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.

Checklist

Putting my nose to the grindstone for Humaginarium

During the past week of travel in Scotland, I was reminded every day of The Checklist Manifesto, the book by Dr. Atul Gawande that recommends the use of checklists in complex situations like an OR or airplane cockpit. For years I’ve used the Wunderlist app to make and manage lists of practically everything I set out to do. I don’t know if I could function these days without it! Even when traveling last week, starting each day with a neat list on my phone of goals to accomplish, whether large or small, and ending the day by making a fresh list; well, there is nothing more satisfying than that – except maybe a wee glass of Aberlour A’Bunadh before a hearty dinner of Scotch chicken and leek pie.

My checklist for the next four months is going to be broken down into daily milestones that I must meet before I turn in each evening. I am coming to the start of a nasty nose-to-the-grindstone quarter for Humaginarium, exciting and dreadful at the same time.

Wait, isn’t that what every quarter is like for a startup? Well no, not for this one. I love keeping lists, but I also love “slack time”: leaving plenty of play in every day for work that is not consciously goal-oriented; for example, writing this blog. My most satisfying accomplishments are often randomly inspired and unplanned. Alas, there won’t be much of that for the rest of this year.

My top priorities are to finish writing two grants – one to the NSF, the other to the NIDDK – for Phase 1 SBIR funding of R&D. The grants are more than seed funding; they are blueprints for an enterprise that will ascend in 2020 like a hot air balloon, with me and my colleagues in the basket holding on for dear life. I’ve been working on the grants for a while, but somehow not taking them seriously enough. They have not been properly committed to checklists! Now the time has come to get very serious. These grants are not quick wins or slam dunks. They require meticulous planning and writing, the kind I can do when I’m not enjoying myself very much. Oh well, nose-to-the-grindstone.

In the same period I will also facilitate a new cohort of experiential learners at the Northern Illinois University College of Business. These undergraduate business majors will be directed by Humaginarium and a team of financial consultants in Chicago and San Francisco who like what Humaginarium is doing with health promotion and video games. We’re going to study and make better sense of things like valuation and commercialization, if that’s not biting off too much between now and the end of the year.

A different cohort is likewise forming as I write this, one with enormous potential value if managed well. It’s a Circle of Industry Advisors including corporate stakeholders at provider, supplier and payer organizations who are strategically committed to my four pillars: health promotion, health education, health literacy and health equity. You know, the important stuff that I care so much about, but is hard for most folks to monetize even in their heads. The stakeholders will help ensure that Humaginarium moves the needle of population health in ways that industry endorses. I am not looking for funding from the Circle, just knowledge and brand equities.

That is an overview of my current checklist. Will I do just this and nothing more? Well, there’s one more little thing that may be added. Humaginarium was asked to create an innovative module of continuing medical education for practitioners of a medical specialty. I’ve been slow to take this up because it doesn’t feel particularly altruistic; in other words, it’s work for a fee and it isn’t likely to change the world for the better.

For reasons unknown to me at the present moment, altruism has become almost a filter that I use to evaluate opportunities. This is very strange, to put it mildly. It may be because I am painfully alienated by the economics of American health care. They are pretty disgusting and dispiriting, and I don’t like getting my hands soiled with them.

Yet the prospect of making boatloads of money from consumers with health problems is a key driver of Humaginarium. I’d better put that goal on a checklist so I can chunk it down to bites I can swallow, maybe with the help of Aberlour A’Bunadh.

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.

Mechanics Redux

Adventure is agon. Not merely fighting, but fighting for something that matters.

Mind Mapper. Experience in the morbid frontier is enchanting, intriguing, dangerous, bewildering. As a meaning maker, your job there is to filter experience for things that matter – things you can use – and relate them to an obscure metabolic condition that is ominously unfolding in the shadows. Like an archeologist, you interrogate each shard you pull from the biomuck for the story of what it is, how it works, where it came from, what it wants and why. The shards are tangible things with familiar, physical properties; moreover they are metaphors for other tangible things that were beyond your ken before Humaginarium: atoms, molecules, cells, tissues, fluids, organs, mechanisms. You capture their stories with the aid of dynamic mind mapping. This is the visual equivalent of “mapping sentences” that distill coherence from a churning chaos.

Dorian Gray. Users in the morbid frontier are not told what to do or forced to do anything. They do what they want in light of self-interest; which means, whatever it takes to win. Most users will do anything to win, yet their moral and intellectual lights are dim to begin with; and they lack wisdom to make good choices intuitively. So they wind up making and having to cope with bad decisions and failures. How does that affect them? The way crime affects Dorian Gray in Oscar Wilde’s novel: by scourging the alter ego. Users who do bad things for the sake of quick wins – such as skirting or accommodating rather than confronting and controlling morbidity – may appear outwardly heroic, but they are wounded warriors in Diabetes Agonistes. They can eventually heal their wounds by atoning (changing, compensating) before it’s too late; or allow wounds to fester and settle into disability.

Monsterography. Maybe the worst thing about chronic morbidity in real life is transparency. You can’t see, hear or touch this disgusting thing that’s inside you, but is not you. You feel it when it flares, but even when that happens all you can see and hear and touch is not disease, but the tracks that disease leaves on your flesh and psyche after the ravages. The physical evidence indicates that your body itself is the disease: the perpetrator rather than the victim. You blame the victim for your pain and suffering. You’re revolted by your own body that is relentlessly harming you. You fear, you’re angry and you deny the body the way a prisoner despises a jail cell. “What have I done to deserve this? My body hates me.” But unlike life, in Diabetes Agonistes morbidity is not transparent. It appears as it feels: monsters in the body, but not of the body. Horrible monsters that you can more than revile: you can, if you’re clever, destroy them without ever mistaking them for the world they occupy. Monsters here are personified, parasitic, repulsive chronic diseases that users capture and kill while the godlike body lives on.

Combat. My game mechanics stress cognitive and emotional affordances. I want users to perceive and think their ways through challenges, not randomly shoot them down like snipers in a carnival booth. “Nice shot, lad! Here, have this worthless trinket as your reward.” I daresay I’m bored by meaningless kinesis in play of any kind including video games; and I believe that many adult players feel the same way. We want adventure much more than effects; and adventure by definition is purposeful risk-taking. In most play and in Diabetes Agonistes in particular, adventure is experienced as agon. Not merely fighting, but fighting for something that matters. That something – here and now – is wellness. The fighting that wins wellness is tense, noisy, horrifying, vicious, calamitous, brutal, raw, hopeless, heroic. Fun for its own sake, yes, but these many fights accrete into an epic struggle, a true adventure. Humaginarium rewards wins not with trinkets but with tokens that reinforce users for later, harder, nobler existential challenges.

I have a few other core mechanics for this post, but instead I will end with a reminder about context. Diabetes Agonistes is a simulation. It’s a system simulation of physiology and biochemistry; it’s also an experiential simulation of health literacy tempering medical self-efficacy. As a game simulation, interactivity is maximal; passive displays are minimal. Several times a minute during hours of play, users must ask themselves and the game tech: “What is this? What does it mean? How can I use this? What should I do?” Simulation then is our ultimate game mechanic. The faithful, behavioral representation of how chronic illness manifests inside the human body. Damn hard to get your head around, and incredibly fun to try.