So I’m not going to lie to you. This was a hard message to write and it promises to be a difficult one to deliver. It’s personal and it’s painful. And I share it only because my son Alex has given me permission to. Now I didn’t ask him about the specific stories I’m sharing because I don’t believe he remembers all of them and I think it would be traumatic to make him relive them. But he did say I could tell you about our journey over the last few years – and it’s an important journey to share.
Two words that affect all of us in one way or another. Two words that always evoke some kind of response. Fear, sympathy, guilt and shame are a few of the emotions it evokes. Hide, lie and deflect are a few common actions that result.
Last August I was walking with my then 19 year old son Alex on Harbor Island when he asked me if I saw it. What? I asked. Magic City. As he continued telling me about his spirit animals and mine, I was perplexed. One on hand he was sharing with me what could be considered some pretty deep insights into spirituality and our interconnectedness. He seemed so attuned to a place in which thoughts moved as waves between people effortlessly and he saw symbolism in nature, and animals and birds.
But I also knew things weren’t right. I really couldn’t see the cardinal or the canary. I really couldn’t hear the rap music. And I really couldn’t understand what my son was going through – or how much worse things would get before they got better.
He said it this way: I feel like I’m having an argument with by brain. I think something’s wrong with my creativity center. Mom, will you write down a thought for me? I feel like I haven’t had a thought in a long time.
One of the hardest things about having a son with mental illness is that you have to determine who it’s safe to share that information with. No one gets on Facebook to make this announcement and to receive a shower of congratulations. We don’t talk about it because it is fraught with misunderstanding and stigma.
Attitudes toward mental illness really haven’t changed that much over the centuries. First we thought it was a sign of demonic possession. Hippocrates changed the game around 400BC by skipping religious cures and treating the mentally ill by changing their environment or giving them medicine. But the Middle Ages saw us return to the idea that mental illness was proof of possession or maybe just immoral behavior. Such negative attitudes towards mental illness continued in the United States into the 18th century, leading to stigmatization of mental illness, and the inhumane confinement and treatment of the mentally ill.
In the 1840s, activist Dorothea Dix lobbied for better living conditions for the mentally ill after seeing for herself the dangerous and unhealthy conditions in which many patients lived. Over a 40-year period, Dix was successful in getting the U.S. government to build 32 state psychiatric hospitals.
The result was an outpouring of gratitude. Families and communities who had struggled on their own to care for the mentally ill were relieved that their loved ones could live in hospitals and receive treatment from professional staff. But while institutionalized care did increase patient access to mental health services, state hospitals were often underfunded and understaffed. Soon the system began to receive justifiably harsh criticism for offering poor living conditions and for violating their patients’ human rights.
By the mid-1950s, anti-psychotic drugs became available and the push for deinstitutionalization began in earnest. The idea was to move patients to community centered care, based on the belief that they would have a higher quality of life if they were treated in smaller communities rather than in large isolated mental hospitals.
In 1963, President John F. Kennedy signed the Community Mental Health Act. It changed admission criteria to psychiatric hospitals so that only individuals “who posed an imminent danger to themselves or someone else” could be committed. And it was supposed to provide federal funding for the construction of community-based preventive care and treatment facilities. Unfortunately, between the Vietnam War and an economic crisis, the program was never adequately funded.
Medicaid was passed in 1965 but it excluded coverage for people in institutions for mental diseases. This meant that the states had a huge incentive to move patients out of state mental hospitals and into nursing homes and general hospitals.
By 1977 there were 650 community health facilities serving 1.9 million mentally ill patients a year.
NAMI, the National Alliance for the Mentally Ill, was founded in 1979 to provide “support, education, advocacy, and research services for people with serious psychiatric illnesses.” And in 1980 President Jimmy Carter signed the Mental Health Systems Act which was supposed to lead to the restructuring of community mental-health-centers and improve services for people with chronic mental illness.
But in 1981, under President Ronald Reagan, the Omnibus Budget Reconciliation Act repealing Carter’s legislation, establishing block grants for the states, and ending the federal government’s role in providing services to the mentally ill. This was the final step in deinstitutionalization. In the process, the Federal government decreased funding for mental-health by 30 percent.
