Picture Perfect

Almost to the day that I turned 50, I experienced a phenomenon that many of my older and wiser friends easily recognized. I would get up in the morning, look in the mirror and wonder, “Who is that old man staring back at me?” Or I would be walking by a bank of windows or some other reflective surface, and I would catch a glimpse of myself and not recognize the person looking back, as me. As I have continued to age, this experience has only continued to heighten. You might interpret my nonrecognition as narcissistic, and I guess I wouldn’t blame you if you did. Yet, I believe something instructive exists in whether or not we fully recognize our physical selves. I had this experience recently when I downloaded pictures from a small trip we made to Chicago. There was one picture in particular that, when it came up on the computer, made me stop and wonder if that was really me.

We spent our first day at Millennium Park. Chicago has a well-developed park system along the lake, but when Millennium Park was built, it was highly controversial due to its cost and location – a park on some of the most valuable land in downtown Chicago. Now, nearly 10 years after its opening, it is a place of energy and fun and wonderful amenities enjoyed by thousands of people every day, even in the winter. We spent almost 2 hours listening to the Grant Park Orchestra rehearsing an upcoming performance of the Shostakovich Fifth Symphony, we enjoyed bizarre sculptures, and no visit is complete without hanging around the great fountain that projects pictures of faces between its two monoliths, children and adults splashing in its puddles and standing under its bubbling waters. The whole park is meant to be interactive.

The day, lovely and sunny and cool for July, invited us to linger in the park, enjoying its beauty, recording the occasion with lots of pictures. Toward the entrance of the park, we stopped for the picture below – Evelyn bending down to be at my height, me in the wheelchair, crooked, Buddha -bellied, hands tired from steering. I describe this in such terms because for the first time in a long time, I was surprised at my lack of recognition that it was me in the picture. Something about the picture projected what I think of as ALS posture – a picture that my subconscious has always seen in others, but not in me. It broke through my denial spilling waves of cognitive dissonance between the body I have, the person I am, and the way I see myself. Suddenly I saw myself with other’s eyes, and all of those old feelings about disability and deniability came rushing back as if I realized my disabled condition for the first time all over again.

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I guess I really am a TAB at heart. I just can’t help it.

It was the circling gyre all over again – a point on the path of dis ease that I thought I had put behind me – only to spiral around to a deeper (or perhaps more superficial) interpretation of that same event. I thought that I had reached some semblance of acceptance, where this physical body is what it is, and where my own self worth is not a byproduct of physical capacity’s superficial interpretation. You can imagine how surprised I was, not just by the picture, but by this over-the-top reaction of shock and denial.

Usually I have my head around these things, and I am able to live within my disability with a pretty healthy attitude, but seeing that picture put me right back into the denial I had experienced when my ALS first began. And associated with such denial is an unhealthy self-esteem tied up in physical projection. I questioned whether I deserved the love and attention of my family and my friends because, after all I was not whole, I was not well, I was ALS personified – scoliosis, gut protruding, wheelchair – bound, muscles deteriorating. Not a pretty sight.

All of this from one picture? Eventually, I was able to find stasis, harmony – a place where I could accept that it is just my body, and the space that I occupy is far greater than the capability and capacity this body projects.

That harmony was brought home to me this past weekend with the birth of our first granddaughter. To say that I am over the top ecstatic, in love, sappy, dewy – eyed, wowed, totally into this tiny human being would be an understatement, and I am blown away by these feelings. Hypatia, all 72 hours of her, is the mirror in which I suddenly see the real projection.

She is, in my mind, perfection.

Before her daddy came into our lives, I wondered if I would have the emotional space for a son or daughter. Would I have enough love for his mother and him? He answered that question the minute he was born, and I realized that love’s space had expanded and there was more love to go around than I knew what to do with. When her uncle was born, I suddenly realized that this loving space exponentially multiplies so that no matter how many occupy its realm, there is always more love to give. When my sons introduced me to the women that are now their wives, that space opened up again, projecting out and underscoring what I had come to learn about love in space even to this day.

And now, this tiny three-day-old beauty who follows conversations back and forth, craning her neck when her daddy speaks, contemplating with the wisdom in her face that only a newborn possesses, has completely stolen my heart, making me reconsider that man with ALS whose picture was taken in Millennium Park. Her birth was an epiphany, a realization that often the person we think we are is not reflected in the physical self we believe we project.

One of the most overused terms of leadership theory is the term “transformative.” When it was first proposed, transformative was in direct opposition to transactional, implying an experience possessing tremendous significance. Now, I have reached the point where I avoid the term as best I can, because it is applied equally to events ranging from putting up new signage in a building, to rolling out a new advertising campaign, to completely changing the culture of an institution caught in the ruts of its own history. For me, transformative has lost its significance.

Today, I must break this self – imposed rule of usage, for I have been transformed.

I now look at the picture of the man in Millennium Park, and I realize he is waiting, waiting for something that will transform his outlook, reminding him that dis ease is more than ALS. I now look at the picture of that man and I see love waiting to pour out on a tiny, helpless, long awaited babe. I now look at the picture, and I don’t see ALS at all. I just see me – heart open to the perfection and possibility of my beautiful Hypatia.

Suddenly, I believe we are both picture-perfect in our possibilities.

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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.

