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.

Enjoy!

Bruce Skydiving

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The Sum of My Fears

When I was told that I had ALS, I was devastated, and not being given a lot of information by the diagnosing neurologist, I naturally turned to the internet to discern what was going to happen to me. There is a great deal of information (and misinformation) about the progression of ALS on the web. During those first few weeks post-diagnosis, each new revelation about ALS was hard, raw, and terrifying. And I thought it was all about me. Of course I come to this me-first perspective honestly. We are taught that tragedy is about our own reaction to it. But with all the Youtube video, the websites, the pictures, the personal stories about ALS, there was something that emerged for me that heightened my fear. Slowly I became aware that my ALS wasn’t only about me. It is about us. The shock for me was the realization that when we face dis ease, we face it not alone, even though we might feel that way, but in tandem with others, and those others suffer just as much if not more in the dis ease process.

I’ve been really lucky in my life. I have a great wife, great kids, and great job. When Ev and I got married, we vowed to each other, “for better or for worse.” I know that, at least in our country, nearly every couple makes this commitment–for better or for worse. We usually take it farther, clarifying “in sickness and in health.” After my diagnosis, I found myself hovering over my memory of our marriage vows like an out of body experience. I remember actually looking down at these two earnest young people, Ev and me, so in love, so naive. I couldn’t help it. I actually wondered, if Ev had any inkling of what was to come, would she have cast her lot with me? On one level, it really isn’t fair to ask such a thing, but on another, it is entirely reasonable, for such is the kind of thinking, feeling that comes in the traumatic aftermath of dis ease diagnosis. And as I floated between memory and presence, I realized that the knowledge I was coming to understand was not only my fear of what ALS was doing to me, but it was the dawning realization of what ALS care was going to do to my beloved partner and my wonderful sons.

This is not an idle fear. Research on the effects of chronic and devastating dis ease on people and their caregivers shows that, while patients can generally reach a certain level of acceptance with a reasonable emotional response, the same cannot be said for caregivers. In other words, PALS, people with Alzheimers, diabetics, and others can find satisfaction in their lives, in spite of their condition. But the same research shows something very different for their friends, families and lovers. Those responsible for the care of the chronically ill are far more susceptible to despair, with their emotional quality of life actually diminishing over time. This shouldn’t be surprising. The responsibilities can be crushing, and the redefinition of roles can put enormous pressure on caregivers. This is not to minimize the effects of the dis ease on the afflicted. I have corresponded with too many PALS who are at the end of their emotional rope to diminish the effects of dis ease. But dis ease has the subtlety of an atomic bomb. It smashes indiscriminately, befouling everyone within the familial and friendly circle.

I have personally seen this happen not only with my own family, but also specifically with the adult children of people with dementia. The pain and confusion of redefining a relationship with one’s parent is difficult. The realization that your mom or dad is no longer that person that took care of you, was there for you as your greatest critic and fan, who instead now needs the kind of care that you always associated with young children, comes hard. And with dementia, often the tipping point where care needs to be raised and roles redefined, is hidden until almost the moment it is needed. Logistics, finances, emotion, and confusion about the changing roles of caregiver and mom or dad or partner or spouse come together in a perfect storm of emotion and stress. Dementia strikes, and everyone near gets dementia all over them.

When I hear politicians and policy wonks complain about the cost of dis ease management, I feel like they are talking about Martians. They seem to believe that we can blame those who are ill with the repercussions of chronic dis ease. They bemoan the dollar costs, while pretending like the rest of humanity will never be dis ease afflicted. It isn’t logical. Given the experience of aging, chronic dis ease is in everyone’s future. If it doesn’t affect you as an affliction, the chances are very good that it will affect you as a caregiver. We rarely think of how systemic are dis ease’s demands. Instead, we act as if chronic dis ease happens to “those people,” others who are on the margins of our own existence. At least, and I am sorry for this, that is how I was.

