My son has struggled with paranoid schizophrenia, and anosognosia when he is symptomatic, for 15 years. Two years ago, his biological father passed away. At that point, he decided to stop taking his meds. By the time he called mobile crisis, he was fully symptomatic. They asked if he felt like he wanted to harm himself or others. He replied, "Of course not." They recommended he call his psychiatrist.
At this point, he thought his psychiatrist was the devil's spawn. It took a year before he met my state's standard for involuntary commitment. At that point, he was defending St. Maria with a switchblade, stabbing and punching walls. He wrote a letter stating that someone was going to get stabbed tonight—he didn't know who—"but everything will be alright."
We slept behind locked doors. We involved mobile crisis in wellness checks. He put a towel around a bottle of lighter fluid, pulled a log in front of both our cars, and set it on fire. He came to our room with the knife in his hand and stared at us both with dark eyes and no affect. When I asked, "What's up, buddy?" he said, "Your lips aren't moving, but terrible things are coming out of your mouth."
We called mobile crisis. They put him in based on this evidence, on an involuntary hold.
In the first hospital, he refused to sign a Release of Information form or a HIPAA form. Later, he told me he had signed that form when he was "25.7 years old." Mobile crisis suggested letting the hospital know that you are evoking a duty to warn, where they must inform you of his release. His involuntary court hearing had to be postponed because he was so symptomatic in psychosis. After a week with no meds, suddenly he was ok for trial.
He was provided an attorney to assure his rights to be as sick as he wanted to be—but no right to be well. I was called to testify, and the judge only allowed what happened within the 24 hours before he was brought in. They asked no questions, just took my statement and hung up the phone. They called me back and said they had put him in an Uber and he was heading toward a homeless shelter in downtown Baltimore. No phone, no wallet, and in full psychosis.
He diverted his Uber to another county where his aunt lived, where he immediately went for her knives. She petitioned her county for an involuntary hold. He was sent to an ER, where they transferred him to another psych unit three counties away. This time, he signed the ROI and HIPAA forms because he was on the phone with me, asking where I was. I told him if he didn't sign the forms, I couldn't advocate for him. He grabbed a nurse at my insistence, and she had him sign.
At another involuntary hearing, again he was so symptomatic they postponed. At his second hearing, he was granted involuntary hold. His medications against objection were a week later. He again had a lawyer, who told him he could appeal—which he did. He has a high IQ and sounds like a lawyer when he speaks. They granted him the appeal. Another week went by. He was at six weeks within the system with zero medication. He finally failed his appeal because he couldn't even give his name.
He was kept for three months but was not stable at his release. When he got home, he tried to assault his stepfather, and back he went immediately into another hospital—this time voluntarily.
They wanted to release him because he showed no signs of homicidal tendencies inpatient. I called a family meeting, and we met with the team and my son. The psychiatrist was surprised how much my son talked in the meeting. At one point, he became confrontational, and the security guard stepped forward. The psychiatrist said he was a good patient and was going home.
We told them we were afraid for our lives. He suggested pressing charges or getting a restraining order. I told them I didn’t want to send my son to prison or make him homeless and a danger to others. He said, "What do you want me to do—put him in a long-term facility? Well, there is none," and went on to say, "I feel safe with him."At which point, I pointed out that I guess he does—with a security guard there, and in a place that doesn’t even allow shoestrings or books with staples. Then I asked him if he would feel comfortable if there was a knife on the desk between them. Again, he said to press charges or get a restraining order.
I looked at my son and told him, "They want me to put you in prison or make you homeless. No extended family will take you in if you're not on your meds. I will take you home because I believe you're ill, not a criminal—but you will take any meds the docs give. I will dispense your meds. You will go to your doc's appointments, and if anything goes south, we will be right back here." He agreed.
When we got home, I called his private psychiatrist and asked him to add Clozapine to his meds. He agreed. Two years later, he still comes to get his meds. His long-acting injectable starts to wear off about four days before it's due, and he asks when his appointment is. I believe he feels symptomatic and knows he needs the shot.
He goes to his appointments. He is doing well. His cognitive decline is awful, and knowing that the longer one remains in psychosis the more grey matter is destroyed, I am angry at the lack of parity in care.
To me, it is malpractice—because I know of no other illness where someone is denied care because they aren’t homicidal enough or suicidal enough.
Each story is shared by someone impacted by untreated SMI,
lightly edited for clarity, never for meaning.
Do you have an ask? If you were sitting down with your legislator, how would you ask them to help you?
Change the law that will not let me speak for the one in psychosis
