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.


14 thoughts on “Fear of Failure

  1. Bruce – happy to find another PALS who is a Sondheim fan. We saw a marvelous production of my favorite “Company” yesterday at Signature Theater in Arlington. The final number of Company is a wonderful song called Being Alive – especially for me this verse:

    Someone to crowd you with love,
    Someone to force you to care,
    Someone to make you come through,
    Who’ll always be there,
    As frightened as you
    Of being alive,

    These words remind me every day to fight through the fear and tackle head on the challenge of being alive. Since we know our time is limited, we must choose to live full speed ahead. You clearly are doing that, and along the way making a big difference to every one in your life – including me. Thanks. Stuart

  2. My prayer for you, Dr Bruce, is that you will be present at the birth of your grandchild and that s/he will experience the love of a wonderful grandfather!

    • Bruce, I for one expect no reply – I send a message to feel connected, to thank you for the words you send to us. With those we know well and as in prayer, we really don’t need a reply to know we are heard and appreciated.

      Your beautiful granddaughter will have many people who love her who will support her through the stories. Ultimately she will decide what the stories mean to her. I can only speak from my experience, I ADORE the pictures, the hand written recipes, letters to me, letters to my mom, the rings (Grandma Miller is on my left hand and Grandma Jones on my right), really ANY piece of my grandmothers’ lives. They have informed my life. I have created their story and they are with me. Tell your granddaughter stories. I think she will adore them.

      • You made me cry again Bruce. No need to reply to me. I totally understand the limited energy. And also understand your urgency. She will know you-we will all make sure of it. Whatever you can do, fine. No failure here. We will carry you.

        from me and the possiblity that I may only see her once or twice a year seems totally unacceptable to me. The way that families end up all over the planet and separated is not ideal. But all of my thoughts end up as minor whining compared to your thoughts and urgency.

  3. Bruce – as always, I love to read your blog and hear your voice in my head. Which leads me to – I would suggest you record oral stories of David/Jon/growing up with the boys. It may take less energy for you (though I know even that is tiring) and it is SO precious to hear your loved ones’ voices. My grandmother, Stephanie, my mom’s mom, passed away a couple of years ago. One of the things I miss the most about her is her voice – she was born and raised in Trinidad, so she had a lilting island accent. What I wouldn’t give for a recording of her telling stories! What a wonderful gift for any grandchild from their grandparent. Maybe you could even sing a little? On that note, maybe you could send me a copy . . . . 🙂 Love you.

  4. Do it! Whatever of that precious granddaughter-project you can do, do it. But know, friend, that no matter how much is unfinished (less than if you were TAB, I dare say) you ARE leaving something of yourself as a gift for her. Your life has so permeated the lives of so many that she’ll have you with her all the time. The time you share when she arrives will be so precious, but trust me: she’ll know and love you, no matter how much of that you have.

  5. Bruce: Every week with both joy and sadness I look forward to your blog. In the joy
    there are so many memories of things that we shared. And even then you were the
    leader in wonderful ideas. So many, so many. And in the sadness is the thought of
    how difficult things have become for you to remain the sparkling self that you present
    every time. Tolkein said, through one of his little characters, “The hardest part of
    life is loosing what you have.” And everyone of your readers can feel the little deaths
    you are experiencing as we feel the little deaths in our life. Thank you so much for
    your writing. It is filled with joy and sadness, but it is alway an inspiration. bw

  6. Bruce- As always you continue to inspire me. My grandson is now 3 months old and I have put off the idea of writing or journaling about his dad, my son for over a year. The journal has been purchased but no ink has touched the pages. I have a title, “Moments”. I will begin (thanks to your inspiration) and write those stories of his dad as a little boy and as he has grown into such a remarkable young man. One of the previous posts wrote about hearing the voice of a parent/grandparent. I am fortunate to have recorded both my mother and father when they would visit me and my son. Recordings at the breakfast table are especially precious. Yes “do it” as best you can and your granddaughter will be blessed and cherish you as we all do. I will think fondly of you as I begin my writing and please remember, asking for assistance is always an option. J

  7. Bruce, whatever you can do for your grandchild will be a blessing and a memory. I have put scrapbooks together for our youngest and will continue for the memories. This blog will be a story in itself. God bless you and yours. Barb Hamilton Hundley.

  8. Bruce – you are so loved and admired by your friends and family. You make your life part of ours as we continue to pray for you. It will be a wonderful miracle for you to see your little grand daughter when she is born. And when she is old enough to understand she will have you implanted in her memory from all of your family and friends as you watch over her from God’s Heaven!!

  9. Hello Bruce, As always, your pensive Dis-Ease writings touch me in a very deep way. Thank you for sharing so openly, it is a beautiful gift. I came up with an idea for your granddaughter. Why don’t you make a recording, via CD or other device, for her for each birthday until she is 21 years old? As an example., your favorite classical lullabies, with a comment from you between the songs, for her birth gift. (One of our grandsons was given such a recording that he listened to every night when he went to sleep.) On her first birthday you could record some nursery rhymes, again with your comments… on the 2nd, fun, silly Dr. Seuss stories, and on up. At confirmation age you could share your faith. And, so forth. What a marvelous gift this would be for her, and possibly other grandchildren that might come your way. Her having a very special gift from her grandfather each birthday would be so meaningful to her, I’m sure, and, course, would bring you into each of these celebrations, too. My prayers continue for you and yours, Bruce. God bless – Joanie Goehl

  10. Bruce,
    You are ever the teacher and ever the “reacher.” You reach for those thoughts, ideas, images, lessons that seem so unattainable. You reach out and touch and bring them within reach for us all. Thank you, thank you.

  11. Hi Bruce.
    Like you, I love Sondheim and here is one of my favorites from INTO THE WOODS, that seemed fitting for your blog.

    Careful the things you say
    Children will listen.
    Careful the things you do
    Children will see and learn.
    Children may not obey but children will listen.
    Children will look to you for which way to turn
    To learn what to be
    Careful before you say “Listen to me.”
    Children will listen.
    Children will listen.
    Children will listen.

    Bruce, I love your idea of sharing memories of David for his daughter…and I hope that you record some Chicken Songs for her too.
    Aloha, E

  12. I too have als, in hospice care now. I have read your blogs and they’re echo’s of my mind, heart and soul. I weep as a prisoner of my body waiting for my final breathe. I have lived a good life and with grace. I wish death could be as graceful and good but I am kicking, screaming, arguing, weeping and clinging to every heartbeat and breathe.
    Thank you for sharing and bearing your soul. Maybe I’ll see you in the afterlife and we can all dance in the moonlight.

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