1. An Introduction

note: This is a particularly long post this month. I’ve split it into sections which will hopefully make it a bit more manageable to read over a period of time

I’ve had a note on my desk for the past few months. It’s a question I’ve been obsessed with off and on ever since I was diagnosed with schizoaffective disorder 10 years ago: What is mental illness?

When I first learned what schizophrenia was in high school, I remember it sounded terribly interesting. I immediately attached to it the romance of the suffering, genius artist; the idea that a person could hear voices no one else could, see things that weren’t there, and experience a reality altogether different than everyone else’s was wholly fascinating to me. I wanted to experience such a thing for myself.

Of course, be careful what you wish for. Because when I was diagnosed with schizoaffective disorder during my second semester of college – the romance was replaced with either horror (in my most panicked moments) or else a kind of detachment and non-participation in reality that came to define much of my early 20s. Life became an everyday struggle, a continual series of losses, of me trying to figure out just what the heck mental illness is and how to live with it.

This past August marked ten years since I was diagnosed. And it’s been quite a trip. In some ways it feels like I’ve come such a long way from that 20 year-old kid struggling with his friends leaving him and dissociation so severe he often found himself just appearing in class – more an automaton than a human. Things are different now, I’m much improved – I’ve mastered many aspects of having a mental illness. But in other ways, I feel like I’m back in the same place – back to the same curiosity I had when I was 20, wondering what it is I experience and how to define it, how to describe it.

I believe that one of the primary ways we understand reality is through language. The words we choose, the means by which we express ourselves. Our thoughts pervade themselves as language, we share our thoughts through language – in understanding and sharing, the most efficient, the most universal way to express that understanding is through language. But language has its limits – dictionary definitions, text book descriptions of terms like “crazy”, “mentally ill”, and “schizoaffective disorder” ultimately fail. Because our understanding of reality is also fundamentally personal. So, before I begin, I must mention that these definitions and descriptions are how I experience mental illness, how I understand it. Every brain is different, every person is different, therefore every mental illness is different. It’s important for every person to come to their own understanding of reality, and especially important for a person suffering from mental illness to understand their particular mental illness in their own terms.

But that doesn’t mean there isn’t any value in sharing how we understand our experiences.

2. Mental Illness as a Way-of-Being

or: Reframing Mental Illness

What is mental illness? It’s a way-of-being which necessitates understanding reality, the very structure of your life, in a fundamentally different way.

I listened to a punk-ska band called Link 80 a lot around the time I got diagnosed, especially the song “Turn It Around,” and that song has become one of my many mottos. The chorus of the song goes ”It’s up to us to turn it around.” That song, helped remind me that my life depends on me understanding things in a different way, that the standard explanations for reality don’t work for me because I don’t participate in just one reality. I have to shift my perspective, I have to reframe things, I have to understand things differently. I have to Turn it Around.

It’s a sort of accidental Buddhist perspective – I recently discovered that a tenet of Buddhism is that suffering comes from perceiving reality incorrectly. An especially insightful way of looking at things when your perception of reality is so drastically different than other people’s. so drastically that it leads to suffering, to pain, to confusion and directionless.

I can’t change the fact that I see things that aren’t there, that I hear voices no one else hears. But I can change my attitude towards them, I can change how I think of them. I suffer because they’re disturbing, because they’re menacing, because it’s just sort of universally accepted that hallucinating frightening creatures is a terrifying, destabilizing things to experience. But that doesn’t make them objectively terrifying or disturbing. They’re disturbing because I find them disturbing. I can’t change the fact that they exist – no amount of medication has ever gotten rid of them completely. So I might as well change how I think about them. Value them instead of abhor them. Be curious about them instead of frightened. And in thinking of them in a more positive way, instead of thinking of them as a threat, as malignant, as other, I find that I’m able to handle my particular perception of reality a lot more easily. I’ve even come to treasure my experiences, to see them as unique and beautiful and valuable.

Reality, is not an objective, singular thing. Reality is fungible, reality is altogether personal. It extends deeper than just your five senses, it extends into how you interpret what your senses tell you.

