"Mr. Rabinowitz, I'm very sorry. Your son is extremely ill. Based on our evaluation, we believe he may be suffering from schizophrenia."
I was numb and exhausted but stayed focused on the doctor's words. It was strangely relieving to finally have an explanation for my son's behavior.
While we had struggled with his oppositional attitude and substance abuse in middle and high school, my son was a carefree, gentle-hearted boy who enjoyed spending time with classmates, played team sports, and thrived in private guitar lessons and school choirs. A year after he enrolled in Berklee College of Music to pursue his musical talent, his behavior became erratic. His friends began calling and texting me, expressing their concern about his unexplainable behavior. We assured them, and ourselves, that we would help with what we assumed was a substance abuse problem. I had a plan. We would get through this.
My son's first psychosis was diagnosed in July 2011, one month before his 21st birthday. He spent 2 ½ months at Massachusetts General Hospital. During this hospitalization, I moved to Boston, and visited my son as often as the hospital suggested.
In addition to trying to manage my own grief about the illness of my son, I was researching treatment options. But where does one start? The hospital provided a few contacts, but those leads offered vague guidance. Days stacked up with innumerable Internet searches, untold phone calls, mis-directions, start-overs, and dead ends. The organizations that I reached out to for support and information were often disjointed or unresponsive (ironically, some of the same behaviors I saw in my ill son).
Professionally, I am a partner at a global accounting firm with 35 years of M&A experience. As someone who has researched complex financial issues for my entire career, I was confident that I could successfully identify the best resources to help my son.
Yet, I quickly learned that the mental health care system is extremely difficult to navigate. There is no road map to help a loved one suffering from mental illness, or help prevent my son from becoming one of the 5% of those suffering from schizophrenia who commits suicide. It is frightening to imagine what happens to those who do not have a loved one advocating for them. Why isn't there a manual that explains the common challenges of mental illness and different treatment options, national and local resources, and social services offered to the recently diagnosed? Why isn't this manual delivered to caregivers and patients during their stay at the hospital? Why does each individual and family have to begin the process of identifying support networks and treatment options, when so many others have quietly done the same before them, only to be frustrated by the fragmentation of the mental health system? It doesn't make sense.
Since his initial discharge from the hospital in September 2011, my son has spent over twelve months at a residential facility, unsuccessfully lived with his sister with the aid of community support services, and has been hospitalized 7 additional times. Relationships at home are strained and my son's behavior has left lasting vibrations throughout our family. My son, my family, and I are quietly suffering every day.
Although I am knowledgeable about mental illness, my ability to help still depends upon my son's willingness to accept help. Most services require that those suffering choose to engage; my son ultimately decides if he wants to see his psychiatrist, take his medications, or participate in an outpatient treatment program. Yet, hallmark systems of schizophrenia are social disengagement and a lack of insight about one's mental illness, often making these treatments frightening and confusing to my son. It took me weeks to sort through disability-benefits paperwork, yet the system expects those who are impaired to advocate for themselves. It doesn't make sense.
The mental health care system has failed to support my son in any recovery toward a stable, healthy life. Hospitalization is only intended to alleviate psychosis. Their doctors, nurses, and staff are not trained to assist with after-care support, long-term planning, or caregiver support. Law enforcement and the judicial system are not designed for recovery support either, yet they are often the institutions that are called upon to contain situations. Often, the mentally ill are incarcerated, temporarily housed in prisons that do not treat those suffering from mental illness toward a more sustainable recovery. It doesn't make sense.
Absent an integrated mental health care system that provides care for people who suffer with mental illness, I do not believe we will see improvements in the treatment of mental illness in our country. It is discouraging how many doctors, researchers, and professionals, committed to supporting those who suffer from mental illness, unanimously agree that the public and private systems are woefully inadequate to meet the needs of people who suffer with mental illness.
The partnership of social, judicial, and healthcare networks is the first step toward more effectively supporting those individuals who suffer from a severe mental illness. As we have closed our state psychiatric hospitals, we also need to significant increase funding for community programs, specifically outreach and peer advisor networks. Without a more effective system that anticipates the needs and problems of those suffering from mental illness, we will leave many of the over 8 million people in the U.S. who suffer from severe brain illnesses with little hope for recovery or quality of life.
In addition to changing how people with severe mental illness access assistance, we need to significantly increase funding for brain and socially based research. Severe mental illness does not just affect 3% of the U.S. population; it affects 3% of the world's population. However, funding for research is minimal compared to that spent on physical diseases. Treating mental illness is expensive. Ignoring it is more expensive, both in terms of dollars spent on ineffective programs and the loss of human life. Mental illness is still viewed as a shameless secret in our country, and we must begin to view mental illness as an epidemic, rather than a moral failure.
My story is not unique. I share it with millions of families who have lost the hope and the drive to try another treatment option. The media highlights the extremes. My heart goes out to the parents whose children have made headlines in Newtown, Colorado, Washington, D.C., and Tucson. How long did these parents, and many parents whose children never appeared in headlines, desperately seek help for their sons? The result can be unbearable isolation, loneliness and frustration when things are going well. I can only imagine the excruciating sorrow when tragedy is the end result.
I want to help transform our broken mental health system into one that offers people who suffer with brain disorders - and those who love them - hope. I want to live in a country that has a broad support network for the recently diagnosed. I want to be part of a community of people that values the dignity and the worth of people who suffer from mental illness. Systematic changes to our mental health system requires leadership at the highest levels of federal and state government, as well as a clear demonstration by communities, hospitals, and families that we will not allow a system that fails our loved ones to continue.
In President Obama's speech honoring the twelve victims of the Navy Yard shooting, he demanded reform, saying that the question is not "whether as Americans we care in moments of tragedy. Clearly we care. Our hearts are broken again. The question is do we care enough?" I hope that we do care enough. I hope that advancements in mental health over the next ten years make sense, and I am committed to helping my son and those suffering with mental illness in my efforts toward mental health policy reform.