Category: <span>empathy</span>

Next month, April 2018, will mark the 4-year anniversary of this blog. I started this blog with an introduction which explained the meaning of the title, Mostly Just Like You. I’ve had four years between initially coming up with that title to think about its appropriateness, four years in which I could have changed it. But I haven’t. And not just because it would be a hassle to come up with a new title, print new business cards, redirect people to the URL, etc., etc. But because it’s actually a pretty decent title. So I thought, on the cusp of the four year anniversary, I ought to re-examine the title and how folks with mental illness and folks without mental illness aren’t really all that terribly (and unrelatably) different from each other.

I’m relatable, trust me

How can a so-called “normal” person relate to someone like me? After all, I hallucinate, hear voices, experience delusions and paranoia which, when witnessed firsthand, make it look like I’m transported to a wholly separate plane of reality. I’m crazy. How can sane people relate to insane people?

Beyond the esoteric nature of terms like “delusions,” “paranoia,” and “hallucinations,” there seems to also be an assumption that the realm of experiencing the psychotic is reserved exclusively for the insane. That the things I experience because of schizoaffective disorder are wholly foreign, alienated from the experiences of your average, “normal” person.

But they’re not.

Almost everything I experience is something that everyone else experiences too. I just experience them in different contexts and with a much greater intensity. Everyone hallucinates, everyone gets paranoid or delusional — they are not the wholly unrelatable, alien experiences people tend to think of them as, they’re just different. And that’s why I’ve named this blog “Mostly Just Like You.” Because people with mental illness are not scary, are not anymore dangerous than your average person; because people with mental illness do not experience anything so totally beyond what normal people experience so as to make us completely unrelatable to.

In the interest of time, I’m just going to be focusing on what I perceive to be the scariest symptoms I experience: hallucinations (and I lump together the auditory and visual varieties), delusions, and paranoia. These are the ones that, when I’m experiencing them or when I express them, are the most obvious and alarming signs that I have a mental illness. They’re the ones that are the scariest for people to witness. I’ve been told that when I’m psychotic, I seem an entirely different person. I go from being pleasant and amiable to confused, scared, tortured.

A Note on Empathy

My Dad and I were talking the other night, as we oftentimes do, and the topic came around to the eternal question of how we can improve the lives of the mentally ill? The default answer seems to be legislation: if we only passed enough laws, society would treat group-x so much better.

It’s all well and good to have laws that prevent discrimination of groups of people for obtaining housing or employment, the results of such laws isn’t the categorical elimination of said discrimination – there are always loopholes. “Success” is not passing a law. It may look good in the news, it may make headlines — but after passing the law, one has to enforce the law and our legal system so often enforces the technicalities of the law rather than the spirit of the law.

What’s far more important, in my estimation, is changing things from the bottom up. My own personal belief is that having empathy can solve a lot of problems without the need to create a law. If society doesn’t see someone like me (e.g., someone with a mental illness) as a threat, as an undesirable, then there doesn’t even need to be a law.

We tend to de-humanize those we see as threats, those whom we don’t understand or think we can’t relate to. If you’re the more radical type, a police officer, an FBI agent, is the ultimate other. A cop isn’t someone who’s just doing their job — someone with a family they love or with a favorite band they deified in high school — they’re simply not a person. They’re the enemy. And so there’s a sort of blind hatred. And if you’re the more conservative type, a radical, an anarchist, is an existential threat to society. They’re just as equally not a person — they want anarchy — violence in the streets and a bloody revolution which results in a kind of Mad Max-esque existence for all of American. And their hatred stops them from stopping to think that maybe their definition of anarchy is different from an anarchist’s definition of anarchy.

Things get difficult when the other is no longer an other but a friend. It’s a classic storyline, seen in movies such as The Fox and the Hound (which emotionally ruined my friend Mark and me when we were kids). To be able to identify with the other, one needs to realize that they might not be as other as previously assumed.

