For me, the smell of a theatre still intoxicates me.
There is nothing more sublime than being the last one out at the end of the night, and catching that furtive glimpse of the lone ghost light—bravely peering his way into the darkness and keeping vigil over our stage as if it were the very ramparts of Elsinore.
And indeed, sometimes it is…
Rome fell for falling
A victim of conceit
If we won’t rise to mend our ways
At last our ends will meet.
The fall of Rome passed us by
Although we share its fruit
We take no heed in what was lost
Or what we gained in loot.
For now, the Empire’s come and gone
The ruins left to roam
Descend upon this tourist spot
And then return back home.
Are we to see ourselves in them?
A culture far from us
They lived – they breathed – they die no more
Returned back to the dust.
If there’s a lesson in Rome’s fall
America’s Exception –
Is liberty and freedom
And have been from inception.
Those we brought from far away
Wear masks that grin and lie
They have to keep their faces hid
Or happy pain belies.
Meanwhile those that die by day
Weren’t killed by masked assailants
They died from fighting selfish neighbors
Who boasted breath free from ailments.
Rome fell for failing to stand
Just as we will fall ourselves
If we can’t come together now
They’ll read our demise from shelves.
A house divided cannot stand
A nation is no stronger
If we don’t rise to mend our ways
We won’t be here much longer.
Introduction
When we envision a tapestry, it is easy to see how many threads join together to create a beautiful new and cohesive fabric, pleasing to the eye—and yet—also functional and utilitarian. It has an aim and intent. It is, at once, a thing to behold and entertain, while also having a purpose –whether to cover a wall, provide insulation from the cold, or to add color and panache to the interior design of a home. It takes many different colored threads to weave a tapestry that is pleasing to the eye, and in some way, it also tells a story. A tapestry tells a tale of the people who made it, and of the people it was made for. The color, design, pattern, and style all reflect the aesthetics and tastes of a particular group of people. A tapestry tells a story.
In much the same way, our society creates a tapestry of its own, as it weaves stories together, and creates a narrative of its past, present, and future. Since the first human beings began to speak and communicate, they have told stories and crafted tales that connected them to their home and environment, and linked them together as a community. The content, form, and function of these stories throughout our history reflect the morals, attitudes, mores, tastes, and belief system of the people who told the stories, and for the people they were intended for.
From Cave to Stage
Perhaps the first stories ever “recorded” were cave paintings, also known as parietal art, which were painted drawings on cave walls or ceilings, mainly of prehistoric origin, beginning roughly 40,000 years ago (around 38,000 BCE) in Eurasia. The paintings are the earliest known examples of storytelling in the world. The exact purpose of the Paleolithic cave paintings is not known. Evidence suggests that they were not merely decorations of living areas, since the caves in which they have been found do not have signs of ongoing habitation. Some theories suggest that cave paintings may have been a form of communication, while other theories posit that they were intended for a religious or ceremonial purpose. The paintings are remarkably similar around the world, commonly depicting impressive animals. Humans mainly appear as images of hands, mostly hand stencils made by blowing pigment on a hand held to the wall. Whatever their purpose, the cave paintings were a form of storytelling and were a distinct form of communication and expression.
Since humankind first began to communicate, it is obvious that passing down stories was important to the culture. Storytelling is what connects us to our humanity. It is what links us to our past, and provides a glimpse into our future. Since human beings first walked the earth, they have told stories, before even the written word or oral language emerged. Through these cave paintings and over fires, humans have told stories as a way to shape our existence.
Our Lives As Stories
In our lives, things impact us and we experience events that may seem random or unexplainable. It is natural that we would seek to relay our story to others and try and remember the events as they occurred. Things happen to us, which are inherently the elements of a story, but as humans, we have unique perspectives, biases, and beliefs, which naturally shape how we retell that story. Unlike the other animals we share the Earth with, human beings have the ability to think and to make meaning out of the events that shape our lives. Therefore, it is understandable why we as humans would try and attach meaning and create a narrative out of seemingly unconnected and random events. These are the building blocks that make for a story. To further the tapestry metaphor, these life events are the diverse and disparate threads that must be woven together to create a cohesive and engaging tapestry of a story.
Storytellers learned early on that people like to hear stories with a beginning, middle, and an end. We seem to be drawn to stories that have characters that look like us—or at least share characteristics we can relate to. We also desire to be drawn into a story, and enjoy when a story builds up to a thrilling climax, followed by a satisfying conclusion. Often, we want to use our imaginations, but sometimes we don’t, and prefer to passively have a story told to us. Many of us enjoy being moved by a story, either emotionally, or viscerally, like in a good action film or a tender tale of humanity and redemption.
A Visceral Experience
Throughout history, storytelling has served many functions, and continues to do so today. Perhaps the most basic and straightforward purpose of storytelling is to entertain and to distract. When we go to see a movie like The Fast and the Furious, we are not going for the purpose of being educated, enlightened, or moved. When we watch films like that, we are there to be entertained. Entertainment can be delivered in various ways, and has naturally changed over the decades and centuries. However, the fundamentals of what entertains and diverts us have relatively stayed the same, even as the mediums, technologies, and methods of delivery have evolved and matured. Four hundred years ago, Shakespeare was writing plays that entertained us through humor and laughter, and action and horror. Not a lot has changed in the centuries since. Just as we draw inspiration from Shakespeare, the Bard himself drew inspiration from the Romans and Greeks, who had entertained through comedy and tragedy over a millennium earlier.
