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.
I was privileged to offer the following last Sunday.
Claire and Matt sit in a small office in the neurological wing at clinic. The clinician has come to get me, just finishing up my own quarterly clinic visit, to ask if I would consider meeting them. I am so fatigued, but as she tells me that Matt is in his last weeks with ALS, that they read my blog, find my words helpful and would like to meet, the only human choice is yes.
I roll in, my daughter-in-law driving my chair, the clinician at my side. We immediately feel the desperate, resigned love, five people shaped by ALS in this moment together. Matt speaks through an iPad application, "I’m doing as well as I can.” Claire sits slightly behind him, her hands on his shoulders willing him not to slip away just yet. She holds it together through some superhuman effort, telling us that she had to take Matt to the hospital, and with a Do Not Intubate order, hospital staff were afraid they couldn’t bring him around. A chaplain had been summoned to pray over him and for some reason, when the chaplain touched Matt’s hand his eyes opened, he sat up and immediately started breathing again. Her tears belie her attempt at humor, “I have to find that chaplain to thank him, but I want him there the next time.” The next time looms over all of us in the room. “I am just not ready to let him go. Our kids are young, and when we went to the hospital, the oldest asked if his daddy was going to die tonight? I am just not ready.”
ALS crams a lot of story into short, breathless nights, minutes and hours and days and weeks of passion story.
Today is Palm/Passion Sunday. We Methodists tend to cram a lot of story into this day, partly because we don’t like to dwell too much on how dark the week feels, partly because we are so busy with lives that seem beyond the pale of such a story. If we could, we would probably compress the passion story even more, something along the lines of a tweet:
Jesus — triumph, Temple, Passover; Gethsemane — prayer, despair, arrest, denial; Pilate, Herod, trial; Golgotha — cross, cry, acceptance, death.
We Methodists cram a lot of story into this one Sunday.
In spite of its darkness, I have always loved holy week. It is the complete package, a story where each of us can find some element to which we can relate. Each of us knows what it means to succeed, perhaps even triumph. Each of us knows how passing such success can be, like turning a corner into sunlight only to become aware of the next storm on the horizon. Many of us have learned that success is nothing more than the question, “What have you done for me lately?” Indeed in my old life, no success was ever good enough because I knew that waiting just beyond the triumph, if I did not immediately move to address it, was possible and imminent disaster. Who among us has never felt betrayed or denied by friends or lovers, those we thought we could count on the most? Who among us has not perceived, even just a little bit, the lie that we are in control? Who among us has never felt so alone that we are sure even God has turned away. This is the stuff of life, blistering our emotional overlay into thick yet well-worn calluses of experience. Each of us knows how it feels to be helpless in the face of events. Each of us can point to some event where we feel like we have been figuratively, if not literally, crucified.
And each of us can understand viscerally, primally, the question, “Why have you forsaken me?”
You see how human the story is, this holy week? Jesus in the garden asking God to take the cup away. And here is something I believe. If he has become the human the Scriptures tell us, then he would not have said, “I will drink if this is your will.” Humans don’t start with acceptance, with “If it be thy will.” We have to hear the nothing voice on the edges of a cold wind, wrestle with God’s silence, balance in ever increasing despair and frustration between anger and sadness at the lack of perceived response. Jesus was alone in his loneliness, facing his own mortality, his own dis ease, just as we are alone in our loneliness facing our own dis ease, our own crucifixions. Christ’s loneliness screams betrayal and denial and anticipated pain. His loneliness breathes total despair. In his loneliness is his overwhelming humanity, longing to hear his father answer, entreating his father to break his heartbreaking silence. The cup of mortality will not be taken from Jesus, for now he is one of us, and mortality is our human gift.
“Will no one stay awake with me?”
When I was first diagnosed, I composed my own variations on the theme of “Take this cup from me.” The more I learned about what was coming, the more frightened and angry I became. What disease could possibly steal more completely the life that I loved, than ALS? To be stripped so naked of all the things I enjoyed — to hug, to sing, to kiss, to eat, to ride, to speak, to travel, to breathe — the cruelty was beyond my comprehension, and I could see a future where every loss would be another opportunity for anger and fear, slashing livid red streaks across my vision and into the very core of my being. No one could understand this, no one. And I would be alone. I cried aloud to God and I swear to you God did not answer.
I was so afraid.
Three-and-a-half years ago and dis ease has brought me to the precipice: Will I live into the life I have been given, or die in anger, frustration, grief? I don’t hear any answers from God, at least not at first. But then something happens. The answers appear, not as I saw them but in their own guise; first in a trickle of prayers and ” I love yous” and quiet solace as I begin to tell people, “I have ALS, we have ALS.” Then the torrent opens.
