Fear of Failure

Before I start this week’s reflection, I would like to thank all of you for your kind words, thoughts and very considered advice after my last blog. Your willingness to walk with me as I roll along is often the best part of my day.

Last night, we watched the Tony awards. I love musical theater, and I like serious drama, so it should be no surprise that we decided to forgo Game of Thrones and Mad Men in favor of this giant, three-hour advertisement for one of the great joys of New York City. With all the revivals showcased last evening, it was a little bit surprising not to see a show by Stephen Sondheim represented. Of all Broadway composers, I think Sondheim is my favorite, and with the week that I have had, I found myself humming a tune from his show, A Little Night Music – “Every day a little death.” I know this sounds maudlin, but the song actually represents the antithesis of how I have wanted to live since my diagnosis with ALS.

Every day a little death
In the parlor, in the bed,
In the curtains, in the silver,
In the buttons, in the bread.
Every day a little sting
In the heart and in the head,
Every move and every breath
(And you hardly feel a thing)
Brings a perfect little death.

Invariably, you cannot approach ALS without thinking, at least a little bit, about death. When I was first diagnosed, I thought about my death a great deal. Then, as I seemingly worked through each ALS challenge presented, it became less and less apparent that my death would be sooner rather than later. In many ways, I would acknowledge death’s presence, but only begrudgingly and only within the larger context of dis ease. But especially in the past week, as I have dealt with a physical pain that I have not known before, as I have dealt with the emotional pain of saying goodbye to my hand function, as I have dealt with the pain of realization that there really is no going back; death has entered into my conscious space, pushing out the comfort and teaching of dis ease, replacing it with the sparkling clarity only its presence can bring.

Don’t get me wrong, I am not looking to be relieved of life just yet, but the hopeful sense that I can do this and do it well has been replaced with the realistic sense that I will do this and perhaps not with the grace and hope I expect of myself. Such realization causes me to reflect, to ponder, to become introspective on the value of my life as it is now, as it was, and as it will be. And of course when you begin to question value, then you begin to superimpose success and failure into the interpretation of life that is and was. And believe it or not, it calls into question the way you are blessed or graced or forced to die.

How do you fail at death?

In the past, I have chosen to reflect on such questions by turning them aside and asking instead, how does one fail at life? By turning the question to a life question, it seemingly delimits dying’s impact. I think it’s a good way to think – that a good death is based on a good life. But there is a small scratchy voice that asks me if I am avoiding the question entirely by turning it on its ear. After all, unless you choose to take your life, it really does seem that the choices around death are few and far between. So the question of failing at death might seem to be illogical or even silly, yet I find myself asking how that might work.

I have no way of knowing how much time is left between today and the day that I will die, but I am aware that the chances of having one year, a little over one year, a year and a half, less than two years are very good. I know this based on physical symptoms and how quickly they have come on. I know this based on what mitigating factors are available to me and how developing systems for catastrophic disease management are skewed toward profit and not cure. I know this intuitively in the depths of my gut and my soul.

There is nothing like impending death to focus your thinking.

So today, I find myself in a strange position of feeling urgency to bring certain parts of life to fruition while at the same time recognizing a lack of physical strength for the task. Here is an example. From time to time I receive lovely personal comments from friends. Sometimes these comments are soul baring, graceful dances, wisps of ether or shocks of electricity as friends and loved ones struggle in their own versions of dis ease, seeking to share a further understanding of my plight through theirs. They share thinking that perhaps I might have a broader capacity of empathy for what they experience. They share to comfort and question the humanness of living. And the energy that it takes to respond is so great, the physical needs for written response are so beyond me, that I just don’t. This is not the way that I wish to be engaged with my friends. This is not the kind of friend I wish to be. It feels like I am projecting apathy about issues that are truly troubling for my friends. It feels like I am not offering the love and care that I feel. There is urgency to respond, and fatigue in the planning.

It feels like failure.

I suppose that nothing focuses this urgency like the upcoming birth of a granddaughter. What little she may know about me will be in the stories of her parents, of Ev and of course what she discovers on her own. So I have been plotting a presence in her life, yet questioning if it is possible to achieve. For example, I’m beginning to think about digitizing photographs of our family when her dad was just a boy. I’m wondering if I could write stories around these photographs that would help her to know how special her father is through her grandfather’s eyes. Such an offering is a gift that children love. They love to hear stories about their parents when their parents were young. They love to hear of the childhood adventures lived out before their time.

But you can see how the logistics will be tricky. I cannot place pictures or slides on a scanning tray. I will need help putting them in order. I will need to write carefully. Above all, I will need to be mindful of my new granddaughter’s ability to comprehend the stories that are being told. I won’t be there to mediate the scary parts. If I cannot get to this, it will feel like failure. If I do not leave something of myself as a gift for her, it will feel like a purposeless life. It will be the little death I have tried to avoid.

In the end, I suppose it is about the fact that a good death is so tied up in the future beyond the event. It is the translation of one childhood into another, of love projected well beyond the time it was given, of DNA beyond inheritance.

And I suspect there will be no Tony for the performance, although I’m hoping for a long run.

