Abbie and Mike adopted Joshua (not their real names) when he was two months old, a charming African American baby, “a sweetie-pie,” Abbie remembers. They were informed that his birth mother had used cocaine during pregnancy and that his birth father was incarcerated for an unknown felony, both of these risk factors for behavioral problems. Joshua seemed to thrive as a toddler. However, beginning with nighttime migraines when he was four, and escalating over time to psychotic episodes characterized by rage and terror, Joshua’s behavior problems have worsened.
Now 23 years old, he is trapped in a vicious cycle of substance abuse, violent destructive behavior, and psychiatric and addictions treatment, with essentially no progress to show from any of the interventions that have been tried. When not in a treatment program he lives with his parents, who describe their home life as chaos, always watching for the signals of the next episode. He cannot be left alone at home safely; he has been known to leave the house with the front door standing open, or with the oven on. Mike and Abbie cannot go on vacation or even go away for a couple of days because of the fears and suspicions of their neighbors. They feel trapped in their own home.
Abbie is frustrated that the healthcare system has been unable to find a treatment plan that works for Joshua. In-patient addictions treatment typically uses the Twelve-Step abstinence approach, which does not work for mental illness. Conversely, psychiatric hospitalization does not effectively address substance abuse. Along with the limitations of the programs, Abbie has experienced dozens of hurtful interactions with healthcare professionals and law enforcement officials. The most common theme is blaming: “They don’t want us involved, until they need us to take him when he’s discharged. They act as if we’re the problem – if we’d just leave him alone he’d be okay. Some of them have literally told us to write him off, to kick him out of the house; one even told me we needed to forget that we ever had this child. We hear the same thing from Joshua’s siblings, ‘tough love.’ I can see him now, sleeping on the library steps. How is that a solution? I can’t give up on him, just throw him away: that’s not a mother’s instinct. Even if we are enabling him, what’s the alternative?”
The helplessness of not being able to diminish Joshua’s suffering is agonizing. Abbie would like to take his hand or put an arm around his shoulder to comfort him, as she did when he was little. But now he recoils from her touch, and her heart breaks.
Mike and Abbie agree that the pervasive stigma of mental illness causes the deepest pain. For example, underlying the gun control debate is a common assumption that gun violence perpetrators are “crazy people.” Abbie resents people automatically putting her son in the same category as mass shooters, without ever having met him. And, as she says, it’s a myth that “crazy people” are likely to shoot or otherwise harm others.
The isolation of their situation wears Mike and Abbie down. They realize that their acquaintances, good friends, and even clergy don’t ask about how things are going with Joshua, because they don’t want to know. It’s hard for friends to acknowledge not having anything helpful to offer. Officially, addictions and mental illnesses are considered diseases, but the blaming and shaming Mike and Abbie have experienced demonstrate that care professionals frequently buy into the same stereotypes as the general public. Abbie speculates that their support networks would be happy to provide all kinds of assistance if Joshua’s chronic illness were diabetes, rather than substance abuse/mental illness. Instead, with the exception of a handful of dedicated friends, Abbie and Mike are avoided: “No one brings a casserole or even makes a phone call.”
Most of us aren’t in a position to redesign the treatment models or eradicate the stigma, but we can still be present to folks like Abbie and Mike. “Helping” doesn’t always mean fixing a problem, or even taking direct action. Sometimes asking “How are you?” is all that it takes (casserole optional).
Jo Glasser is working on a book for publication by Blue Ear Books. She lives in La Crosse, Wisconsin.