The real issue is how to make dis ease management normal, normal for a society, and normal for a family. There is an entire side to dis ease management that is missed, because once dis ease is known, it takes on a presence, almost like another person in the room. It worms its way into the intimacy of your relationships. It shadows your gut, and disrupts your sense of peace. It seeks no less than total domination, if not of the conversation, then of the lightness and color in the spaces of your love. The balance dis ease demands, between overwhelming consciousness and total denial, would be difficult for the strongest and healthiest among us. The fact is that the real costs of dis ease management come in ways that are almost too difficult to measure, and yet remarkably easy to perceive. Such issues do not lend themselves well to policy debate.

As I see my own physical regression taking place, I am hyper-aware that Ev picks up more and more of the daily responsibilities—laundry, food preparation, cleaning, and of course, all this while she is working in her full time job. We haven’t even hit the point when I will need constant care, where every small item of daily grooming will require the support of someone else if it is to be done. The stress and demand that ALS makes on her far exceeds the emotional and physical resources that any normal person might hope to possess.

The toll that chronic dis ease management exacts is real, and it requires that we learn skills, tricks, and mindfulness in its management. For me, this past nine months has taught me that the first step is to pay ourselves. I have learned to conserve energy, to sit quietly and just be. Ev has recommitted to old normal, healthy habits–exercise, diet, sleep, yoga. We try to balance the conscious with denial. This allows us a fighting chance to win the wrestling match that holds despair at bay, and creates the space where we can still be best friends and lovers. Strength is only available through care, care for one’s self, and care for others. Even the healthiest among us needs respite. For the caregivers of the chronically dis eased, it is the post-trauma that means the most, and respite and care are exponentially required.

Perhaps the greatest realization for me in all of this is that nothing is singular. Dis ease casts a far greater influence than just one person. It walks through the door, sits down in your living room, and it asks, “What are you going to do about me?” If we respond, “I don’t care,” it is at our own peril.

Winning the Lottery

This week, a local couple from Burnsville, MN won the 229 million dollar Powerball. Talk about winning the lottery! At last report, they were trying to decide whether to take a one time payout of 124 million, or to stretch it out over a number of years so that the taxes would be less. A lot of us like to indulge in the fantasy of “What would I do if I won the lottery.” The odds are really low, less than 1 in 80 million for the Powerball, and yet, as the saying goes, “You can’t win if you don’t play the game.” The fact that a local winner emerged sparked Ev to observe that the winners have a lot of choices to make, and these choices reminded her of the choices that we faced upon diagnosis of ALS. Powerball and dis ease, each is a lottery, but the odds are different, and the games have very different rules.

If you won the lottery, imagine how it would feel. Imagine the shifts in the very foundations on which you were standing. Everything would change. You would have to decide whether or not to come forward (winners generally get a year’s grace period to make the decision). For those who question why you would want the grace period, consider just how much everything would change once the news was public. Instead of friendship based on being friends, you would probably find yourself thinking about why people were contacting you. In the back of your mind would always be the thought, “Do they want my money?” And think of the added pressures winning the lottery would put on your family. They would also learn to consider the motivations of others, even old friends. Every relationship, every action, every event would be tinged with the questions of motive. While I know a lot of people who think they would gladly take that burden, I am well aware of the studies that show that lottery winners aren’t necessarily happier, and many actually wind up destitute as well. The odds of things going south for lottery winners are much higher than the odds of actually winning the lottery.

For those of us who have won the ALS lottery–the odds being 3 in 100,000–there is a peculiar parallel with winning the Powerball. For once you have your diagnosis, everything changes. I remember full well the feeling upon hearing, “You have ALS.” It was as if the world took a 180 degree shift, the floor disappeared, and I felt like I was floating above the scene in that doctor’s office. It didn’t help that I couldn’t ground myself with the human connection of touch (I’ve already written about this–sorry). But I think my journal from that time is instructive.