Throughout history, we can see humor and action used to divert our attention away from the tragedies, stresses, and discomforts of our own lives. Many people go to plays or to movies to be distracted from the stresses and realities of their own lives, and prefer to “turn off their brains.” These people do not wish to be educated or enlightened, but want the visceral thrill of being made to laugh or to watch action unfold on the screen. With major advancements in CGI, audiences today are being entertained at a higher and more sophisticated degree than ever before. It is possible to go see a movie and watch intense battle scenes and car chases that are completely manipulated or created digitally, and are viscerally thrilling and used to maximize excitement. Just as watching action sequences onscreen can distract a person, so can comedy. Both can function at a deeper level as well, but at its core, action and comedy are intended to entertain and distract us. Some of us prefer our stories to do no more than function as diversion, while others seek something deeper and more meaningful. These higher level thinking attributes of storytelling are deeply embedded in our culture, and are just as important to how we receive and incorporate stories into our lives. These elements serve to do more than entertain and distract us, but provide a more integrated and lasting impact on our society.
Our Emotional Connection
One of the significant ways that storytelling serves a society is through the use of emotion and empathy to build a rapportwith an audience. When people attend the theatre or go to a movie, some are looking to get swept away in the action. For some people, that is as simple as watching intricate CGI action sequences play across the screen. In those cases, there doesn’t necessarily have to be a lot invested emotionally in the characters or the story. For many people, action and comedy can exist untethered from the emotional lives of the characters, and there is nothing wrong with that. However, for many people, they go to see plays, read books, and watch movies so that they can learn more about themselves through exploring the emotional lives of others.
The great Greek Philosopher, Aristotle, wrote at length about the purpose of storytelling and theatre. He spoke of catharsis, where an audience would be purged of all its guilt, shame, fear, etc. by watching something awful unfold, like a Greek Tragedy on stage. When people watch a movie, for instance, they often want to be taken on a journey of emotion, in which they feel the same excitement, fear, anger, thrill, and other emotions that the characters experience onscreen. The film is therefore a tool by which an audience can live vicariously through the characters, and experience what it’s like to be terrorized by a serial killer or explore outer space or do any other number of things they may not have ever experienced, nor may never experience in their own lives. Watching a play or a movie allows an audience to feel the emotions of a character, and take a trip with that person, without ever having to experience the very real effects of that journey.
In watching a film or play, people have access to a wide variety of emotions that they may have experienced in their own lives, never experienced before, and very well may never experience even once. The beauty of storytelling is that it allows people to empathize and relate to characters who may share a similar story as our own, or experience people who look nothing like us, and may have a very different life than our own. The power of storytelling is that it creates empathy in the viewer, who finds an outlet in order to channel their emotions into the characters in a story, and allows them to feel for the characters and feel LIKE the characters. This emotional connection is what invites people into a story, and motivates them to become emotionally invested in the characters and the storyline. Perhaps greater than dazzling action sequences or transitory moments of comedy, is the ability for a story to captivate its audience through raw emotion. When an audience is invested in the emotional lives of a story’s characters, they seem to be more devoted to the story and its outcome in general.
There are two primary types of emotional connection to a story. The first is to be engaged with the lives of characters who are feeling deep emotions and experiencing nuanced feelings like we have never felt before. In this case, an audience member is moved to feel what another human being feels, even if they have never experienced such emotion in their own lives. An example of this might be a person with money and prestige moved by the plight of a poor and dejected member of society, and their struggle to overcome poverty. Through storytelling, we are able to weave stories about people who may not look like us or come from where we come from, but are still able to engender pity and empathy within the viewer. In that case, the spectator becomes so invested in the character, they feel compelled to momentarily live another’s pain, joy, heartache, love, etc. This is the very definition of empathy.
The second type of emotional investment is when we see ourselves on the screen. These are the kinds of stories that are told about people like you and me, and people we know well. We are able to see ourselves in these characters, and can easily be moved by their stories, because perhaps they are enacting our own lives, and exploring the complex range of emotions we each feel everyday. When we see ourselves onscreen, we see all our hopes and dreams, triumphs and defeats, and all the nuanced emotions that surge through our bodies everyday. When we watch stories about ourselves, we can emotionally connect to what other human beings feel that we may have felt, in order to feel not so alone and to reaffirm our own humanity. In many ways, seeing ourselves onscreen or onstage is consoling, and allows us to claim a piece of our community, and reaffirms that we are all members of the human race. Whether someone is emotionally identifying with those who look different from them, or whether they feel they are looking at themselves on stage, it is difficult to imagine a more intimate experience than becoming invested in the emotional lives of the characters who populate our stories.
Building Character Through Characters
Another significant way that storytelling is important to a society is the way in which it creates role models and characters we can identify with. As human beings, it’s important to identify with certain types of people, learn behaviors, and become socialized as individuals. Just as our friends and family influence us immeasurably, so do the characters we read in books, see on stage, or watch in the movies and on television. From our first glimpse of television and movies to the first bedtime stories we hear, we are constantly exposed to characters who have professional lives we may someday aspire to. It is not uncommon to be introduced to doctors and lawyers, firemen and police officers, and truck drivers and astronauts. When we are exposed to these professions, it’s not unusual to develop an affinity for one job or another. Again, we relate to who we relate to, and it’s often easy to see ourselves in a story, including the jobs we have, the jobs we’d like, or the jobs we left behind. Storytelling is a way to introduce people to professions, and explore those careers right from the comfort of our own home or a seat in a theater.
