Vision

To master chronic illness with understanding and control

A funding application on the workbench prompted me for a “vision.” Oh that’s easy, I thought; I’ll write one while the kettle boils.

I sort of did that; and the next day, when I saw the turd I had created, I suddenly realized that I don’t know what a vision is. Actually that’s not true. I know what a personal vision is; and I know what a shared vision is; but I don’t really know what a corporate vision is.

That’s because corporations, in my nonlegal opinion, are not people; they are abstractions. They exist only when you’re using or talking about them, whereas a real human being, or a group of folks, just exists. So how can an abstraction have a vision?

Stumped and stymied by this weighty question, I did what everybody does these days instead of praying: I googled it. Lo and behold as usual, Google answered with delightful speed and precision (which rarely happens with my prayers). It linked me to an article from down under, the other side of the world, where day is night; an article that explains – not how an abstraction can have a vision – but what that vision should be like. It was now time to set aside philosophy and (re)write the damn vision of Humaginarium.

I normally don’t share external links in this blog, but because this one is particularly useful and may save other entrepreneurs some time, I am inserting it here. You may read it if you wish; if you do, it may help you answer the question at the bottom of this page.

So then, drum roll please. The vision of Humaginarium is: Popular video game entertainment that inspires regular folks to master chronic illness.

Romantics like me expect visions to be exciting, even breathtaking, like Elon Musk making a crazy announcement or Steve Jobs throwing down the gauntlet. That comes from the notion that a vision statement is a coming attraction, but according to the experts down under, it is not. It’s not a call to arms, not an expedition to the Misty Mountains, not something you run up the flagpole and salute. It’s humbler than that. A vision is a very, very short description of what will be different in the world when the work is done and the dream has come true.

Popular video game entertainment that inspires regular folks to master chronic illness. My vision statement is appropriately short and it does sound matter of fact. Nonetheless it’s aspirational. I shall explain.

The word “popular” in it means accessible, affordable, convenient, easy to use and much loved: different from all past and conventional health promotions. If Humaginarium makes health literacy cool, it will be f***ing amazing.

Video game entertainment” is our flagship product; not the only thing we make, but the main thing. Why? Because our addressable market of 100 million consumers who like video games and have a chronic illness may flock to Humaginarium if it’s really fun to play. A few hundred may come if it’s merely edifying.

Our work “inspires” by awakening ambition and self-determination. These conative attributes are supportive of self-efficacy (the pillar of our brand). I say “conative” with trepidation because, though the word is older than the English language and is just as meaningful as “cognitive” and “behavioral,” I have never uttered it in mixed company without being asked, “What’s that?” I’ll save you a trip to the dictionary with this handy definition of conation: the mental faculty of purpose, desire, or will to perform an action. Inspiring!

Regular folks” are the kinds of consumers we serve. I borrowed the phrase “regular folks” from Chris Anderson (the futurist and writer, not the TED founder). He uses it when referring to people who are not differentiated by affluence or education. Regular folks is pretty much everybody I meet who is not pretending to be somebody different.

These folks “master chronic illness” by means of understanding and asserting control over it – in our games and in their lives. The chronic illness may be one they have or one they risk; both kinds of threats are mitigated by health literacy that is generated by Humaginarium.

So what do you think. “Popular video game entertainment that inspires regular folks to master chronic illness.” Good enough?

Shameless

The mirror always lies.

Mirror, mirror in my hand, who’s the fairest in the land?” It depends who’s asking. If the Evil Queen asks, she’s usually the fairest. Anybody else – like you or me for example – fuhgeddaboudit! We look in the mirror but can’t see a body there. Instead there’s a body image: a placeholder for the real thing. Most folks find their own body image fascinating and true. Yet nobody else can see it, because it’s also unreal. Like Humaginarium minus the fun.