When we can relate to another person’s experience, we can empathize with them, and when we can empathize with them they’re no longer scary. In another conversation I had with my Dad a number of years ago, he told me that he didn’t have a clue what it was like for me when I become psychotic. My Dad has always wanted to understand what it is I go through. And, being given the opportunity and space to talk about my experiences with him has allowed me to elucidate my thoughts and formulate much of how I see my life with a mental illness. By simply giving me the space and time to explain to my Dad what it is I go through, we both discovered that it’s not nearly as foreign as it’s usually assumed to be.

Psychosis was the big one in the beginning for my Dad to understand. Which makes sense — it’s scary for people to see me go through it. I’m in the room with you but still not there — experiencing my own private hell, which is a kind of torture for my parents to see me go through. I have an absurdly high pain tolerance, and to see me so clearly in pain, sometimes just begging something to stop, knowing that I’ve just stoically withstood the pain of numerous injuries, surgeries, and other physical traumas (largely without the aid of painkillers) put into perspective for my parents that it not only hurts, but it approaches torture.

I will probably never be able to ease their distress and terror about the fact that the pain I experience during psychosis is prodigious. But I can at least remove some of the unknown qualities of it and the terror that results from not knowing.

Relating to Psychosis (Do you dream?)

One of my favorite definitions of psychosis is this: “a loss of contact with reality.” Which sounds an awful lot like dreaming to me.

A dream is pure fabrication, a figment of your imagination, your brain is conjuring up an entire reality out of thin air. What you experience when you dream is completely real to you but isn’t actually happening. When you dream, you interact with people who don’t actually exist. You might dream about your mom, but your mom isn’t actually inside your dream with you, participating in it alongside you — she’s probably off having her own dream.

It only seems totally real — it’s uncommon for a person to recognize the fact that they’re dreaming while they’re dreaming. Things may be strange, you may be having coffee with a talking duck, you may be flying through a landscape without the aid of any kind of machine — but people don’t consciously question the reality of a dream (or the viridity of consciousness, for that matter). It’s real to you. So why should you question it, even if it doesn’t make sense in the context of what it’s like to participate in the rest of reality?

When you dream, you are disconnected from reality — your body is in one place and your brain is off creating a fictional reality from thin air which only you are privy to. And in that sense, dreaming is like psychosis, “a loss of contact with reality.”

I certainly dream too. But I also experience a dream-like phenomena when I’m fully conscious. My brain creates a fictional reality which only I am privy to – I hear things that aren’t there, I see things that aren’t there (i.e., I hallucinate), I lose contact with reality – when I’m fully conscious. In other words, I get psychotic. It’s not the simple existence of my hallucinations which makes me (and people like me) different from other people — it’s the context in which they happen. While other people dream from the safety of their bedrooms, I have a tendency to get into a similar state when I am fully conscious. And though the majority of my psychotic episodes tend to be nightmarish in nature, they can also be quite charming and pleasant sometimes.

I suppose where they differ is that people who don’t experience a psychotic disorder are either experiencing one or the other. Whereas I tend to do both at the same time. My own experience with psychosis is more like augmented reality. Reality is not totally replaced, it is augmented (added to) with psychotic “features” (i.e., the hallucinations and generally disconnectedness/non-participation which is the hallmark of psychosis). It’s just another day in the life of Chris to walk into a coffee chop and see a hideous, disturbing creature sitting at a table. I still see everyone else in the coffee shop, they move around the creature and a creature’s spatial integrity is never compromised by having someone walk through them — real reality is still as it is, I just have a little bit of extra horror in there with me that no one else has.

A side note on the nature of reality

There’s oftentimes this sense that there’s some sort of objective reality which we all participate in and agree about and then there are the myriad surrealities which people with psychotic disorders participate in separately and disagree about. I’ve had some rather fascinating conversations about the nature of reality in which a person has told me that the irrefutable proof that a person with a psychotic disorder isn’t simply perceiving something “normal” people can’t see (another dimension, for example) is that people with psychotic disorders never seem to agree on what they’re perceiving. “Normal” people, the argument went, all agree that what’s there is there — but people with psychotic disorders all seem to see and hear things which are unique to their persons. And therefore, “objective reality” is whatever people without psychotic disorders agree is there and everything else is just nonsense conjured by our overactive and psychotic imaginations.