Along the same lines, storytelling allows us to envision ourselves as somebody else –for good or for bad. It allows us to see ourselves as who we’d like to be—perhaps as an action star, a double agent, or a dashing romantic lead. Or perhaps just someone more confident, more outspoken, or more successful at love. We are able to measure ourselves against the characters we see onscreen, and that can be a motivating factor in making real and lasting change in our lives. Perhaps we are inspired by the stories we see, and are moved to take action in our own lives. Conversely, storytelling also has a cautionary function, and can depict characters who are cruel, gruesome, evil, and despicable in many ways. These kinds of antagonists can allow us to envision what we don’t want to be, and the kinds of people to stay away from.
In creating complex and engaging characters in the stories we tell, we are creating types that fulfill our needs in our personal and professional lives. When we see two friends on screen, we can look for those traits in new friends, and cultivate them in the relationships we already have. When we see romance on screen, we can aspire to have the same romantic relationships in our own lives. Naturally, we have to be cautious and realize that the stories we see are not always realistic and may be unattainable, but nonetheless, they can serve to inspire and motivate us in our own lives. What we see is often aspirational, and we can learn a lot from the characters we’re exposed to in books, on stage, and onscreen.
Morality, Socialization, and the Education of Youth
Since the first stories were ever woven, one of the major purposes of storytelling was to educate, as well as to entertain. Storytelling may or may not have grown out of religious rituals and ceremonies, but either way, there has always been an aspect of storytelling that was meant to enlighten and elucidate. For instance, stories have been used for centuries as a cautionary tale to remind us what dire consequences there are for various actions we take. Stories serve to enlighten and prompt us to act, for when we forget the humanity of others, we risk losing our own humanity. There are many books which fall into the genre of dystopian fiction, which serve as reminders as to what can happen when we allow dictators to rule and authoritarian regimes to rule a nation. Several of these books have been turned into movies, and include 1984,Brave New World, Fahrenheit 451, and A Clockwork Orange. Each of these books are cautionary tales, to remind us of the dangers of fascism – in all its many forms.
In many instances, stories are written in order to teach us morality and the difference between right and wrong. The characters often face tough moral challenges, and are forced to choose between the easy and convenient decision, and the difficult, but moral one. The book and film, To Kill a Mockingbird,is a prime example of a story that is intended to teach morality and to shape and change societal prejudices. At the time it was written, the country was just beginning to emerge from the Jim Crow laws of the south, and the Civil Rights movement was challenging segregation and longstanding oppression. Author Harper Lee crafted the character of Atticus Finch to be an upstanding and moral southern gentleman, who would go on to defend the accused African American man, Tom Robinson, and fight racism wherever he saw it. Atticus’s children, Scout and Jem, were taught lessons about how to treat each other with kindness and empathy regardless of skin color, and we, the audience, were taught through his fine example.
A Lesson in History
Years later, Stephen Spielberg would make the haunting and arresting film, Schindler’s List, also based on a bestselling book. Through shockingly realistic depictions of concentration camps and fierce Nazi brutality, Spielberg weaves a cautionary tale for us about man’s inhumanity towards man, and the depths of depravity our brethren have sunk to. The film is intended to educate generations of people who never saw the Holocaust firsthand, and to remind us that we must “never forget” what happened there, and what could easily happen here, if we ever allowed a man like Adolf Hitler to gain power again. Like many important works of art, Schindler’s List is a story that educates us about our own history, while pulling us in with its characters and engaging story. We become emotionally invested in the characters, and are moved by their plights. While most of us may have never experienced the horrors of the Holocaust, and can only imagine the cost of such brutality, we are pulled in by the humanity of the characters, and are forced to empathize with their experience. A movie like Schindler’s List is successful on many levels, because the film manages to draw us into its story through action, good acting, an engaging plot, superb direction, masterful art direction and design, and emotional investment, while also educating us along the way. We are taught a history lesson, a lesson in morality, and entertained all at the same time.
Storytelling can serve to educate a society about itself, and to provide a history lesson about where we all came from. We can learn invaluable things about who we once were, and be reminded of who we want to be. Even science fiction serves the purpose of education and allows us to explore the possibilities and potential of the human condition. For example, as a cautionary tale, science fiction can warn of the dangers of technology run amok, without any thought to its moral implications. A movie like Metropolistells a harrowing tale of a future overrun by machines and the horrifying technology we have created to make our lives easier. However, if the human race is in fact evolving physically, it stands to reason that we are also evolving towards a more peaceful and moral society. When Gene Roddenberry created the original Star Trekseries, he imagined a future where humankind was equal and peace had been achieved on earth. Despite the racial turmoil going on in America during the late 1960s, Star Trekdepicted an egalitarian future, where all the races lived in harmony and had overcome such petty squabbles as skin color or gender. The story was set in the future, but many of its themes and ideas were rooted in the strife and struggles of mid-century America. Again, the show was intended as a cautionary tale, but not one as dark and hopeless as 1984or Brave New World. Star Trekprovided a hopeful and optimistic future of where we are going, or at least, what we can aspire to.