For example, I used to go to the Denver Art Museum (DAM) a lot. Having a membership meant that I could get someone else for free in addition to myself, so I often would go with someone. It wasn’t infrequent for me to have one opinion about a work of art and my companion to have a totally different one. Whether from the perspective of if we liked the piece or not, what we thought it meant, if it “deserved” to be in an art museum – our senses were feeding both us the same information; but our conscious minds, interpreting that information, produced a different reality for us. And both were equally valid perceptions of reality.

My reality is the only reality I’m ever going to actually experience, but it doesn’t hurt me (indeed, it’s only going to help me) to try to see things from another person’s perspective. Because in being exposed to my friends’ various opinions about different works of arts at the DAM, I have a richer understanding of the art inside.

It’s only through suffering because of schizoaffective disorder that I’ve been able to reframe things this radically. In coming to reframe and reorient my perception of myself and my perception of others, I realize what a blessing my mental illness has been. And if anything – to live through so many years of my life being tortured by my brain, only to come out thinking of the benefits, thinking of how thankful I am to have gone through them – that’s a powerful, worthwhile thing in and of itself.

3. Mental Illness as an Opportunity

What is mental illness? A phenomenon which presents people with the opportunity to reevaluate certain terms and truths our society has comfortably defined and accepted.

I used to embrace a more traditional definition of “success” – that it meant having a job, an education, a family. That it meant a specific kind of independence – financial independence from my parents, the independence to go wherever I want, whenever I want. But being diagnosed with schizoaffective disorder changed all that.

Getting ECT in 2009 and 2010 saw my life fall apart. I lost almost everything: my home, my job, my fiancée left me, I had to give up my dear cat, Baxter, when I moved back in with my parents because my Mom is terribly allergic to cats. I also lost most of my memories. Though things have improved somewhat, after finishing ECT I couldn’t remember most of my childhood, hardly anything from being in high school, and my time in college was largely blank. More tragic for me, were the abilities I lost: I had to reteach myself how to draw and paint, I had to reteach myself how to read (and would spend almost an entire year being read to by my Dad every night before bed like I was a little kid), I had to relearn how to fix computers, I had to relearn how to cook. Some things came back easily, other things I still struggle with.

There are so many things I can’t do: I can’t get a degree or go to school, I can’t drive a car, I can’t have a job; I’ll probably never own a house. I can’t watch TV, I can’t watch movies, I can’t go to the grocery store, I can’t drink even a moderate amount of alcohol without feeling like I’m going to day. There are so many “I cant’s” in my life that the traditional definition of “success” seems like it would just be mocking me constantly. But I still consider myself extraordinarily successful.

The solution wasn’t to stubbornly try to fit into society at large, the solution wasn’t to keep going to school and failing or to keep trying to hold down a job only to lose it. The solution was to redefine my notion of “success”.

I determine my success on whether or not my life is meaningful. And I get to choose my meaning. I’ve come to terms with mental illness by choice, by reframing my reality and redefining what I value in my life, by thinking about things from a different point of view. Schizoaffective disorder means I have a natural inclination to see things that aren’t there – so I might as well make that useful for me. And in redefining my notion of success, in reframing reality and redefining what I value, I began to see all of the opportunities in my life.

Because of all the things I can’t do, I get to spend my time on work I find meaningful. I’m most easily described as an author, but in being an author and I’m also a thinker, a ponderer, a reader, a philosopher; an asker of absurd, challenging, perhaps dangerous questions. And doing those kinds of things necessitates a kind of lack of structure. Part of how I see myself is as a sort of (degree-less) absent-minded professor. Thoughts don’t come when you command them to, they come when they dang well please – they must be conjured, they must go through a process of digestion. Creativity is something that must be nurtured in much the way a garden must be nurtured – feed it, let it grow, the fruits of your efforts will come when its time.

Deadlines, mandatory meetings, having to clock in at a regular time – all of the things that schizoaffective disorder has told me I can’t do are really well suited for the kind of work I do. It’s not that I wouldn’t do them if I could – it’s just so much nicer to think of the benefits of disability rather than the shame and self-pity and self-loathing that often comes with it. In reframing, reorienting, and redefining what I can do, what’s meaningful for me, what “success” means for me, I see opportunities where before there was nothing but lost possibilities.

