, the low ceilings, and the grizzled carpet. The sheets feel like sandpaper, rough against my skin. Memories float back, hazy and fleeting. I see ambulance lights, pills lined on cold bathroom tiles, your face in front of me as I pushed them to the back of my throat and swallowed.
This wasn’t the first time I had been in an ambulance. Once, as a child, I remember my mother on the phone, the curly beige cord looped through her fingers, twisted around her wrists. She leaned against the doorframe cradling the phone between her neck and chin. It was a sultry, summer day and she batted at me impatiently as I clenched her knees, straining for her attention. I remember crying when she told me to go outside and play. Leaning over, she swiped me, hard, against my left cheek. I was startled by its sting and started shrieking as she eyeballed me, unblinking and hateful. I remember the screen door creaking and her hand on my chest as she pushed me down the steps. I reached out for her, wedging my hands between the door frame to stand up. My mother whipped around, looked into my terrified eyes, and slammed the door as hard as she could.
I know it wasn’t an accident. She could get away with harming me; for a second no one was watching. The blood rushed from my third knuckle; part of my left middle finger was on the ground.
I don’t recall sirens from when I was four or when I was twenty; I remember the ground. Chilly white tiles when I was older, blazing cement when I was younger. “Pick it up,” my father screamed, like it was my fault. As an adult, they told me my finger didn’t detach, that a slice was lopped away, but no more. My mother shrugged when I asked and my father claimed the tendons held on. Years later, before he died, I took a chance and asked my father what happened. I will never forget his expression: he looked me in the eye, the gin translucent in his glass, and said clearly, “Yeah. It was hanging off. I held it in the ambulance so it wouldn’t fall.” Only a handful of times do I remember my father looking deeply ashamed in relation to my mother, and that was one. I never told my sisters. I don’t think they would’ve believed me. Although memory is fickle, even if I imagined the result, the part that mattered was my mother’s indifference.
The real story is this: The doctor reattached my finger from the third knuckle, but they couldn’t save it all. The tip is missing, the soft fleshy pad darker than the rest. Sometimes my knuckle twists and pops, and I envision a bloody stump on the hot cement. I remember feeling nauseous staring at the ambulance’s ceiling, an oxygen mask over my face. At home, I laid on the brown carpet, looking into my father’s brown eyes. My mother wasn’t in the ambulance; she was barely in the living room. She sat to the side, smoke curling towards the ceiling, calm and aloof. Her betrayal is fused into me; I’m reminded of it every day when I play the guitar, comb my hair, slide my fingers into gloves for harsh Michigan winters.
Those who struggle with mental illness live in a constant state of vulnerability. The systems designed to protect us sometimes take advantage of us in the worst ways. My mother enabled my illnesses, but she couldn’t have prevented mine—or hers. So I did what I needed to do to begin healing: I left. Suffocated by untold stories and unanswered questions, I moved to Pittsburgh, a city I’d never been and didn’t know a soul. I don’t regret anything. I want to believe that happiness is not found in the bottom of a wine glass, that joy is not linked to luck. I brought my stories with me to channel heartache into art, to make a positive change in the community and in myself. I still struggle with feeling like happiness is expendable, that a finite amount of it exists in the universe. But as the lump in my chest dissolves, I recognize there is mercy in chaos and opportunity in redemption.
* * * * *
Camille Chidseyis the author of one of the essays from Lee Gutkind's most recent workshop on "Writing Away the Stigma."
I was so startled by the noise in my head that I stopped in the middle of my sentence, in the middle of my presentation on cognitive reorganization.
Of course, as I recognized, there was no actual sound. But zam! was the exact noise that seemed to shoot from the Teaching Fellow’s intense, blue eyes. The meaning they communicated was unmistakable to me: You are smart, and you are special. In the year and ten months since my accident, I had forgotten what almost everyone else knew implicitly, that a person’s eyes could hold a statement so resoundingly clear.
I had been back at college for over a year. That meant over eighteen months had passed since my injury: the eighteen months my neurologist had given me to achieve “recovery.” The eighteen months during which my injured brain, he had solemnly reported, could be expected, according to magnetic resonance images, to change. With stoic objectivity, I had inferred from his statement that eighteen months was the period during which I could be expected to change. Thus on December 12th of the previous year, which marked the end of that period, I had resigned myself to being the person I currently was: clumsy, quickly tired, emotionally flat. I had fixated my own eyes in the mirror, and thought, You will never fill with tears again.
Now, as I stood frozen at the front of the classroom, came a dramatic change in the way I perceived the world: statements had started shooting from people’s eyeballs. Since the accident, I had felt like the wires connecting me to other people were split and frayed. Now, a spark had jumped the gap to create a complete, if fragile, circuit.
Though the location of the Teaching Fellow’s message, his eyes, had struck me momentarily speechless, the content of the message itself -- that I was special, unique -- was something I had come to expect, at least since reading the chapter he assigned in the neuroscience book a few weeks before. After reading that chapter, I had begun to see myself as “LG:” a unique creature to be identified, like all brain-damaged subjects in the neuroscience literature, by my initials.
* * *
I was entranced by the chapter about Elliott. In my cozy dorm room, I leaned on the armrest of a desk chair held together by duct tape. Hypnotically, I stared at the photocopied pages in my seminar binder. Elliot had been “found” by a famous neuroscientist, Antonio Damasio. His brain had been damaged during an otherwise successful operation to remove a tumor, ablated in a region that may or may not have been lesioned in my own accident. Before the operation, Elliott had been a successful businessman, a faithful husband, a loving father. Afterward, Damasio writes, his life fell apart. Unable to stay on-task, he was repeatedly fired from jobs. He divorced his wife and had, as Damasio puts it, “a brief marriage to a woman of whom neither family nor friends approved.”
Like any good scientist seeking to explain a present observation, Damasio searched through past impressions. What struck him about Elliot and about many patients with lesions to that brain region was the flatness of their facial expressions, their lack of gesture, their monotone voices. They seemed intelligent, even highly so; but if one spent some time with them, it became clear: something was missing.
* * *
Damasio devised a clever card game that, unlike standard tests of I.Q., memory, or even moral reasoning, could expose such patients’ deficits. When “normals” played the game, their performance of risky moves was always accompanied by imperceptible sweating or cringing, cringing so subtle that only a specialized apparatus could detect it. When patients like Elliott made the same risky moves, though, they would neither cringe nor sweat. Unlike “normals,” furthermore, they would repeat the risky move again and again, performing more poorly in the game as a result. Damasio concluded that it must be the series of physiological signals that characterize emotions, like cringes and little beads of sweat, that point normal people away from unwise choices, in card games, in jobs, in life.
When I read this chapter, swiveling in my lopsided chair, I watched the formation of a flat combination of fear and hope in the back of my mind -- “flat” because my demeanor, like Elliot’s, had been characterized by muted emotion since my injury.
Like Elliot and his ilk, I wondered, was I unmoored?
At the same time, this similarity to Elliot made me interesting, fascinating, in the intense blue eyes of a certain Teaching Fellow with an engaging smile.
Struggling to make sense of this strange combination of fear and hope, I wished it would make my heart pound and my palms sweat. Instead, it swirled ceaselessly in my mind like wet laundry.