In 1984 an Ohio-based study found that up to 30 percent of homeless people were suffering from serious mental illness.
By 2004, just 20 years later, studies suggested that approximately 16 percent of prison and jail inmates were seriously mentally ill, roughly 320,000 people. At the same time there were about 100,000 psychiatric beds in public and private hospitals. That means there were more than three times as many seriously mentally ill people in jails and prisons than in hospitals. Between 44-64% of all inmates had mental health problems.
In the aftermath of the Great Recession in 2009, states were forced to cut $4.35 billion in public mental-health spending over the next three years, the largest reduction in funding since deinstitutionalization.
In 2010 there were only 43,000 psychiatric beds in the United States, or about 14 beds per 100,000 people—bringing us right back to the same ratio as in 1850. In place of institutionalized care, there is supposed to be a network of community-based mental health care that includes community mental health centers, residential homes and community-based psychiatric teams.
But if you’ve noticed, our own state has slashed funding for mental illness by 60% and as a result programs are closing and people are losing access to much needed services. Even with corrections to the distribution formula, Lynn Doyle of Ottawa County CMH predicts reductions of $4-5 million over the next four years.
Now there are some agencies filling some gaps. TCM will see anyone that CMH turns away and they also have some small groups. St. Patrick’s has a support group for Bi-Polar disorder. And CMH does have services for severely mentally ill people in Grand Haven. But any programs – Club House, Family Education, Residential Treatment, etc. – are all things you have to go to Holland for. We simply don’t have any of those options here in Grand Haven.
What are the statistics today? There’s an infographic in your bulletin that you can take home with you but let me share a few really big numbers with you now. These were reported by Lindsay Holmes of the Huffington Post last December.
61,500,000 – This is approximate number of Americans who experience a mental health disorder in a given year. That’s one in every four adults. And mental illness doesn’t discriminate. It strikes people of every race, gender and economic background. Even today many people seem to believe you can overcome mental illness with simple willpower. I wish that were the case. It’s not. Mental illness is a serious medical condition that requires the same kind of care that any physical illness receives.
$100 Billion – This is the estimated economic cost of untreated mental illness in the United States. This number includes the consequences of unemployment, unnecessary disability, substance abuse, incarceration and more.
70 – 90% – This is the percentage of individuals with mental illness who saw improvement in their symptoms and quality of life after participating in some form of treatment.
60% – And this is the percentage of adults who didn’t receive mental health treatment in 2012.
400,000 – the number of people in jail or prison with a mental illness – 10 times more than those in mental hospitals.
7 is the number of people who die by suicide per hour in the Americas.
And 3,500,000? That the number of Americans who suffer from schizophrenia. Schizophrenia usually develops between the ages of 16 and 25. One of those 3.5 million Americans is my son.
So enough about numbers. Now I’m going to take you on a very personal journey. I’d like to take you into the mind of a person with schizophrenia – but I can’t do that. I can’t really understand how my son processes the world. But I can tell you a few stories to give you some idea of what his life has been like the past few years.
When Alex had his first break from reality he was 16 years old and a junior in high school. The school called me to pick him up because he wasn’t “there” and they thought he must be on some kind of drug. He had been staying at his dad’s house so I picked him up and kept him overnight. I brought him to school knowing he hadn’t had any drugs or alcohol. But they called me a couple of hours later telling me he was definitely “on” something. He wasn’t responding to them and he was clearly “somewhere else.”
On the way to the school I began hoping he was high, that he had gotten hold of something he shouldn’t be taking – because if he wasn’t, that would that mean something much worse was going on.
I brought him to the hospital where they tested him for drugs – there weren’t any in his system – and then transferred him by ambulance to Forrest View. The next couple of years included a variety of diagnoses and attempts at helping him to stay connected to reality – with varying degrees of success.
And then that walk a year ago made it clear he needed more treatment than we had been providing. I am grateful that funding was still intact as CMH approved several admissions to the hospital and residential care over the next 5 months before we found the right medication and were able to help Alex stabilize.
Despite what the news and media may have led you to believe, violence is not a symptom of schizophrenia. When Alex is symptomatic, he mostly stares into space, making gestures, listening and sometimes speaking to people I cannot see. When he is symptomatic, I have to constantly remind myself that he is not being deliberately disrespectful or belligerent. He is not being rude intentionally. He is just very distant from me and I need to allow him the space he needs to move silently within his own mind.
