If you have traveled with me for any time at all during the last three years, you know that I consider myself to be blessed. I don’t use the term lightly, for I know that from the outside looking in, ALS does not look like a blessing, even with the most creative of interpretations. And I don’t mean to diminish the daily challenges of living with a body that is breaking down minute by minute, hour by hour, little by little, small to big to massive to the point where nothing functions and all things physical must come from the beneficence of another person. But if you have traveled with me for any time at all, you know my blessings, the growth and learning they have fostered, and you know their source.

And you know, the lessons have not come easily.

In the first week after my diagnosis, I felt that the only space available for pain was mine and mine alone. It seemed logical and protective, but as I began to share my new status, two realizations became clear. ALS would be a very lonely affair if my only source of of energy would of necessity, have to come from within. As I felt the physical fatigue of ALS growing, as my energy waned, as I felt the strength of a life defined by physical activity leaking into a universe of stillness, as weakness of body threatened to define personhood, it was easy to believe that this new reality might frame the parameters of my soul. I was frightened. Within the first week of my new life in ALS, I came to understand that as I shared my new normal, if there was no place in my heart for the pain and weakness of others, then my own space would become smaller and smaller – angry and frustrated and locked in. I learned as I told my story, others would tell theirs. ALS granted us permission to share disease of body and spirit in a space that was strength and energy and synergy, huge and wide and oxygenated in colors strong and bold, transcending the weak and angry pastels with which our diseases sought to paint us.

The realization hit me like a bag of bricks.

For many years, I taught leadership and ethics. What I tried to teach was that what often looked like vulnerability was actually great strength. I tried to teach that no one person could lead alone. I tried to teach that humans need each other, and this often means we have to reconcile the different meanings we ascribe to singular phenomena. I tried to teach how to pay attention, keen and analytical attention to the context of any situation. But I also tried to teach that context could imprison the imagination, leaving only stale and tried but untrue methods for dealing with the situation at hand. In many ways, ALS took what I tried to teach and infused it 100 times over.

In the infusion is transcendence – vulnerable, collective, reconciling, attentive.

Saturday, my 58th birthday, I was given the gift of attending a lecture by the Dalai Lama. I have never heard him live. The gift of being in the room with such kind energy, such humanity, such loving presence, such wisdom was a gift of such anticipation that I could hardly contain myself, and yet I was also haunted by a feeling, fear, almost anxiety. What if my body would not allow me to go? What if my hands would not drive the wheelchair, or the ride into Minneapolis would be too much, or the weather too cold, or the snow impassible for a person like me? I began to close down the anticipatory space into a fear of losing something that I had yet to even experience.

And here is the first lesson.

It takes a lot of energy for me to go anywhere, and left to my own devices, my own energy, my own abilities, I probably would not have gone. My family rallied around me, driving both the van and my chair, the six of us together and me feeling the love. My friend created a path of no resistance, placing me on the front row, making the lines to get in and security checks melt away. I was so glad to be there, and the Dalai Lama was wonderful and wise and considered and realistic; his answer to the question, “In one word, describe the world today,” stirred my heart, I so get it. “COMPLICATED!” he said with hardly a pause. He was invitational and imaginative in both experience and vision, and he asked us to raise our humanity to the very best that we can.

But there is more.

At the end of the question-and-answer, his Holiness was asked if he would bless us. In reply, he stated that as a Buddhist he was skeptical about blessings, for blessings come from individual action and motivation. It was a beautiful answer, underscoring the message that he had just delivered – peace and human love begin with the individual person, and while I think we were disappointed not to receive a blessing, his answer was a call to beneficence and sufficed for everyone in the room. And then, he did something extraordinary. Instead of walking off the stage to his right as he was supposed to do, he stepped with purpose and direction to his left, holding his hand up to shield his eyes from the stage lights, pointing in my general direction and looking as if he wanted to greet an old friend. And he came to the edge of the stage in front of me, and when I realized he was coming to greet me, I began to cry. One of the Tibetan musicians behind me gave my daughter-in-law a scarf and he took the scarf and held it to his forehead and then said, “Meanwhile, my blessing,” and he gave it to me. Namaste. I sobbed and my family sobbed in the beauty and the blessing, and in that moment it hit me, again like a bag of bricks, that a blessing does not stop in its bestowing.

I hope this does not sound pretentious.

I can hardly speak about the moment, even now, many days later, without crying. You see, in my tears and the tears of my family the blessing was reciprocated. We received his blessing, and as we cried together, we saw our place in the universe and blessed the humanity to which we had been invited. It was as if every lesson I have sought to teach, that ALS has sought to teach me was infused 100 times more. And his blessing was a message, that all blessing comes from intentional action, and cannot be conserved if it is to remain a blessing. To be a blessing it must be paid forward 100 and 100 and 100 times over, so that each blessing invites us to further realize the beauty and complexity and messiness of our sprawling humanity. My teaching is a miniscule peek, and ALS grants a fleeting glimpse to this lesson. Dis ease is the lesson lived. And unlooked for, yet transcendent, tears framed a moment where meaning continues to deepen in its own time and space toward a more loving humanity.