* * *
After I came out of the coma, my parents would sit at the edge of my hospital bed. When I was awake, and not in cognitive or physical therapy, we would hold conversations.
My brain had been injured in an accident, they explained to me slowly, their eyes wide to check for understanding. I stared back with a frank innocence more befitting a toddler than a college student. A tractor-trailer hit my minivan, they said, as I was turning onto Battleground Ave. It was called a Traumatic Brain Injury, or TBI.
Brain injury. Brain. Neuron. I knew I knew those words. I knew them from Behavioral Neuroscience. A course. A course I had taken last spring. Over the next days and weeks, words and their associations floated through my mind, recalling snippets of facts, bits that I had drilled laughingly, over microwave popcorn with friends, while studying for exams a month ago. The facts would piece themselves together until, finally, I happened on a memory complete enough to express.
“I remember,” I announced to my parents, the contents of my mind tripping over my tongue, “we learned about brain injuries in Behavioral Neuroscience last year. There was an experiment with brain injured people, and they flipped cards from different decks . . . and the way they played was different from normal people,” I tried. “And . . . something about emotion, I don’t remember, exactly.” I furrowed my brow, confounded, grasping for a concept that was still too deep to reach.
My parents, unable to share in my enthusiasm, nodded slowly. It was a nod I saw frequently that year, a nod I came to recognize as a sign that I had uttered something quite inappropriate in the normal, feeling world.
* * *
A week before the presentation on cognitive reorganization, but after reading about Elliot, I had e-mailed the Teaching Fellow to ask if he wanted to hear about my brain injury. If he wanted to hear about -- though I didn’t say this – my newfound interestingness as “L.G.” He was the one who suggested meeting at a bar-restaurant near my dorm for lunch.
Unused to the formality of any place besides a college cafeteria, surrounded by trendy music and dark wood paneling, I was dazzled by the intermittent flashes coming from his eyebrow piercing and gleaming teeth. I remember that I annoyed myself by twirling my forefinger around the rim of my water glass automatically and incessantly, around and around. Sincerely curious, he delved deeper into my experience than anyone ever had.
What the first thing I remembered was, when I woke up from my coma.
“Well,” I stammered. “Well . . . so, it’s not like you just ‘wake up.’ Not like in the movies. There was a period of time, I don’t remember it, when I would try to throw myself onto the floor from my hospital bed because I thought I was in a nightmare and wanted to wake up. My parents would try to stop me, of course, and I would, literally, punch and kick them as hard as I could.”
Whether my physical deficits, like the inability to feel temperature on my left side, annoyed me.
“Well . . .” I was embarrassed even to discuss it. “It’s hard to talk so slowly in front of other people. Knowing my voice sounds, basically, babyish.”
His earnest eyes were undergirded, as always, by a warm smile. “I don’t think your voice is especially slow. Was it different before your accident?”
Taken aback, I thought that he was just being nice. “I mean . . . of course. I talk really slowly now, but . . . I figure, that’s that.”
“I really don’t think you talk slowly.”
There was a silence as I looked at him searchingly. “Really?”
“No. Really. Maybe it just seems that way to you, since it takes more thought to form words.”
I stared at him in incredulity, letting this sink in. I talked normally: my world had just expanded.
“Sometimes,” I blurted excitedly, “Sometimes, lately, I don’t have to talk so slowly. It’s really weird.” I fumbled for words to describe the glorious sensation -- or lack of sensation -- of letting the meaning of words “ping” off my tongue, the way normal people do all the time, instead of forcing my recalcitrant tongue to sculpt meaning from strung-together syllables. I settled on an analogy: “It’s like the words are falling out of my mouth.”
Surprised at my own outburst, I settled back in silence. Of course, I didn’t mention to the Teaching Fellow just when words had started, subjectively, “falling out of my mouth,” with every statement I made. I knew precisely: it was when he had first invited me out for lunch.
A week later, as I gave my presentation on cognitive reorganization in the bland white classroom, buoyed by that meaningful blue-eyed gaze, my voice increased in volume as I let the words tumble forth.
“In conclusion,” I stated, my own gaze riding a wave of confidence over the desks, “during the past two decades, it has been shown that training following acquired brain injury can bring about improvements in motor and sensory abilities, like playing music or feeling Braille letters, that have a huge impact on everyday life. So it is surprising that in clinical rehabilitation settings, much precious time is wasted on the training of vaguely defined cognitive abilities, like memory and attention, that, research has suggested, cannot be improved directly through external efforts.”
I breathed out, leaving the tiny room to be filled by the hum of the overhead projector. Giddy, I ignored for the time being the implications of my final pronouncement. Deep down, though, I knew: the restitution of my emotional abilities, being just as “vaguely defined” as cognitive ones, depended on the recovery of crushed but uncaring neurons. According to my own conclusions, all I could do at the present time, to help along this restitution, was: wait.
* * *
After the hospital came outpatient rehabilitation: physical, speech, cognitive. I clasped a pencil awkwardly in my left hand, my right being too uncoordinated, and drew a line from triangle to triangle on a worksheet spattered with shapes. I sat at the edge of an exercise mat on a wooden platform, offering a beach ball to the left and right, left and right. I remember, while performing this latter task, a therapist staring at me unblinkingly, as if I were an object. I wanted to scream, to remind her, and remind myself, that I was a person.
After two months, just before my insurance ran out and outpatient rehab ended, my mom approached the rehabilitation doctor, a short, skittish man, with a worried question. “We’ve noticed that her emotions are still . . .” she paused, as if embarrassed to say it. “Muted.”
The doctor blinked nervously, grappling for a response. “Well,” he stammered. “Well, she was going to Harvard . . . it doesn’t seem like she was a very emotional person to begin with.”
* * *
It is true that I have always been deeply engrossed in my studies, particularly of neuroscience. I do not remember the morning of the accident. But my memories from the summer weeks before it include carting around a copy of Seeing Voices by Oliver Sacks.
The rehab doctor seemed to think that such a bookish, placid demeanor always translates to a lack of emotion. It seems impossible truly to remember an emotion, separately from its external signs, so I can only wonder whether this is accurate: whether I experienced deeper passions before my accident than I do today.
I know that the spring before my accident, tasked with composing a personal essay, I chose to write about a brief romantic relationship. I remember grasping for a way to explain my silly, starry-eyed behavior, and concluding that some common human experiences, like falling in love, are only comprehensible to us via stories. Stories, I decided, are no more and no less than what bind us together. Although my conclusion, stories bind us together, was no less cliché than my silly romance, this was only because it stemmed from an experience that so many of us share. How one comes to the realization that stories are what bind us together is, itself, a story.
I ended my essay with a quote from philosopher Alisdair McIntyre:
We all live out narratives in our lives and . . . understand our own lives in terms of the narratives that we live out . . . the story of my life is always embedded in the story of those communities from which I derive my identity.
* * *
A vision of the Teaching Fellow’s intense blue eyes propelled me through my summer that year, to an internship far away, with the Head Injury Society of New Zealand. When I first signed up for the internship, that past winter, I had simply hoped to facilitate the transfer of useful information between families including TBI survivors. The kind of information -- like TBI survivors often have muted emotions -- that would have benefitted me enormously. Now, I also secretly hoped that my observations would form the basis of neuroscientific hypotheses that would, with the Teaching Fellow’s caring guidance, launch my illustrious research career.