The logic is sound, I suppose. But sound logic doesn’t equal truth. The act of perceiving isn’t quite as simple as one might think. First, it’s dependent on the input from our sensory organs. Our eyes, for instance, are just lenses — very much like the lenses on a camera. It’s our brain that interprets what the lenses of the eyes tell to translate the data into something which we can understand. Our eyes differ in terms of function — you might not need glasses, whereas I am helpless without mine – but they all see fundamentally the same things, they all see the same information. But, it’s also true that perceiving color is different between individuals. A person might be colorblind, for example; or they might just be like my Dad and think that green is green and that’s all there is to something being green.

But, every brain is unique just as every person is unique, and it’s our unique brains which assembles reality for us. So reality is not just pure, factual objects and information which our brain assembles — we also have emotional interpretation of reality. And those emotions alter our sense of reality. There are certain songs which can move me almost to tears, whereas other people hear the same song and have no such reaction. We’re perceiving the same information, but our emotions skew that information in much different directions. This plays just as vital a role in what reality we live in as do the “facts” about reality. I tend to get psychotic when I’m stressed or else otherwise emotionally incapacitated, just as people tend to have nightmares when they’re emotionally disturbed by something in their life.

It’s not the content that differentiates psychosis and dreams – it’s the intensity and, above all, the context in which they happen.

Delusions and Paranoia, Attempting to Define and Elucidate

Delusions and paranoia are interrelated, insofar as I understand and experience them. They orbit one another and influence one another much like planetary objects influence each other with their gravitational dance. If there’s one there’s usually the other and it’s usually caused by or at least influenced by the other.

These are definitions, based off of how I personally experience them:

Delusions: arbitrary and factually incorrect convictions which occur sometimes in the absence of evidence (and oftentimes despite evidence to the contrary) and which usually contain “big picture” type themes.

Paranoia: arbitrary and factually incorrect convictions which result from interpreting evidence in a conveniently malevolent way. Oftentimes paranoia is more personal. Whereas a delusion usually involves unknown entities (or else larger groups), paranoia is oftentimes directed at something or someone personal.

These are necessarily simplistic definitions, but I will attempt to elucidate what they are as we continue. Understanding delusions and paranoia is a rather tricky endeavor — but one has to start somewhere and I feel as though it’s better to start with a simplistic understanding and build from there, all the while recognizing that there’s a certain degree of fungibility in defining mental health terms. Definitions are important — if one is going to arguing about the merits of a ham sandwich, they’d better define what a ham sandwich is (for instance, what mustard, if any, is used? Is there mayonnaise? What kind of cheese is on it? Does it even have any cheese?). And so it’s the same with mental health terms. We can all imagine a ham sandwich — but we all also have our own personal idea of what the details of that imaginary ham sandwich include. And so too, I understand schizoaffective disorder as I personally experience it; but that doesn’t negate anyone else’s understanding. Every brain is unique, every person is unique, therefore every mental illness is going to express itself in a unique way for each person.

Delusions: convictions from a complete lack of evidence

One way of beginning to understand delusions is that they’re convictions one comes to without evidence or rational thought and which persist despite evidence to the contrary. They also tend to involve bigger picture type themes than paranoia does.

For example:

I consistently live under the delusion that I’m being monitored at all times (the consequences being that nothing I say or think or do is ever private — “certain people” just have total access to me). I also lived for many years under the delusion that I was just making up my illness for attention (though thankfully that particular demon seems to have disappeared in the past year or so). In both cases – I have/had zero evidence on which to base those convictions. And, in both cases, there is/was no amount of evidence to the contrary which can/could convince me otherwise.

