“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.
I've been a faithful blogger for a few years. What started as a slightly misguided attempt to sell Sci Fi T-Shirts on CafePress morphed into a stable of four blogs each one holding a special place in my heart.
The one I am most proud of however, is CrohnsDiseaseRelief.com. I treasure the comments and emails I receive from readers. People have actually thanked me and said that reading my blog helped them cope with IBD. My story of living with a chronic illness for years without knowing what it was, to becoming seriously ill and therefore diagnosed, is something I am really proud of.
So why I am so excited about the Chronic Bitches of Ravelry's new blog? In all the time I've been writing and posting, this is the first group project I have worked on. The ladies and gentlemen of the CB group on Ravelry have regaled me with complaints, tips, irreverence, and I feel like we are on a journey together. Fighting migraines, pains, getting meds refilled, even getting out of the house some days are adventures with this group. These fiberistas keep on truckin' - knitting, crocheting, and making art out of the chaos.
I tend to be a little shy and I am by no means the most prolific poster in the group. But I am very glad to have the chance to work on "Like You're Listening." Thank you.
A walking stick works well for those of us who have problems walking all day, but that does not take into account people who require a little more assistance. You are probably well accustomed to thinking outside the box already, but here are some ideas. It may well be worth inquiring ahead of time about spaces for the handicapped. (I do not know if this is an option, seeing as I just develop a limp over the course of a day as opposed to using a wheelchair). The site may or may not be wheelchair-friendly, so you may want to ask about that as well. You might want to design your garb around your mobility. For example, a long, heavy wool houppeland might get caught in your wheels. While long and flowy might be accurate, you might do best if you cut them a little slimmer. Camp as close to the main green as possible. If you can camp on it, then you don’t have to lug (or have someone lug) a chair around to the various demos, classes, and general gatherings. However, my understanding is that most events require you to have a mostly period campsite to camp on the green proper: canvas instead of nylon, cookfires instead of Colemans, duct tape kept to a minimum, etc. Decorate your hardware. I’m not saying that you have to hide your aid, but maybe it would like some garb, too. I have seen walkers done up like May poles and, for the truly ambitious, motorized wheelchairs dressed to resemble horses. They generally came out looking more like hobby horses, but it was fun nonetheless. I know of one fighter who uses a chair. I teased, asking if she jousted. In order to even learn, she had to overcome two-pronged discrimination: sexism and ableism. She said that when she had finally found someone who was willing to work with her, he had suggested that option in all seriousness. If you are reading this blog on any sort of regular basis, you can understand that a jousting is not suitable for someone using a chair. Instead of asking her some questions and learning more about her abilities, he had made an assumption. He did come to understand, and, I believe, she ended up with a short sword. And when in doubt, sucker some big, strong handsome fighters to tote you around in a sudan chair. Bonus points if you have an Eastern persona.
My latest blog post addresses Functional Movement Disorder and Conversion Disorder from both a personal and a more impersonal perspective. I've especially outlined some of the issues with Conversion as a general diagnostic category and the problems with directly equating it with FMD.
The comments are interesting - someone has already asked about rates of diagnosis by gender, which adds another wrinkle to a complex, confusing, and controversial issue.
Come join the conversation if you like!
Outdoor events in the Society for Creative Anachronism are the only way to go. However, not all of us are young, drunken idiots who could pass out under a bush and wake up bright-eyed and bush-tailed the next afternoon. Here are some tips on how to survive a weekend in the great outdoors... unless you're a heavy fighter, then there is no hope for you.
1. Consider an RV
Pros: I know someone who uses a camper to keep his insulin refrigerated. It's a bit more comfort if you have chronic pain, and warmer if you have temperature control issues.
Cons: You might get some looks or snide remarks. To minimize this and have a little fun, you can convert it into a gypsy wagon if you have the skills and spoons.
2. Air mattress
Pros: If you have anything from minor aches and pains to chronic pain issues you will want an air mattress. You will stay much warmer, especially if it rains.
Cons: Do not forget the air pump and extra batteries. Bring duct tape and minimize the possibility of holes. There will eventually be holes.
3. Pill case
Pros: If you lose it you won't lose your entire supply. Keeps them dry. You are more likely to keep it in your purse (yes, even men had purses back then) or basket so you can remember to take it.
Cons: You are either out a couple of bucks or, if you're only taking one or two medications, you can use an old pill bottle with the label peeled off.
4. Bring and Drink Plenty of Water
Pros: Avoid heatstroke and dehydration, both of which are dangerous in and of themselves without other medical problems on top.
Pros: If you plan a balanced diet you will be less likely to gain weight, have more energy, and less likely to have otter problems. Plan for light meals throughout the day rather than three heavy meals, which can make you sluggish and drain your energy.
Cons: You might envy your neighbour who only brought sausage, cheese, and lots of alcohol now, but you won't when it catches up with him.
6. Don't Get Hammered
Pros: Less likely to trigger depression, get dehydrated, or complicate your medications. You will be more likely to remember to take your medications on time and maintain your normal sleep cycles.
Cons: You won't be pissing off the entire encampment with your impromptu roving Bardic circle at 3 a.m.... Wait, remind me how that's a con?
Pros: That drunken roving Bardic won't wake you up in the middle of the night. Or that guy who likes to blow his conch at dawn.
Cons: They might be hard to sleep in if you are unaccustomed to them.
8. Walking Stick
Pros: You will end up doing more walking than you originally intended and a walking stick will definitely help, doubly so if you have any mobility issues. Can double as a weapon for drunken idiots who think they lurve you.
Cons: If you are extremely klutzy it might prove more of a hindrance with long skirts. Don't ask me how I know this.
9. Sturdy Shoes
Pros: Again, lots of walking. Take care of your feet.
Cons: What works best for your feet might not be considered "period." Who cares? Your feet are more important.
10. Camp in Groups
Pros: Chores can be divided. If you can't unload the car, you can set up and organize camp. You can cook and have someone else haul your camp chair around for you. They can remind you to eat or take your meds if necessary, and in turn you might keep them from sleeping with that fugly idiot three sites down.
Cons: Unless you're camping with random strangers, you will be a better judge of any problems that might arise.
11. Bring a Chair
Pros: You will have a comfortable place to rest, especially if you bring a pillow or two. If not then the hard ground is pretty much your only option. Those pillows might help for a bit, but everything will be complaining after one afternoon.
Cons: Unless you have a director's chair, it's unlikely to be period, but a blanket can help disguise it as well as providing extra warmth. You will have to haul it around, unless you work something out with a campmate.
12. Keep Your Schedule
Pros: Your sleep cycle will be maintained, usually meaning less insomnia or hypersomnia. You'll be less off-balance when you return to the modern world. Although if you've been meaning to change your schedule events can be a good time to change it.
Cons: You won't be in a drunken roving Bardic at... Aw, never mind.
13. Stay Warm
Pros: A hot water bottle, heating up a rock, or a partner to take to bed with you will help.
Cons: You may experience burning or possible sexual side effects.
In short, try to keep things as similar to your home environment as possible.