Perhaps you have noticed that I haven’t blogged for nearly 4 weeks. There are reasons for this. My physical ability to write is more and more compromised by my lack of strength to pull up to the computer and my lack of stamina to stick with the writing once I am there. Of more significance is the fact that I have chosen not to put up two separate blog entries. It isn’t that I am afraid to share how I am feeling, especially when my feelings have to do with grief and loss. It isn’t that I am in such a bad space, that I’m afraid no one will like me anymore. It has more to do with the constant existential awakening that comes with dis ease, with this seemingly infinite process of winding down, yet moving at the speed of ALS. In the past two weeks, I have allowed myself for what seems like the very first time, the question, “Is this the beginning of the endgame?” What a question to ask, as if the moment of birth is not the beginning. But we aren’t conscious at the moment of birth like we are in the bloom of our adulthood, so the question takes on meaning even if it borders on the rhetorical.

My French muse Francis Cabrel sings the angst, “J’avais des rêves pourtant.”

Raising the question of the endgame is significant for me. Before, it felt like an academic exercise, one that fulfilled my need to stay ahead of symptoms and losses in a way that gave me the illusion of control. But as I look back on my control rituals, it is clear that they lead to this point: The endgame is coming, I don’t know when, but I can have faith in its presence now in my life, a new phenomenon for which to prepare. And in preparation it is useful to stop, to take stock, to recite the poetry of grocery lists and ledger sheets that account for gains and losses, mumbled psalms of what is in my capacity and what is not, utilitarian self-pity, borderline whingeing, yet keeping ahead as best I can, even though I know I am seriously falling behind.

The loss is easier to share than the litany.

I cannot help but feel robbed, not of immortality, but of the 30 years of healthy old age that I honestly thought was my future. ALS provides the perfect corrective to the best of plans. She grants knowledge that our imperfect physical envelopes in which we place so much importance, given to us for such a short time, always fulfill their design destiny and break down utterly and completely. There are so many ways to shorten our lives, and when you consider how many ways you could go, how easy it is to experience catastrophe, how unremarkable is death, then dying before one’s so-called time should probably be seen as more the norm than the exception. The 30 or so years that I like to believe would have been mine were it not for ALS are so minuscule in the scheme of the universe, that it is tempting to diminish their importance, to believe they are meaningless.

But they are my 30 years, and I had dreams and plans.

I planned to sleep in the arms of my one true love, to be awake, so very awake to her presence in my life. I planned to be there for my boys and their true loves and the children that they would have. I planned to cook birthdays and anniversaries, Thanksgiving and Christmas, three-day weekends and one night chili cookoff’s, holidays and holy days. I planned to be the husband and father and grandfather of legend. I planned to bring a rational voice and compassionate love to the education of children, the emotional healing of people, the design of systems. I planned to be the best friend anyone could ever have. Before ALS, I could see those plans opening into limitless vistas.

I am cured of planning, at least for the moment. Now, I pay attention to the losing – hand dexterity, back strength, neck strength, vocal presence – all of these to go along with the legs and arms and torso already gone. And with the losses, I have struggled to play catch-up and turn to new ways and old ways that I now realize are just barely ahead as the losses pile up behind. And yet, I am not cured. I still have plans – final words, time spent, memories, music.

I plan to end in a better space, always a better space.

If there is anything that I have learned from ALS, it is that the bad times are like changeable weather. If you have patience, things will begin to turn around. There is no big event, no one thing that turns me away from feeling sorry for myself toward that person I want to be. In spite of my whingeing, I work hard for spaces devoid of soul-killing feelings – deep resentment, crushing bitterness, prolonged anger. It isn’t that I don’t own major reserves of these feelings, but grim feelings have no payoff, they depress colors, muffle sounds, numb the touch and leave me hopeless in dis ease. So I do my best to acknowledge them, communicate them, concentrating on things that bring me back into the here and now space where the beauty of living is so much clearer, even if it feels shortened by circumstance.

Listen! Grimness is legitimate. Despair is normal. Helplessly hoping is most human. But I can handle it, we can handle it, it only overwhelms my body. My soul still sings. My spirit breathes.

So many people offer time and companionship, keeping me from loneliness, caring for such small yet important items as straightening my fingers and helping me adjust in my chair, providing thoughtful company, bringing bread. The times I can get out to church, to yoga, even to a wheelchair tuneup are a blessing, for the people whom I love touch me with their strength, and I feel better in spite of how fatiguing the logistics can be. The unconditional love of Ev and sons and daughters–in–love, of friends and colleagues, strengthens me for the eventual time to come when I know that ALS will overwhelm me, and the decisions we make together will be like pouring joy’s waters through the clarifying filters of sadness.

And of course, there is Hypatia – pure granddaughter.

In a funny way, the endgame opens a panoramic view. Quiet and starlit, soft and peaceful, waves and wonder, I just need to breathe into it, to open myself to its beauty, to not worry about the plans or the timing. I understand now that the plans I made were not so much about me but about everyone else whom I love. The love will find its own way if I will allow it the space. And I will be able to move through this no matter how hard it gets, if I will just stay open to the epiphanies and revelations on the horizon and right before me. “J’avais des rêves pourtant.”