Basic body image is contrived self-awareness of personal beauty, or lack of it. It’s a mental model, a projection rather than a reflection, something like Peter Pan’s shadow. Body image is a creative reconstruction of the organismal self: physical, behavioral, visible, expressive. It’s everything that reflects sunlight in the real world, though it isn’t actually there.

Body image is superficial yet complicated, sometimes disturbing. We rarely see one without feelings of surprise and delight, or curiosity, or suspicion, embarrassment, even shame. When body image feels out of control, we try to master it with stuff – fashion, coiffure, cosmetics – that make the image look, well, more beautiful in the mirror than the body is in real life. At least we try. It gets expensive.

Folks have positive and negative body images that alternate, like having two of those wily Peter Pan shadows. The images switch on and off with moods, health conditions, social interactions; and they produce different, confusing outcomes. Positive yields satisfaction and acceptance of self. When our body image is positive, we’re like the Evil Queen when her Magic Mirror says, “You are the fairest!” – or at least fair enough, fuhgeddaboudit. Negative body image by comparison is stressful. It unleashes feelings of sadness, anger or alienation. “Snow White is now the fairest,” says the Magic Mirror unexpectedly to the Evil Queen. “You’re kind of a mess.”

Was the Magic Mirror body shaming the Evil Queen? The fairy tale doesn’t say, but yes, I think that’s what happened. The Evil Queen felt humiliated because her outward appearance was somehow, suddenly flawed though it hadn’t changed one iota. In a modern retelling of Snow White, the Evil Queen would not begin a criminal conspiracy to murder and cannibalize her rival. Instead she would enroll in a gym, reduce the size of her portions and meals, try a different hairstyle, consult a plastic surgeon, move her shopping from Bloomingdale’s to Bergdorf Goodman.

But none of that would matter. Why? Because it isn’t true that the Magic Mirror never lies. The mirror always lies! False positives and false negatives abound, making folks complacent or anxious but rarely indifferent and often inauthentic. How they look determines how they feel; and how they feel about themselves may damage their selfsame body – the one that is invisible in the mirror but is the only incontestably real thing about them. Agonizing body dysmorphic disorders may start when the mirror is mistaken for a magician.

Humaginarium also performs magic, but not with mirrors. Rather than judging relative body shape or size, rather than identifying flaws in a body that have to be masked or fixed, rather than exaggerating the importance of irregular features, it flatly states that the human body is a miracle. To be clear and unequivocal: every human body is a living, breathing, sentient miracle; not because of how it looks, but how it works and acts.

Perceiving and appreciating the intrinsic beauty of this miracle yields something far more satisfying than positive body image. It yields a positive body, full stop! That’s a good foundation for resilience, self-worth and self-determination that pursues and preserves health. It’s a good attitude to take to all those mirrors in the dressing room and bathroom: proud of your beauty, inside and out, and utterly shameless.

Biology as a Second Language

We understand the body about as well as we understand my first paragraph.

When the amygdala perceives sensory information from the thalamus to be threatening, it engages the paraventricular nucleus in the hypothalamus resulting in the stimulation of corticotropin-releasing hormone (CRH), which begins the stress hormone cascade. This hormone then stimulates the pituitary to release another hormone called adrenocorticotrophic hormone (ACTH). This hormone travels down to the adrenal cortex gland, which produces the stress hormone cortisol. Cortisol in turn will feedback to the hypothalamus and the pituitary.

I’m quoting above from a book named The Science of Stress. The authors explain to the general reader how the HPA axis responds to internal and environmental stressors of the human body. I bring this up here for two reasons.

First, the axis is implicated in metabolic syndrome and diabetes mellitus type 2, the subject of our prototype projects Diabetes Agonistes and Metabolic Genii. The HPA axis is a kind of tripwire: the cause of and the mechanism for incredible biological activity in our bodies: every body, every hour of every day. The axis keeps us healthy or makes us sick depending on forces that we, rather than it, control. If the axis didn’t work properly, with phenomenal speed and precision, we would suffer and even die. Yet most of us willfully undermine the axis with some of the behavior typical of our personalities.

