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.