At those times my most important role is not to try to tell him what he experiences isn’t real – it is real. My most important role is to keep him safe. This is one of the stories that best illustrates that need. One night Alex stepped outside with a big blue stuffed bulldog under his arm. It was a carnival prize he had won a few years before. Then he started down the sidewalk. I went after him and he told me he didn’t want to walk with me this time and he didn’t want me to follow him. Well, you don’t just let your 19 year old son walk through town on a Friday night with a big blue stuffed bulldog under his arm, so I followed at a distance. When he got to the Eagles on the corner of Fulton and 2nd Street he sat down on a bench and I approached him. He got up and told me to go home that he really needed to be alone. This time I was more stealth in following him. He walked to the deck beside Snug Harbor and sat down on a bench there. I watched him for an hour. Finally, I thought enough time had passed and I approached him from a the other side of the deck. I sat down next to him without saying anything. Then he told me he the rap star Lil Wayne was supposed to pick him up that night and they were going to go off and live together. The disappointment hung on him and it was heartbreaking. Maybe in an effort to make himself feel better he said, he showed up though. He drove by in his bus. After a few more minutes I asked if he was ready to walk home and we returned together.
One in four people will be affected by mental or neurological disorders at some point in their lives. Treatments are available, but nearly two-thirds of people with a known mental disorder never even try to get help. According to the World Health Organization, it is stigma, discrimination and neglect that prevent care and treatment from reaching people with mental disorders.
On an individual level, stigma keeps people from telling anyone that they are having mental health problems. Stigma prevents treatment and recovery. Stigma limits opportunities. Stigma keeps people from admitting their struggles even to themselves.
On a systemic level, stigma creates barriers for public health efforts.
Stigma results in lower prioritization of public resources allocated to mental health service. Stigma results in a poorer quality of care being delivered to people with mental illness.
Stigma isolates and isolation only makes mental illness worse. In fact, 58% say that the stigma of mental illness is more damaging and harder to deal with than the illness itself. Stigma, in the end, too often permanently cripples or kills its victims.
Given theses challenges, what can you do? For one thing, you can embrace the idea of neurodiversity recognizing that we are all to one degree or another wired differently. We process things differently and understand things differently. That doesn’t make people who experience the world differently from me or you “wrong” or in need of being “fixed.” In fact, there are lots of examples of people with mental illness who have made amazing contributions through their art, craft and logic. On the other hand, we need to be wary of romanticizing neurodiversity.
These are excerpts of a letter my son asked me to type when we were in the middle of tapering him off one medication in order to try another. It was the second hardest experience of our journey so far.
I am schizophrenic. It started at 16 years old. At 17 I started to find out about Magic City. At first, it seemed like a good place. It should be a good place except for bullies and terrorists inside. There are groups of people who make life hard like destroying feelings that you get from music, making people feel like nothing, being sad when you’re not.
Groups of people doing things like making it hard to think and stuff like that. They try to turn your thoughts against you. They make you make decisions between things that are very messed up like either tonight you will be a suicide or a homicide. Like today that happened to me. I believe I am not the only one but I might be. I am a prime target as far as I know. I can’t stand it. I wake up to me being happy and feeling like myself, body, mind and flesh and after I get out of bed and I’m up and going it all starts over again every day. It starts maybe 10 minutes after I’m up.
This is an SOS message. I’m not asking for money. I’m only asking for a place to stay far away from where I live where I can be safe and under the protection of the Pawn Stars and I hope that you will send me a letter back. Robin Williams hanged himself and Magic City might have had something to do with it. Magic City is scaring me.
Today my son is doing very well and he tells me that things are good in Magic City. My goal is no longer to rid Alex of his voices and visions. They will probably always be a part of his world. My goal now is just to help him remain stable and functional and safe. And to fight for adequate funding and to eliminate stigma. And you can help me. How?