My brother tells me I can lick this, I can fight it. I want to argue, but then I realize this isn’t about me, it is about him. ALS has opened him to examining his own life, how he would react, what seems true to him — my disease and his mortality molded into deep reflection.
I don’t argue with him, I listen and open a little bit.
A healer calls me and says, “you are angry, hurt by your body. You must forgive yourself, forgive your body, it is only doing what it is meant to do. If you do not forgive yourself … ” She leaves the thought unfinished, allowing my imagination, my creativity to build around it.
I don’t argue with her, I listen and open a little bit more.
I have to tell my colleagues, the college that I lead, to admit my mortality and vulnerability and weakness and fatigue, I have invited them to believe that no burden would ever be too much for me, that I am strong enough to carry any load required. I must now lose that narrative and admit my humanity, and I am scared for I know that sharks circle at the smell of blood. I write them a letter. I tell them I love working on their behalf, being their Dean, that I want to continue until I cannot. And then I write the vulnerability — “ … If I cannot do the job, I will step down.” Like cascades of water pouring out on a desiccated soul, they respond — notes and office stop ins and meetings in the hall — love and support that could not have been written better into a Hollywood movie script.
Their love opens me even more.
I have to tell the choir — a group for which I still carry twinges of regret, even a little guilt, for stepping away from them in order to become dean of the college. Dan Johnson brings Evelyn and me into the room, and we tell our new story, and the choir listens, quiet, respectful, eyes on us and looking away. And then they stand and surround us and cry and touch and pray over us so that the only thing we can feel is love, pure love. A year later on an Easter Sunday, in a “Hallelujah Chorus” that I can no longer climb the steps to sing, they will leave the choir loft and surround us again, lifting our voices with their strength.
What wondrous love is this …
Six weeks ago, I attended a lecture with his holiness the Dalai Lama. At the end of the question-and-answer period, he was asked to bless the over 3,300 people in attendance. His answer was that he was skeptical about blessing, that blessing comes through our own individual action and motivation. It was a beautiful answer; through our actions we perpetuate blessing on and on and on, rather than waiting for blessing to happen. When the program ended, he suddenly turned toward me, walked across the stage to me, held a scarf hastily given to him up to his forehead and said, “Meanwhile, my blessing … ” And he handed me the scarf. For a week I struggled in confusion as people asked me, “What was it like to be blessed by the Dalai Lama?” I tried to describe it, but I knew my frame of reference was wrong. And then it dawned on me. It wasn’t about a singular blessing, him to me. It was a charge for intentional action. It was another awakening to open even more to the love that is all around us. Not, “meanwhile my blessing.” Finished and done, but “Meanwhile, my blessing … ” Unfinished, a statement to me, to us to embrace love, for love’s action and motivation and intent can and must be lived into, breathed into until you cannot breathe any longer.
The opposite of love is not hate; it is fear.
The greatest challenge of dis ease is that the moment fear overwhelms you, the moment you are dragged into your own soul wrenching vulnerability, is precisely the moment to open yourself to love. It is fear that causes us to feel estranged and alone, apart from God and from each other. To be closed off from love is crushing, angry loneliness, whether intentional or not. To be closed is to think that God only speaks with a voice — words and sentences and phrases and paragraphs. To be closed is to be sick with the reality that impending death presents.
To be open is to embrace your own great big messy humanity, to cry in sadness but not despair, to recognize presence in the emptiness of the bitter moment of truth, to be afraid but not fearful. Dis ease presents the choice of being open or closed , and opening to her lessons, her gifts, her challenges, is not easy. But dis ease clarifies vision, bringing sight to the blindness of what you thought you knew about living, light to the darkness of cynicism that life’s grief piled upon itself can foster. I know ALS is a horror, yet when fully embraced, it has taught me, it has revealed to me pure unsullied, uncontaminated, unbelievable love.
In my heart of hearts, I know that love never dies.
We sit together in a small room in the neurological wing at clinic. What can anyone possibly say in such a holy moment? Matt’s eyes implore me to tell what I know. I hear myself, words from another place, wrestled from angels in long and winding dialogues between sleep and wakefulness, “You will never be alone Claire, for Matt’s love will survive this physical shell of the body. You know this is true. Close your eyes and think of how much he loves you and how much you love him. That love will always be with you. Your children will know him for his love and his bravery and his courage. And they will know his love through you. There will be sadness, at first overwhelming, but as all of you move together with that love that you have known, that sadness will become beautiful, a source of strength, a place that you can visit and be made whole again.” We cry, Claire and Matt and the clinician and me and my daughter-in-law. We cry together at this most holy and human and loving moment, and out of our blessed silence I begin to understand the acceptance.
“God, into your hands I commend my spirit.”
This blog was posted originally on April 17, 2014.
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.