It really is amazing how quickly your world can change. Just like that – on Sunday night I was a person with lower back pain, muscle twitches, and a floppy foot, fatigued but still whole. I thought, “It is a combination of a pinched nerve, too much caffeine, working too hard, office stress.” Ev and I went to a concert on Sunday evening with our son Dave and his girlfriend Athena. The choral music was ethereal, sublime, and I knew, deep down, that it was the last night of my life like that. I wept during that concert; the music touched me so deeply. I wept during that concert; it was my last night on earth.

It is the last line of this raw journal that describes the lottery win of dis ease. “It was my last night on earth.” Since that time, Ev and I have undergone tremendous changes in the way that both of us, and our sons, and our friends, and the rest of our family, perceive our lives. Everything is processed through the lens of the dis ease win. I evaluate and analyze every plan based upon perceived effort divided by energy usage. Even my work, something where I have never thought about conserving energy, is dependent on this mathematical calculation. Before, I never considered it. After the win, I think about it all the time. For those of you that doubt the reality of rebirth, dis ease is rebirth in spades.

I still weep from time to time. I weep for the past, the lost abilities, the lost roles, the lost yet blessed ignorance of not having to face the fact that dis ease is our gift and fate. But I also have to admit that the weeping times are associated mostly with new developments in physical regression. Winning the dis ease lottery means that you become much more aware of the fleeting gifts of life, that life is not the static state that we normally perceive, but rather that living is a constant review and adjustment to information that you probably don’t really like. Such awareness, like the awareness of other’s motives by Powerball winners, is not always pleasant, but if you are going to do anything with the life you have, you had better pay attention.

Powerball winners are a little different from dis ease lottery winners. They get to choose if and when to come forward. They get to choose whether to accept the prize. Most of all, they get to look at the point of delineation, their last night on earth if you will, and decide if it really will be the demarcation of then and now. Dis ease lottery winners get no such choices. You cannot choose to walk away from the prize. You are forced to come forward, and the moment of demarcation is a trauma that lives with you for the entirety of your rebirth in dis ease. Yet, I must admit that as much as I would like to have missed out on this experience, I am thankful for the gifts I have been afforded. For unlike a Powerball winner, I don’t question the motives of my friends and family. I know that they care, and they want to help. I don’t have to worry about what I will do with the winnings. They are already distributed, inherited, and they continue to play out. Most of all, I have been afforded the opportunity to be aware, for the blissful ignorance is actually not so blissful. We do ourselves no favors by pretending that dis ease is not our own reality.

I cannot say I am happy that I won the dis ease lottery, but I am appreciative of the growth it has afforded me. I am thankful for the framework dis ease gives me in terms of setting priorities. It reminds me of so many things, not the least being that attitude is a big part of how things go for me. I don’t mean this to be pollyannish, and I certainly don’t want to give the impression that peace with a dis eased existence is a static state, but from my point of view, I’ve never enjoyed ignorance. In playing the dis ease lottery, you learn that the winnings are what you make of them.

I guess that if you want to win, you do have to get in the game. For me, dis ease is as much a part of the life game as anything else, and the only way to win is to lose–lose your former capacities, your former frames of reference, but most of all, lose your ignorance of the odds. With the losses are opportunities for gain–not so much physical, but spiritual. Once you have stripped away all of those things you thought were important, you find out just what remains, and this is what you place your bets on. Everyone tries to beat the odds. For me, the greatest growth has been a mathematical understanding. The real odds for dis ease and life are 100 out of 100, and none of us gets the choice to walk away. So, the choice is to play it out the best you can, or quit.

I’m still playing, odds be damned. And in some funny way, the more I lose, the more I win. Talk about winning the lottery!

