Editor's note: The word disease is written dis ease by Bruce Kramer in all of his blogs, which coincides with the title of his blog, Dis Ease Diary.
|Bruce Kramer, Ph.D.
Do you remember when you were in junior high, and someone “liked” someone else enough to risk the possible consequences of passing a love note, person by person, row by row until it arrived at the beliked person’s desk? Do you remember how the worst thing that could happen would be that the most “immature” kid, probably with the loudest mouth, would stop the progress of the love note and share it in bits and pieces, dribs and drabs of horrible embarrassment to the point where the sender wished the ground would open up and swallow them whole so that the nemesis, the beloved, classmates, teachers, the entire school would never be faced ever again?
It was a cruel lesson — the risks of declaring your love were not worth the embarrassment of the declaration — and by the time you reached high school, you probably learned to hide your emotions until you were totally sure that no one was watching and the person who was the object of your affection would actually return the feeling.
If you learned the lessons as well as I did, then the noise of safety and surety overwhelms your perception of love’s declaration.
It isn’t that you shouldn’t be careful. Sometimes it feels like some people exist with the primary focus of embarrassing others just for the entertainment value. But love notes exist. They are like spacecraft out past the edges of the solar system, or radio signals that continue to be received but not decoded. Even when it seems like nothing can go your way, the universe sends declarations of love, some quite general — a sunset or a moonrise; others very specific — a chance meeting or a message from the past. For me, it wasn’t until I became aware of how dis ease humanizes, that I realized how pervasive these messages were, how many of them were directed at me, yet how frightened I was that somehow or another some version of that loud mouthed kid was still around looking for ways to embarrass me with my own emotions.
If the fear of love’s expression isn’t dis ease, then I don’t know what is.
In the early days as I was slowly awakened by ALS, I marveled at how often people would relate their own dis ease in the face of my challenge. Their pit of the stomach narratives were often prefaced with something like, “Of course, this doesn’t even compare to having ALS like you do,” as if such a comparison would lessen the effects of their personal condition. Just in the past few weeks, old and new friends confided their own ALS lessons in practiced tones and whispers, sharing the loss of mothers and fathers long ago taken, years of anger and sadness and confusion so that in the hearts of my friends, their parents’ deaths might have happened yesterday. As they talked, as they cried, as they worked through the fact that some of them did not even know what was wrong with their mom or dad, or even in the knowing were not allowed to acknowledge that ALS was taking their beloved parent, I knew I could offer no meaningful comfort. But being in the presence of such tender and raw emotion, such beautiful openness, breathing the same air, listening as they worked their way through the years of pain, navigating their hurt into a more nuanced space that acknowledged how complicated life and love and dis ease truly are, was like receiving an encrypted message. And even though comfort could not be offered, it was taken by both of us in the courage of the expression.
If you can quiet the noise, love notes from the universe make their way desk by desk and row by row.
Less than two months ago, I truly believed that my time was finished. I was always tired, and I spoke in whispers, afraid that if my voice was any louder, it would overwhelm the holy act of dying. I planned my funeral, mustered all the energy I could find for one final push of writing, reframed my dis ease in the comfort of a life well-lived and the regret of a life cut short before its time. I was convinced this would be my last Christmas, my last anniversary, the winding down with the family and friends that I love. In that time, my heart became very quiet, and my hearing acute. Suddenly I realized that whether on the stage in front of a thousand people or in the quiet intimacy of my own thoughts, the love notes that before had to disrupt my awareness in order for me to perceive them, required no such violence.
In the quiet solitude of winding down is the ocean roar of love.
One of my greatest worries has been the hurt my death will inflict on those I love the most, and I now realize there is a love note for that. Recently a friend, out of the blue, reassured me this way, “I know you are worried that by leaving your loved ones in death, you will hurt them. And they will be sad, but it will be a beautiful sadness. It will comfort them when you are gone.” Where did this come from? We were just enjoying lunch together, when she offered this remarkable comfort. And had I not been so quiet, I would have missed its solace.
The love notes are there when you need them the most.
In the week that followed our program at St. Thomas, my fatigue and vulnerability, underscored by the frenzy of preparation and the emotional letdown that often occurs after such an event, led me to believe that neither love nor friendship nor beauty could possibly rise again above the gray fog pressing down upon me. And then I received a love note from a friend that I have not seen in 30 years. Her message ended, “You are dearly loved.” It was a reminder of how closely we had worked together, how openly we had shared our passion for the education of high schoolers in a small town in Indiana, how synergistic our relationship had been. But how did she know that such a simple statement would be the fresh wind needed to blow away the fog and fatigue at that specific time?
I am convinced that if we can quiet our inner tempests, the love notes carried by the universe will be present.
Sometimes, the universe sends you love notes — not frilly ones, never with chocolates and roses or dinner invitations, never sexual or overt, never seeking to embarrass the recipient. The universe sends you love notes at your most vulnerable, at your most beaten-down, when you are fatigued in the midst of enormous energy or alone in the midst of loving crowds, when you are sad in the midst of great joy, when you are amazed at the confluence of time and space and friendship and comfort. They arrive in strange clothes and surprising music, in cacophony and quiet moments. They lift you at moments when you feel crushed and at moments when you might only know despair. And it doesn’t matter if that kid in the back row reads them out loud or not. They are love notes, after all.
And for me, their message is clear: I am not finished, at least not yet.
This blog was posted originally on Dec. 16, 2013.
About the Author
Bruce Kramer, Ph.D., was diagnosed with ALS in December 2010. An educator for his entire life, he served as the dean of the College of Education, Leadership and Counseling at the University of St. Thomas in Saint Paul, Minn., until October 2012. Since March 2011, he has written the Dis Ease Diary, reflections on living and dying with ALS, and is featured in Minnesota Public Radio’s Living with ALS series. Kramer is married to Evelyn Emerson, a teacher, and he has two sons, two “daughters-in-love,” and a grandchild on the way.