The Author

Yesterday, we held our annual children’s literature conference at St. Thomas. I love hearing the authors speak in their own voices. Each approaches writing with such different ideas that I don’t think I could ever tire of hearing from them. Today, I am still filled with the inspired imagination of this year’s two guest authors. Christopher Paul Curtis writes Flint, Michigan into stories of childhood punctuated with assembly line sounds of the rust-belt auto industry and a little big band jazz to keep it honest. Linda Sue Park undulates between the lilt of her parent’s Korea, and the careful steps of a girl that carries water from watering hole to village, eight hours each day in the Sudan. She has that uncanny ability to take a single object, event, idea, and see a whole story spring to life around it. And even their presentations yesterday illustrated the many ways to author a story. Curtis jammed on memories of his mother, alternately reading and dancing the parts as each character delivered lines that made you laugh and cry. Park read carefully crafted sentences, specifically designed to move the mind toward examination of assumptions about how we represent life to our kids. I am not trying to get you to go out and buy their books, although you would not be disappointed with their writing. Like all great writers, they move you to imagine beyond what you already know into a stretched reality that accommodates what you might never have constructed on your own.

With that in mind, as I listened to both these authors speak, I had the strange out of body experience of a different reality, an experience that has come so often in my dis ease journey. Suddenly, it seemed to me that I was not so much an author but authored, not an inscriber but an inscription. Dis Ease is the supreme writer of my life. It has scribed my plot line, given me the characteristics to negotiate the twists and turns of this ALS story, and left me to wonder not so much about the ending, but how I am going to get there. As Mr. Curtis and Ms. Park spoke, the epiphany of my own illiteracy in all things dis ease, and the catch up I feel I am always playing with the crazy roller coaster of my author’s plotline was suddenly obvious to me, and I was both comforted and afraid. I can imagine how this sounds to you—a little nuts, a little too literary, but hear me out. Life-authorship is not that radical an idea.

I have numerous friends who believe that their lives are already written, ordained by God, and that their ultimate responsibility is to stay the path predestined for them by some power greater than themselves. And this isn’t just the Calvinists I know and love. Many in this world believe that the lives they are living now are the result of the lives they lived before, that their current circumstances are the direct result of the life decisions they made in earlier lives. Even those who deny such supranormal controls, atheists and agnostics, still wrestle with deterministic variables in their own spheres of influence. They recognize such determinants as quality of education, poverty, and privilege as authors of the lives of young people, either lifting them up or dooming them to cycles of failure. Each of these phenomena represent a life author, with set plotlines and characters that are almost caricatures of stories long played out. And the greatest fiction – nonfiction tension that they write is that we each control our own destiny. That is where Dis Ease trumps all.

Dis Ease levels all stories so that the only one left standing is the human one, broken or lifted up, by the experience of dis ease. And it is here that I find myself absolutely amazed by my author. She has written my life as if the person I was never existed, and then given me the choice to embrace or reject what I thought I knew. Dis Ease makes it so easy to just give up, to throw up my hands and deny the lessons I thought I was learning when I didn’t discern the author(ship) or author(ity) of Dis Ease. It would be so simple a thing to allow the roaring, unconscious, almost debilitating knowledge of journey’s paths and journey’s end to dictate an unthinking, even panicked response to this horror story visited upon each occupant of this human plane by Dis Ease, the writer of our destinies. And I see it—

If you believe that you will never have enough, Dis Ease is your author. If you believe that real love is always just out of reach and can only be gained by tossing over those for whom love was professed in favor of some idealized lover, Dis Ease is your author. When death steals away the presence of half your soul so that you think the only thing you can do is grasp the remnants of your previous life so tightly that they can only feign living in your presence, Dis Ease is your author. When bodily breakdown frightens you into hiding from your future travails and denying your past capacities, Dis Ease is your author.

I know this author well, for he is present when fear translates into the scraping, caustic, cynical experience of believing that there is nothing better than this. He imagines souls that feed more on prisons and walls and despair, than schools and parkways and hope. Dis Ease is this author.

