The Complexity of Awareness

By Mark Creekmore

September is suicide prevention month and next week I (and NAMI WC) am presenting at the VA Community Summit on Sep. 15 which you can attend. (See the Events Section of this Advocacy Digest for directions.) Our topic is entitled: “Foregrounding Families (Friends) as Protectors Against Suicide/Violence” Here are the slides with notes.

In this essay I want to give you my observations and conclusions, the backstory about this presentation, and what I learned, personally. 

I have three conclusions to present from the viewpoint of families and friends:

1. For most families and friends, the intensity of attention given to suicide by policy makers and treatment providers should also be given to other risky or violent behaviors. 

 NAMI supports suicide prevention and the focus which it receives this month. We also recognize the importance of treatment specializations for suicide and other risk-taking behaviors. From our perspective, however, any seriously self-harming behavior should be addressed quickly and treated, regardless of whether it intentionally seeks to end one’s life. To us, the different ways of inflicting self-harm (which separates programs and treatments for suicides, drug overdoses and other high-risk activities) is not materially important. 

Here is the case against the typical definition of suicide. The current definition of suicide is more useful for program policy makers than for us (friends, family members and advocates). 

2. Programs to the general public should expand and improve everyone’s awareness both about mental health problems (which focus on health, self-harm and risky behaviors) and about relationships.. 

Awareness of a mental health condition is needed, because decisions (or intentions) to change depend on it. Here is a more detailed discussion about awareness of mental health conditions.

Lack of awareness about a problem and its treatment may have simple causes like ignorance, neglect or denial. It may also have more complex causes, for example when it is a symptom of mental illness or the result of fluctuating moods. 

For family and friends, one of NAMI’s constituents, the awareness about the importance of our relationships is as important as the awareness about a given mental health condition. Relationships in fact drive much of the awareness about mental health problems.   

Family and friends (of people at risk and in need of change) are often ignored by treatment programs, which for the most part expect the people seeking help to have some awareness of the need to change. As the story below shows, adherence to treatment sometimes depends on the relationships between the patient and family/friends, not agreement with the diagnosis. 

Relationships are often the only reason people enter, adhere to and maintain treatment. The two activities (treatment and relationship) are very different from each other, and we should not be surprised that they are siloed from each other. 

NAMI and other grassroots organizations have been successful at educating and training family members and friends. Many reasons exist to expect that programs for family/friends should be developed separately from programs for treatment.

3. Friends, family members and people at-risk of mental health conditions should not only expect resistance when they seek to change how others’ behave, but they should also understand ways to address it. 

My presentation includes discussion of the LEAP program, developed by Amador who is both a treatment provider and a family member. LEAP has been primarily applied to family and friends, but it can also be used by the people at-risk of mental health conditions. 

One of the most difficult decisions for family and friends is how and when to require people at-risk of mental health conditions to change. 

One of the most difficult decisions for people at-risk of mental health conditions is when they can no longer rely on family or friends. 

The civil and criminal justice systems have been used to mandate change, including when relationships need to be changed. These decisions are prescribed and limited by law. Recently, however, a civil dispute resolution process has been used to improve voluntary adherence and to avoid court orders. 

We observed the limits of mandating behavior during the pandemic. This is a good time to promote more discussion about the issues of harm, violence, risk and mandates across the spectrum of public health issues. These discussions will benefit by greater awareness about the similarities and differences among public health decisions like auto safety, drug control, pandemics and suicide. 

Two stories which illustrate some of the complexity about awareness. 

I have two stories which illustrate the importance and complexity of awareness about a mental health condition relative to the awareness of relationships with family and friends. 

Story 1: I talked to a person with serious and chronic mental illness about his medication. Before treatment he explained that he had lost his very successful career and had become homeless. He said he was now taking medication for it, and I asked if it helped. His reply was he took medications not because it helped, but because his family wanted him to. He said that he really did not have a mental illness. 

For the purposes of this presentation, I don’t think it is necessary to rectify this paradox. (Many explanations are possible. Perhaps he was aware that medications helped, but he did not want to discuss it with me. It is also possible that his explanation and awareness changed from one moment to the next.) I accepted his explanation in its simplest form, however, and concluded that his awareness about his relationships to family was greater and more important than his awareness about his mental health condition or treatment. 

On further thought, however, I have been struck by the various types of awareness implied by his story and their interrelationships. He was aware of many things: his illness and its devastating effects, his relationship with his family and its importance, and the primacy of the relationship to family over his own judgment. I suspect he was also aware that he and his family disagreed about his mental illness. And finally, he told his story in a few short minutes which suggested that he was aware about the nature of my questions and interest. 

To me, this story suggests first that awareness consists of many separate awarenesses. Secondly this story suggests that several apparently inconsistent but stable forms of awareness can co-exist. We sometimes construct awareness as simple, linear narratives which lead to a single conclusion, but this story illustrates something different.

Story 2: This second story is about my own experiences with suicide and violent death. My family has experienced three cases of suicide and violent death which occurred across generations. I was aware of these cases as separate facts, but I had never considered the relationship between them until I began working on this presentation. At one level, I was aware of them as events and tragedies, but I had not really considered them together, what they held in common or how they related to my own precontemplative ideas about injury, violence and death. 

Their overriding common characteristic was that these deaths were never discussed. Otherwise they were quite different. Only one death involved the hint of stigma: the intentional murder of a family member whose killer was tried but not convicted because the murder was justified. My sense as a child was that my family felt shame for one of its members being killed, justifiably. The violent death by suicide was by a mother who was the sole caretaker of her very demanding physically and mentally disabled adult child. She left no note to explain her suicide. The third was the beating death of a young man who had engaged in other risky behaviors. No explanation was ever proposed for the murder.

These deaths share the characteristic that awareness about them is very limited. I suspect many families and friends who experience similar violent deaths share two characteristics: they are not discussed and an explanation about what happened is largely unknown. 

Conclusions.

This presentation has been both useful and dissatisfying for me. 

I understand why we have a suicide prevention month, and I participate regardless of my hesitations, but I’m dissatisfied that we do not include more perspectives of family and friends along with the perspectives of the treatment providers and policy makers. 

Different forms of awareness are needed and should be programmed. We need awareness about the problems but also about the relationships which are so central to change. We need to engage the general public in discussing risk, violence and relationships We need to do a better job of linking these end-behaviors like suicide, domestic violence and drug overdoeses, rather than just addressing one risky and harmful behavior separately from the others. At the core of this discussion is how to manage risk and harm through the development of relationships. And, we need to discuss when treatment should be mandated. 

Finally, as shown by our two stories, awareness is fragile and indeterminate. It is a process not an end-result. We seek awareness as a process of creating meaning which will be revised as we reflect, talk, learn and grow.