Personality is a vague concept, but I think it’s fair to say that personality or self (ego, id, superego) is neither inherited nor determined by environment. It’s a product of the individual imagination – a creative projection of the mind – that tends to take the body for granted. “I think therefore I am.” Until – inevitably – the body breaks down and it’s hard to think straight. We choose to behave as we please, often dangerously, because we understand the body about as well as we understand my first paragraph; i.e. we’re clueless.

My second reason for quoting The Science of Stress is to make a point about health literacy. We know that literacy is the ability to write and read language. And in our society, basic literacy is purportedly equivalent to eighth-grade communication skills. In other words, to be nominally literate in America, in 2019, is to communicate like an adolescent.

That is why my first paragraph is a challenge for regular folks. It is written in English that a scientist or clinician, with abundant education, easily understands. It is not written in the English that the vast majority of their fellow Americans can even read, and none could ever write. For that reason, the meaning of the paragraph doesn’t exist for them. They can’t interpret or use it, and that’s a problem.

You could say those scientists and clinicians are certified BSL: biology as a second language. They’ve been trained to read and write the language of biology. Not for its own sake of course, but in order to use biology in their professions. The humanities majors among us, and the greater number who never got past high school, are literate in that adolescent way. We are not BSL certified. We can’t understand and use biology because it’s wrapped in esoterica.

Or can we? Of course we can’t teach BSL to the masses. We could however extricate biology from its language wrapper and render it in forms that regular folks can easily understand – and even enjoy. That’s what Humaginarium is doing with the biology of chronic illness. Making it animated and visual with symbols and pictorial narrative. Making it tangible so folks can touch it, play with it, fight with it, figure it out and master it. Not biology as a second language, but biology in a visual language of color and shape that folks are already fluent in, and capable of probing for meaning.

Now, some would say that regular folks cannot understand biology, not because they’re baffled by the language, but because biology is way too complicated. This may be why most promotions of health literacy avoid science like a plague and focus on behavioral adherence to rules. I’m betting those promoters are wrong. Based on my experience as a parent, a patient and an educator, there is nothing in or about biology that is beyond the capacity of an average adult to understand.

All those average adults are organisms at the top of the food chain. They are outcomes of billions of years of evolution. Their minds are the most wonderful things that nature has ever made. They are not stupid! They certainly have the capacity and the motivation to understand, interpret and use science to fight chronic illness. Only first, they have to take off the gloves, and we have to take off those bewildering, jargony wrappers.

Scientific entertainment. Dante and Virgil in Hell, by William-Adolphe Bouguereau; pictured with histology of the pituitary gland.

Psychoneuroimmunology

Producing outcomes without being a healthcare company.

Humaginarium is not a healthcare company. We’re unlike startups whose therapies heal or cure; also unlike those who manage medical service delivery. Nothing we do for patients requires access to medical records or histories; nothing we deliver to patients requires prescription, clinical control or reimbursement. In fact we rarely think of users as patients at all, but as regular folks.

Likewise Humaginarium doesn’t cater to providers, payers or suppliers of the healthcare industry. We don’t make things for them to buy or ask them to finance what we make for consumers. True, we are working to earn their versions of the Good Housekeeping Seal of approval, but not because it has monetary value. The effort to gain healthcare industry blessing will simply make us a better company.

All of the foregoing seems rather odd and uneconomical positioning for a health tech startup, but hopefully it’s rational. I’ll try to explain.

Humaginarium is an entertainment company. We develop video games and ancillary apps that amuse and inform. We use our programs to educate and empower people; not about everything, of course, but about their bodies and health; in particular about chronic illness they have or risk getting. Why? So they themselves can actually do something about it!

The foregoing category description rests on four functional pillars known as health promotion, health literacy, health education, and health equity. With a difference. Most programming within those pillars is behaviorist. It’s about conditioning: what, how and when to do things in order to become healthier. It’s rarely about learning: why something is and why it can be different.

