A Letter IV: On Thinking About Mental Health…

Dear President Obama,

Mental health has been getting a lot of coverage recently; some of the writing has been good, but a lot of it has been really quite bad. I don’t want to get too deep into the weeds of data and statistics today; instead I want to tell you a couple of stories, stories that I hope elucidate some of the true complexities inherent to discussing mental health, and more specifically conversations linking it to violence or potential violence.

These stories are not hypothetical; they are my life, and they start very early…

I was bumped out of kindergarten because I was disruptive. All through elementary school the question of, “What to do with Thomas?” loomed. I would be offered privileges, and when that didn’t work I received punishments. My mother struggled to find ways to make school work for me. I was shy and did not relate to my peers well. When I think back to that period I cannot remember a single friend.

Things only got worse in middle school: in the sixth grade I took to just running out of the school, unable to control my emotions and frustration. I threw a chair at my teacher, and emotional outbursts were just normal for me. Seventh and eighth grade were better, but I felt utterly alone.

I high school I finally found a real group of friends; we were the punks, the kids who definitely did not fit in in my suburban Detroit school. I dressed differently, I still did not socialize well, and to be blunt I was right disdainful of most of my peers. I spent most of my time with my friends drinking coffee in diners or getting into shows at punk bars in Detroit. Members of the school administration openly speculated that I might be dealing heroin or other substances (totally not).

Does the story sound familiar? It probably should, because it is now the default story that comes up around people who commit violent acts. It is also the story of tens of thousands of non-violent kids. So how do we differentiate between potential shooters and me? Pop-diagnosis is dangerous; it truly is, and a big part of why is because we—as humans—are engineered to find patterns, especially after the fact.

This is not to say that we don’t need to do a better job, as a society, of identifying individuals who are likely to become violent, but the links between mental illness and violence are tenuous. The link seems to make common sense because it seems obvious, after the fact, that anyone who would commit an atrocity must be mentally ill, but that does an enormous disservice to the genuine understanding of mental illness as a varied and complex array of disorders.

Let’s look again at my childhood. I was never diagnosed with any specific psychological problem. Know why? I didn’t have one. I was bumped out of kindergarten because I could already read all of the books in the classroom; I was disruptive because I was bored. I was problematic all through elementary school because I would finish the whole week’s work in the first hour of Monday, but having been bumped out of kindergarten I was a year less emotionally developed and prepared for my surroundings.

By middle school I was writing short novellas (admittedly awful ones) when my peers were being goaded to write a one-page story. I was ready for algebra while the class struggled with division. I was small, awkward, and desperate for high school. And in high school I rarely opened a book; I could swing a B average and ace the AP exams in many subjects without even unwrapping the textbook. I was desperate for college.

I did not have psychological problems, nor was I potentially violent—at least no more so than anyone else. From one perspective I seemed a perfect candidate for danger; from another I was a sweet, lonely, clever kid who just needed to find his proper environment. (The moment I hit college everything got better, instantly). This is the danger of pop-diagnosis: mental health issues are complex and nuanced; the details truly matter, and supposed symptoms can be profoundly deceiving. I do not mean that parents and teachers should not be aware of possible signs; just that diagnosis requires actual training.

Furthermore, post facto diagnosis can seriously muddy the waters when trying to find real solutions. The spurious logic of, “Anyone who would do this must be insane, therefore the person who did was mentally ill” both ignores the reality of violence and may well lead to solutions that do not address fundamental issues. I am not saying that mental illness never plays a role in violence—that would be absurd; I simply want to be sure we carefully consider how we think and talk about issues of mental health. There is a stigma associated with psychological disorders that often hinders diagnosis and treatment, and can stick to a person forever, leading to all kinds of negative consequences. Let me tell another story to help elucidate this point.

In my senior year of college I began to show signs of depression; I sought counseling and was placed on medication, but neither helped. Towards the end of the year I began having serious panic attacks, episodes that would leave me in a near catatonic state. My body seemed beyond my control, which only made me more depressed. I graduated, but only because I had banked enough extra credit hours (I failed two courses that semester simply because I did not show up and did not do the work). That summer I attempted suicide and by the fall I was admitted to a psych hospital.

At first I was in the county hospital where I was treated with horse-doses of sedatives; I’m still not sure why, but I certainly stopped panicking. Hell, I stopped doing just about anything. Though I was there for eight days, I to this day still think of it as two days. From there I was transferred to a private psych hospital—thank God I was still on my parents’ insurance—where I was detoxed and then put on a massive regimen of anti-depressants, lithium, sedatives, and anti-anxiety meds. It didn’t help that much, but at least I became semi-functional. After a few weeks I was released from the hospital, not because I was better, but because my insurance ran out. My diagnosis: unspecified catatonic depression. My prognosis: not good.