My life has meaning. I do meaningful work, work that I believe in, work that has value. And for anyone with a mental illness, living in contemporary culture, that’s a valuable thing.

4. Mental Illness as a Relationship

or: Living at Peace with Insanity

What is mental illness? A relationship. A commitment you can’t back out of. Mental illness is an obligation.

When I first moved out of my parents’ house after ECT, I thought I was moving into a supportive environment. I’d been playing chess almost every Friday night with my new roommate for over a year. He’d shown himself to be a supportive friend, someone who’d randomly but regularly call me during the week so we could have interesting conversations (which was touching, I was isolated in Aurora; no way to get to my friends’ in Denver and my friends didn’t seem interested in coming out to see me). Someone whom I thought would support me. I didn’t expect him to take care of me. But I also didn’t expect him to behave like he did.

I call him the semi-abusive roommate in my novel. My psychiatrist said he’s probably a sociopath: someone who sees people as a means instead of as an ends. He used my mental illness to his advantage, to make me miserable; he leveraged my paranoia to get me to do things, to take advantage of me, to get things out of me. It was a sordid kind of relationship; like the whole year’s worth of playing chess and random, regular phone calls had just been him trying to gain my trust so I would be his roommate, so he could not so much abuse me, not so much torture me, but more just be an unnecessary source of anxiety and tension.

I lived there for two and half years; and I really shouldn’t have. But whenever my lease was due for renewal, he would be the kindest, most thoughtful person ever. He would actually do the dishes and the cleaning instead of leaving the task of cleaning entirely up to me. He would engage me in polite conversation instead of just saying that I smelled bad even though he knew that I have problems with bathing (and then denying that the comment was insulting under the guise of it being an indisputable fact).

I was relieved when he kicked me out because he could make more money by renting to someone else. It was stressful looking for a new apartment so suddenly, but I really needed to leave that situation.

I’ve had a similar sort of relationship with my brain. But my brain is oftentimes legitimately abusive. It has tortured me with psychosis so vivid, so physically painful that I’ve been unable to sit down comfortably for weeks afterwards. It’s produced terrifying creatures which haunt me wherever I go. But it’s also rewarded me with sunsets so beautiful, so vivid, that I feel privileged to have seen them.

But unlike my roommate, I can’t leave my brain, I can’t move somewhere else. The brain I was born with is the brain I’m going to have when I die, and there’s nothing I can do to change that. I’m obliged to my brain, I’m bound to it. I’m stuck with it, and it’s stuck with me. And it’s been a tenuous relationship for a long time. In living with my brain (and especially in reframing my values and how I think about my mental illness), I’ve learned that my path is not the path of fighting, the path of resisting. My path is perhaps the path of embracing; of curiosity. The path of offering the olive branch, of cautiously trying to understand and relate.

Because I have no choice but to live with my brain. And it seems more rational to try to make peace, to come to some kind of accord with my brain, rather than living in conflict. I don’t know what that path will ultimately look like; I could be completely off medication at some point, I could still be taking a few medications, I could be taking more medications. Any relationship is ultimately a negotiation – balancing your needs versus the other’s needs. My path is not the only path, my path is not necessarily the “correct” path. Every brain is different, every person is different, every mental illness is different – therefore every person’s, every brain’s, every mental illness’s needs are different.

No two relationships look the same. Each relationship needs different boundaries, different perspectives, different ways of achieving empathy. But in looking at my mental illness as a relationship, and in realizing that my relationship with my mental illness is not one that’s ever going to end, I came to a sort of different conclusion. The Oxford English Dictionary defines “oblige” as Bind (a person by oath, promise, or contract …. The definition goes on, but the important word to me is “bind”. I am bound to my brain, we’re not going to be separated while I’m still alive. And if that’s the way it’s got to be, well then I picture it sort of like how when my sister and I were little and faced our annual 14-hour car ride to Minnesota to see family, we set aside our petty differences: I stopped being her annoying little brother and she stopped trying to exert her natural authority over me as my older sister. We just got along. We cordially agreed who would pick the first movie (this being a hacked together system involving a power inverter, a small CRT television and a VCR my Dad came up with) and then we took turns. I watched my movie, then Rachel picked her movie. My sister and I were bound together in that van for 14-hours, and so we came to a temporary peace.