The Next Generation
Finally, storytelling is a way to teach our children, and the generations that follow us. This essay has already touched on how storytelling is used to socialize people, and introduce them to various professions, demonstrate positive and negative relationships, and to explore our wide range of emotions. It’s important for children to learn these skills, in order to be effective communicators and productive members of society. Storytelling also serves to entertain children, while also educating them about the past and the present, and allows them to imagine a brighter future—one which they can shape firsthand. Stories manage to use morality tales and parables to teach children about the atrocities that have come before them, and can guide them to make better choices in the future. Storytelling serves to inspire and give meaning to our lives, and allows us to make sense of an often chaotic and random world. When we are young, storytelling helps contextualize our lives and create a narrative not only for our own lives, but of our society as a whole. When we are able to create narratives, we are able to attach meaning to what has happened to us, and we are able to make decisions about how we want the future to be. When we are able to recognize that bad things happened as a result of poor decisions, we can minimize future bad decisions, and can take proactive steps to better our lives and the lives of those around us. Storytelling functions as a cautionary tale, an inspirational and aspirational tool, an education lesson, an entertaining diversion, and an emotional investment in people who may or may not look like us. Children are exposed to cultures they may never have seen otherwise, and our planet becomes smaller and can celebrate its diversity, rather than fear what makes us different. Just as a tapestry is woven by threads of all colors, the stories we tell are populated by diverse characters who make up the world, and who each have their own story to tell. Stories inspire us, and give meaning to our lives, and are an essential ingredient in the human experience. Without stories, our lives would be barbaric, primitive, and utterly meaningless. We need stories to tell us about who we’ve been, who we are, and who we hope to be.
Conclusion
Shakespeare’s Hamlet once said that a society passes on its values and uses stories to “..hold a mirror up to nature” to show us our reflection, however hard it may be to look. Yet, it also shows us where we came from, and to where we are heading. Storytelling is how we make meaning out of the chaos of human existence. It provides a shape, so that our own lives have a beginning, middle, and an end, and we can feel like we’ve meant something, and left our mark on the world. If each one of us could tell a piece of our life story, than we have a narrative, and suddenly, we are the protagonists in our own life story. Yet, that is what storytellers are there for. They serve to tell their own stories, and the stories of each and every one of us. This is why we create stories, and this is why we NEED storytellers. They entertain AND educate us. They are what make us human, and not savage beasts of the wild.
Dear T,
I am moving to Boston in just over a week, and I just wanted to say a few parting words… Although we are still technically “friends” on Facebook, we never actually got close in person. I can’t help but think that that has something to do with the things you’ve heard about me. It’s true, I don’t have a good reputation in the theatre community in Bangor. I directed at Penobscot Theatre Company, and I fell out with J. I. and B. N., I acted for Ten Bucks Theatre Company, and I fell out with J. L. I was set to direct at the Center Theatre in Dover-Foxcroft, ended up hastily resigning, and alienating your good friend, A. B. I am not proud of my behavior, and it is just one of the many reasons why I am leaving Bangor and moving back to Boston – where I have a stellar reputation and am much respected in the theatre community. I don’t want to make excuses for my poor behavior, but I do want to put it in context.
We both suffer from Bipolar Disorder, but apparently your affliction does not cause you to have severe mood changes and sometimes be an ass hole. I have noticed you are a beloved member of the community, and everybody loves working with you. That’s terrific. Disagreeable and anti-social behavior is one of the many symptoms of Bipolar, but apparently you have been blessed not to suffer from that debilitating part of the disease. That’s a good thing. Unfortunately, I did suffer from that. DID is the operative word. The stories you’ve undoubtedly heard about me all come from 2011/2012/2013. These stories are over five years old! When those people knew me, I had just been diagnosed with Bipolar Disorder, and my meds weren’t adjusted correctly. I was on all the wrong medications, and I was grieving for the life I had lost. I was cycling between intense depression and mania. I also became addicted to Ritalin, and was snorting quite a bit of it. I was in and out of the emergency room, and I attempted to take my life on several occasions. And yet, I thought I could still do theatre. I couldn’t. I was miserable to be around. I was hardest on myself, but then incredibly hard on the people around me. I had unrealistic expectations of people, and inexplicably took my wrath out on them. I was not a pleasure to be around.
That being said, I can’t tell you the remarkable journey I’ve been on since then. I took a life-changing trip to Portugal, and came back a new man. I started working out, lost over 80 pounds, began to practice Yoga, delved headlong into my recovery/ therapy, took DBT/ mindfulness classes, started to eat healthy, and most importantly, got put on all the right meds, which balanced my moods and all but eradicated the mania and the depression. I quit Ritalin, and have been VERY healthy ever since. I rarely get depressed, and haven’t been manic in years! I am a very different person than I was five years ago.
Sadly, the theatre acquaintances we share can’t see that. They refuse to see that. I’ve tried apologizing on multiple occasions, but they refuse to hear it. They have unfriended and blocked me on Facebook. That’s fine. I understand that I didn’t treat them well, and I can understand why they’d reject me outright. Unfortunately, some people don’t believe in forgiveness and redemption. But I do. I believe in second chances.
My first suspicion that you may not like me was when you turned down my invitation to the Star Trek viewing party at my house. Ever since then, you haven’t once liked or commented on any of my posts, and I haven’t spoken to you in years. But I hoped that we could be friends. We are both actors. We are both writers. We both love Star Trek. We both have Bipolar. And we probably have many other things in common. I’ve found a publisher for my upcoming book, and I hope you’ll eventually read it. Although we’ll be separated by over two hundred miles, I hope you’ll consider truly being my friend. I am here to support you, and I want to be your friend. I just hope that you’ll come to your own conclusions about me, rather than rely on past impressions. Those days are thankfully over, and I look forward to having a second chance at life. I know that’s something you can get behind. I hope you can understand where I’m coming from. Sorry for the long message. I hope you are well.