Well, over the next two years my symptoms did in fact abate. I went to grad school, got engaged, went to grad school again, got married, got a tenure track job, resigned that job in order to live with my wife, bought a house, and my wife got pregnant. I had symptoms occasionally, but we largely had things under control. A few odd physical symptoms popped up, but we thought we were in the clear. And then the shit hit the fan…

In March of 2008 K was several months pregnant and I had just begun a new tenure-track job in the same town as K’s—a freaking miracle. But then I started having odd symptoms; I started experiencing serious weakness after eating. No need to get into all the details, but things just got worse and worse. In August Bee was born and by October we were going back and forth to Johns Hopkins and I was on a medical leave of absence. Tests revealed nothing, so doctor after doctor insisted it was psych. Even after we started to have an idea what was going on no doctor would follow up because what we thought it might be was really rare, so based on my psych history a psych diagnosis was far more likely.

By the end of the year K was privately getting advice that we might want to get my affairs in order. Yet another doctor sent me to a psychologist who administered wide ranging psychological testing and determined that the tests were inconclusive, but based on my psych history and the fact that the medical doctors couldn’t figure it out concluded that it must be psychological. And then I saw one more doctor, and then I had a proper diagnosis.

I have Hypokalemic Periodic Paralysis, a rare form of Muscular Dystrophy. It explains all of my symptoms and treatment began to work immediately—though it took a while to fine tune, a process that is still ongoing. In fact it fit all the symptoms of my original psych manifestations: the panic attacks were not panic; they were paralytic episodes. It wasn’t catatonia; it was muscular paralysis at a cellular level.

I do not blame the original doctor way back in my college years for missing it, but that erroneous diagnosis radically affected how I saw myself for nearly two decades and seriously altered the way the medical community handled me. I do not tell you this story as a caution against the medical community; it simply illustrates the difficulty of understanding mental illness. Furthermore it points to the stigma that can be associated with it. Doctors did not believe my descriptions of my symptoms because my history, in their minds, proved otherwise.

Certainly some people with mental health issues should not be allowed to possess a gun, but not all mental illnesses are the same, and furthermore people’s mental health statuses change. In the same vein, some people who do not have a mental illness should not be allowed to possess a gun. Violence and mental health are two enormously important issues, but they are just that: two issues. There are ways in which they intersect, but they are in no way co-equivalent. Similarly, guns and violence are not identical, but they do overlap in certain ways. We need to find ways to minimize the intersections of these issues that have a serious potential to lead to harm, but we also need to deal with each element individually, on their own proper terms. In conflating them we risk misunderstanding them all; in regarding all this as a single issue we risk producing a problem so complex that no action is logical or plausible, rather than encouraging realistic and rational action on a series of identifiable problems.

Mine is indeed a cautionary tale. Not one that excuses or justifies evil actions, nor one that seeks to mitigate the need for serious action regarding mental health care in this country. I have seen first hand how bad mental health care can be, and I have lived with the stigma associated with it in very real terms. Mine is a cautionary tale warning of the dangers of pop-diagnosis, of post facto definitions, of approaches that lead us away from root issues into the weeds of assumption. It is a warning against blanket statements and gross generalization, a call for details and data, analysis and understanding. Common sense often leads us astray—common sense in my case pointed away from HKPP and toward psychiatric causes.

What we need is better mental health care, which begins with better and increased access to health care. What we need is a serious discussion of violence in our culture, not just gun violence, but all forms: bullying, domestic violence, rape, et al. We need better solutions than arming ourselves or staying inside. What we need is a profound examination of the responsibilities that should come with the right to possess a gun, a means to ensuring the public safety. Those measures may indeed need to be onerous, but we have not shown as a society that we are ready for this unregulated right. What we need is genuine discussion of all of these issues, which may lead to a lot of small, rational, and valuable solutions. The likelihood of a single cure to all these ills is unlikely, and is a goal that very well may destroy any chance we have at making things better.

While I am dubious of common sense solutions, I hope we can hold one small bit of common sense close through this process: an ounce of prevention is worth a pound of cure, and I am profoundly tired of praying for cures for the shattered hearts and lives of families.

Signed,
Thomas Knauer

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4 Responses to A Letter IV: On Thinking About Mental Health…

  1. 1
    Joanne Jones says:

    Wowzers – great letter.

  2. 2
    Tori says:

    Excellent letter. Many good points.

    I completely agree that we, as a society, need to have an open discussion about both mental health and violence, of all kinds. There is too much of, “I’m on this side, and you’re on that side,” in regards to guns especially. We need to come together and not divide ourselves.

  3. 3
    tobit says:

    as someone who works in mental health in the UK, and as a human being, I just want to say how much I agree with you on how important open conversation and then action on mental health is. And, this starts with the kind of open honesty you demonstrate in this letter.

    thanks, peace
    ~t

  4. 4
    Alyce says:

    Stories like that of your childhood is what gave me the passion to pursue my Masters of Gifted Education. There is a huge link between giftedness and issues like behavioral problems and mental health. And the lack of attention and awareness that surrounds this frustrates the hell out of me!

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