* * *
Once I arrived in New Zealand, after getting the lay of the land, I decided that the best way to achieve these ambitious aims was to interview as many members of the Head Injury Society, who were people with head (or brain) injuries and their families, as possible. The Society’s “Field Officer,” a plump, grandmotherly woman with hair dyed an unnatural shade of burgundy, who had rented me her basement apartment for the summer, was to be my transportation.
The Field Officer turned into the dusty driveway of Helen Davies’ parents’ farmhouse, modest but perched on acres of rolling emerald hills. Helen, my first interviewee, was thirty-one years old; since a car accident six years ago, she had been blind and, most importantly to her, unable to speak. Inside, sitting at the kitchen table, I flipped through her scrapbook while her caregiver sat beside her wheelchair, patiently inserting spoonfuls of strawberry yogurt between her lips. As Helen’s mother bustled about the kitchen and responded to my polite questions about the family’s dairy business with one-word answers, I felt more and more like a stranger, encroaching on the family’s private territory. As minutes ticked by, the hard chair pressed painfully against the backs of my thighs.
When Helen finished her breakfast, I mechanically began asking my prepared questions. How did you get your brain injury? When and where?
Since Helen could not speak, she did not respond to me directly. Instead, she delivered answers through her caregiver in the special language they had devised together, spelling out her responses as necessary, often letter by letter. For the letter “I,” she blinked her eyes; for “U,” she gazed Upwards. Some words, like “phone” and “horseback riding,” had their own sign: a hand to the ear, clicking noises to imitate the sound of hooves.
If her mother had been reticent, Helen nodded and gestured emphatically, seeming to burst with the desire to share her story -- as eager as I had been, at what now seemed like a long time ago, across from a flashing smile in a dark bar-restaurant.
* * *
That first interview was followed by another, and another, until my Ziploc baggie of mini-cassette tapes, labeled by name of interviewee, started gaining heft. To my surprise and delight, most people with brain injuries I met were eager to tell me the story of their injury, just as soon as they learned I had had a brain injury myself. It seemed as if their stories had been blocked like water in a pipe, gaining pressure until someone capable of understanding could release them.
I found, however, that their responses to my canned questions were more than just replies. I had expected these responses to fit into the boxes created in my mind by my scientific training – one for the physical effects of the injury, one for its cognitive effects, one for its emotional effects. I had planned to mold these responses into engaging stories, making a repository of information palatable for the general public. Instead of crystallizing into boxed facts, though, I found that the interviewees’ answers congealed into narratives that were already, without my editorial meddling, their own.
After conducting the first few interviews, I faced the glow of my laptop, remembering how Helen Davies had proudly described her recent completion of a 5k race without the aid of her wheelchair, using only her walker to support her. Then my fingers moved by themselves, as if floating over a Ouija board, to type the first line:
After three hours and forty-five minutes, Helen Davies crossed the finish line.
* * *
TBI is not usually categorized, either by the medical establishment or by the general public, as a mentalhealth problem; it is a neurological problem. The relationship between the mental and the neurological, or between the mind and brain, is far from settled; but one does not have to endorse a one-to-one correspondence to realize that mutilating neurons eats holes in the person who owns them, including in all the interlocking stories that place her in the world.
Neuroscience and neurology have benefitted from centuries of scientific analysis: the separation of facts into their constituent elements. An important part of what is injured in TBI, though, cannot be picked apart in this way. Where neurology focuses on the wires frayed in TBI, the study of mental health allows itself to address current-bearing circuits that are constantly rebuilt.After my injury, studying neuroscience led me to the conclusion that I should wait for the spontaneous recovery of my deflated neurons, blankly observing the world through a window until better evidence emerged. My mental health demanded, though, that I continue to live.
* * *
I sat close behind his broad back, the two-seater bicycle stretching below me like a stallion at rest. I had not attempted to ride a bike since my accident over two years ago, and the thought of surrendering my uncertain balance to two narrow wheels would have terrified me, had not Brett been there to guide me.
“I’ll start with my right foot,” he instructed, “So you start on that side too, and then put your left foot in the pedal when I tell you. Ready?”
Much of my time in New Zealand would have been spent alone, in the dark den of my basement apartment, if Brett Rossitter and his family had not befriended me. Brett, former president of the Head Injury Society, had sustained a brain injury in a bicycling accident. He, his wife and two young daughters had me over for “tea” (as Kiwis, or New Zealanders, call dinner) on many occasions, when they would serve me local specialties like New Zealand lamb. On weekends, I would squeeze in their little car and make pilgrimages to the country’s gorgeous vistas.
Brett and I would often go running together, me clumsily following his lanky runner’s stride. One afternoon, though, he changed his plans. “I’m too full of food, after those scones! I think we should ride the tandem bike instead!”
Most of Brett’s sentences ended in exclamation points; whereas my brain injury had resulted in a blunting of emotion, his had led to an intensification of feeling that left me exhausted after we spoke.
Brett and his wife had a two-seater bicycle on which they toured the countryside. Back at his house, I watched him pump the tires. “Have you ridden a bike before?”
He stopped pumping and looked at me, pushing his tiny, rectangular glasses back on his nose. “Since your accident?”
I was worried he would ask that. “I don’t think so.” He seemed to sense my hesitancy.
As we walked to the high school parking lot leading to a narrow asphalt road through campus, I shut my eyes and held my hands out in front of me, picturing handlebars. The position seemed natural -- or so I told myself.
Now, there was no turning back.
Brett bellowed, “Push . . . now put your left foot in! Put your left foot in!”
Magically, we glided toward the low, brick school building. There was a long, brilliantly pink cloud in front of us, with the daytime moon above, florescent white in the late afternoon. My legs pedaled in an easy rhythm, and I smiled.
* * *
During those months in New Zealand, my visceral feelings blossomed, beginning finally to gain control of my body. I would curl into a ball on my bed, letting my head ring with the clanging coming from the basement on the other side of my closet wall, where the Field Officer’s husband kept his metalworking shop that sounded like the pit of hell.
The visceral emotions may have blossomed, consonant with my neurologist’s prediction long ago, simply because the neural machinery supporting them had recovered spontaneously, possibly even months before my journey. I had only had to place myself in an environment that triggered feeling, like the one I had found myself in that summer for emotion to flow.
It is also possible, though, that the restitution of my physical emotional responses would not have occurred on its own. That is, it is possible that -- as I had mused in my essay, even longer ago, about falling in love – stories really are what bind us together. As I listened to the stories Head Injury Society members, and shared one of my own stories with them, their stories became a part of mine, and mine became part of theirs. Story-swapping pointed me to my place in their community, allowing me to become a character, part of a plot shuttling through ups and downs, and who thus had a reason to feel.
Sometimes, curled into a ball on my bed in that basement apartment, I would purposely conjure an image that, as I had discovered the previous spring, was likely to make me cry: a gravestone carved with my name. 1980-2000.