Humaginarium is all about that why. As artists and educators we know there is only a dotted line between understanding and making a difference in real life. Our project turns those dots into a solid line with an arrow pointing to personal empowerment.

Yet as a high-tech artist and educator, am I certain that Humaginarium won’t heal or cure? I’m really not sure of that, so I don’t claim that it will; but I think it’s possible. Moreover likely.

I say this because I believe, from study and experience, in causal connections between mind and body; between mental and physical. The clinical term for such connections is psychoneuroimmunology (PNI). Everybody experiences PNI throughout their lives, practically every day and certainly when enjoying great entertainment, but science is only beginning to recognize and explain it. Clinicians by and large don’t have a clue. But it’s real.

A palpable example of PNI is the placebo effect, by which perceptions and beliefs improve health outcomes. Peer-reviewed research has proven (beyond any reasonable doubt) that the way people think and feel about themselves and their environment alters the biochemistry of their bodies. In plain English, our state of mind can actually make us well or sick. Everybody knows that, but why is it?

“Theorists propose that stressful events trigger cognitive and affective responses which, in turn, induce sympathetic nervous system and endocrine changes, and these ultimately impair immune function.” Did you get that? So for example, job insecurity or marital difficulty can, and often does, make people literally frail, vulnerable and symptomatic.

But what are job insecurity and marital difficulty? They are types of stress produced by the same thing: a lack of control. The same kind of stress that occurs with chronic illness. You have it, you don’t understand it, you can’t predict it, you can’t avoid it. It feels like a bewildering constant threat, like an asteroid heading towards your personal planet.

As such chronic illness is a self-perpetuating condition. The more fearful and anxious and angry the patient gets, the worse the disease may become. That’s fact, not fiction.

Humaginarium answers that fact with fiction. Literally, with fantasy in which users can face and understand and oppose and overcome illness in their minds. Fantasy of this kind is not merely an escape from reality, it’s an engine for belief in oneself; belief that “I am the master of my fate.”

When discussing PNI in the context of his long medical career, Sherwin Nuland wrote, “The question that remains is how these three major networks – the nervous system, the endocrine system, and the immunologic system – interact and, how, by understanding these interactions in precise quantitative terms, we can learn to predict and control them.”

That question is for scientists including positive psychologists, but not for artists and educators like me. We already know PNI works, though we can’t yet explain the molecular and cellular dynamics. If it works, we want to use it right now, not after decades of clinical trials, for the benefit of folks who have or risk getting a miserable chronic illness.

That is what Humaginarium is doing, and that is why I expect to produce meaningful outcomes without being a healthcare company.

Miracles

Belief in miracles is central to the mission of Humaginarium.

According to Merriam-Webster, the spiritual meaning of miracle is an extraordinary event manifesting divine intervention in human affairs. A miracle may also be a divinely natural phenomenon experienced humanly as the fulfillment of spiritual law. Can the miraculous, when candidly understood, really have anything to do with modern biomedicine?

Well, from the perspective of Humaginarium, the answer is yes. I am long known for saying (every time I get the chance) that “your body is a miracle.” No matter how young or old, how well or sick, how strong or weak, how happy or sad, how beautiful or ugly; our bodies are miraculous!

Oddly though, my claim has never been challenged. It’s odd because Humaginarium is scientific, technical. It leverages high-fidelity simulation of human physiology and biochemistry. Can miracles occur and be expressed in an environment like this? I say they can; moreover they must.

Belief in miracles is central to the mission of Humaginarium. You don’t have to believe in them when you first come to play; you don’t even have to believe when you tour homeostasis in the Arcade. However by the time you cut a path through the Morbid Frontier and killed or captured disease that haunted and persecuted you, you will gladly believe. And belief may change your life.

With miracles, am I referring to fantasy that overlays biology in our scientific entertainment? Are the miracles I speak of just figments of the imagination? They are not. They are tangible, objective and real. Rather than argue this point logically, I prefer to cite two authorities who come at it from different experiential perspectives: one a physician, the other a patient.