I am bound together with my brain for as long as I’m alive. And so I’m trying to come to a more permanent sort of peace with it.

5. Mental Illness as an Excess of Energy

or: More on Reframing

What is mental illness? An excess of energy. Or else a kind of energy that’s not very well understood.

About two years ago, I got a new therapist. I’d been seeing my old therapist for almost 10 years, had started seeing her shortly before I turned 19, and our last appointment was a few months shy of my 29th birthday. Switching therapists isn’t like switching other sorts of doctors/health workers. I can change my dentist, my eye doctor, my primary care physician pretty easily and still get largely the same quality of care. But a new therapist is wholly different. I had to build trust with her, she had to come to understand me and my many eccentricities and peculiarities. She had to understand my illness as I saw it, and I had to learn how to communicate effectively with her.

So it was a big deal when, last year, I expressed concern to my new therapist about my utter lack of interest in dating or having a relationship. I suppose one might call me asexual; more generically, as suffering from a libido problem. It’s seen as a sort of pathological problem to most psychologists – as something that’s wrong with you. My therapist didn’t necessarily think so.

Because to my therapist, libido isn’t just the sex drive, it’s the fundamental drive for life. Libido is energy and I certainly have plenty of energy for life. I just put that energy elsewhere: into my creativity, into writing and exploring different thoughts and reading about things I probably have no business trying to understand. It’s not a bad thing that my energy happens to direct itself toward creating things written on paper rather than making other human beings – both are worthy projects, both are valuable additions to society and culture.

I rather like this idea – it means I’m not longer weird in not being particularly interested in dating or getting married or having kids. It just means that I have different priorities. And so thoughts developed and capitulated and I soon found myself telling my therapist about how I think of myself in terms of having a direct connection to my subconscious. Whereas other people have to take some kind of hallucinogen (or else have an extremely intense religious/spiritual experience) in order to access that subconscious, I have a sort of hotline, a direct connection to it. What is a rare phenomenon to the vast majority of the population is a regular occurrence for me. When I get sick, it’s that direct connection (which I visualize as a sort of tunnel which occasionally turns into a geyser) overflowing with energy, overwhelming my consciousness and leaving me psychotic. Too much energy, too much input – I simply don’t always have the bandwidth to handle this torrid which comes from deep inside my head. I posited that I just need to learn how to harness that energy, to flow with it rather than be drowned in it. Despite having lived in Colorado pretty my entire life, having never set foot (let alone swam) in the ocean – it appealed to the surfer in me.

So when I got diagnosed with OCD a few months ago, I took it as an opportunity to apply some of this thinking.

The standard medicinal treatments for OCD aren’t available to me. So I’d been directed to get an OCD Workbook. OCD Workbooks operate under the theory of aversion therapy – a kind of muscle your way out of not doing things by forcing yourself through the discomfort and torture of not doing them until you arrive at the point of not doing them by sheer habit. A sort of brute force, muscle-your-way-out, battle of the wills sort of thing that probably would have appealed to me a few years ago. It works for other people, but it just seemed like a bad idea for me.

I have all the patience and grace and empathy in the world for other people. I’m an understanding and compassionate person; I realize that other people’s lives are complicated and unpredictable and so I try to give them as much leeway as I can in their inherent imperfection that is just human nature. I believe that by just having empathy, most conflicts would be avoided or else de-escalated to the point they’re simply conversations. But I do not extend that courtesy to myself. With myself: I have no mercy, I have no empathy; no grace, no understanding, no compassion. I either do things perfectly or I’m a total failure. I am either the perfect friend, saying the precisely needed thing every single time or I am a total schmuck who doesn’t even deserve to be your friend. When it’s at its worst, even random people I’ve rolled cigarettes for on the stoop have noticed this about me – my almost pathological need to be perfect. It’s a source of many problems.

