Now What?

September is a special time in the life of a school teacher. The short summer has faded into the month of preparation that it takes to come back with new ideas, new approaches, reflections on what worked last year, and predictions about what might work this year. Even though I haven’t been in K-12 education for 15 years, I still get these feelings of anticipation. Part of it is living with a very skilled teacher, part is seeking to support teachers through my own work, and part of it is just my DNA–I grew up with teachers who grew up with teachers. But it is a bit weird, the anticipation of school starting juxtaposed with last week’s soft landing from 13,000 feet. And it raises the question of “Now what?,” as it is back to the day to day of dis ease management, and living the narrative of our current place.

I am sure that everyone has experienced the feeling of a massive emotional high, only to have to come back down to earth and do things like wash the dishes and take out the garbage. This is what I have been feeling in the past week, coming off of the high of facing my own low, and then skydiving my way past that fear. Often, coming down after a mountaintop experience has been a crash-landing, but unlike other times, for some reason, there was no crash after this fall. Instead, there was the subtle touchdown, pretty similar to the way I finally came back to earth from my skydive–a swoop, a turn, speed and then a little lift before the final landing. And it is back to dis ease management with the ultimate goal of trying to be a good husband and father, an effective dean, and an engaged person–applying the lessons of the past weeks to the challenges of the present days.

So I don’t feel particularly profound. Rather, I find myself trying to get my head around this seeming dichotomy of beginning and ending. I love the beginnings of the new school year, the anticipation, the belief that anything can go right, and it will. It is one of the real joys of being a teacher, to lick anticipation like it is ice cream, getting to all of it before it can melt away. And yet I also know that I am looking endings square in the face. It was a cool night last night. We put the comforter on the bed, and it is too heavy for me to kick off with my left leg. Does this mean I just lost a point? I don’t like thinking about that, but the thought comes unbidden anyway. No profundity, just reality, if you get my meaning.

One of the things that we have been living with for the past nine months is the need to sell our house. Selling a house is no fun. You are expected to keep the house balanced between comfortable lived in neutrality and immaculate cleanliness. And once you go up on the market, you are at the mercy of the hoped for occasional potential buyer for whom you are making the preparations. You never know if these visitors are curious or serious. If the sale of your house is absolutely essential for you to get on with the next chapter (say a job change or dis ease management) then you really feel the skin you’ve got in the game.

Your ability to move depends upon the ability to sell, and each and every time you vacate the house to the inspection of strangers, there is that irrational hope that this will be the family, the elusive buyers, the unknowns who carry your very fate in the chance that they will see their future in the space that you have made your own and now willingly or not, must give up. It is emotionally exhausting. On the one hand, it is just the envelope of shelter. On the other, it is the home where you made your life, the place where you experienced the love and loves of your kids, and the gathering spot for mourning the death of a parent. Your home is your space and place. The minute you decide to sell your house, you have to box up all of those feelings and associations, and you have to put them far out of reach. It feels like living in no man’s land, a demilitarized zone that is a lot like living with dis ease, because you never know when that next emotional bomb will be lobbed your way.

So we have boxed up the emotions and associations, although I admit that they leak out from time to time, and we are looking ahead to the next step. It is a so called “buyer’s market.” I love how this sounds, like it is easy. Just look at a few places, offer low since everyone will be just grateful for a buyer, close the deal and move. Sounds pretty good! But this is where dis ease has also pushed us around. We would normally research together, go look together, and then decide. Ev has been reconnoitering with our realtor all summer. I visit the promising properties only, conserving energy and feeling a little guilty for not being more help.

There are new variables which we have never even considered before–no stairs, an accessible bathroom, carpeting that isn’t plush, handles that can be leaned on rather than grasped and turned. It needs wide halls and doorways. And of course, with our anticipation of the care needs of a person advancing into ALS, we think about installing transport systems and wheelchair paths. Suddenly, it really isn’t a buyers market at all. Accessibility really makes your buyer’s market pretty inaccessible. I’m not complaining, just noticing.