The Teacher

It is probably no surprise that at some point in this journey, I discuss teachers. After all, for me the profession is nearly genetic, in my DNA so to speak. My grandparents and parents were educators, and as hard as I tried to stay out of teaching, once I found myself in a school and working with kids, I was hooked. I also am well aware that there is a certain ego-centrism we humans carry—something along the lines of “if everyone knew the special experiences I’ve had, the world would be so much the wiser.” So I apologize. I need to ask your indulgence for this one, because I need to talk about teachers—teachers that I have known, the teacher I wanted to be, and most of all, how the persona of ALS has become one of the most effective teachers I will ever know. In reflecting on my own career as an educator, now over thirty years, I have to admit that some of my most deeply held beliefs have been turned on their collective ear by the education in which I now find myself enrolled. More specifically, the pedagogy employed by my new dis ease mentor is one that is probably the most effective I have ever experienced. I share with you these observations, none truly adequate to the topic, but all heartfelt to be sure. Or, to paraphrase Sean Connary in the 1987 movie The Untouchables, “Here begins the lesson.”

When I was in high school, struggling through more than the average high school student’s dysfunction, I had an English teacher with the remarkable gift of invitation coupled with accountability. She accepted nothing less than my full capability, and she accomplished this by paying attention to the details of life that were crashing down around me at the time. She taught me to use my failures as opportunities. If I turned something in late, she nailed me, if I wrote beneath what she perceived I could do, she made my papers bleed red as only a skilled English Teacher truly knows how to do. And in the process of holding me accountable, she also invited me to become more than I wanted at the time—“Come and see me after school, and we’ll talk about that.” At first I didn’t, I’d blow her off. “Yeah sure, maybe tonight.” But she just wouldn’t take no for an answer. When I didn’t show up after school, she would somehow mysteriously appear at lunch in the hallways where I was hanging out, “Hey, I need to talk with you about that last paper you turned in.” Slowly, she reeled me in, hooking me with intellectual challenge—“I was reading this essay, and I thought of you, why don’t you give it a look and write about it?” She had the persistence of a woman possessed with a mission, and she focused her considerable energy on the children of her community. She was brutal, kind, a friend, a sister, a cunning and brilliant woman who just wouldn’t let me slip into the mediocre quiet and addled confusion that I thought I wanted. She insisted that I be much more.

And of course there were the music teachers with whom I studied. Strongly opinionated, personally flawed, artistically brilliant, extremely varied in their aesthetic judgments and tremendously demanding of everything I might offer, they pushed me into arenas that even now I have difficulty believing. I learned to balance their expectations in ways that forced me to make unified sense out of their extremely disparate demands. My music education was one that left no choice in the construction of a unique, artistic persona, mostly because I had to reconcile my equally brilliant teachers’ vastly differing values. More importantly, I learned to read the artistic and performance requirements of any given situation for what was actually present, accounting for the forces and resources that were available rather than for those I ideally thought should be brought to bear on the musical challenge of the moment. If I was stepping up to sing with an orchestra, I had to learn to reconcile my voice teacher’s expectations with the conductor’s musical interpretation whether either was consistent with my vocal capability or not. And I had to do this knowing full well that both would be offering me their loving feedback at the end of the performance, probably none too gently. What I learned was that each had a perspective, a frame of reference that informed their expectations, and there was no argument about which of them was right and which was wrong. They each were totally correct and justified in what they taught me, expected of me, and pushed me to do. It was just that the two (or sometimes three or four or five) were diametrically at odds with one another. And when I would try to point this out, each would invariably say something like, “This is art. You think it is easy? Figure it out.” Laid into this musical context was the significant teaching that reconciliation toward a vision larger than any one person can hold, is the stuff of life, and if I could just figure out how to do that, there would be a really beautiful moment somewhere in the process that no one truly anticipated.

These were lessons that were profound in shaping me as a teacher, yet early in my career, I misapplied a number of the lessons above. For example, I believed that if I focused solely on success, kids would be successful. I structured my classrooms to avoid failure. I placed success, even if it was just a drop in the ocean, at the top of my teaching priorities, remembering how my own success had spurred me on to greater things. And later on, I sought to teach the power of a compelling vision, believing that in such presentation would be a smoothing over of the differences that come with the naturally disparate points of view present when two or more humans occupy the same space. I remembered how, in my own performance preparation, I could reconcile conflicting demands through my own interpretations. I thought that what I had learned in my artistic training was how to make conflict disappear through a higher plane of performance and aesthetics.