Arcs and Vectors

I’ve been pretty quiet about an upcoming event, but I think I can now announce that my son and daughter-in-law are expecting their first child, Ev’s and my first grandchild in August. As you can imagine, we are really excited, and every once in a while I catch Ev tapping her toes looking forward to “getting my hands on that baby.” We anticipate birth with such excitement, superimposing hopeful fantasies and imagined perfection on these tiny humans yet to be born. At the same time, we call into question our own childhoods, exploring our parents and their parents, seeking understanding and wisdom before the experience. I can’t help but be comforted by the fact that as I wind down my time in this space, a new human being poised for birth finds his own way, perfect in possibility, not yet shaped into the joys and sorrows of life as we know them. Long explored by poets and philosophers and scientists and clergy, one cannot help but marvel at the contrast – beginning and ending, alpha and omega, birth and death, baby and grandfather yet to be.

Life is up and down.

A new baby and a man with dis ease are at different points on the same trajectory. A baby, like a sunrise reveals the hope of a new day, dew on the grass, birdsong, buds opening into new life. While she must acquire every single behavior associated with a fully functioning human – speaking, bathing, toileting, feeding, dressing, schooling – for just a brief moment between birth and breath there is nothing but pure potential. And over time, she will learn to make responsible decisions leading to the  independence in living that we so value as a culture. Our new grandchild, still in utero, is now nothing but a hopeful point, barely perceptible on the life arc that we all experience.

On the other hand, my trajectory is at the end of its curve, an Apollonian finale hissing into the ocean’s bubbling cauldron of the life that was. All of those human basics, pounded into me in a lifetime celebrating independence, indicative of adulthood’s responsibilities, are shedding like so many feathered layers, melted from the wax wing bindings of life’s earlier flight. Where our grandchild will acquire the intellectual and physical capacities necessary to independent life, I now lose these very same capabilities. While I still take responsibility over my own body, I can only do so through the help of others.

The arc, birth to life to death, is a story of acquisition and loss.

We accept the lack of ability in an infant, hoping and expecting that capacities will develop and capabilities will be achieved. It is far more difficult with our elders. In conversations with people my age, “Mom just doesn’t feel like mom anymore,” has become a mantra. If you think about it, the idea that “mom” would remain evermore the “mom” of memory is illogical. There is not a person on earth who has the same capabilities today as they had yesterday. We age, and our physical capacity wanes, trickling out in dribs and drabs of lost elasticity and flexibility and strength and eyesight and hearing, or worse our mental faculties fail us until we feel our youth as some distant fantasy of another person beyond our memory. The dependent needs of a baby are framed in hope while the dependent needs of mom and dad foment despair, yet the expectation that our moms and dads would be like they were when we were young is just as strong as our expectation that a baby will grow up.

The arced trajectory is a story of upward mobility and precipitous fall. Its narrative is one where youth is celebrated, envied, and ironically disposed of in adult expectations that are unattainable and unreasonable. In our culture we superimpose the avoidance of dependency at all costs on to the expectation. Thus, when our lives reach their independent apex, old age looms as a tragedy to be avoided and put off. We are born, we live and if we are so fated, we age until we die.

In anticipating the birth of our first grandchild, in anticipating my own death, suddenly I am hyper-aware that independence from others, this most desirable state, implicitly means that independence gained must never be lost. It is an illogical belief, fraught with mythos and irrational assumption. Our bodies are designed to gain capacity and then, in what Steve Jobs once called “… the single best invention of Life, … [death] clears out the old to make way for the new.” Our minds are designed for greater and greater analysis and efficiency at the cost of less and less plasticity. Our souls are designed to cling to this physical existence as if our very lives depended on it, and they do. In anticipating the birth of our first grandchild, the grand design, the arc of life, the trajectory of birth to death, soaring to its apex and tumbling freefall into death, provides me little comfort.

A number of years ago, I was preparing to do Brahms’ A German Requiem with my small but mighty church choir. Since it was for church and the German would be problematic to teach, I was working with all manner of translation software and biblical renderings to try to truly understand the biblical texts that Brahms had selected, rendering them into a more meaningful English translation than the Victorian English provided in the score. In the second movement, the chorus begins with the line, “Denn alles fleisch es ist wie Gras.” I have always translated this line as “then all flesh is like the grass,” but one of the translation engines I was using at the time came up with the following: “we are like meat.” I had to laugh, partly because of how far this translation was from the original text, and partly because of its accuracy in capturing the human condition.

Having just heard a lovely performance of A German Requiem last weekend (auf Deutsch), I am reminded with a smile of both the sentiment and the ultimate reality. Rather than a trajectory that implies upward hope and downward despair with all of the crazy energy we put into denying the fall, the birth of a first grandchild causes me to think of life as a vector, pointing up and forward, acquiring all manner of joy and sorrow until, weighted down by life’s cumulative experience, our only chance to break free is to shed our fear and sadness, our hurt and tragedy, our triumph and success, the very things we strove for with such energy, with such purpose, until we are only love and empathy and pure collective humanity. In the arc, we flourish and we fade away, and the gymnastics we perform to maintain the charade of physical independence will ultimately fail. But the vector is a story of comfort, for there is great hope that babies bring and great truth that aging teaches, leaving us pure spiritual connection within ourselves, with others, and with God, even into death.

No wonder we cannot wait to get our hands on those babies.