Sunday, January 23, 2011

Disability, A Hero's Journey

“A hero ventures forth from the world of common day into a region of supernatural wonder: fabulous forces are there encountered and a decisive victory is won: the hero comes back from this mysterious adventure with the power to bestow boons on his fellow man.” Joseph Campbell, The Hero with a Thousand Faces

Whether you give credence to Joseph Campbell’s description of the stages of the Hero’s Journey in The Hero with a Thousand Faces or the universality of these stages throughout mythology is, I think, beside the point when you look at any individual’s life. Life is tough, life is unfair, and each individual must face numerous challenges simply to stay alive. To me, each life’s journey is epic, sacred in its own way and so the phrase Hero’s Journey is in itself is a powerful descriptor for the trek that each of us must take. Seeing the scope of one’s life as a hero’s journey, relative to Campbell’s original stages or not, can be useful for identifying themes and avenues for personal growth.

Although I mean to speak about the hero’s journey generally, some of Campbell’s stages make useful jumping off points for future discussion. In Campbell’s version, the hero’s journey begins with departure--the call to adventure, refusal of the call, supernatural aid, the crossing of the first threshold, the belly of the whale--, continues with initiation--the road of trials, the meeting with the Goddess, woman as temptress, atonement with the father, apotheosis, the ultimate boon--, and culminates in the return--refusal of the return, the magic flight, rescue from without, the crossing of the return threshold, master of two worlds, and freedom to live. Another way to look at the hero’s journey is to see it as an ongoing invitation to birth, death, and rebirth.

Birth itself can be seen as the call to adventure in each person’s life; it’s a call that will be repeated throughout life. We are called time and time again throughout life to stretch beyond the known, endure uncertainty, take risks, and be reborn, becoming more fully who we were meant to be. We can choose to answer the call or not, we can drag our feet into the future, go kicking and screaming and demanding that life be less tough, more fair (two of my favored modes), or we can say yes to our universe and all that unfolds.

We can say yes to our experiences whether bidden or rained down upon us, and live life with perhaps a sacred mixture of trepidation and excitement. The question for me has become: how do I get to the point of continually saying yes to my universe? More than anything, this is what I think of when I think of the hero’s journey.

Disability is a particularly hard nut to crack when it comes to saying “YES” to the call of this particular adventure. It’s not like we get much choice in the matter. Still, most of us attempt to refuse the call (I did), going through various periods of denial and engendering greater obstacles as a result. Who wouldn’t? What human alive gladly opens its arms to disability?

Disability is a form of death in and of itself. We don’t die onto ourselves as much as disability ends the life we once knew. Similar to the way tragedies like the untimely death of a significant other in a movie provides a protagonist with an unwelcome adventure. Death beckons rebirth.

While total disability from chronic, debilitating illness or permanent debilitating physical injury can be compared to temporary disability, whether from illness (e.g., cancer) or accident (e.g., loss of a limb), temporary disability results in an opportunity for a return to life out in the world at large. A different life, a life made different by disability, but life out in the world nevertheless... the temporarily disabled are reborn to themselves and the world.

The rest of the world seems to tend to see disability like that: the hero, faced with daunting circumstances, overcomes them, and returns to the world, inspiring normals to put their own life challenges into perspective. Sometimes I think the subtext or the flip side to this hero’s journey is: you’ve failed if you don’t return to the world. It’s not a real hero’s journey at all without a return to the land of the normals. Instead, it seems to be an unattractive blemish on other people’s dream of what life is, or as failure somehow.

The challenge for a person totally disabled by a chronic, debilitating illness or injury is how to be reborn while living what some might consider a living death. Those of us who are disabled have heard others say that if they were disabled--meaning if they had no hope of returning to the land of the normals--they’d kill themselves. They may not know why exactly they fear it; indeed, they may think they fear disability because they sense that they would not be able to handle not being able to do what they once could. While that is a mighty challenge that the those of us who are chronically, debilitatingly ill must face, there’s more to fear than that.