When I was delusionally convicted that I was just making my illness up for attention, it did not matter that I had seen multiple doctors and they never even considered the notion that I was just making it all up, it did not that I hadn’t even heard of schizoaffective disorder or that I had an embarrassingly simplistic understanding of what schizophrenia and bipolar disorder are when I was diagnosed, it did not matter that I was relating experiences to those doctors which confirmed aspects of my diagnosis which I didn’t even realize were aspects of my illness, and it did not matter that I am a text book example of someone with a case of rather severe schizoaffective disorder, leaning more toward the psychotic than the affective (i.e., mood) side.

I am clever, but not clever enough to fool so many highly educated people for so many years with a fake diagnosis I didn’t even know existed before being diagnosed with it. It’s also not in my character to even attempt such a deception. None of the evidence, no matter how much it might convince everyone else, was effective enough to truly convince me that I wasn’t just making it all up for attention.

It was a delusion, plain and simple. Because even though all of the evidence points toward me genuinely having schizoaffective disorder, I was convinced I was making it up. But there was a kind of interesting tension in it: I fully acknowledged the swathe of evidence that I was not just making it up, I even acknowledged that my delusional conviction was, in fact, a delusion. But that did basically nothing to convince me that I wasn’t just making it all up for attention. And even though I was convinced I was just making it up, I still sought treatment, I still (eventually) took my pills, I still tried to help myself. The word “schizophrenia” means “split mind” and this is part of why it seems to me an apt term. There are many aspects of my experience which I know intellectually to be fabrications of my brain, but which I also know, to my very core, to be true, to be reality. In such matters, I am split between two realities. And that schism can be ruinous.

As for my delusional belief that I’m being monitored at all times, that certain people are privy to everything I experience and think? It’s just a kind of fact about my life that I don’t concern myself with because of how core it is to my being. It doesn’t necessarily bother me that much. I’ve come to peaceful terms with this aspect of myself. Whereas I found that I had to act contrary to my conviction that I was making up my illness to get attention in order to get better, with this delusion, I’ve found that acceptance is a more peaceful route. With so many schisms in my sense of reality — it’s sometimes better to just acquiesce. It’s like in the Looney Tunes cartoons I enjoyed so much when I was a kid, “If you can’t beat-’em, join-’em.”

Because of my peculiar relationship with this delusion, there’s a kind of irony in that it doesn’t backfire in ways one might assume it would. When it works against me, it’s usually in the sense that I assume people know things that I haven’t told them about yet. I remember getting frustrated that I needed to talk to someone because I wasn’t feeling well and no one was calling me. I finally called my Mom and my indignation confused her. I thought my fury was righteous and justified and that she was being selfish or uncaring for not calling me when I wasn’t feeling well because I assumed she knew (without me telling her) that I needed to talk to someone. And she was rightly confused (and concerned), because how would anyone in their right mind know how a person 20 miles away is feeling without being told? And, of course, I wasn’t in my right mind.

So much of having a mental illness is a negotiation — both a negotiation with the various aspects of yourself as well as a negotiation with the people who love and care for you.

I consciously recognize how absurd this delusion is. But it’s just a sort of basic assumption about my life in which I’ve had to train myself that although folks might know I’m not doing well, they can’t do anything about it until I let them know I want their help. I don’t obsess over finding cameras and microphones hidden away in my apartment, but I’m also very particular about who films me or takes my picture and why. It’s another conflict, another schism.

And that essential conflict with delusions is what oftentimes leads to suffering — a delusional person can intellectually acknowledge their delusion(s) as absurd but still hold onto it with the core of their being. And that conflict can tear a person apart. It’s difficult to act contrary to our nature, to act contrary to our core beliefs. Chicken Little may have been wrong about the sky falling when an acorn fell on his head, but that sure didn’t stop him from warning everyone about it. Chicken Little was delusional (in the sense that it was a non-existent yet ominous, amorphous, “big picture” threat he needed to warn everyone about) — and though I don’t remember the story very well, he seemed to just keep warning the other animals despite the other animals’ rational explanations that the sky seemed just fine.