Sometimes, I imagined myself as my parents must have seen me in the hospital, clawing desperately at them with skinny arms accustomed to ballet poses. At those times, shortly after I had “emerged” from my coma, only my neat ponytail distinguished me from a wild animal. It would still have been matted with sweat and blood, had my mom not spent hours, while I was still comatose, smoothing it with a brush.
I held in mind one of my first memories after my coma: the sound of my dad’s voice, suddenly recognized as the voice that had once read me detective stories, pleading in the background as my flailing limbs continued uncontrollably to claw at his shirt. Occasionally, when I accompanied these images with sob-like shudders, my efforts would pay off: my eyes would moisten, and I would continue “sobbing” until fatigue swept over me. I would then stare at my reflection in the bathroom mirror, fascinated at how my eyelashes had clumped into pretty little triangles.
* * *
I became so good at calling to mind sad thoughts that eventually, they would not stop. On afternoons when I sat in my lonely box of an apartment, when the Rossiters were having tea on their own, the foreboding anecdotes that had peppered all of my interviewees’ stories began to haunt me. Some interviewees had told me about devastating attempts to re-establish pre-injury jobs. Stinging rebuffs by former friends. The words of one interviewee, in particular, echoed in my mind:
I kept trying and failing, trying and failing.
I began to see where prejudice and acknowledgment, where the attribution of stupidity and the recognition of cognitive impairment, blended into each other. Curled up like a centipede, face down on my bed, separated from Dante’s inferno by a mere closet, I longed for sleep as memories smoldered.
There was the time when I had suggested to the Field Officer that I interview a particular man who was a regular at the Society’s outings. I had noted him because I wondered what lay behind his thoughtful green eyes.
The Field Officer – who, as she made quite clear, was not herself head-injured -- had patted her shellacked-in-place curls primly. “Oh,” she made a dismissive gesture. “That’s Derek. You don’t want to talk to him. He talks so slowly.” In other words, I thought, he is not worth listening to.
Always, a figure ran back and forth through my mind, the figure of a man engulfed in flames. This was the brain-injured man I had heard about my first day in New Zealand, who had doused himself in gasoline and then lit a match. Like so many of my interviewees, I guessed, he could not find the right type of help.
During my summer in New Zealand, I missed the intense blue eyes that had first accompanied me there. Yet when I returned to Boston in the fall, I found myself impossibly separated from them. A part of me still wanted to be guided by those eyes – but I could no longer see myself as L.G.: a creature with a damaged brain and thus, as many inferred, with a damaged soul.
* * *
Love calls us to the things of this world.
-- St. Augustine
The semester after my internship, I spent most evenings sealed in my dorm room. I do not know why I accompanied some friends to a swing club in Inman Square on that particular night. But something had awakened a sudden hope in me, and my fingers were tingling when I met them at the bus stop.
After the lesson, he asked me to dance. Sticking to steps we had just been taught, surrounded by enough of a crowd that mistakes could be blamed on other couples’ missteps, we eyed each other with a similar mixture of shyness and playfulness. As the night wore on, that similarity became a connection, and I was swept away by the warm roar of voices all around me. Though I had only drunk water, when my friends and I stumbled home, the impropriety of having scrawled my phone number on a napkin made it difficult to walk. By summer, I had moved into his apartment; and two years after my summer in New Zealand, this man, who is now my husband, watched me graduate with honors for a thesis on non-verbal communication.
The messages that come shooting out of people’s eyes are one type of non-verbal communication. Non-verbal messages can also lie in the shy, playful glances of a dancing partner -- inspiring, for example, trips a mental health counselor’s office, where a tangle of experience can begin to become a story.
 Alasdair MacIntyre, Virtues, Unity of Life and Concept of a Tradition, pp. 197 – 205.
* * * * *
Lisa Ledereris the author of one of the essays from Lee Gutkind's most recent workshop on "Writing Away the Stigma."
I follow the receptionist through the turquoise and white blowout bar past the counter where women perch sipping Bellinis while their hair is dying and their nails are drying. She seats me at a makeshift station set up in a private back room. This is where they serve women whose religion doesn’t allow men to see their hair. My stylist, Kat, does not look alarmed when I remove my wig and shove it into my handbag.
I pull out bobby pins and shake my long hair down my back as Kat says, “We’ll do your color first. What were you thinking?”
“I would like to cover my gray and match my natural dark brown color.”
“I think some red and caramel highlights would look good. Is that all right?”
“You’re the professional. I trust you.”
Kat leaves the room to mix the color, and I breathe in deeply for six counts and out completely for eight counts like I had learned in therapy to calm myself. Kat and I haven’t discussed how she would cut my hair, and I worry it still isn’t long enough do anything fashionable enough to allow me to lose the wig. My last time in a stylist’s chair, 6 months ago, was disastrous.
That summer day I asked a different receptionist in a business across town, “Would you mind if my daughter sat in your waiting room during my appointment? She brought a book and she’s quiet.”
“That would not be a problem,” the woman said. “But you won’t come back out this way. Clients leave through a separate exit. For privacy.”
Resigned to the fact my 10-year-old would have to accompany me, I settled into a chair in a waiting room very much like a doctor’s. There were lifestyle magazines on a coffee table, a fake Ficus tree in the corner and cheap prints of flowers on the walls. Before long an assistant called my name and led us through narrow corridors to the treatment room.
Seated in a hair stylist’s chair by a sink opposite a display of wigs, I felt like I was in a beauty salon. Yet the privacy of the room and the rubber gloves and unfamiliar tools made it feel sterile. I held the clipboard and filled in blanks. I was hoping to get an integration, a semi-permanent hairpiece that is sewn onto existing hair, to cover the bald spots on my crown and blend into my natural hair. It would be cooler than a wig in hot weather and would not slip – meaning I could finally swim and ride rollercoasters.
A few minutes later, the owner of the hair replacement practice entered the room. I looked closely at his hairline to see if he had plugs. I removed my wig and he looked closely at my scalp, moving some strands of hair. I peeked at my daughter; I felt my forehead flush when I realized she was taking in every bit of the exchange, her Harry Potter book forgotten between her thigh and the chair’s armrest. I was embarrassed that I was weak in front of her. Like I was setting a bad example of negative self-image or covering up a problem instead of solving it. I felt almost naked even though she had seen me bareheaded many times. But I never pulled my hair out in front of her.
I have trichotillomania, TTM for short, the uncontrollable urge to pull out hair strand by strand, causing baldness in extreme cases. I seldom wore a wig or scarf at home with just her and her father. When an unexpected visitor knocked on our door, she would snatch my wig or scarf or hat off a chair or table and run to me so I could put it on before I answered. To her, covering up my baldness and keeping my secret seemed normal. I resent the reversal of the caretaking roles.
“Your hair will have to be longer before we can attach a system,” the owner said, snapping me back into the present and the treatment room. Hair replacement companies call their products “systems”, which I guess is preferable to the slang “weaves”, “rugs”, and “plugs”.
My chest tightened and my head buzzed so that I could hardly hear him as he showed me new wigs I could wear while my hair grew out.