So it just didn’t seem like a good idea to combat my OCD by tapping into (if not full-on embracing) this pathological need to be perfect. I could see it potentially making things worse.

So I thought about the energy concept, the libido thing. I have excess energy. I’m not equipped with batteries, so I can’t store that excess energy for later use. My brain is like some dogs who’re destructive when they’re left at home. Those dogs don’t chew up the couch or eat out of the garbage because they’re inherently bad, they do it because they have so much energy inside of them that they have to do something, the excess energy gets to be such a desperate situation that “something” turns into “anything” and oftentimes that “anything” is destructive.

Only I don’t personally chew up the couch – I just pace my living room compulsively rearranging furniture and plants and items throughout my apartment. I just obsessively align and re-align, align and re-align the windows on my computer screen so that they’re perfect. But they’re never perfect. So instead of writing, instead of doing research, I just sit there whiling the hours away, doing nothing, driving myself crazy.

My plan wasn’t really a plan of attack, it was more a plan of acceptance. One of the images I try to keep in mind is the Buddhist image of the reed in the river – the reed that breaks is the rigid reed, the reed that resists the flow of the river. While the reed that lives, the reed that grows and thrives, is the reed that bends with the ebbs and flow of the current. I have to bend, I have to accept, I have to flexible and adaptable. To be rigid is to break. So, I must accept, I must radically accept. And in accepting I must understand myself, I must understand my illness, I must redefine what it means to me in a way that helps me to understand it better. Mental illness is as much about maintaining a proper perspective, about being flexible, merciful and compassionate with yourself as it is about being tenacious and stubborn and disciplined, as it is about fighting it.

So instead of just muscling through not re-arranging my apartment or the desktop of my computer, I decided to do something else. I dedicated time to think about my compulsion to re-arrange, I started asking myself “why.”

Why do I want to rearrange my furniture? I re-arrange my furniture sometimes to make myself feel better, sometimes because I just want to feel as though my space is fresh and new. But most often, because I am dissatisfied with some perceived inadequacy – because I’ve somehow come to think that the perfect living space is attainable.

Why is my imperfect apartment an inadequacy? My imperfect apartment has become a reflection of my imperfection. If people come into my apartment and everything isn’t arranged in an aesthetically pleasing way, it’s a reflection of my flaws, of my inadequacies, of things that are wrong with me. I am totally willing to sacrifice practicality, to forego something truly useful because it doesn’t “look” right because it’s better for me to appear put together and orderly and sane than it is for me to be able to do my work effectively.

Part of my nature is inquisitiveness, is curiosity. There’s some sort of causal relationship between the energy of my illness and my innate curiosity. I’m either dumb enough, or smart enough, or crazy enough to want to know everything I can about whatever I’m interested in. And I’m interested (to some degree or another) in just about everything. So to turn that energy, that inquisitiveness, inwards has been revealing. I asked myself many more questions than just those two – but the perfection thing was key. It revealed a base assumption, an assumption not based in reality – I somehow assumed perfection was attainable, that all compromise was bad (even if it’s just compromise as far as living arrangements are concerned).

With most any other illness, in treating the symptoms, your treating the cause of the illness. But it’s not like that with mental illness. Mental illness may have physical manifestations, but it also oftentimes has components of existential crises. To treat mental illness you must treat the symptoms and the cause separately but in unison. Mental illness is like a weed, you can get rid of the stem and the flower, but if you don’t get rid of the root, it’ll just pop up again.

And like a weed, it depends on your perspective whether or not it’s a weed. What one culture considers a weed, another might find extraordinarily useful. A weed being a weed is not dependent on any innate property of the weed – it’s defined by the desirability of that plant in its environment. I had a garden at one point. Some squash seeds had gotten into the compost my friend brought over to help bolster the poor soil in my parents’ yard and over the weeks, the squash started to take over the garden. Squash is usually a useful plant. But I really dislike squash, I wasn’t going to eat them. So those squashes, given the fact that I hadn’t planted them in the first place and they were choking out my lovely tomatoes and my peppers, were weeds.