I recently read the article, Saying Stephen Hawking Is “Free” From His Wheelchair Is Ableist published in Teen Vogue. Initially, I had very mixed feelings about this article. In theory, I understand the spirit of saying, “The fact of the matter is that Stephen did all of his amazing work with his disability — not in spite of it.” We shouldn’t try and erase someone’s disability, and it is certainly part of them. I fully understand the idea that Ableism makes people unnecessarily ashamed to have a disability, and we must embrace the whole person, not try and strip them of their disability. However, as someone who is ON disability and LIVES with a disability, I would also challenge most people who have disabilities to honestly ask themselves whether they would choose to have that disability. I have no doubt that Stephen Hawking embraced his disability, and was successful with it and not in spite of it, but if given the choice, I wonder if he would have chosen to stand up and walk out of that wheelchair at any given time.
I know I would not choose to live with debilitating mental illness. Obviously, I don’t like the sentiment that death is a noble escape from disability. That’s reductive and diminishing. Clearly, disabled people can achieve nearly anything an able-bodied person can. But there are great obstacles. Huge challenges. I think its disingenuous to assert that people with disabilities would PREFER to have been born with, or develop a disability. Let’s be honest with ourselves. And yes, I’m sure this post will come under fire, and some people may even assert that I don’t have a qualifying disability because I’m not in a wheelchair. Yet, I still qualify as disabled. Doesn’t that qualify me to speak on the subject?
In this increasingly fractured and divisive time of identity politics, I sometimes wonder if we take these movements too far. To say I’m disabled, and proud is great. You should be. But is saying, “I’m disabled, and proud” the same as saying, “I’m black, and proud?” There’s nothing innately broken, disabled, or wrong with being black. Yet society seems to suggest there is something wrong with being disabled. Granted, no one chose to be black, just as no one chose to be disabled. But in our society, being black should be life-affirming, proud, and wonderful. Obviously, we live in a society plagued by Institutional Racism, and being black is unfortunately a liability much of the time. We live in an inequitable age, where women, members of the LGBTQ+ community, and minorities still face unenviable challenges. Many of them would rightfully suggest that racism, bigotry, and discrimination is a prejudice not unlike being disabled. However, for those of us who can rationally analyze what it means to be any race (as much as any of us can, given our pre-conditioning and stubborn socialization), we would embrace the fact that there is no inferior race, and that we are all human and blessed with an ineffable beauty. The same can be said about gender and orientation. And yet, in many people’s eyes, being disabled is somehow a state of being “half-formed” or “broken.” How could we not feel that way? Why would we be spending billions of R&D money trying to fix us? Being disabled is a social justice issue, just like being black in America is, but it’s not exactly the same thing. It’s hard not to feel inferior when your disability is trying to be fixed. Sure, there are plenty of people trying to “fix” black people or trans people, but no one worth listening to. Those people are just right, just the way they are. And we want to say that disabled people are too, but it is challenging, when to be disabled also means something or someone in need of a fix. It’s hard to directly compare disability with other social justice issues. No one in their right mind would try to fix being a woman. Or being born black. (although many people have tried) Yet, every day, we try and fix being disabled.
If we are truly honest with ourselves, we must also acknowledge that few people – if given the choice – would actually choose to have their disability. That may not be true for all, but I would venture to guess that a good many of us would. At the same time, I also allow that this thinking might be considered “Institutional Ableism” and that I have been socialized to see disability as “lacking,” “inadequate,” or somehow “broken” or “incomplete.” I accept that. I suppose there is a certain degree of self-loathing when it comes to having a disability, and many of us with challenges are “blessed” with the ignominious defeat of shame coupled with low self-esteem. I don’t deny that. I know that I am plagued by shame and guilt. Much of this undoubtedly stems from my disability. (A challenge, I might add, that has undoubtedly been with me since adolescence, but only recently diagnosed.) Does this ingrained and internalized guilt and shame manifest itself in self-loathing ways? Undoubtedly. I have no doubt that society’s view of disability and being in some way “broken” has worked its way into my subconscious. Hell, it’s right there in my conscious mind. I know what it feels like to feel broken. To be half-formed. To be somehow incomplete. Am I part of the problem?
I’ve sometimes wondered if developing a disability late in life may be more challenging than being born with one. That’s not to say that it isn’t as difficult dealing with the challenges from birth. However, I wonder if those who were born with a disability, and have known no other life, have an easier time accepting themselves and their circumstances. I sometimes wonder if it’s like the famous saying, “Time + Tragedy = Comedy.” Does Time + Disability = Acceptance and Self Love? For those of us who developed these disabilities after having lived a life without them (or without being diagnosed with them), it may take getting used to, and there may be an extended period of denial and/or shame. And grief, at the lives we perceive we lost. I may very well fall into that category. Perhaps I haven’t fully embraced my disability, and I am still entrenched in shame. If I truly felt blessed with my disability, perhaps I wouldn’t be so quick to try and shed it or profess the desire to have been born without this debilitating disease. Maybe I wouldn’t naturally assume that those with disabilities would choose NOT to have them, if given the choice. If my disability has in fact shaped me – as has my intellect, my height, or any other characteristic I have no control over – than perhaps I shouldn’t see it as a deficit, but rather, a trait not unlike the others. It is inescapably and indivisibly a part of me, and my identity. Maybe I would choose it.