The temptation is to forget the stories that have always been our center, to believe Dis Ease, that they do not matter anymore and are irrelevant to the souls we are to become. What a flinty, brittle existence it is, to buy Dis Ease’s plots. In that dark space, one’s humanity is always in some inhumane battle, mostly with one’s self, as Dis Ease hovers round pulling this string and that, like the great puppet master it professes to be. And it is tempting—you get to give up responsibility, hope, joy, kindness, human engagement. Just blame it on the author. Blame it on Dis Ease. I get that temptation, but the author doesn’t always get the last call.

Many times, when authors speak about their books, they talk about characters that, to their surprise, take sudden twists and turns that were not planned. Indeed, the best books I know are the ones where the author is almost shoved out of the way because her “creations” have not behaved as she intended. And that is more than a good story, it is great literature. When I want to meet that character, experience that event, know that snippet of knowledge, understand that concept so deeply that it has now become a part of me, then I know that the author’s work is not so much about predetermination, but rather about choices offered. And that is where Dis Ease, so overwhelming, so all consuming, so omnipotent, can seem to forget that his characters can still make the choices that determine the real story. Dis Ease presents the logic of despair, but he cannot write out of the story the choice of human grace, the choice of love over fear. As characters in this great novel, we may need a little help in pushing back, and we will have to find the strength to reach out to each other for support, but we can take the story away from our author. We can choose to live until we die.

How do I know this?

I’m just now reading it in the book, and as always, it’s much better than the movie.

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The Impostor Version 2.0

You probably noticed that this entry is called “The Imposter 2.0.” “Version One” was just a little too raw to share with the world. I was afraid that if you read it, you’d call my building and have them lock the doors to the 28th floor balconies outside our apartment. I don’t know what it was, but by last Sunday I was working on a major meltdown. Probably, I was over-tired, and ALS is not something you tough through with a little more caffeine. When I need rest, I need rest. I also was hyper-aware that the next day I’d be traipsing down to Mayo. When it comes to anticipating a visit to the Mayo Clinic, you would think that this would not bring on anxiety. The folks at the clinic are so warm, so supportive, so competent. But each quarterly visit is not just a time with great professionals. It is also a measurement of what is lost and what remains, and I don’t look forward to documenting my losses. So I wrote “The Imposter Version One” in a very tired state and anxious about the coming day. Why call it “The Imposter?” I think it was because no matter how hard I tried, I just couldn’t muster the grace or live-in-the-now mind frame that I have advocated over the past year of this dis ease journey. And I felt like a fake, a fraud, a ridiculous parody of some overly sappy life lessons now learned—in short, an impostor.

I first learned of impostor syndrome in my early days as an assistant professor when I was given an article penned by my esteemed colleague Stephen Brookfield. It was a piece of his on adult learning–I don’t remember the exact topic–but I do remember his discussion of the idea of imposter syndrome. Basically, imposter syndrome is a phenomenon of adulthood. As adults, we are expected to be competent, yet through the course of our normal lifetime, through our careers, our families, the social events that we attend, and especially in our introduction to new situations, we are sure to be put into circumstances that are quite unfamiliar. And because we are adults, we know how woefully unprepared we are for these new settings! Overlaid upon the anxiety of not knowing what to do is the realization that we are actually expected to know what to do, because well, we are adults. This leads us to feel like we are imposters, dressed in a paper costume meant to project competence but thinly disguising the feelings of incompetence that we hold. And we worry that others will find out just how incompetent we really are.

I think about that article often. Imposter syndrome sums up numerous occasions from my past, and it helps me to name the fears that I hold for such anticipated situations where I’m not sure I’ll have the requisite skills. And while naming something is not solving it, it does at the very least take away the power ignorance holds when such times present themselves. With a name for the fear, I can acknowledge when I feel like an imposter as I move into new spaces, and with that acknowledgment, find the courage to share the burdens of the moment with others who occupy the same. My experience is that many others feel the same way that I do, that I am not alone in my own little imposter syndrome. I have learned to recognize coping strategies, both functional and dysfunctional, and while acknowledging one’s limited sphere of control and lack of experience is healthy, I have also seen people totally overwhelmed by their own feelings of fraudulence. The consequences are serious–self-medication, avoidance, repetition of the same situation in a different context, bad marriages, bad relationships, bad commitments–I’ve witnessed all of these dysfunctional attempts to remove the feelings of being an impostor. So last week in an effort to move beyond impostor syndrome, I recognized my own fakery and wrote it.