“You’ll need two,” he said. “You will have a spare to wear while you send one back to us for cleaning and styling. Whatever you decide you have to replace that ratty old thing.” He gestured to the 15-year-old brown bob in my lap and my cheeks burned. He did some calculating; the monthly installment plan was not interest-free. His assistant thrust a catalog of wigs and the price quote for $2,000, not including the regular maintenance, into my hands and showed us out the back way.
In the parking lot I phoned my husband. It was a short conversation.
“I would rather spend that money on therapy,” he said.
My eyes filled with tears; my past attempts at therapy had been a waste of money and time.
* * *
My first therapist was my pediatrician’s wife, and I met with her in his office. She gave my mom a photocopied magazine article to explain my diagnosis. That was in 1988, when I was 11 years old, and information about treating TTM was more limited than it is today. My case isn’t as severe as some I’ve read about; they pull every hair on their bodies including eyebrows and eyelashes. Some eat the hair – a condition called trichophagia – and have intestinal problems, basically a hair ball, and it can be fatal.
On the rare occasions, I have revealed my disorder, the first thing people say is ‘Doesn’t it hurt?’ I tell them that pulling out individual strands of hair by the root does not hurt the way it feels when a clump of hair is pulled out.
But how does it feel? Well, physically there is a release when the follicle lets go of the hair’s root. Psychologically, there may be some small relief of mental or emotional pressure. I believe this is where the idiom “so upset I could tear my hair out” originated. Hair-pulling, sometimes done unconsciously, can be soothing to someone having anxious or upsetting thoughts. Think about a child sucking her thumb.
I probably had signs of the disorder years before my diagnosis. As a young child I liked to rub my eyelashes between my fingertips. TTM is often about sensory experience; the fingertips caress and select a single hair and tug, sometimes rubbing the hair across the lips, then another and another. It is a body-focused repetitive behavior, like its cousin, skin-picking. Sometimes tension builds up in my chest and stomach; I feel really anxious and my fingers fly to my hair.
To keep my hands busy, my first therapist gave me a foam stress ball to squeeze. She encouraged me to snap a rubber band on my wrist when I caught myself pulling. I learned many years later the technique is called a competing response. At her office, she asked me why I pulled. I was 11; I didn’t know. Twenty-eight years later I still can’t explain the relief or release or reward I got when I pulled. I also don’t know why my mom stopped taking me to that therapist. I hadn’t been effectively treated.
* * *
Kat returns to the room and commences painting color onto sections of my natural hair she then wraps in foil. If she is curious about my condition, she doesn’t ask, except to see if I would be comfortable getting my hair rinsed beside other women in the open salon. I am.
Until now, I had dreaded the stylist’s chair and would go years between haircuts. Explaining the bald patches on my scalp to a stylist – or worse, removing a hairpiece or scarf in front of other customers – was too embarrassing to face. While realizing I wasn’t bringing much to the chair for her to work with, I still desired to keep the relationship with the stylist “Don’t ask; don’t tell.” I hated answering questions but my standard response was “Stress makes my hair come out,” which was close to the truth. I hid the bald patches with headbands, hair clips, scarves and hats. At my lowest points, I wore wigs.
My mom bought my first wig at a store in the mall – a hot, scratchy hairpiece in an unfashionable style. It was wavy and looked like it belonged on a middle-aged woman. I wore it in 8th and 9th grades with a wide headband because I was afraid the wig would slip or blow off, which made me look like Annette Funicello in a 1960s beach party movie.
In the best of times, I would stop pulling and my hair would grow back. TTM can relapse and remit. In the worst of times, I covered the problem with scarves, hats, and wigs. The year after I turned 21 should have been the best time of my life. I was newly married to my high school sweetheart. I was a newspaper intern and a journalism student. Life was good, but the pressure was great; I pulled out handfuls of hair. When I could no longer cover the bald spots, my mother ordered from a catalog a new wig in a brown bob.
Over the years I occasionally sought treatment. I tried the antidepressants Prozac and Luvox because I had read that selective serotonin reuptake inhibitors were effective in treating obsessive-compulsive disorder, which is what researchers used to classify TTM as. Now they see it as an impulse-control problem.
At another time I saw a psychiatrist, who took notes while I rambled about my stressors, mainly a toxic boss, for an hour. She left me to figure things out for myself. She never told me how I was progressing and she certainly never mentioned when my treatment might end. I pulled more. I stopped seeing the shrink in 2007 when I quit my job because of the stress. The crown of my head was nearly bald. I covered it with scarves for the next three years, until 2010, when at a dress rehearsal for a concert, I realized the scarves were no longer giving enough coverage.
* * *
Poinsettias ringed the dais beneath a gleaming wooden altar in the 100-year-old church. The Community Chorus was dreaming of a white Christmas. I was praying the singers standing on the risers above and behind me were not looking down at the top of my head and seeing what isn’t there. My face felt as red as the Christmas flowers.
I drove home and went straight to my bedroom. I stood on tiptoes and felt around on the shelf in my closet for a metal pail printed with flowers. My fingers closed around the handle and I pulled it down and pried off the lid. Inside was my old wig, the brown bob of synthetic fibers my mom mail-ordered more than 10 years before. I washed the wig and hung it to dry and accepted the fact that I was sick enough to go back to wearing it. The wig would give my real hair time to grow back on top of my head and, when I had a full head of natural hair, I would stop pulling it, I lied to myself for the umpteenth time.
Almost daily for the next two years, I braided my long hair or spun it into a French twist, bobby-pinned it to the back of my head and pulled the wig over it, tucking wisps of my real hair under the elastic band of the cap to which the fake strands were attached. And I convinced myself I blended in with normal people because my hair didn’t look any different from theirs. I kept pulling; years kept passing, and the wig kept aging.
* * *
It was the wig’s threadbare condition that spurred me to the hair replacement office. My disappointment there and my husband’s reluctance to spend money for another wig propelled me to a new doctor’s office. On July 16, 2013, I was wearing my ratty wig and sitting on the edge of a sofa in the new therapist’s office. I might have appeared poised to act on the fight or flight impulse I was feeling, but truthfully, if I scooted back, my feet would barely touch the floor. I was conscious of my posture; I bet this woman never slouched. She dressed stylishly with coordinated jewelry. Her blond hair coiled in tight spirals. The sofa’s embroidered pillows reminded me of the last shrink’s, and I took that as a sign this one was going to fail me too. But at the end of the hour-long intake session, the therapist, Dawn, said something no other provider ever had. She suggested a definitive treatment plan: We would start cognitive behavioral therapy at the next session. I drove home and Googled it. Anxious to get started, I tried focusing on nothing but slowly inhaling deeply and exhaling completely for 5 minutes. Grounding techniques such as breathing is an early step in CBT.
After a week of diaphragmatic breathing, I moved on to recording when I pulled and recognizing what triggered each episode.
“Tell me about a situation this week where you realized you had cognitive errors,” Dawn said one morning. She was teaching me to recognize and dispute the kinds of, often irrational, thoughts that made me want to pull my hair.
I told her about chaperoning my daughter’s field trip and the little boy who wanted me to hold him. How it made me uncomfortable, not wanting to reject him but also not wanting to school personnel to think I was being inappropriate.
“What was your anxiety level related to these automatic thoughts?,” Dawn asked. “From zero to ten.”