In truth, Ableism is the stigma that keeps us from talking about mental health or averting our eyes from those in wheelchairs. It is the proverbial albatross around society’s necks, and one thing that prevents us from talking honestly about the emotional toll our averted gazes, furtive glances, and hushed whispers truly betray. As a society, we must grapple with the paradox that as we try to find cures for diseases like ALS or Bipolar Disorder, we are not trying to unduly cure the person suffering from those diseases of being who they truly are. How do we separate the person from the disease? Or do we? Can we love the whole person, while simultaneously attempting to cure them or their “disorder?” Is it even proper to call it a disorder? If “order” is normal and preferable, than surely disorder is broken and in need of a mend. I suffer from Bipolar Disorder. Am I in need of order? Probably. But is my life broken beyond repair, or is my condition just one of the many traits that make me unique and unquestionably loveable? I don’t know the answer to that question. I would hope it’s the latter.
The point is, the words we choose do matter. My initial reaction to this article was wrong. I was wrong to have a knee-jerk reaction to someone insisting it was Ableist to imply Stephen Hawking might choose death over his disability. Perhaps he might have. Perhaps he wouldn’t have chosen his disability. But he had one, and he chose to live his life fully and in a meaningful way. Maybe none of us would choose our disabilities, but for reasons unknown, they chose us. We weren’t cursed or smote by God, but by genetics, heredity, fate, circumstance, randomness, or whatever else you want to call it. It happened to us without our control, and we can either wallow in shame, or embrace what we’ve been given. Should we reject ourselves because of this? No! Is it okay to wish we weren’t burdened with these diseases? Yes. It’s okay. It has to be. We didn’t choose this. But we can choose how we think about our disability. Maybe we wouldn’t choose the disability. But it must stop there. The words we choose to describe our disabilities matter. We must be careful not to assume that someone would choose death over a disability. Or even that they wouldn’t choose it. Maybe they would. After all, it has made them who they are. Those are strong people, and something I aspire to.
What I do know is that I have a difficult time accepting my disability in its entirety, and I would find it surprising if anyone who suffers from a disability truly – in their heart of hearts – would choose to suffer with their disability or live without the pain, inconvenience, and accompanying heartache that disability inevitably brings. Maybe they would. I long to be that person who is so comfortable in their skin, that even their perceived deficits are seen as unique advantages. Perhaps one day, I will accomplish all the things I hope to accomplish not in spite of my disability, but because of it. With it. With all of me.
The words we choose matter. To be disabled is not to be broken. Even if deep down, I still harbor those hateful thoughts about myself. Even as medicine and science tries to cure us of our disabilities, we must cure ourselves…from the inside out. We must learn to embrace our disabilities, and accept ourselves for who we are. Only then, perhaps, we will choose to stay in the chair. Or learn to walk on our own. Society must learn to see us WITH our disabilities, and not be so hasty to change who we are and what we represent. The stigma is real. And if we cannot love ourselves first, it’s hard to imagine how we can expect others to see us fully and embrace us wholly. It’s a reciprocal relationship, and society needs to change, while we need to embrace our disabilities.
Maybe Stephen Hawking would have chosen the chair. Maybe he wouldn’t. But it’s not for us to decide.
We still have a long way to go. Perhaps me more than anyone.
So my mom was just telling me about a man she knows who sometimes talks to her like she was stupid and says sexist things from time to time. I quickly responded that he was “mansplaining” to her. She had never heard that expression. I then proceeded to explain it to her, while also being hyper-aware and vigilant about not doing the very thing I was preaching against.
I realized that this kind of hyper-vigilance is exactly what we all need to practice every day and in every circumstance. No matter who we’re talking to – friend, family, or foe. It’s not about political correctness. It’s about basic human decency and respect. We should always be able to disagree, but it’s about how we do so.
I honestly think half the problems in this world aren’t necessarily caused by WHAT we say to each other and what we disagree about, but HOW we say it. How we talk to each other matters. It should be discourse built on an unspoken agreement of respect and civility. It’s about empathy.
The next time I talk to a woman, or a child, or a minority, or someone perhaps less formally educated- but no less intelligent, or ANYONE, I hope I remember what I learned today: words matter. Charity begins at home, and the way we talk to each other is the first step towards truly listening. And that’s where true compromise lies.
My name is Jon, and I live with mental illness. For over thirty years, I have worked as a professional actor, director, writer, and educator. I have taught high school, university, and adult education. As a writer, I write reviews, political essays, social commentary, and have been published on several websites. Despite my many accomplishments, five years ago – at the age of 35 – I was diagnosed with severe Bipolar I Disorder and ADHD, and it changed my life forever. Tonight, I am here to describe my journey into the abyss, but also to share my resilient story of hope and recovery, and how I am living proof that it is possible to live a purposeful and rewarding life while living with mental illness.
Five years ago, I was living in Chicago, and finishing up a Master of Fine Arts degree in Directing. During my three years of grad school, I had been arrested for DUI, faced jail time and thousands of dollars in fines, lost my driver’s license and totaled a new car, gone through a painful breakup, abused drugs and alcohol, and suffered the deaths of two close friends – one of whom had Schizophrenia, and took his own life. On top of all this, I was put on probation in my theatre department, and nearly kicked out of the program. Not because of my grades – I had a 4.0 and was at the top of my class. It was because I was having interpersonal conflicts, and couldn’t effectively collaborate with my peers. I didn’t know how to deal with stress, and was driven by an unrealistic need for perfection in myself and in those around me. I couldn’t handle rejection and criticism, and often lashed out in defensive ways.