20 thoughts on “Beneficence

  1. What a lovely, blessed post, Bruce. Through this dis ease you have been empowered to teach your truths in ways so luminous, you may never have imagined them.

  2. Bruce, we have been so blessed by you in both health
    and ALS. Do you thank one for a blessing?
    Thanks dear friend and loved one.

  3. Thank you for reframing the word blessing for me. I have come to roll my eyes every time I hear, “We won the game, what a blessing” or “I’m blessed to have such a great job.” The word has become trite and imbued with a sense of “aren’t I privileged above others by god.” I haven’t been able to put my finger on the source of my visceral dislike for the term other than it feels so vacuous. But in your essay I think I have found the response. Your experience was NOT vacuous; in fact, it was so meaningful that words fail. And my own tears followed that moment vicariously with you. That definition is what I’ve been looking for. Thanks, Bruce.

  4. What a lovely way of counting your blessings also in illness and expressing the emotions it brings for you. Your loving family and their support is also an important asset when faced with illness. Keep enjoying every moment! That in itself is an encouragement for others.

  5. What a wonderful experience for you, Bruce, We watched the Dahli Lama from beginning to end on the post Kirsten sent us, and saw him take the scarf and hold it to his face in blessing and then give it to you. Made me shed a few tears. I am so glad you were determined to go to see him. What a wonder person he is. May God keep you in his care. Love, Alice

  6. Bruce—

    I was fortunate enough years ago in Los Angeles to see/hear His Holiness the Dali Lama twice in person. The most memorable was the opening night of the Festival of Sacred Music in the Hollywood Bowl (I think it was 1984), with musicians from everywhere and beyond. There was some sort of impressive first part and then the D.L. came onstage, barefoot in his little, shawl-like garment, speaking in his spontaneous, good-humored style as it was last Saturday. For me it transformed this Bowlfull of audience present to hear Noteworthy Music into a big neighborhood gathering with a wonderful, sweet visitor who had come to love us. I get tears when I think about it. What a phenomenal global model of compassion….

    Fortunately I heard on the radio this noon the final part of Saturday’s program with the portions you describe. There definitely was some special energy present that drew him to see you and probably without any pre-thought, to come to you and offer a blessing that enveloped not only you but your entire family. What a treasure you all have in your hearts. Thanks so much for sharing it through the Diary…


  7. Thank you , Dr Bruce, for your, once again, moving and very poignant reflection. You touch my heart each time I read your posts! You are in my thoughts and prayers.

  8. Perhaps, the Dalai Lama, in all his Holiness, in all his Compassion, sought to bless, and be blessed by, a kindred Spirit, an Old Soul Friend, an Anam Cara.
    An intimate blessing, intimacy, in-to-me-you-see.
    A meeting and blessing, a reunion and recognition.
    Wonderful that your loved ones stood with you in the Egg of Light.

  9. Thank you Bruce for continuing to share your powerful insight and reflections. I hope you know that you are still teaching everytime you write. You words encourage me to ponder, pray and look for deeper meaning in my life. Even though we have never met, I am a richer person because of you. Thank you for continuing to make this a better world.

  10. Thank you for ‘sharing the scarf’. I’m with Megan – a richer person because of you. You are much loved, Bruce.

  11. Dear Bruce, I discovered your blog today. I lost a good friend to ALS in 2010 and I learned so many lessons from him, just as others are learning from you and your articulate essays. I was especially moved by this line: “To be a blessing it must be paid forward 100 and 100 and 100 times over, so that each blessing invites us to further realize the beauty and complexity and messiness of our sprawling humanity.”

    I’m compiling a list of inspiring stories of those who live with ALS and I’ll certainly add a link to your blog to my list. Thank you for your insights, courage and strength.

  12. Dr. Kramer,

    What a wonderful experience to be able to connect in such a special way with the Dalai Lama. Thank you for sharing with us. You are a model of courage and grace.

    Blessing to you and your family.

    Barb Mollberg

  13. Bruce, you may recall my old knee was recently replaced with a new knee. We are still learning to get along with each other. Yes, it hurts, dammit, from time to time, but it gives me hope for better times. Hope, just like your diary and this powerful story of your visit with the Dalai Lama. More you could hardly ask than what you were given. I can’t read this entry without tears either. Yes, truth makes me say that some is for what I have lost, but mostly for tears of joy for what I have learned from you. God bless you!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s