About my family

David and Connie Johnston moved to Franklin Park in 1968, when David became the pastor of the historic Fairmount Presbyterian Church. They raised three girls, Ellen, Ruth and Rachel. I’m Ruth, the middle daughter. I graduated from North Allegheny in 1982, went to St. John’s College in Maryland, then graduated from Penn State in 1985. I lived in California and New York for most of my adult life, until a family split sent me back to live with my parents. My sons were teenagers, and Levi, the oldest, lived with us in his early 20s due to his Aspergers disability.

Her three daughters gave her ten grandchildren, to whom she loved reading books. An avid gardener, she was always cheerful, often making jokes (see “American Gothic, 2007,” at right) and puns. Her greatest love was talking about Jesus and Christian love. Many people told us after her death about times when she had given them time and compassion, helping them through difficult periods.

I have a chronic muscle disorder that causes stiffness and fatigue, so I was not able to live on my own when I separated from my husband in 2005. My parents took us in, myself and my youngest son, 13. My middle son chose to live somewhere else, and Levi lived with us off and on.

Growing up in rural New York, Levi was a typical Aspergers “Little Professor” who knew everything there was to know about airplanes and had a wide imagination. He helped rebuild an airplane and learned to demonstrate Native American wilderness skills. He was studying biology at community college, and he also got enough art training to illustrate my first book. These pictures give you a little sense of his pre-illness life…

While he was 18, Levi began to feel that he couldn’t concentrate. He completed academic projects with difficulty. His sleep cycle became very disturbed, and he preferred to be alone than with family or friends. After we moved to Pennsylvania, his symptoms of emerging schizophrenia became clearer, though it wasn’t until he was well over 21 that it seemed to be more than just the eccentricity that goes with autism. He didn’t believe he had a problem, and he was afraid of the schizophrenia diagnosis. For a few years, he lived with his other parent in another state, then came back. By then, age 26, it was very clear that something was wrong.

Trying to get him into treatment…

Levi was hospitalized once when he cut himself lightly – technically, that was “danger to self.” But the hospital staff didn’t find a medicine that worked well before he was discharged, and he never met the danger standard again. Some well-meaning county staff coached him in how to avoid hospital – if only such coaching could have cured the actual disease! Levi entered an early psychosis treatment program with many outpatient appointments, but he still didn’t believe that he was ill. He believed that he was the one in danger, from his grandmother, whose soul (he believed) was no longer in her body. When things got too intense, sometimes he stayed (voluntarily) for a few days at the Resolve Crisis Center, and there they told him again that he needed treatment. But nobody could convince him and there was no power to force him. Everyone told us that we would just have to wait until “something happens” and hope it wasn’t too bad. Most confusing to me, making him accept treatment was considered as parallel to being arrested, so we heard more than once, “It isn’t illegal to be delusional.”

Levi didn’t “snap” out of frustration or anger; he wasn’t even depressed. His delusional world just built up for enough years that it was very real to him. He had a whole alternative history, events he could remember participating in, angelic friends who had come and gone. He believed that he was fighting evil next to the Archangel; he drew diagrams about how to channel the power of good against the power of evil. He told me that soon evil and sickness would be vanquished, and nobody would need food. It was just very clear to him that he, himself, was not “sick.”

Becoming more disabled…

At the same time that his delusional world became so real, he was losing abilities in the real world. He had more and more difficulty understanding what we were doing around the house. It was strange because the severity came and went. One weekend in summer 2012 there was a huge storm that began flooding our basement, and only Levi, I, and two younger teenage boys, were at home. He stepped in, with intelligence and decisiveness, to direct the emergency actions. But two weeks later, we had to move furniture around in the clean-up process, and suddenly he could not understand what was happening.

Sometimes he did not seem to understand what I was saying to him, and he moved very slowly, as if he were walking in water. He even told me at times that I was becoming “mentally ill” because I didn’t “make sense.” Sometimes he lost his car in the parking lot; once, he called 911 to report it stolen, but the police helped him find it and brought him home. Finally, about three months before the end finally came, he sat outside in the snow for hours without food. When he came inside with dangerously low blood sugar, he fell down the stairs, fracturing his nose and back. He had one overnight in Presbyterian Hospital’s trauma unit, where he tried to recruit the nurses into the Angelic Army. Even then he didn’t meet the danger standard to be transferred to the psychiatric hospital.

Those times are nightmarish to remember.

If only we had been collecting evidence for AOT…

If we had been collecting evidence that he could not live safely without supervision, we could have filled a bushel. The law didn’t care, it only cared about threats or assault. If only it had been different…

Levi would have met Assisted Outpatient Treatment criteria. He had been hospitalized only once for specifically psychiatric issues, but his trauma hospitalization showed inability to take care of himself. We had his 911 calls for things like losing his car or claiming his grandmother was trying to kill him. We had observations from the Resolve Crisis Center and his outpatient doctors. We had his writings about the end of the world, which didn’t prove “clear and present danger,” but might have informed the judge about his misunderstanding of how the world works. All of these things could have put him on meds, with a judge’s warning in his memory.

AOT would have prevented so much pain and the waste of two lives.