(June 10, 2014) In early April of 2012, my son announced he was crippled and went to bed in the middle of the day. His ankle was pulverized. He had a brain tumor. His back was broken in three places. He promised to get up when he healed. I asked him, When will that be? He said that he wasn’t sure, but probably not soon. I left his bedroom and closed his door.
In the next two weeks, he quit eating and drinking. He couldn’t trust anyone to bring him food. He saw poison being pumped into the water supply. He could only use the rest room with assistance. He smelled; his clothes were turning black. His lips were crusted and cracked, his hair matted. I sat by his bed, putting ice chips in his mouth and wiping his face, begging him to make a good decision for himself and see a doctor.
Two weeks later, police crept up the stairs to his room and helped him, shaking, weak, and filthy, into a squad car to go to the hospital.
If you think that’s an odd series of events, it’s because I left something important out. My son is severely mentally ill. He has schizophrenia, a thought disorder that includes hallucinations, delusions, and paranoia. Before the April events, he had quit taking a medicine called Clozapine, used for hard-to-treat cases. Between February and March, he quit bathing and changing his clothes. He became disorganized and missed work, then got fired. He began sitting in the living room all day, not speaking, and staring at a television that wasn’t turned on. He made no phone calls, saw no friends, made no attempts to engage in any activity. He couldn’t answer questions, even when they were direct.
As he degenerated, his doctor and I had many conversations—why was he deteriorating so dramatically? Was he under medicated, over medicated or wrongly medicated? On the day my son went to bed, he announced there would be no more doctor visits and weekly labs—required by law to get meds dispensed—and no more pills. By the end of March, it was clear—whatever the reason, he was floridly psychotic. He was sicker than he’d ever been. He really, really needed to get to a hospital.
In early April, I phoned Crisis Intervention teams, both county and city, three times, but no one would come. Finally, I went to the local courthouse and begged a judge for an emergency petition. In Maryland, it’s a legal remedy to bring a person who is a danger to himself or others in for an evaluation. The police served it the next morning. His bed was waiting at Johns Hopkins, but the law requires transporting to the nearest hospital, one that has no psych unit. He was transferred to Hopkins where he refused medication.
On April 16th, he lost a hearing on his competency. He was still in a wheelchair, still in his same clothes, and unmedicated. A week later, he lost a medical panel convened to decide if medication was warranted. He was still in a wheelchair, in the same filthy clothes, but was now mute and catatonic. After a 48-hour appeal process, he finally received an injection of an antipsychotic. This was his 9th hospitalization in four years. He was unmedicated overall approximately three months and lost forty pounds.
He was discharged from the hospital nearly two months after he was admitted. He walked his sister down the aisle at her wedding on July 28th.
I support the bipartisan mental health reforms in the Helping Families in Mental Health Crises Act (HR 3717), to help young men like my son have a chance to recover. There was a legal remedy in our case and we used it: my son’s refusal to eat while paranoid made him a danger to himself.
I support HR 3717 because it closes the legal gaps that prevent parents like me, a caretaker of a severely ill adult child, from getting our children to care. It provides real medical parity for our sick children. It ensures that federal funds awarded into the billions of dollars each year are truly earmarked, with proper oversight, toward care for those like my son, who is sometimes too sick to know he’s sick.
HR 3717 gives parents the rights as caregivers that are essential for assisting our children and ensuring their continued health. It marks funds for an assisted outpatient treatment (AOT) model that has proven results in reducing failures of the mentally ill to function in the community, and greatly reduces incidents of violence and incarceration among those most affected.
This legislation rectifies the many, many wrongs we’ve committed as a wealthy, compassionate country—that the mentally ill have been rotting in jail cells and under our cities’ bridges for almost forty years as a lifestyle choice.
If you oppose HR 3717, I want to ask you: What should I have done as a mother, when my son went to bed and tried to starve himself to death? One of the absurdities of our situation is that if my son had any other brain dysfunction, I would be legally negligent and abusive in not seeking medical help, but with the same injured brain, in a different disability, I am “supporting a choice” he makes to starve himself while delusional. Today, he is living in an apartment with a friend, going to therapy daily, planning for work and school. I’m sure he is not sorry that I violated his rights, or fought to give him his life back.
Reread my story, and think about just the impact of that single absurdity on a family struggling to help stabilize a young adult with a severe mental illness. The promises of community health care are bereft of meaning—a clear 40% never receive any care in the community. Parents like me know that without real reform, our children will languish, suffer and too many times, die of illnesses that are treatable.
HR 3717 will ensure that children like my son can all have a better future because there will be remedies in place to get quality, continuous, appropriate medical care for our children. If the reforms seem drastic, it’s because there is so very much to fix, so very much broken, in our mental health system.
In the end, as a mother, I know that passing HR 3717 is the humane answer to helping us help our children.
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