The physician is Sherwin B. Nuland (1930-2014), an eminent surgeon at Yale who wrote several books and articles about practicing medicine. In The Wisdom of the Body (1997) he reflected:

Centuries ago, when little was known of science, the mystery of the body’s internal machinery enthralled ordinary people and tantalized the educated. It seemed a miracle, this bustling edifice of thought and action – beyond the capacity of mere mortals to comprehend, and yet providing here and there a hint that the inscrutable might somehow be understood if only properly directed efforts were made. In time, the right direction was indeed found and the efforts were rewarded, yet the tantalizing and the mystery not only did not lessen; they actually grew. The more became known, the more miraculous seemed the intricacies of the whole and the more urgent the drive to expand our knowledge.

The patient is William Ernest Henley (1849-1903). At age 12 Henley was diagnosed with tubercular arthritis that eventually forced the amputation of a leg just below the knee; the other foot was saved only through a radical surgery. As Henley healed in the infirmary, he began to write poems, including Invictus (1875). This famously inspiring poem seems to be about many things, but in fact it is about one thing: a debilitating chronic illness that eventually killed him:

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

The soul that Henley celebrated is the miracle that Nuland found in his practice of medicine. It is the courage that users unleash in themselves as they explore Humaginarium. Miraculous because science can’t explain it; unconquerable because medicine doesn’t eclipse it; courageous because it is the unfettered expression of the human spirit in our mortal, phenomenal bodies.

Scientific entertainment. Prometheus Creating Man in Clay (1845), by Constantin Hansen. Pictured with a swarm of microbes and viruses like those that swarm our bodies.

Literacy

Caring for a human body requires diligence, a force that is powered by health literacy.

My website says “Humaginarium is a systematic and evidence-based way to increase health literacy.” Let’s slow that down for a closer look.

For me at least, all literacy is a situated competency. There are no universal definitions and standards. Instead literacy is a personal, differentiated and evolving attribute. Yet somehow it always encompasses the same four generative acts: recognizing information, understanding it, relating it, and using it. If folks can reliably do these four things appropriate to their circumstances, they’re literate though maybe – probably – in dissimilar ways.

Recognizing information is knowing what something is. We naturally recognize information when encountering the source of it. Understanding is discovering and pondering the meaning of information. For example understanding why Ingres spent decades painting The Source (shown at the bottom of this post) in his unique way; and understanding why it is perfectly beautiful like that. Relating is assigning context to information so that it fits functionally or imaginatively into one’s world view. I related (and distorted) The Source by inserting a concocted cellular view of water, in order to reveal dangerous bacteria supposedly living in it. Using is working with information. My job with Ingres was to bridge an aesthetic divide between art and science. I tried to embody “scientific entertainment” – and also have fun (respectfully) with a great work of art.

Since I haven’t mentioned reading so far, I’ll pause now for a confession. I trained and practiced as a professor of English. Before technology barged into my life I taught college students how to learn from the literature and history they read. This was my vocation: increasing literacy by means of text. To this day I enjoy and learn more from reading than anything else I do, yet I don’t feel that literacy is fundamentally about scanning text. Reading is only one way to recognize information, often not the best way, and certainly not the way that Humaginarium promotes health literacy.

My notion of health literacy aligns with the four-part model of recognize, understand, relate, and use. Health literacy is all of that, only situated in health. Sounds pretty straightforward, but it isn’t.

First there’s the wrinkle of “health.” By that I mean the condition of a human body, the physical thing one calls “my life.” Health is neither illness nor wellness, diagnosis nor treatment, scheduling nor adhering. Health is the sum total of a human body and health literacy is a person’s ability to recognize, understand, relate, and use information concerning the body.