Like I stated in the section above, there’s reality as it is, and then there’s your personal perception of reality. And as much as we like to think there’s a sort of objective reality out there which we can perceive, everyone perceives reality in their own unique way and so objective reality remains inaccessible to even the most splendidly rational of us.

Paranoia (wherein the obvious conclusion is the irrational one)

For example:

So much of having a mental illness is a negotiation — both a negotiation with the various aspects of yourself as well as a negotiation with the people who love and care for you.

Garden variety delusions and paranoia of stupendous normalcy

Have you ever texted someone, knowing that they’ve got the free time to be able to message you back, and experienced that little pang of doubt or suspicion in knowing that they should have replied to you 15 minutes ago, but they just haven’t returned your message?

The convenience of being able to instantly reach pretty much anyone regardless of time of day or where they are is a double-edged sword. It’s beneficial when there’s an emergency or when the message arrives at a convenient time. But it can also be somewhat harrowing if those messages go unanswered. In the past, one had to go out of their way to be reachable — waiting for a phone call meant waiting by a phone that wasn’t necessarily mobile enough to be brought out of the kitchen. Now, one has to go out of their way so as to be unreachable. This basic assumption — that anyone can be gotten ahold of at any time — is highly pervasive and has led to some interesting sorts of anxieties and insecurities surrounding how we communicate.

So when a message inevitably goes unanswered, something very similar to paranoia can begin to take shape. Rationalizations can quickly devolve into suspicions which can lead to ill-informed conclusions about the nature of the non-replying recipients character. Because why wouldn’t someone want to talk to you? Do they not like you? Are they injured? Are they cheating on you or otherwise deceiving you? It’s amazing how quickly something as innocuous as an unanswered text message can be interpreted in all sorts of friendship/relationship damaging ways.

A thought experiment:

You (the royal “you”) text someone in the morning, asking them if they want to get together after work for coffee. They don’t reply immediately, but you’re not concerned. You’re busy, so they’re probably busy too. It’s Monday, lots of work to catch up on and so forth.

Then it gets to be noon and you know they’re taking their lunch break. Now you’ll hear back from them. You both have iPhones, so you check to see if they’ve read your message. They haven’t. It says it’s been delivered, but it doesn’t say they’ve read it. Does your friend have the read receipts feature turned on? Crap, you can’t remember.

Is their phone is dead? Did they leave it in their bag or forget it at home or at their desk when they went off to lunch?

The day creeps by and anxiety mounts as the hours pass and you still haven’t heard anything from them. Terrible thoughts seem to be creeping into your head, fed by your own insecurities which are influenced by the pervasive notion that communication is always instantaneous. So you send another message to stave off the creeping thoughts, keeping it casual so as to not appear insecure or desperate or mad. That should at least buzz their phone again and bring it to their attention. Your anxiety is relieved, but only for a few minutes — because that one goes unanswered as well. They haven’t even read it!

Clearly they see a message from you on their lock screen, but they’re careful not to open it in the Messages app. They’ve read it — but they don’t want you to know they’ve read it. And with that little tinge of paranoia a dam has broken and all sorts of negative thoughts start entering your mind unbidden. Suddenly, this person you began your day wanting to get coffee with is the last person you want to spend time with. Why did you even bother? They’re the worst friend in the world. Your brain seems to come up with an inexhaustible supply of examples of how terrible of a friend they are, even though those examples are either pure fabrications or else were dismissed as being wholly excusable and appropriate at the time your friend was being a bad friend because they had a perfectly legitimate reason for doing so.

By the end of the day, that lack of a response from your friend went from the perfectly reasonable (e.g. their phone was forgotten at home or else wasn’t charged) to something which very much looks like paranoia (i.e. they’re morally corrupt in their purposefully not letting you see that they’ve read your messages, that they’re a terrible friend). It maybe even devolves into a full on delusion — the evidence you’ve “collected” based their lack of response leads you to an irrational conclusion, a conviction about the reality of your friendship with them. Your brain has created a fictional reality from virtually nothing and you (remember, it’s just the royal “you”) are certain that this fictitious reality is true.