1) Well, if you are 1 in 4 who struggle with mental illness
a. Don’t be afraid and don’t be ashamed. Recognize that you are not alone and that there are many people who do understand and who do care that want to help in any way they can.
b. Get help. You can’t cure mental illness on your own. It isn’t about will power. It isn’t about trying harder. It isn’t your fault that you are ill. You wouldn’t criticize a diabetic for taking insulin so extend that same compassion to yourself and follow through with your treatment. Taking medication doesn’t make you less, it makes you healthy.
c. When you are ready and when you have a good support system in place you may choose to become an advocate for mental health. By telling your own story you can help dispel the myths and misunderstandings. But your first responsibility is to your own well-being.
2) If you have a loved one struggling with mental illness
a. Don’t take it personally. It really isn’t about you. Your loved one isn’t angry at you, is not trying to hurt you and is not trying to sabotage your life.
b. Don’t blame yourself. We understand very little about the brain and we just don’t know what the cause of mental illness is in many cases. Blaming doesn’t help anyone recover. Instead focus on what can be done now to create an atmosphere of health and recovery.
c. Get the support you need. There is so much to process and so much uncertainty when a loved one has a mental illness. Don’t isolate yourself. Find a support system where you feel safe talking about your struggles, your frustrations and your needs.
3) If you are talking to someone who is sharing their story please keep these two rules in mind.
a. First, don’t ask how this could have happened. I already mentioned blame. As human beings we want to be able to “blame” someone or something so we can “fix” it. But mental health doesn’t work that way. None of us are perfect and all of us who have a loved one trapped in mental illness have already spent far too much time on this question, mostly trying to blame ourselves. Discipline yourself to accept the past for the mystery it is so you can be present with your friend where they are today.
b. And please don’t tell us that whatever is working now for our loved one isn’t the right thing to be doing. Its fine to let us know you’ve heard about new research or to send us an article. But please try to respect and appreciate that nothing about mental illness is a fixed science. We have tried everything and if something is working we aren’t going to mess with it just because you think there’s a better way. I’ll give you an example. I recently met a women who blames electric currents for mental illness. She thinks medication is a problem and my son shouldn’t be taking anything. Well, she may or may not be right about the electricity. She may even be right that there is a better answer than medication. But the last time my son was not medicated was the worst experience of our journey. It was during those excruciating few days that he would gasp and grimace and stare in wide open terror. It was during those days that he was seeing images of his friends committing suicide in all kinds of gruesome ways. When dealing with mental illness you don’t just decide to try something else on a whim and you don’t appreciate the implication that you aren’t doing the best you canyou’re your loved one.
4) Finally, for everyone, whatever your connection or distance from mental illness, please consciously act to end the stigma.
a. Ignorance is a constant companion of stigma. Learn. Become informed. Then share that information with others.
b. Vote for and support politicians who will help end mental health disparity in our country.
c. Whether its meditation, music or medication, when you talk to others about your health include your mental health as an integral part of your well-being.
d. Cultivate compassion. Listen to what others are trying to say and allow room in your world for their reality.
e. Embrace neurodiversity and recognize that it doesn’t define the person. My son is not his diagnosis.
f. Politely educate and inform others when they say things that are untrue or hurtful about mental illness and the people who struggle with it. Be a voice for the voiceless.
In the end, the best thing you can be is an advocate. Our whole healthcare system is in many ways broken. Mental health within our healthcare system is profoundly flawed and can be nearly impossible to access. My son would never have gotten the help he needs if he had to try to navigate that system on his own. I knew much of the system from the inside because of my previous work and still I struggled to figure things out.
Often people with mental illness have no advocates. The very nature of their illness has driven people away and severed the most important relationships any of us have in this life. So they need us. They need us to speak up, to vote, to be part of the change. Extended Grace is looking at how we can help fill the mental illness gap in our community in order to provide advocacy, support and resources for people and their friends and family. If you are interested in joining those conversations and engaging in that work, please let me know. We need the kind of compassionate and caring people that make up the C3 community.
Now I recognize that I have taken a great risk in sharing with you so openly my son’s reality. But my son is taking an even bigger risk – taking the chance that by inviting you into his experience that you will leave here not feeling sorry for him – he doesn’t need your sympathy – but feeling empowered to dismantle stigma and to demand that mental illness be treated with the respect and the resources it deserves. I admire his courage. May we all be so brave.