In my final semester of grad school, I was working as an assistant director at a theatre in Chicago, with three very famous actors. I was living the dream. What I didn’t know then, was that I was also living with mental illness. Quickly, the pain and stress of those three long years began to catch up with me, and I suddenly had a complete psychotic break. And yet, I felt greater than I had in years. I was sleeping only about an hour a night, but I was accomplishing so much! I was more creative than I had ever been, and began writing books, plays, and keeping a daily journal –which I would scribble in all throughout the day. I thought I was the next Hemingway. I had delusions of grandeur, and pictured myself writing the next great American novel or a hit Broadway show! I was juggling dozens of creative projects, including painting, drawing, and sculpting, and had transformed an entire room in my apartment into an artist’s studio, where I furiously created art around the clock.
I also started spending all my money on frivolous things. In addition to creating art, I was also buying antiques and collectibles at a local thrift store, and selling them online at a business I had created for charity. Soon, I began working as a head chef at a local bar and grill, and somehow I imagined that I was on the verge of launching the next hit restaurant in Chicago.
But there was also a dark side. I was becoming increasingly erratic. I began to hallucinate and hear voices, and came to believe that I was the Son of God—sent here to save humanity. I let my hair and beard grow, and began walking through the streets of Chicago barefoot, giving sermons on street corners and preaching to prostitutes. I walked alone through some of the most dangerous neighborhoods in Chicago, and nearly got shot more than once.
When I wasn’t in the streets, I was preaching crazy ideas on Facebook, and no one had any idea what I was talking about. I was completely unstable, and began fighting with people on social media. I lost a lot of friends during that time. Many people thought that I was just being a terrible person, without realizing I was having a complete psychotic breakdown. The few friends and family I had left were worried about me, but for many, this was the first time they had ever seen someone in crisis, and didn’t know what to do. After several failed attempts to get me help in Chicago, my family finally flew me back to Maine to receive the treatment I needed. There’s no telling how much longer I would have survived in Chicago. By the time I left, I was convinced the CIA were watching me, and planning my assassination. I was a danger to myself.
Within three days of arriving in Bangor, I was at PCHC (Penobscot Community Health Center), and had seen a primary care doctor, therapist, and med manager. Before long, I was diagnosed with Bipolar I Disorder and ADHD, and put on several medications. I was also referred to the NAMI Bangor (National Alliance on Mental Illness) support group, and a Dialectical Behavioral Therapy class, to receive lessons in mindfulness and dealing with interpersonal conflict. All of this saved my life.
But make no mistake. I thought my life had ended. As scary as my time in Chicago might sound to you, for me, it was thrilling and exciting. Those three months of mania had been the most stimulating in my life, and I had never been so inspired or productive. I thought I was God, and now, here I was back in Maine, on disability, and living in my parents’ basement. All I wanted to do was die.
When I first got back, I attempted to teach and work in local theatre, but once again, I had serious conflicts with my colleagues, and gave up altogether. I became increasingly depressed, withdrew from friends and family, and rarely left the basement. I was overly medicated and could hardly function. I used to be a passionate and articulate person, but now here I was, drooling and could hardly feel a thing. I became suicidal, and made several attempts on my life.
For ADHD, I was put on Ritalin, and before long, I was snorting it for the high. It was the only time I felt creative and alive—like I had felt in Chicago. I was snorting an entire month’s supply in a week, which would make me manic, and not allow me to sleep for six or seven days at a time. My life was spiraling out of control, and I prayed every day that it would just end.
And it nearly did.
But about a year and a half ago, everything changed.
I was addicted to Ritalin, had gained nearly 80 pounds, and had been rushed to the emergency room several times. I finally said to myself: “You gotta get busy living, or get busy dying.” I realized I was trying to kill myself slowly, and things had to change. I decided to get busy living. But I needed to find purpose again. I had been on disability for over three years, and knew I couldn’t work. Yet, all my life, my work in theatre and education had given me all the purpose I needed. After all, I had sacrificed nearly everything—including a wife and kids—for my career. For the first time in over thirty years, I could no longer work, and had to find a new purpose for living. Before I could even get healthy, I needed a reason to get out of bed in the morning. I needed to find something I loved again. One semester during college, I had lived in a castle in the Netherlands, and had traveled all throughout Europe. However, I had never made it to Portugal—the country where my family came from. I decided that whatever it took, I was going to take a trip there.
You have to understand that I hadn’t been on a plane in four years, and was absolutely terrified. I have claustrophobia and severe social anxiety, and I was worried about trying to navigate language, culture, and transportation in a foreign country. I was concerned about breaking from my routine, and becoming disoriented in a strange and unfamiliar place. Every day, I went back and forth between thrilling excitement and absolute crippling terror.
In order to ensure that I was safe and had a good time, I knew that I had to plan this trip very carefully. I spent hours each day pouring over maps, watching travel videos, reading books, researching the culture, and carefully constructing a detailed travel itinerary. By the time I arrived in Lisbon, I knew that city like the back of my hand, and didn’t even need a map to find my way around. My trip was a resounding success! I had no problem with the flights, communicating, or staying on schedule. You see, despite the limitations of my disease, I had managed to turn an unfamiliar place INTO a familiar place, and Portugal became like a second home. Living with mental illness doesn’t mean you have to stop living, it just means you have to plan better!