“About a three. I was anxious and cautious.”
“What were the unhelpful thinking styles?”
“Mind-reading; that someone would think I was trying to hurt him.”
She also pointed out that I was engaging in “all-or-nothing thinking,” by assuming the boy would feel rejected.
“You saw that as black and white with no middle ground. If things aren’t wonderful, they’re awful, and if what you do isn’t perfect or the right response, then you’re a total failure.”
“I hadn’t thought of it like that before.”
“Now, challenge your irrational ideas.”
“Well, I was in a room full of people, including workers. No one would think I would try to hurt him in front of that many witnesses.”
One day about four months into our sessions, my never-a-hair-out-of-place therapist asked, “Is your hair growing back?”
I hadn’t pulled a strand in weeks. I reached up to remove my wig, something I had never done in front of her. “Would you like to see?”
“You don’t have to if you don’t want to,” she blurted.
“I don’t mind.”
“Cynthia!” Dawn’s discomfort turned to delight. “I think your hair is long enough to ditch the wig. I’m sure you could get a cute, short cut.”
There were no obvious bald spots, but my hair was shorter in some places than others.
I know it seems unbelievable that I could fix the most obvious symptom of my disorder so quickly. I hadn’t tried cognitive behavioral therapy sooner because I had never heard of it. I don’t pull my hair now and haven’t for almost three years.
Still, I didn’t run right out of Dawn’s office that day and make a salon appointment. When I thought about calling a salon, my throat tightened, my mouth went dry and my hands numb. I didn’t want a roomful of strangers watching me remove the wig and listening to me explain why my hair was short on top and so long it could be braided in the back. But as I kept recording my irrational beliefs in my thought diary and invalidating each like I learned in therapy, I realized I was healing.
A few weeks after Dawn’s declaration, I was ready.
* * *
Sitting in Kat’s styling chair, I have even fewer ideas for a haircut than I do for the color; fortunately, she does. She trims 10 inches off the back, creating a fashionable, short style that blends new growth into the layers she made. The top, parted on the right, flips over the sides and feathers around my ears while the back juts out in spikes.
“I love it! You look so different!” gushes the salon owner when I pay. “Do you love it?”
I do, and I book my next appointment – for a seat at the blowout bar.
* * * *
Cynthia Trich is the author of one of the essays from Lee Gutkind's most recent workshop on "Writing Away the Stigma."
~ Morning Zen Guest Blog Post - Rachel Kallem Whitman ~
“What exactly happened that brought you here today?” Dr. Vaswani asked from his large leather recliner, peering down at my mother and me swaying on our fraying wicker seats. Behind him was a wall-sized photograph of the Taj Mahal; plastered on the right-hand corner next to a poorly pixelated column was a picture of a yellow rubber ducky. I would’ve sworn I was hallucinating. It was the strangest backdrop for a psychiatrist’s office, but my mother saw it too and was equally confused. Dr. Vaswani was the answer to our prayers; the primary prayer being an answer to the question, “why is Rachel crazy?” and the secondary prayer was that he could give us the cure. And even though I was hating every minute of this visit, sitting there riddled with self-loathing, embarrassment, and shame, I was glad the doctor had asked that question because I wanted to know too. I had done a lot of crazy things, especially since turning 17. Which was the one that tipped my parents concern? Was it the secret long walks I felt compelled to take in the middle of the night? The crooked cuts that appeared on my legs, so many now that they were difficult to hide? The fact I smoked weed once in awhile, sipped vodka occasionally, or took someone else’s prescription pill? Maybe it was my clandestine and bizarre attraction to Princess Diana, which had developed for unknown reasons? I crossed my fingers hoping I would not have to explain that last one.
“She thought she was on a TV show,” sighed my mom.
I will never forget that face. That look of worry and love all jumbled together too complexly that I could never distill one from the other ever again. The day I realized my mom would forever love me with worry in her eyes was the day I realized my TV show was officially going off the air.
Okay, so I launched my own TV show. No big deal. I grew up in a household that adored female talk show hosts. From Rosie O’Donnell, to Oprah Winfrey, to Ellen DeGeneres in later years. These strong, smart women had overcome adversity—they were pioneers of feminism on television, they were engaging and entertaining, they made people laugh, and they were role models to all of us. It didn’t take a genius to realize that this was a path worth pursuing. Luckily, I was a genius, so I decided to make it happen. I would start small but eventually change lives on prime time television.
“Dad, what kinds of peas are these?” I asked my father one night at dinner during a live taping.
“I don’t know. Green! I thought you liked peas?”
“I do, but I need to know the brand.”
“Why do you need to know the brand?”
“Because if I don’t know, how will everyone else!?”
Uh oh. In that moment the “Rach, you can be so quirky” look I had grown accustomed to seeing on my parents’ faces was replaced with furrowed brows and pensive stares. I had only wanted to rave about the peas for my dedicated audience so they could buy the exact same kind and reap all the same nutritional benefits that I was consuming at the Kallem family dinner. But when I said it all out loud I realized that it sounded crazy. I sounded crazy. It had made so much sense before, and I believed it with all my heart. Having a studio audience made me feel real and purposeful in a way I had never felt before. It finally felt like I fit. After being haunted for months by the unsettling feeling that people might be watching me, the enraptured fans tuning in now were my welcomed guests. But with a thunderous roar reverberating in my head, so loud it drowned out the audience’s applause, my completely-real-to-me architectured world came crashing down with the realization that I must be crazy. I was crazy, stupid, and shatteringly devastated. I hoped no one would take serious notice of this cognitive transgression and in utter disgrace, I put the writers on hiatus and dug my slightly rusted scissors out of my dresser drawer, fully aware that I was back to collecting cuts and raiding medicine cabinets. Unfortunately my parents noticed and since I was nowhere near as mesmeric as Oprah I never met a casting agent or an interested executive; instead, I met with Dr. Vaswani, the man who would be my psychiatrist. At our visit, he told me I had bipolar 1 disorder and needed to take medication for the foreseeable future.
You’ve got to be rubber ducking kidding me. Not only was I an insecure, overweight teenager and a failed aspiring talk show personality, but now I was also certifiably insane. A long ongoing list of my erratic behaviors was filed in my psychiatrist’s office and all I wanted was to be normal like everyone else. The worst part of it all though was that I’ve always hated peas with a passion.
If you want to grossly simplify it, bipolar disorder is all about alternating moods. Except these moods, or emotional states, are extremely heightened versions of the feelings most of us experience every day. My cycling emotional states were classified as Hypomania (the fun Rachel who I think everyone adores), Mania (the high-energy, do-it-all Rachel who doesn’t notice the quizzical looks), Psychosis (the Rachel who is torn apart by terror that no one else can see or understand), and Depression (the Rachel who can’t bear it any longer). Dr. Vaswani prescribed me a long list of pills that promised to take away the ache and help me manage my symptoms, but the combination of capsules and tablets left my brain feeling damp and foggy. My thoughts became too thick to think and worst of all my Hypomania and Mania, who had made me feel so light, sparkly, and TV-worthy, all but disappeared under the weight of these mood stabilizers and antipsychotics. Losing Hypomania and Mania felt like losing the best parts of myself. I figured I was miserable either way, so why should I forfeit the one thing that made me happy? Holding firm with this rationale, I flushed my medications down the toilet and resolved to make things better on my own. I had willpower and discipline; I could do it. [I extend my sincerest apologies to the highly mellowed out fish I inadvertently sedated in the Chesapeake Bay.]