I thought that by acknowledging my own dis eased imposter syndrome, I would be able to find an appropriate and healthy outlet for my anxiety. And it helped, but not quite in a way that I would want you to read.

As I wrote I kept waiting for the imposter feeling to stabilize, to allow me the space where I have things figured out, mostly. But on that day, the space was not to be found. And I realize now, that expecting to be in the moment one hundred percent of the time is unrealistic. That just isn’t how ALS works. My ALS brother, Dudley Clendenin, calls ALS “Lou,” and if I were to do the same, I would believe that Lou has a death wish. He doesn’t seem to know that if we keep going down this road, it ends as all parasitic relationships end, with the death of the host. But Lou is no imposter. And he is no friend. He doesn’t really seem to care that this road, with its multiple alleys and corners and long, scary corridors that seem to lead to less and less function, more and more fatigue, and certitude about endings that no one seems to want to acknowledge excepting vagaries of the final cadence, is a one-way street. And finding the space to handle this overwhelming reality was suddenly an exercise in futility.

Oh, and what I wrote, made Ev cry.

This week, I stumbled on the little song, “I never thought I’d live to be a million,” by the orchestrated, neo-aged, 60’s rock band The Moody Blues. I admit, I always thought I would live a life where I was in control of the physical body that I was given. I thought I’d be active, in-shape, highly functional, right up to the day when, because there was just no more left in the coffers, I’d die racing semis on I 94 riding a titanium frame bike in my early 90’s. Such romanticism has no place in a reality constructed around dis ease. “I never thought I’d get to be a million, I never thought I’d get to be the thing that all these other children see, Look at me…”

So I melted down, and that is the way it had to be. I just couldn’t handle the impostor that I was. There was no grace, no quiet breath, no sense of the moment, only despair and the crap that makes the progress of ALS so very, very hard to take. And I wrote it, and Ev cried, and I decided not to put it up on the blog, and I cried, and then, I decided to quit, and with that, I’ll share a bit of what I wrote:

OK, I’m going to do that thing now that has worked for me in the past. I’m going to take a deep breath, exhale and acknowledge that indeed, this is a learning situation, and I cannot be expected to come to it with anything except my impostor identity and a tiny kernel of hope that I might discern the skills necessary to meet it and consequently, to put those feelings of being an impostor aside. I’m going to remember that with each loss is a gain. I’m going to see the gifts again, and I’m going to accept it all for what it is–just life as it goes. There are no impostors, just people doing the best they can, and in the end, all of us will find ourselves inadequate to the challenge.

The truth is if you aren’t pushed to your limits by all this living, you are probably unconscious. I still look up and wonder how things got to be this way. I don’t know, but if I just focus on the things that really matter–the love of my true love, the joy of my sons, the wonder of the women with whom they have hitched their lives, the friends who give me a hug and a smile, the naughtiness of my blue kitten–there, there is the thing I was looking for–back to the center. Breathe. Sing. Feel. And it is better.

So long Lou, you big impostor!

Walking the Walk

It is Saturday, my recovery day, and I’ve been thinking a lot about walking. I dream walking. On Saturday, I page through old picture albums, subconsciously seeking evidence that I was once an able-bodied walker. There is a certain enjoyment in old pictures—the kids, Ev, all the places we have lived. But there is also danger, because it focuses the despair that being tired brings. It seems like such a little thing—walking—yet I cannot think of anything that symbolizes my bodily regression more than losing my ability to walk. Walking means a lot more to us humans than traversing from one place to another. Upright walking is one of our core conditions, so it is little wonder that in the quiet of a recovery day, I focus on a lost activity of another existence.

If you get evolution, then you know that walking is as important to human development as the opposable thumb. When humans stood on their hind legs, they were suddenly able to look farther out across the savannah, negating the distinct advantages of stronger, larger animals with keener senses. With walking, we could see the enemy, drive prey, take shelter from storms, increase our rate of survival. With upright walking we could develop a cooperative kind of speed to run down animals far bigger and faster than us, taking turns until our prey was exhausted. Walking is one of the big evolutionary developments, but its importance doesn’t stop there.