All of this is to say that I don’t think I have ever experienced a beginning of the school year quite like this. It has complicated things–Ev is back at work, I’m useless after work–and the balance of living in the moment and anticipating the future is easily overwhelming. This is where I really have to kick in the lessons that ALS has taught me. Despair is not useful, but it is normal. When it comes, it does no one any good to deny it is there. It has to be acknowledged, analyzed and deconstructed. This is the time when we have to remind ourselves to take care of ourselves. Ev must exercise, take a yoga class, practice the piano. I must nap, get beaten by my computer at chess, or just sit quietly. In the process, we deconstruct the despair and reconstruct it into motivation and energy for the work that is ahead. I have come to the conclusion that despair is always a potential given when a problem appears unworkable. This realization argues for a different approach, a head adjustment more than a solution. The lesson of ALS is that if you cannot change your circumstance, then adjust your attitude. If I can get myself back to the place where I can analyze and break down the different components of the despair, then I can move past it.

We sold our house ten days ago (although I don’t believe that any house is actually sold until the closing is done and you walk out with a check for any equity you might have in the place). We offered on a place this past weekend only to discover that the association rules allow just one cat. I’m not willing to make a choice there, and so we will need clarification before we move forward. Yesterday, this felt overwhelming. We thought it was unworkable. Today, it feels like another papercut in a long line of papercuts. It just takes way too much energy to live in the fear of the future, even though we need shelter in less than five weeks.

I have an irrational belief that life hands you not so much what you can or cannot handle, but what you are meant to handle. That meaning comes by virtue of being in the place and time of your circumstance, and it neither makes you special, nor chosen. It is just the nature of living. There will always be situations that will test our human abilities to cope well beyond what it is we currently think we can do, and they overwhelm us, or we rise to meet them. ALS really underscores this reality. Dis ease management is predicated on this fact. And guess what, at some point, life, the world and everything else wins. That fact used to scare me. Now it comforts me in its certitude.

So it is a time of beginnings and endings. Anticipation has yet to be broken by the reality of too many kids in the midst of too many kids with very different needs and circumstances and ways of being than when I first came into education. And we are still here, managing the best we can, grateful for the ongoing love and support of friends and family, and actually grateful for the fact that ready or not, we are going to move on from this place to a new place where life will happen. It really isn’t the question, “Now what?” at all. School starts tomorrow. Each day is our next beginning, our “what,” and it is “now” that requires our attention and energy.

And I’m anticipating the next skydive that I bought this week. Happy landings all you teachers, you caregivers and you unsung heroes who manage life into better places! I hope you will experience that swoop, turn, lift and soft touchdown of a great jump into the skies. Now what, in deed!

The Fall

It is late August in Minnesota, and even though most of the world still thinks it is summer, Minnesotans know that they had better squeeze every nice day out of the season, because autumn is just around the corner. Fall is a season that I have always loved. Ev and I married in the fall. The chlorophyll camouflage on colorful leaves is stripped away, revealing the true, autumn thoughts of trees. I still carry the memories of less than a year ago, when I rode a bike to work through the crisp temperatures and the crunchy leaves on the bike paths. Each morning was a decision of what to wear, knowing full well that it would be cold on my way to work, and warm or hot on the ride home. Fall brings the days that portend the winter to come, for while fall is a time of stripping away, it is also a time of preparation. We don’t do winter here like the rest of the world. We take it very seriously, and we know that the world-death of winter comes on the heels of color, and coolness, and the honesty of a fall day. So we Minnesotans seek every drop of life that is left in the world as we get closer and closer to the winter, and farther and farther from the announcing fall.

I think that fall means more to me this year than it ever has before. As I await its truths, they seem to symbolize my own truths, my own autumn. As I work through my own dis ease, I find myself anticipating an autumn with a meaning of color that is beyond the simple get up and go to work existence that accompanies the blessed ignorance of temporary able-bodiedness. As I try to be both realistic, yet still empowered, the fall has a significance that I struggle to comprehend, for I know it means more than just the changing of a season.

This August, an unfortunate focus for me has been falling. Falling is a bad thing, all too often associated with aging and chronic dis ease such as ALS and resulting in injuries hard to overcome. And in the past few weeks, I have had a few falls that left me shaking, bruised and, this is hard to admit, scared. Each time I have fallen, I have admonished myself to be more careful, but I have also known that it is impossible to put the full, one hundred percent attention to walking or standing that dis ease demands. And this inability to always attend, while carrying the consequences of falling, is potentially debilitating. I have found myself holding back, cautiously seeking the safety of sitting, staying, remaining, lingering in the quasi-comfort of my own small space. Falling is a phenomenon that can put you in a place of fear. It can color all your perceptions so that keeping fear at bay, ensuring safety first is so paramount, that any engagement seems reckless and ill-advised.