Next there’s the wrinkle of information. Information about the human body is extremely hard to take in because most of it is hidden in layered systems so complex and mysterious that they’re nothing less than magical. I’m using that term literally. Our living bodies are miraculous no matter what condition they’re in. They’re just very hard to make sense of.

There are more wrinkles with understanding, relating and using information about the body. Few regular folks ever even consider most of that information; they can’t understand the scientific and medical rhetoric used to express it, and they have little or no idea how to use it. Let’s be candid: for most folks, using information about the body is limited to consumption, procreation and labor – and most of that can be done well enough without health literacy.

Then why bother with it? Well, I think health literacy enhances acceptance of what the human body is, how it works, what it needs and why it’s in each person’s practical self-interest to care – with gobs of curiosity and courage. Caring for a human body requires diligence, a force that is powered by health literacy.

As health literacy increases, so does medical efficacy and the capacity for self-care. Those are two horsemen of a long-awaited apocalypse that may bring a failing health care industry to its knobby knees and replace it with the best health care possible. The kind that every individual with a chronic illness, regardless of educational or socioeconomic situation, constructs for themselves. Those are the folks who may benefit most from Humaginarium.

Scientific Entertainment. Variation on The Source (1856) by Jean-Auguste-Dominique Ingres. Pictured with Vibrio vulnificus, a type of waterborne, flesh-eating bacteria.

Behavior

Without getting to the why there is no getting to behavioral outcomes.

Is scientific entertainment™ an offshoot of behavioral science or behavioral medicine? With the FDA approving video games as therapy for the first time, the question is hardly idle. The answer may explain how Humaginarium achieves meaningful outcomes.

Behavioral science is the study of human behavior through observation, modeling, and experiment. Behavioral scientists investigate why people do what they do, and how they might do better. The scientists have a voracious appetite for meaning, so they stir separate disciplines into a unified mode of inquiry, wrangling diverse epistemology in order to discern and use truth in more holistic and robust ways.

Behavioral medicine is likewise the study of human behavior with a unified mode of inquiry. Practitioners study why people are unhealthy or at risk of illness, prone to injury, difficult to treat, heal, or cure; why they’re frail or short lived, and how they can manage health with more than biomedicine. Having a voracious appetite for meaning, practitioners look beyond clinic to identify environmental, psychological and social dimensions, causes, or palliations of disease – and try to make good use of them.

I now think that scientific entertainment is indeed an offshoot of these correlates; that it’s “behavioral entertainment.” It involves depictions of human behavior derived from observation, modeling, and experiment. It relates why people do what they do, and how they might do better. For example, why they often increase risks rather than avoid or control them; and how they might act differently to produce more desirable outcomes.

Could it be that standup comedy on The Daily Show is also behavioral entertainment; likewise animation by Pixar, theater by Lin Manuel Miranda, painting by Banksy, fiction by Margaret Atwood, movies by Guillermo Del Toro, music by Bob Dylan, and video games by Will Wright? All of these make audiences feel good while moving them to create and use new meaning.

If scientific entertainment in Humaginarium is behavioral, it’s important to remember that behavior is more than how people act; it’s also why. As Robert Sapolsky makes abundantly clear, without getting to the why there is no getting to behavioral outcomes.

In humans, “why” leads through a morass of conscious choices and decisions, through nervous reactions of the senses, all the way to the tremulous molecules that compose our bodies and microorganisms that live in and on us – some keeping us alive and others just the opposite.

I’m claiming to be behavioral, but not behaviorist. I don’t suppose that humans are machines that can be programmed with external conditioning. More in line with behavioral economics, I think people should not be trained, conditioned, or forced to do anything they prefer not to do.

The job of scientific entertainment in Humaginarium is to help them recognize choices and make decisions in what they believe is their own self-interest. That’s our nudge to wellness™.

The nudge is what allows us to generate behavioral outcomes. As I have often heard the butterfly say to the fish, “the best thing in the world you can be is yourself.” People who find themselves in Humaginarium may grow more confident that they’re incredibly beautiful and brave and may become ever more so.