Now, I am enrolled in the most challenging education I have ever known, with the cruelest yet most profound instructor I have ever experienced. Instead of a focus on success, I must deal with inexorable failure. Instead of reconciliation, I must accommodate the destructive elements that now come crashing in–sometimes moment-to-moment—as my body fails. For above all, ALS is about massive failure, and ALS is hegemonic to a fault. The performance demands are significant—I must learn and relearn how to do more with less, to rely on intangibles such as faith and breath when faith is buffeted and breath gets shortened by the most mundane of activities. I must learn to put my hopes in the love and support of family and friends, reversing the beloved role of eternal caretaker and dependable rock. It is a humbling lesson. Most of all, my new teacher has starkly made me see that real living is not possible without acknowledging that each moment, death stares you in the face. Talk about reconciling disparate information!

OK, now don’t get upset, for I want to name a few things that get turned on their ear by the great teacher with whom I am now engaged. Let’s start with success. I wonder if I would not have been a better teacher by focusing on creating a classroom environment where failure was the expectation, but the love and care that went with the failure made reengagement, resilience and persistence non-negotiable. Above all, I now realize that what my former teacher taught me was to be persistent. She was! She just wouldn’t let me slip through the cracks, and she never lied to me about meaningless successes. She pointed out everything I was doing that didn’t live up to standard. By truthfully evaluating my performance, and by not letting me disengage, she showed me how to work through my failures. Now, in a time when dropout rates are estimated to be between 25 and 30% nationally, wouldn’t resilience and perseverance serve our children much better than falsely structured success? Live, and you realize that you have to persevere, to pick yourself up, even when you cannot stand. I wish that I would have allowed more failure, and communicated more love. My new teacher points this out to me every single day. All of us will experience failure, loss, utter despair many times in our lives. It is whether we have the resilience to learn from these experiences, whether we have the strength of character to come back with persistence that really determines our success. So my former teacher was a character builder, and my current teacher insists on strength of character, and I wish I had learned this lesson earlier.

Even more important is the lesson of reconciliation. All human beings come to a given place with their own experiences having shaped the person they are and the beliefs that they carry. It isn’t about finding reconciliation to sweep away the differences and challenges. It is about a life that accommodates the fact that diametrically oppositional forces must occupy the same space. The artistry is in moving past that fact and finding a way to accommodate these differences without letting them kill you. It is, in effect, the ability to take the termites and ants and all the other creatures that you think are undermining the structural soundness of your house of existence, and incorporate them in a way that they become integral to who you are and how you do things. I cannot cure myself of ALS, I cannot go back to my pre-ALS self, but I can accept its presence as real, rebuild myself with that understanding, and move on. Not so much reconciliation, this is actually the accommodation of life that dis ease requires. That is a hard one for me, but it is why I have not allowed myself to “fight” my dis ease. Instead, I have learned to embrace its requirements, to move through its limitations and still be who I am. I admit that the lesson is not completely learned, but this is the struggle of life—to accept it on the terms it gives you, whether you asked for terms or not.

I started this reflection apologizing for indulging a need to discuss teachers and teaching. In so doing, I realize I ought to apologize to all of the great teachers I have known for being such a willful student. I apologize that it took one more teacher for me to actually get the lessons now that they sought to impart so many years ago. But the fact that the lessons are still there is a testament to their genius. To have given such a profound gift is artistry and science and faith and reason to the highest exponent imaginable. I can only name them for what they were—Teachers, and I can only hope that in some paltry way, I finally got it right.

And in so doing, I can quote Sean Connary rather than paraphrase him, “Here endeth the lesson.”