“Don’t give up on me, Mom.”
When my son, Ben, made this plea at the age of 19, he was in the early stages of what would become a severe mental illness, and we both feared what the future might hold.
Even our worst fears haven’t matched the reality of our experience.
Not only have we had to navigate a health care system unlike any that treats other physical health problems, but we’ve found ourselves thrown into the world of criminal justice.
Brain imaging is beginning to shed some light on the parts of the brain afflicted by mental illness, but at this time, no diagnostic tests exist to diagnose and treat it. As a result, treatment involves drugs that may or may not alleviate symptoms. Whether or not those drugs will be effective may not be known for several weeks.
In the event that they do not alleviate symptoms, the drug is changed, and the wait begins all over again while the awful symptoms continue unabated. In Ben’s case, those symptoms included sleeplessness, increasing verbal combativeness, destruction of property, and delusions.
Over the course of 10 years, Ben’s health care treatment has at times been shoddy, if not downright criminal, but this has been tempered by loving, compassionate care, as well.
The tragedy of mental health care in the U.S. is that we have criminalized the mentally ill. Part of the backlash against the deplorable conditions in mental institutions of the past was to deinstitutionalize the mentally ill without providing a backup system.
The result has been the homelessness or the incarceration of those who become symptomatic, rather than the provision of hospitalization they so desperately need.
Because the law requires that a person be a threat to themselves or others before being hospitalized against their will, families must helplessly watch the deterioration of their loved one before treatment can be forced.
Both judgment and insight are compromised, so behavior can manifest itself in bizarre ways, most of which fall within the parameters of criminal misdemeanors while others, unfortunately, result in national tragedies such as the recent Washington Navy Yard shootings.
Even more unfortunate is the way we politicize these tragedies for agendas that have nothing to do with the root cause – the lack of good mental health care.
So how do I answer Ben’s plea?
I work to change laws that prevent families from getting treatment for their loved one.
I work to change the minds of people who see mental illness as a character flaw, and so perpetuate the shame and stigma attached to an illness that no one chooses to have.
I pray for a time when people will observe odd behavior and recognize that they may be seeing a shattered life that once held great promise.
I look at pictures of Ben when his eyes were clear and his smile was bright, and I remember.
Note to readers: Mary Brokaw is vice president of National Alliance on Mental Illness, Sauk Area, a not-for-profit membership organization created to improve the lives of individuals and families challenged by mental illness. Mental Illness Awareness Week is Oct. 6-12.