* * *
Despite my parents’ concerns, after graduating from high school, I attended college about two hours away from home, which is where I first tasted how sweet life could be with minimal adult supervision. In my newfound collegiate freedom, Mania truly shined. She became the beacon of light in the Sisyphean cycling of my illness. Mania blessed me with electric emotions, erotic ideas, and brilliant behaviors, which while they may have been clinically considered symptoms of my sickness, were divinely exalting for me. She gave me the confidence, and carelessness to channel the diva I always hoped I was and emboldened me to do whatever I wanted. Why not? I was marvelous, sublime, and lust-worthy. The Psychosis and Depression always loomed, so I enjoyed the Mania while I could. Thankfully, college made that pretty doable seeing as I could easily schedule my daily agenda around my Mania. Her never-ending energy and outright refusal to recognize that the real world has consequences enabled me to stay up all night, eat next to nothing, bask in the glittering glow of my own perfection, and for as long as I could I harnessed my Mania to keep myself in motion. Something definitely felt off, but my parents cautiously accepted that I must be “okay.” My grades were good, I saw my therapist and psychiatrist regularly, and I called home every week. But were things “okay”? No. Leading this double life, a crazy party girl masquerading as a sane model citizen, placed so much pressure on my brain that, unbeknownst to me, I began to splinter.
* * *
My drug of choice was particularly potent and highly volatile. It comes highly individualized, tailored to meet the exact needs of each addict. It speaks to you so personally and reads you so accurately that it is nearly impossible to turn down. I liken the special effects of my personal batch to exuberant fireworks whizzing and popping in my skull. When I’m submerged in its aura, everything is electric, and I am a beautiful, unpredictable livewire. How can I possibly say no to this feeling? Especially considering I get it for free. I cook up this magnetic high in my own cranial chemistry set and thus it is beyond easy to slip into this shameless, hazardous addiction. I willingly take the euphoria, the invincibility, and the immortality that leaves me feeling completely divine. At 17 when I was diagnosed with bipolar disorder my Hypomania was alluring and intoxicating. However, in the whirlwind that was college, my Hypomania rocketed from a somewhat manageable blissful state to full-blown Mania. Mania brought miraculous feelings, sensations, realizations, and abilities that I never knew I had. Mania and I truly made for a stunning pair. I think somewhere in the back of my mind I always knew she would eventually kill me, but oh what a majestic, spectacular death it would be.
I once spent 72 hours, the weekend before midterms my junior year of college, researching the most notorious serial killers in the history of the United States. Taken at face value someone reading about the gruesome crimes of John Wayne Gacy, Ted Bundy, Jeffrey Dahmer, and Aileen Wuornos, is morbid and macabre but many people share a psychological fascination of infamous mass murderers. And most college students succumb to the sweet siren song of procrastination. However, after hours of intensive nonstop research, Googling related horror stories, surfing sinister Wikipedia pages, and watching chilling YouTube videos, I became incredibly paranoid, fearing for my life, and I didn’t sleep much for almost two weeks. I was so stricken with anxiety and tormented by the seemingly very real fear that someone was trying to poison me that I only ate packaged food for two months. But a college student living on cheap, packaged food seems kinda normal, right? I could feel the rusted corners of my brain turn to clotted dust but I thought from the outside looking in I was a convincing college student. I could keep this up.
The summer before my senior year of college I intellectualized my ingenious investment strategy of funneling my parent provided allowance into the George Foreman Grill market. No one in their right mind needs eight George Foreman Grills, but I was just pretending to be “ right,” so it seemed like a brilliant way to “spend money, to make money.” The logic was certifiably sound, at least to me. Will George Foreman Grills ever be recognized as legitimate currency? Hell, no. Do George Foreman Grills depreciate in value over time? Hell, yes. They’re just novelty infomercial gadgets. But when I purchased all eight, I honestly felt like I was planning wisely for my future. It took almost six years to pawn off all of those grills but I was 20, had my dad’s credit, and while it was ill-advised and kooky, no one was hurt. Not even my credit score. It seemed sane-ish.
But it is terrifying to lose yourself to an illness that courts you one minute and buries you the next. The times I’ve been admitted to the hospital my psychosis was controlling me like a rattled puppet, and I saw scrapes and scars on everyone and in every mirror, and my eyes felt devilishly unfamiliar. I was frantic and terrified because nothing was real. And then suddenly in the very next moment, everything was too real, and it was really bad. People were trying to poison me and trick me into killing myself. I couldn’t see them and no one else could either but I just KNEW they were tucked behind every corner, dodging behind every shadow when I whipped my head around. I thought about God and Jesus and Princess Diana and how my teeth had betrayed me with their hidden microphones carved into yellowing enamel and their speakers glued to the under belly of my tongue. And it was just hard to think straight and steady a thought long enough to make sense of it before it whizzed away and sparked, lighting a tiny fire in the corner of my mind that eventually raged and roared and left my head engulfed in wildfire. My brain was a bonfire. I was psychotic and all alone, abandoned in an inpatient unit. Where was my intoxicating Mania now?
This is my bipolar disorder.
* * *
“I love you.” The first time he said it we had only been dating three months. Visiting my parents’ home, canoodling in my childhood bed, propped on his elbow, his eyes cast on my face he said, “maybe it’s too soon to say this but, I love you.” My old bedroom built into the second floor of a typical suburban house has periwinkle wallpaper and glow-in-the-dark neon stars plastered erratically across four walls and the ceiling. That night the room was radiating soft neon light like always, but I was tucked in bed with a warm body that was keeping my cold self, safe and cozy. I beamed and told him I loved him too as I traced my fingers across the faint scar decorating his lower lip. He slipped playing Power Ranger tag when he was 10. It took me some time to share the stories behind my scars, but when I did, he listened patiently, held me close, and loved me wholeheartedly. We fell in love madly and deeply, as 20-year-olds do, and drunk on trust I told him everything about myself, my disease, and the dark feelings that festered in my stomach. The honesty and openness was liberating, and the fact he accepted me made me rethink how I felt about myself. Spencer helped me transform shame and silence into love and understanding. We went to different universities in different states, but we spoke on the phone every night. I was a fourth year in college, and I hadn’t taken my medication in years. Orange prescription bottles lined the circumference of my bedroom floor, still stuffed with pills and topped off with cotton. I had to keep refilling my medications because if I didn’t my parents would know I was going off the sanity grid.