As such, it won’t even necessarily matter if they do have a perfectly valid reason for not replying all day. It might not matter that they had to take an emergency trip to Abu Dhabi (perhaps to rescue Nermal) — your conclusion, your conviction, fabricated from thin-air by the Dark Side serving creative forces of your brain is more convincing than your friend is and so the friendship is tainted and the seed of mistrust sprouts the desolation of your friendship.

It’s not just the mind of someone with a thought disorder which is endlessly creative at fabricating fictions and irrational reasons for totally mundane occurrences and coincidences. Everyone’s mind has that capacity, everyone’s mind has that tendency. My mind certainly has a tendency to interpret an unanswered message in interesting ways, but that’s how I’m more like you as opposed to how I’m different from you. The disparity between healthy and unhealthy, like with psychosis, is context and intensity.

The difference between the delusions and paranoia I tend to experience and the everyday sort of delusions and paranoia that non-mentally ill people experience is that, most of the time, such everyday delusions and paranoia are completely innocuous. Your friend texts you later and says, “Sorry Royal You, I was rescuing Nermal from Abu Dhabi again, can we do coffee tomorrow?” You wonder suspiciously about your friend’s lasagna loving cat and setup a coffee date. No harm no foul.

There’s no need to argue with crazy in this instance, because it isn’t crazy. You may have had your doubts, your insecurities, but the explanation was reasonable and it makes sense given what you know of your friend. Jon Arbuckle may be gullible and a bit naive, but he loves you as much as he loves his animals, so you know he’d go to the ends of the earth for you.

With genuine-type delusions or paranoia, one can’t necessarily argue with it. The Royal You may have experienced familiar aspects of paranoia but they fully accepted their friend’s reasonable explanation. When I was under the delusional belief that I was just making my illness up for attention — the mountain of evidence which proved I do, in fact, have schizoaffective disorder, was largely meaningless. There was seemingly no amount of argument or proof or logic that could defeat that delusional conviction. I might have intellectually acknowledged the absurdity of my delusion — but it was still a core part of my being. And thus, I lived with a sordid conflict for many years.

“Mostly” Just Like You”

I may not be exactly like you, but I am Mostly Just Like You. Relating to me (or to anyone with a mental illness) is not a hopeless venture, it’s not a lost cause – I dare say it’s a downright noble thing. We can certainly be peculiar, we’re maybe a bit odd — but we’re not experiencing anything that’s so beyond the grasp of “normal” human understanding that it simply exceeds the scope of possibility to even talk to us or befriend us. I have a number of friends by now and they all seem to enjoy (or at least tolerate) me quite a bit. The fact that I have a mental illness doesn’t even come up all that often. Schizoaffective disorder may influence virtually everything I do in a given day, but that’s doesn’t make it the only thing that’s interesting about me or the one thing that defines me. I just have this tendency to experience perfectly normal human things (dreaming, insecurity, doubt, etc.) at inconvenient times and in sometimes traumatic and terrifying ways.

And that’s largely the message I like to try to get across — that mental illness certainly is a formidable unknown but, once you get to know and understand the paradigms it operates under, it’s not the death sentence it’s oftentimes assumed to be, it’s not so terrifyingly incalculable as to be hopeless to relate to. Mental illness isn’t like other illnesses in that it’s oftentimes rather more complicated than treating a cold or the flu — there are no readily available, universal, remedies for mental illness. But mental illness is also very much like other illnesses in that it doesn’t make the person who has it any less human, any less deserving of love and empathy.

We fear the unknown. And that’s actually rather nice, because all we have to do to stop fearing the unknown is to get to know it.

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Mostly Just Like You.

Category: empathy

Why “Mostly” Just Like You?