Summer in the City

It is summer in the city, and early summer means scrutinizing the year’s successes and failures, challenges and opportunities, missed possibilities and veritable triumphs. If you are not part of school culture it is reasonable to wonder, why all this reflection in the second week of June; and if you dance the dance of education, you know that our inner clock is set to the turning of the seasons where in late May and early June, while farmers plant new crops with hope in the harvest of the fall, we harvest the produce of an academic year based on the hope that was planted 10 months ago. For me, this time of year represents another one of those weird juxtapositions. The liturgy of yearly reflection, framed by dis ease, offers up an accounting ledger of gain and loss, columns of perceived profit overall, but parenthetical red ink spilling all over my personal ledger. Even with a couple of weeks left in the fiscal year, I have a pretty good idea of the forecast with all things pointing to continued negotiation of ALS, like a flipped coin that never seems to land cleanly on one side or the other.

Key to any professional reflection is assessing your own and others’ performance. I don’t believe I have ever enjoyed evaluation meetings as much as I have in the past week. I find myself hanging on to every question, every comment, every conversation in which we share our hopes and goals and dreams and yes, our disappointments. These meetings, so perfunctory in the past, have now taken on sweetness, morsels of shared appreciation, frustration, collective failure and success. I want to say more but the words are muted, inadequate to the privilege I feel working with these bright, talented, passionate, and even curmudgeonly individuals. We seek a toehold on the cliffside of Higher Education v. 2012, and pushing up and out under craggy overhangs, swinging to spaces where the safety of ropes is memory, jamming fingers into minute cracks to hold ourselves onto this wall by the smallest of digits, we dangle our professional existence in a netherworld where terra firma has turned upside down. I look back on my own accomplishments, my failures, and I look forward at what faces us looming large, comforted by the presence of these brilliant people. There have been tears in these meetings. There have been mirthful laughs. But most of all, unspoken, there have been present, holy manifestations of just how special this time is together; at least it is that way for me.

The logistics of Bruce with ALS mean that each passing day presents more and more difficulty just to enter the professional day in the life. Taking stock over the past 12 months, I have departed from dressing myself to requiring home care just to get on my socks. The act of buttoning a shirt has transitioned from the just possible to sleeves and necks and sometimes the whole placard left for someone else. My perfectly knotted tie, once so smoothly executed, is now a clumsy ritual of reliance on others to turn down my collar and center the knot. Breakfast and lunch and dinner are totally dependent on the culinary skills of my one true love or trusted others. Nothing is more illustrative than driving: A year ago, I plopped into a Honda Hybrid with a cane thrown in the back seat; 10 months ago, I traded the Civic with Ev so I could drive her Subaru (higher off the ground, room for the walker, easier to swing in and out of); 7 months ago, I moved into a Rollx van with hand controls, and 8 days ago—I stopped driving. The academic calendar recalls the logistical progression of dis ease’s greatest accomplishments.

And of course, the preparation for professional engagement leaves me exhausted, anticipating the everyday exhilaration as if I had run a marathon, swum miles, biked up a mountain, hiked into town and back on an empty stomach. In these end of year meetings, I float on a self-manufactured cloud of fatigue, thoroughly relishing the shared time together, scrabbling to stay focused when weariness from pre-game liturgies pushes my eyelids downward, misting my peripheral vision, darkening the walls and ceilings, yet illumined by the presence each colleague brings into the room. I never feel so alive as when I am in communion with others, and the intimacy of colleagues engaging the common purpose of educating professional wannabes whose entire raison d’etre is to point a life path for those struggling to find their way, is a sweetness that frames the exhaustion in dappled light like the shade of a tree interrupted by summer sun.

This week, one of my favorite people in the whole world brought his district’s administrative team to our campus for a day of K-12 reflection. He asked me if I would say a few words of welcome—something along the lines of current educational policy or trends reflecting the needs of K-12 and higher ed. I worried that welcome like a loose tooth, and nothing seemed even remotely right. And why should it? The epiphany of dis ease floods my eyesight with the realization that ALS doesn’t allow you to be so flippant as to toss off a few ideas about policy. Instead, I spoke from the naked core of what I know best—failure. I said:

One of the gifts of ALS is recognition. As an educator, and a pretty good one I might add, I recognize great teaching when I see it, and ALS is a great, if unyielding teacher. And what have I learned? The cornerstone of my new knowledge is to accept failure as inevitable. I write about this a lot, because such recognition blesses and curses, confuses and clarifies, fragments yet unifies. You can build faith in failure.

Is it any wonder that I want to keep working? Against the easily documented losses of ALS come the professional accomplishments of so many around me, an opportunity to build a spiritual faith where failure is only the next test and the next. I ended my welcome with this:

Today, as you discuss your successes and failures of the past year, challenge yourself that every child in your sphere will be deeply known, loved, fostered, and cared for by someone in your school. Challenge your systems to face failure in a way that will build strength and capacity so that the next failure and the next will be nothing but a pathway to success. Yes, intervene, improve, tutor, school, teach syllables and numbers and sounds and knowledge and the civil responsibility that defines the difference between the educated and the ignorant. But in that time, do not lose sight of the fact that we are, each one of us, failing; and we have been given a great gift in this insight—the choice to energize our collective failures into the emergence of a beautiful human child educated to be persistent, resilient, squeezing that failure, until it yields, and in the yielding, learning success.

It is summer in the city. “Hot times!” My academic clock insists upon reflecting on a professional life that somehow, squeezed out another year engaged in what I love, that somehow my world of physical breakdown continued to intersect with a world in which failure needs translation for its gifts. The sounds of summer in my city tell me to let the sunshine pour down, that just enough will get through my personal shades, and that faith is in the blessings of failure and life and spring planting and autumn harvests. On the local farms, lettuce and leaves and strawberries are just now beginning to show themselves to the possibilities and threats of the season to come.

And I marvel. I just marvel.