Given the treatment that some of us, perhaps many of us, receive after becoming disabled, relatively healthy people have a good reason to fear disability. Not only have we died in some respect to the world at large, people in the land of the normal often act like we have died. The discomfort of most normals with us and our crumpled lives is palpable (and their pity unpalatable). We remind them of their mortality, the fragility of their experience, the uncertainty inherent in life. We are often abandoned. We have twice the divorce rate of the non-disabled and not because we are somehow twice as unlovable. Normals don’t so much as rally for our fight or plight, as they might with the temporarily disabled, as peter out of our lives.

Even when we are not abandoned, we are often denied an essential aspect of what it means to be human: telling our story, telling our own hero’s journey. There’s a general proscription about talking about health, physical challenges, and death. Yet, each of us is on a fantastic journey, a scary, hairy, joyful, demanding, and often life giving journey.

Meanwhile, our friends and family recount their challenges, their failures, their successes, the emotional roller coaster that is part of life, part of the hero’s journey. We hear about the machinations of their co-workers, the near escapes on the highway, the struggles with their teenagers, the sometimes grim reality of marriage, their hopes, their dreams, their dashed hopes, their broken dreams. We get to experience their indomitable spirit.

We are often asked to pretend to feel well, to have nothing to add to the conversation if what we have to add has anything to do with the biggest challenge we might be facing if that challenge is related to the struggle to live despite our chronic illness. We are asked to hide our hero’s journey, our indomitable spirit, under a bushel basket because our journey lacks validity. Indeed, being an invalid is about being In-valid in the land of the normal.

The message we get is that our journey has nothing to do with “life.” When, in fact, it does. Our hero’s journey has everything to do with life.

Facing one’s mortality is one of life’s biggest challenges. Chronic, debilitating illness is a challenge we can’t run and hide from, can’t busy ourselves out of. The pain and suffering we endure to meet our daily needs makes us look prematurely at the end of life no matter how skilled at denial we were pre-disability.

As fortune would have it, we live in the magical time of the Internet. Life calls us. Life calls us to live while facing our mortality. Others like ourselves beckon us back into the realm of the living electronically and from the far flung corners of the earth, reminding us of our value, reminding us of the sacredness of our journey, and challenging us to live our lives as fully and as out loud as we possibly can. To bloom where we are planted.

Accepting how the land of the normal views disability has perhaps opened up the biggest avenue of personal growth for me. Disability, however much I dislike it, has provided me with an opportunity, a life lesson, that no life experience had previously offered. A much needed life lesson, a balancing of a world view that was dominated by “sunshine, lollipops and rainbows, everything that’s wonderful....” Not that everything was wonderful. :P However, that world view was a defense mechanism of mine that had outgrown its usefulness even if as I continued to rely upon it to my detriment.

Campbell said it best when he wrote,

"The crux of the curious difficulty lies in the fact that our conscious views of what life ought to be seldom correspond to what life really is. Generally we refuse to admit within ourselves, or within our friends, the fullness of that pushing, self-protective, malodorous, carnivorous, lecherous fever which is the very nature of the organic cell. Rather, we tend to perfume, whitewash, and reinterpret; meanwhile imagining that all the flies in the ointment, all the hairs in the soup, are the faults of some unpleasant someone else. But when it suddenly dawns on us, or is forced to our attention that everything we think or do is necessarily tainted with the odor of the flesh, then, not uncommonly, there is experienced a moment of revulsion: life, the acts of life... become intolerable to the pure, the pure, pure soul. The seeker of the life beyond life must press beyond... and soar to the immaculate ether beyond."

In life pre-total disability, I had prematurely soared to the immaculate ether beyond without first admitting the fulness of life. Now my test, my real challenge, is to achieve balance between the spiritual and the material, to become competent in the inner AND outer worlds while seeing the world for what it really is and not what I would like it to be. To return to live and thrive in the life that I have now, with greater balance than I had before.

Without disability, I wonder how long it would have taken me to stumble upon this little corner of enlightenment.

1 comment:

  1. That... is an incredible first contribution. It is an honor to have you among the authors of this blog, Claire.