There are many kinds of falls, and the consequence is always fearfulness at some level. People fall in relationships, tumbling down due to their own or others’ weakness and inability to take a chance on honesty and authenticity. People fall in their lives, allowing their failures to define them in a way that makes it impossible to meaningfully connect with others. Fearful of commitment, afraid of hurt, the fallen exhibit a dis ease of spirit shaped by their own out of control life nosedives. In life and in dis ease, falling really does have significant life consequences.

In the past weeks, anticipating fall in Minnesota, I have also anticipated the autumn of my dis ease. I know that this is no way to live, no way to be defined, and certainly no way to experience human contact and trust and vulnerability. Falling has inspired meanings with a life of their own. In the past few weeks, falling meant fear. Falling meant pulling back. Falling meant expecting others to reach out to me, rather than putting myself out to others. I needed to reconceptualize falling into something that, while evoking fear, also inspired courage. I needed to make the anticipation of my own autumn a celebration of the moment when life lived and shared is beautiful, and shared beauty is a rush of oxygen to the spirit. I needed to take the dis eased meaning of fall and reinvigorate it somehow.

So I decided to go skydiving. This is no easy decision, even for someone with an absolutely healthy body. When I would tell people that I wanted to skydive, the reaction was split—-half thought this was a “cool” idea, and the other half thought I was crazy. But I knew I had to do something that significantly shifted the meaning of falling away from weakness, and bruises, and mistrust, to something where strength and healing and absolute trust were paramount. What better way to rework the concept of falling than to free fall in tandem with a person in whom I had to place my absolute trust? What better way to rework my head than to make thirteen thousand feet the distance from me to the ground?

On Saturday, I met family and friends out in the fields of Winsted, Minnesota, and I went skydiving. The owner of the company, Joe Johnson, told me that it is his special mission to get people who might not be able to even conceive of skydiving, to take the plunge. He has even bought special pants that allow him to help someone like me, quasi-paraplegic with no leg strength, to put my legs into the proper position for the dive. As we ascended to our dive height in a plane that seemed remarkably small, as he and the cameraman lifted me into a position that I would have struggled to get into myself, suddenly that rush of trust and strength and healing was in my face. And yes, I was scared. There is something inherently fear provoking about dangling your legs out the side of a plane at 13,000 feet. But I was also scared that I wouldn’t do this very real thing of taking back my fear. So I did it. I put my trust in a very special person, who took the time to prepare me, to help me, and to finally get me to roll out of a plane and free fall for almost a mile and a half. It was sheer joy–air rushing by at what seemed like the speed of life, gravity’s arc pulling inexorably, yet defied by the simple complexity of a parachute deployed.

I’m tired today, maybe a little achy, but I have a new meaning for falling. I am sure that there will be another fall or two in my future, but they cannot hurt me the way that they did before. I know what it feels like to fall away from the safety of a perfectly good plane, to roll over and over, only to be righted belly side down, air rushing past in a way that I will never adequately describe. And that memory, with the knowledge that a parachute opened and lifted me up into a meandering, slow, undulating set of turns until we landed softly on terra firma, cannot ever be taken away. It was empowering. It was exhilarating. And it was exactly what I needed to take back the meaning, and to be strengthened by it.

I cannot deny that winter will come. I cannot deny that there is still danger in standing, but I have a different framework for the world, for I have fallen freely.

For sixty seconds, I was free of earthly bonds, free from fear, and free from ALS. For sixty seconds, I fell into the assurance that I can indeed do this in spite of my dis ease, that I can stay the course, and fear of falling, fear of failing is unimportant. I know now that I can trust, squeezing every possible beauty out of this incredible adventure. I know now that I can overcome fear, and that any impediment to my ultimate path will be shed like a human being rolling over and over, out of a plane while his dis ease continues to fall away, freely, like the rush of air at the speed of life.


Bruce Skydiving