Walking defines a whole section of the human lexicon. Biblically, we talk about “walking the lonesome valley,” or “walking two miles when asked to walk one.” We talk about walking in someone’s shoes as definitive of understanding another person’s point of view, or we suggest that the longest journey begins with just one step. We use walking to define development. If a baby doesn’t walk in the sweet spot of two standard deviations from the mean walking time, we worry that something is wrong with her, that she might be developmentally delayed. We might even talk about her later with her teachers, on some totally different topic of concern, and drop in the information—“Well, she was a late walker.” We pay attention to walking until we can walk, and then we treat it like it isn’t anything special.

There is a different perspective on walking when you are in a wheelchair. On any given day, I find myself examining the walks of my fellow humans, trying to place myself in their shoes, trying to remember this activity that I no longer directly experience. In the wheelchair, since my eyes are about butt height, I cannot help but notice the myriad of walking styles around me. There is the shuffle, the stride, the inside to outside roll, the lope, the purposeful canter, the spring in the step, the drag, and a whole host of others. The walking style says a lot about the person, a projection of personality through the walk. Walking communicates everything from “do you think I’m too sexy for my own good” to “I’m a very busy important person,” to “this person next to me is my life,” to “if I walk just so, perhaps you won’t notice me.” I watch this like one on the outside looking in, struggling to remember some forgotten name on the tip of my tongue. It is as if all the memory of this very central feature of my old normal self has atrophied along with the muscles in my legs. And of course, once in a while, when I stand myself up just to see if I can still do it, I experience a stab of recall that cuts to the quick, reminding me of what is lost, what is gained, and that in spite of the good place I am in, it will always be a secret ache in the gut that I don’t walk anymore.

I started by sharing that Saturday is my recovery day, which means that I actively and somewhat oxymoronically try to do nothing. The problem with doing nothing is that in the stillness of no activity, the discipline of the now can easily crumble. In that crumbling, comes the temptation to fall back on the old style coping that goes with old normal body activity. And in that temptation comes the sorrow, the grief for a life that is no longer mine, and a little bit of hopelessness as I look ahead. Dis ease is an unsolvable challenge.

One of the things I am doing this weekend is getting ready to teach one week from now. In the leadership courses I teach, I urge my students to work their own unsolvable challenges using a variety of strategies. I ask them to embrace all the knowledge that comes their way about their situation, even if the facts don’t square with how they want things to go. I encourage them to be skeptical of many things—their own assumptions, “either-or” thinking, dualisms that mislead and are too easy to be of any real use. I try to foster negotiation capacity, accounting for the seeming contradictions of disparate needs, multiple realities, and the very human tendency to push one’s own agenda. And I remind them to not take it personally, even when it is personal. Most of all, I ask my students to be creative, seeking the broadest possible interpretations, not so much as to solve their problems, but to work them to some sort of resolution with which they can live, knowing full well that they will need to work these situations next week, next month or next year, because after all, they are not solvable. To me, leaders provide the narrative that makes sense out of contradictory evidence. Today, I perceive the same needs in working my own dis ease challenges.

I am no longer a walker, and I am far less active than I ever thought would be my fate. Working dis ease requires the same skills as those I encourage in my teaching. I must learn and learn again how to reconceptualize the active identity I miss, and the energy conservation I require. And here is what I have concluded.

I’m a roller, a wheeler, zipping along as fast as the chair will take me whenever I have the human space to do it. And I am not alone. Many of my wheeling comrades speak, write, blog, about how much they like to go fast in the chair. It is the one freedom you get from an item mostly defined as a constraint by our able-bodied friends. Rolling allows the conservation of stillness, and the speed of activity, and that is the space I have negotiated for myself today—rolling, wheeling, zipping along.

I know this space won’t last. It will require new negotiations as dis ease progresses, but for now, this is where I am.

It is ironic that it took the very active state of getting ready to teach next week, to find some peace with my current state this week. It caused me to remember that as a teacher, I have the responsibility to do more than talk the talk. Even though the literal ability is now in my past, the fact is that walking the walk is probably more important to me now than it ever was before.

Or maybe it is rolling the roll.