When I came back from Portugal, I was a new man. I had a renewed sense of purpose, and a feeling of accomplishment. For years, I had been crippled by insecurity and low self-esteem, but after my trip, I had nothing but confidence.
The first thing I did was quit Ritalin. Next, I renewed my gym membership, and started swimming and working out 3-4 times a week. I changed my diet, and lost over 40 pounds. I worked with my doctors to get me off the more sedating medications, and found just the right combination of meds. I started walking several miles each day. And after years of being told I should volunteer, I finally did. Within weeks of my return, I began volunteering for NAMI Bangor, where I currently serve as a Media and PR Assistant, and help the President—Betsy—with outreach and advertising for all our NAMI events—including this one. I enrolled in a training program at Literacy Volunteers of Bangor, and now tutor and mentor adult literacy students, as well as work with children reading and distributing books. As a tutor, I spend hours each week creating lesson plans and instructing adult literacy students.
I also researched and learned as much as I could about Bipolar, and soon realized that having a daily schedule and routine was vital for my survival. I started planning my days, and keeping a strict calendar. Every morning, I wake up at 6 am, do yoga, make coffee, drink a smoothie, and listen to NPR. I work out, relax in the sauna, swim, eat healthy, and attend weekly NAMI meetings and weekly therapy sessions. I devote a few hours to reading and writing, and a couple hours to watching tv. I craft lesson plans, teach students, coordinate NAMI business, and volunteer on political campaigns. The point is…I stay busy. I finally got out of that basement.
I can’t tell you how much NAMI has meant to me as an organization. It literally saved my life. In group, I talk with other people suffering from mental illness, learn coping skills, get advice, and have access to helpful resources. I’ve made deep and lasting friendships, and found fellowship with others who have been where I’ve been. After years of trying to convince my parents to attend a family meeting, they finally did last month, and they loved it. It allowed them to talk with other parents, and get a little bit of perspective about me and my disease. They were finally able to vent, and to grieve, and to seek the advice of others who knew the pain of having to care for a loved one. They are now committed to attending every month, and I’m happy to say that they are here with us tonight.
Recently, I switched to a new therapist, and I’ve made more progress in two short months than I had in over four years! I cannot express how important it is to find a good therapist, and I would recommend it for everyone, whether you suffer from mental illness or not. There is something deeply profound and therapeutic about taking to someone who knows what they are doing. If you’re interested, NAMI can help you find the services you’re looking for.
I’ve also decided to move back to Boston, and return to work again. Over the next year, I plan on applying for college teaching jobs and to start directing again. However, I will never stop volunteering. It gives my life purpose.
I want to say that despite the fact that I have made significant steps in my recovery, I still have bad days. Even bad weeks. In fact, these last few weeks have been tough for me. Every so often, I go through a brief, but deep depression. There are times when I still have fleeting thoughts of suicide. When I don’t get enough sleep, I am always at risk of becoming manic. It’s important to understand that there is no cure for mental illness. Only management. Those of us in recovery are each on our own path to wellness, and realistically, that means times of dizzying success, and times of great struggle. There are relapses and stumbles along the road, and there are times when I honestly don’t know if I’m gonna make it. There is no silver bullet for mental illness, and it’s something I will live with for the rest of my life. I will always be susceptible to the darkness. However, it is treatable, and with planning and vigilance, it is possible to lead a healthy and productive life. It takes work. A LOT of work. But as they say in AA, it works, if you work it.
Since being diagnosed, it has taken a lot of courage for me to admit that I live with mental illness. At first, I was scared and ashamed, and didn’t tell anyone. Over the years, I’ve slowly “come out” to friends and family, and three months ago, I revealed my illness on Facebook, where I’ve received nothing but love and support. Tonight is the first time I have ever publicly spoken about my disease. But it won’t be my last. It’s time we end the stigma of mental illness, and I am personally committed to a life of advocacy. Most people had no idea that I was suffering in silence. And that’s the point. That’s why I’m here tonight. And that’s why I will continue to speak all over the state and the nation, to small groups and large, to community organizations and in front of legislators who have the power to fund mental health care and reform our broken system.
But I’m also here to ask for YOUR help. If you’re afflicted with mental illness, I encourage you to seek therapy, and perhaps attend a NAMI support group. If you suffer in silence, as I once did, I would ask you to consider being open and honest about your condition, and living out loud and proud. It’s not easy. There is still much work to be done. But the more of us who come forward with our stories, the more people will realize how common mental illness truly is, and the easier it will become to accept. The more we normalize mental illness, the closer we get to treating it as you would any other disease of the body. Like every great social justice issue, SILENCE IS DEADLY, and we have lost too many people to mental illness. Every day, in this country, we lose 22 veterans to suicide and undiagnosed PTSD. Over 40,00 people take their own lives every year in this country. For those of you who have friends and family who suffer—and I guarantee you do—I would ask that you educate yourself about their disease, and look for ways that you can advocate for all of us. This is an epidemic, and we need your voice and support. It starts as small as offering aid to a friend in crisis, but it doesn’t have to end there. We here at NAMI have several resources to help, and I encourage you to seek us out. You’ve already made the first step in coming here, and I thank you for listening to my story.
Sixteen years ago this month, I moved to Pittsburgh, Pennsylvania, and it changed the course of my life.
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