Mental illness depends largely on context, on perspective. I can make my life seem hopeless and despairing – I can focus on all the things I can’t do, all the things and people I’ve lost, all the things I’ll probably never have – and it’s true. Or I can make my life seem ideal, a life to be jealous of – all the freedom I have to do whatever I want, whenever I want. All the privileges afforded and the burdens removed from me because I have a mental illness – and it’s true. The Truth isn’t somewhere in the middle, it’s both of those truths at the same time.

6. Mental Illness as the Unknown

What is mental illness? It is the unknown. The undefinable. It is invisible, persistent. It defies explanation and understanding.

And that’s probably what’s so frightening about it – that as a person experiencing it, what they tell you it is doesn’t necessarily add up to how you experience. That, as a parent, as a loved one of someone with a mental illness, you see your child, your loved one, go through these inexplicable things – things they can’t necessarily describe or communicate to you.

For all my months of trying, I haven’t come up with a good, all-encompassing, definition of mental illness. Not one that is precise or concise enough to put into a dictionary. And I suspect for all my future months, possibly years, of trying I’ll never accurately define it in a clear, succinct, precise way. At least not in any universal sense. I can only ever define mental illness as I experience it. And everyone experiences it differently.

It’s a natural human inclination to fear the unknown. What we don’t know might destroy us, what we can’t understand must be hostile. It seems to me to postulate a fundamental pessimism in the human psyche: that which we don’t know might destroy us, therefore the unknown is evil.

But the unknown of mental illness is so much more than that. It is beyond apprehension, it is beyond logic, beyond formality. I remember sitting in a class, learning about mental illness and being shown brain scans of two people, one with schizophrenia and the other the brain of a normal person. The comparison didn’t make sense to me. A difference could be seen, it’s true. But that difference was meaningless without context, without knowledge of the implications, the connotations, the denotations of what the information we were being presented with meant.

There’s no single outcome, no single prognosis for mental illness. Ultimately, living life with a mental illness is as much an unknown as anyone else’s life. There is a difference between my brain and the brain of a so-called “normal” person, but that difference isn’t necessarily bad. There are people with schizophrenia who cannot function in even the most basic of ways, there are people with schizophrenia who are on disability and live on their own with the support of their family, and there are people with schizophrenia who have jobs, who get doctorates, who become CEOs. So much of it is out of our control, so much of it is just luck, or fate, or God’s will. And I think oftentimes, there’s a great deal of anxiety – both from those with mental illness and their families and loved ones – because of that unknown. Because we like control, we like to be in charge. We like to think that what happens in our lives happens because we’ve done things to make them happen. And that’s true with many things, most things. But oftentimes, you just can’t control what happens no matter how hard you try.

But, with mental illness being an unknown, it also becomes an opportunity. For a person to make whatever they want of it – to see the advantages of it, to see the disadvantages of it. To make the most of their situation.

The unknown of mental illness is certainly terrifying; both from the standpoint of just experiencing it as well as from the uncertainty it brings into life. But just because I’m afraid of something doesn’t make it my enemy. And just because something is dangerous doesn’t make it hostile.

7. Final Thoughts

I look things up in dictionaries an awful lot. I have an almost embarrassing number of dictionaries (almost, because I’m not actually embarrassed – there’s no such thing as “too many dictionaries”). Words hardly ever have just one definition. They have several. Interestingly enough, the words with the longest, most complicated definitions are oftentimes the simplest – words like “because” or “of”. Words that one wouldn’t necessarily think to look up in the dictionary because we take them for granted.

I imagine they leave words like “because” or “of” to their more experienced, more talented lexicographers. Defining simple words, defining words that are common, whose definition is just sort of assumed and never formally taught, can be stupefyingly difficult.

And so too, it’s hard with defining mental illness. Everyone seems to talk about it like we all know what it is. But I don’t quite believe that. I’ve proffered five different definitions of mental illness – but I have more (the above are just the most fleshed out); and besides that, these definitions are not necessarily universal. Mental illness is different for everyone. Mental illness is a relationship, and every relationship looks different.

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