And the endgame is just one end, opening new beginnings.


22 thoughts on “Endgames

  1. Bruce, thank you for being brave…. stay open, keep fighting for hope and humor and watch the birds, for Douglas found their freedom inspiring when he could not move anything and all he had was a whisper… but it was a profound and amazing whisper. love to you and your family, jackie bohrer, a friend in the ALS community.

  2. From the last line of the poem, “Go Lovely Rose,” we have:
    “How small a part of time they share, that are so wonderous
    sweet and fair.” You bring out the poetry in us, Bruce.

  3. All the desiderata you listed, Bruce, you have accomplished. All of them. The joys of your doing each of them will not last 30 more years, but the dreams will. You have shared those dreams and memories with so many others. There is no endgame to our love, even when one day we are gone from this world. It’s the gift that keeps on giving. Thank you for all of it.

  4. Bruce, You continue to inspire me. Your writing is so spiritual and your spirit seems to continue to grow as your body diminishes. Thank you for sharing with us and inspiring us to look at each day and the love and meaning we get from our relationships. Thinking of you and Ev and sending prayers for peace and strength. Miriam

  5. Bruce, the insights and wisdom you continue to share as you journey through dis ease are simply astounding to me. Thank you. Please know that I remember you in my prayers each day.

  6. It is a great honor to be along your soul’s raw journey, Dr. Kramer.

    Some words considering one endgame, “How beautifully leaves grow old. How full of light and color are their last days.” -John Burroughs

  7. Bruce, I’ve known about you for a fairly short time and met you only once, in wonder. I wish I had known you forever, so I might now help to straighten your fingers and be your company. You are such a profound teacher…of life and death…and love. I carry you in my heart.

  8. You, Dr Bruce, are amazing! Even in your dis ease, you are my teacher. Your insights and out-loud thoughts push me to deep thought. I just mentioned to my sweetie how your reflections move me and how I pray for you especially at night to find comfort and joy in your pain and suffering, a paradox of sorts. May the Lord cuddle you as you and family “walk” through your end game and teach me via your journey.

  9. Bruce thank you for sharing your thoughtful, truthful, insights with us. You’re an incredible man, husband, grandpa : ) teacher, friend, and role model. I can honestly say that you’re one of the most inspiring souls I have ever met. I am forever grateful for your wisdom and insight. I use your teachings personally and professionally. I think of you often and always in awe for who YOU are! Fondly- Jennifer

  10. Dear Bruce,
    My husband’s journey with ALS closely paralleled yours (even down to a granddaughter born last week). He was not a man of many words, and your writings gave me comfort as they said to me what he could not. But, I knew he was feeling and thinking what you wrote. I wanted to thank you for providing me with comfort while I uncurled his fingers, bathed his paralyzed body, and loved him with all my might. He died in my arms before Labor Day, and amazed me, as do you, with such strength and grace. His last words to me were “God bless you.” I say them now to you — God bless you.

  11. You say that your voice is but a whisper; however,it projects loudly and clearly, full of the Human Spirit and the Holy Spirit in your meaningful journaling. Your song will never end, Bruce.

  12. Dear Bruce,
    While your blogs begin like a common afternoon walk with a friend, they go on to wend their way through all seasons of experience, and leave us awed in those more formless fields where we all meet, where we are truly whole.

    Such utter willingness to face and allow all of what is present with you, pierces through a way of perceiving that would keep the finer regions from view.

    Your honesty pares back that in me that would go the way of an old habit and remain unawake to my humanness, that would avoid exposures. Instead, being in the wake of your journey chastens me – to pay closer attention, and leaves me with moments of clearing and feeling more alive.

    Thank you so much for sharing… your bearing of ALS, your courage, and your beautiful movement towards healing in the face of dis ease. A comment slipped from my lips in the past, about how eventually it has to be transcended. Maybe I was having a hard time standing in it’s face. Maybe I was saying a prayer for you. Still, you, on the ready, said: “How?!”. If I may respectfully and lovingly observe, it seems plain that what may have been referenced in some manner of vacancy then, is not so veiled now. You are a light to us all.

    From Kahlil Gibran:
    “For what is it to die but to stand naked in the wind and to melt into the sun? And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?”

    Ever remembering you and Ev, gratefully so, Diane Mathew
    PS I absolutely treasured Matthew Sanford’s “Waking”, just as you thought. I hope you are still able to enjoy the yoga classes, inwardly if not outwardly.

  13. I am grateful for everything you’ve shared with us, Bruce, and honestly quite selfishly angry that your voice will be heard in ways I can’t access. Already, though, you’ve given us so much of yourself. I hate hate hate this dis ease. I suspect it will be hard for you to stop fighting and stop planning, but perhaps peace does await when the endgame begins. I know I won’t stop thinking about you.

    One of the best days in my life was the day I met you and Don in the classroom.

    Love, Collette

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