Three months after our camp out in my childhood bedroom he said, “I can help you, Rach but you have to want this. You need to make this decision.” Spencer’s voice was eager yet supportive over the phone. I clutched my old Nokia that was crammed into a slightly-too-small white plastic case dotted with cherries, and my confidence faltered for a second. My left hand was filled with the magic number of pills that promised to bring me back into myself, but I wasn’t sure who that Rachel would be. Part of me was convinced I wouldn’t love her and no one else would either. Back to a body marred with immeasurable flaws and inexcusable fatness. Reunited with a tattered heart destined for loneliness and a malfunctioning brain that would make anyone embarrassed. All of this stuffed inside the sullen frame of an insecure teenager who was desperate to be normal. At that moment I wasn’t sure who the real me would be, but I knew Bipolar and my dear friend Mania were no replacement for a real relationship. They are not human. I knew for certain I loved him more than I loved Mania. But I didn’t think I loved myself enough.
Mania, with her effervescent sparkles, her complete lack of doubt, her polished charm and tantalizing charisma, helped me discover a body so beautiful that it deserved to love and be loved without apologizing or second guessing. Mania gifted me with treasured feelings of unparalleled excellence, cosmic importance, and incomparable brilliance. With her I wasn’t normal, I was extraordinary. But I was a danger to myself. The sobering truth I had successfully denied since I was 17 soon became harder and harder to ignore, especially after stints in the psych unit. While my Mania felt magical, opulent, and worthwhile, it had a deadly expiration date. Mania was deliciously otherworldly up until I was catapulted into the terrifying atmosphere of Psychosis only to be viciously plunged into the murky depths of Depression. Mania made me feel electrically alive but at the risk of hospitalization or even death. Was it worth it? Was I worth it?
I fingered the chalky pills in my palm that the FDA pledged would patch me up, but I had never given a chance before. These pills would end my love affair with Mania, snuffing out her hypnotic open-all-night neon light. I wanted to fall in love with the boy on the other end of the phone who wasn’t my savior but who could quite possibly be my soul mate. I whispered to myself a soft and scared “you can do this.” For the first time in my life I decided I had to try and love myself without Mania’s candlelight vigil. And before I could change my mind, with one swift movement, I popped six pills in my mouth and drowned them with a glass of water. They left an unpleasant aftertaste on my tongue. I pressed my cell phone against my cheek and stated, “I can do this.” I was really going to try this time.
* * *
I haven’t seen the inside of a psychiatric ward since I was 22 because I refuse to let mental illness become my life. Yes, my life is much more “boring” now, but that’s because when it comes to managing a mental illness, the everyday details are far from exciting or sensational. My self-care may look like trivial routines, monotonous habits, and meticulous patterns woven into every day life, but this gritty hard work is the lifeblood of taking your life back.
I don’t want to be sick.
Hypomania, Mania, Psychosis, and Depression are all parts of the same serious illness that tells you; you are worthless. Parts that antagonize your anxiety, prey on the darkest fears tucked in your heart, and escalate your deterioration until Princess Diana is the only guardian angel you understand. I can’t have Mania in isolation; it is a package deal, which is why bipolar disorder is not a divine gift, it is an illness.
And I am not a diagnosis.
I finally understand that I have a mental illness, and I will always have it. And while that isn't "ok" it is my reality and I accept it. But that doesn’t mean I only exist as a bipolar person. On the contrary, this is my life, and I don’t let bipolar disorder make my decisions anymore. I love the strong woman who lives at the center of each episode, who never leaves because she knows it gets better. I love the empowered woman who responsibly owns her mental illness, so it begins to disrupt her life less and less.
I love myself.
I’m better when I’m not sick.
I am carving out a future that is defined on my own terms based on the decisions I make every day. My future is bumpy yet bright.
Even without my George Foreman Grill fortune.
* * * *
Rachel Kallem Whitman is the author of one of the essays from Lee Gutkind's most recent workshop on "Writing Away the Stigma."
The psychiatrist started, “Your mom has told me you’ve been crying a lot,” and continued to relay what my mother had reported to him.
“Yeah…” I trailed off into the corners of the room, while trying not to make eye contact. I felt as though I might start crying and then break down, and then they would know how sad I was. I felt guilty for not being able to tell him what was wrong, ashamed because something was wrong with me that I couldn’t fix, and now I was at fault for upsetting the people around me by being abnormally sad.
At this point in my life, I had only heard about the world’s crazies, lunatics, and psychos from the adults on basic cable. My books didn’t really talk about insanity too much, unless the story was describing a “mad” character whose personality was more rebellious than a product of illness. Plus, any writers worth their salt shared one thing in each of their biographies: a baptism by fire in the same font of madness. Like they say, if you can’t stand the heat, get out of the kitchen.
When I was younger, the morning TV news said that last night, an escaped mental patient hid behind one of the trees near the road at the edge of the state hospital grounds, a mile and a half from our house. The escapee waited out of view until a single car came barreling down Hillside Drive. Then, he leapt out into the oncoming high-beams. On other occasions, when a mentally-ill patient escaped from the state hospital, the emergency notifications from the local news would interrupt our regularly scheduled program to inform us of the ongoing search. We children were taught to treat this information in the same fashion as if we had heard that an armed and homicidal serial killer was on the lam. We were taught to incite the same panic within ourselves if we were left in the car.
Lay on the horn if anyone comes up to the car. Keep the doors locked. Don’t talk to anyone. And, never let anybody in.
The strangers, the psychiatric staff—the ones in the white coats and ID badges clipped to their front pockets: I knew they could lock me up and never let me out and no one would come to get me. I knew enough to keep my mouth shut. I saw leathery and chalky straight-jackets with the sleeves crisscrossed in front and buckled-down in the back. I saw padded cells and isolation rooms from TV shows and movies: powerless, screaming faces being treated like criminals for being unable to control their emotions.
That was mental health care.
The psychobabble man shifted, with his choreographed cock-of-the-head listening gesture, and then he started asking the questions you can readily find on any mood chart.
Finally he asked me, “And do you think about hurting yourself? Do you have a plan to kill yourself?”
I panicked. I lied.
How could he know? No one was home when I tried. I mean, how could he possibly know how bad it had gotten? When he was satisfied with my answers, he called my mother into the office with us; he explained that I had reported that: she’s not suicidal, just depressed, keep an eye on her.
When I was home alone one night in the late winter, shortly after I had turned 13, my depression started talking back to me. I found myself crying and having an anxiety attack, crumpled on the cloudy blue shag rug in my bedroom. The next thing I knew was that I was sitting on the floor of my closet, clutching the glass rosary from the top of my dresser. I had started hearing voices. Now, mind you, they weren’t distinct voices telling me to do anything—it was more like a muted din of several whispery, gossipy voices talking about me and it didn’t sound good. It was my first auditory hallucination.
When the voices finally evaporated, I pulled myself up from the small planks of cedar, put down the rosary, took a seat at my desk, and then started writing a suicide note in blue gel pen on a lined, loose-leaf page of notebook paper. In the letter I apologized to the people that I loved: mostly friends and their siblings. I didn’t know how to get rid of the pain. And I was sorry. I loved them. I couldn’t stop crying and I was sorry. I continued the letter and apologized to them each by name.
And then, I just stopped.
I actually said, “Fuck it,” and stomped over to the bathroom directly across from my bedroom, tore up the note, and flushed it down the toilet. I watched each shred of a robin’s egg blue inked, college-ruled paper swirl down the bowl. I waited until the toilet re-siphoned the tank and was quiet again. I gave it a second flush to be sure the letter was gone for good.