It is strange to me that as my dis ease progresses, or more accurately—my body regresses, my love for life is more focused. As you know, last week I melted down in the great, bubbling cauldron of ALS. I needed to come clean, pick off the scabs, and bleed the wounds. I was hurting inside and out—a perfect storm of emotional weakness and physical breakdown—and I required the full embrace of the dark fog and white heat that anger and grief bring. I needed to acknowledge the weird fragmentation of staring at a shortened life, while simultaneously attending to the pinpoint accuracy of knowing death. It was an out of the depths moment that left me exhausted and fatigued. And amazingly, despite the loud and anguished roar in my voice, another voice crept subsonically into my space. When I was yelling my loudest, something quiet emerged just below the range of human perception. Urgent and strong, soft and insistent, this new voice asserted its loving empathy into my consciousness. Now, as inadequate as I feel to the task, I need to share the love so to speak, and give you a hint of that voice that re-centered me.
How do we learn about love? For me, the experience has been a strange set of variations. I grew up, keenly aware of the difference between love professed and love demonstrated. I tried on different loves as most of us do, casting aside some, cast aside by others with callous indifference or wrenching awareness, swirling in the laser beam heat of firsts, and somehow, with very little planning, and probably less skill, arriving at a place where love became a blessed way of life. I learned that loving is wonderful and delightful, and sometimes you love so much that it crushes your insides. Stand in a hospital room with your two-year old son and listen to doctors suspect leukemia, and you know what I mean (thankfully it wasn’t). For me, nothing brings this crazy jumble home more than the experience of sharing my love of life with the loves of my life—my partner in crime Ev, my sons Dave and Jon, and now paying it forward with the loves they bring into their lives and subsequently mine, the remarkable young women that have become a part of our collective, conscious whole. God it is sweet to breathe them all in, to hold them in my thoughts and be in their presence. It is a honeyed whisper that tickles the ears and blows a breath of life bigger than anything dis ease can do. Last week’s meltdown removed the dust, dirt and accumulated grit and left these loves gleaming in the aftermath.
Then of course, there was the revelation of love from friends. So many of you wrote with variations on a theme of “Whine on brother, whine on!” Some of you went so far as to say I deserved to melt down, that it just isn’t natural to go through dis eased living without resenting the prizes won in the great game of “ALS Sucks.” Some of you literally stepped up beside me and said that if I was going to curse God and shake my fist at fate, well you’d like to be there shaking your fist in solidarity. I guess it just surprised me, but why should I have been surprised? The love that you expressed, the care you revealed, the permission you gave was like a healing balm that I’d bottle if I could. It isn’t that I miraculously made peace with my dis ease, but the loving connections with friends helped me stop feeling sorry for myself. Even more importantly, I found myself reflecting on how lucky I was. It was another variation on how much I love this life-gig, and I’m just not ready to give it up yet. It was a gift of insight that broke through the outsized blindness dominating my senses.
Then there were the gifts so many of you sent. A friend from long ago shared the remarkable Caring Bridge blog of a former student of hers. I need to ground the context here. In every school I have ever been, there are former students that, when mentioned, bring a mist to the eyes of their teachers and a reverence for just how remarkable young people can be. In 1993, I remember watching faculty and students drop everything when a young graduate from the year before would return to Bangkok to visit with family and friends. Now a Mennonite pastor, she is writing her rapidly metastasized melanoma, three small boys, loving husband, and her community into her own dis ease diary. She acknowledges how fleeting this life-moment is, and she speaks her fear that her boys will not have her for much longer. Her love for life seeps out from the everyday experiences that go with balancing seemingly irreconcilable differences–radiation treatment with mothering a two-year old, excessive fatigue with the life energy of a loving husband, caring for a community with the care of her community. Her words are wonder and awe and humor and crushing sadness and anger. Reading her thoughts centered my thoughts. Hearing her voice her dis ease, opened me to the song of my dis ease.
So let me share something with you, something more intimate than any maelstrom of self-pity and anger that I could muster on a blue October day. Deeply spiritual and achingly human, a paraphrase of the great mystic George Herbert, I was reminded that, “Love bids you welcome.” For me, the white heat of cursing God and fate, meant to disabuse humanity about who I really am, revealed instead the holiest of loves, and dare I say it, the holiest of lovers. “Lover,” literally “one who loves,” has all kinds of other illicit meanings. Too bad! The lover’s clarity for me this week was the God-kiss from friends, family and strangers, reaching through the fog, and hanging in my skies, like a clear autumn sun. I emotionally dumped all of that stuff thinking that I was writing with permanent marker on my soul. Instead, it washed away like dust off my hands. And I think, that is the point.
You are lovers, as am I. In the pain and suffering that reminds us just how human we really are, is a voice urgent with its message of reassurance. For me, the centering prayer of a brilliant young woman seeking to remain a vital force in the lives of all she loves, reminded me to listen for the voices that live in all I love.
And I swear to God, those voices whisper, “I love you. I love you.”
Loving life is bittersweet. As the weakness of ALS careens recklessly through my body, caressing it with the breakdown of my physical being, the intellectual and spiritual strength of ALS calls my soul to listen to the voices vital to this life. It asks me pointedly, “Are you open to love, or are you so angry that you will not feel? Do you want to live in the fog of self-annihilation, or the clear morning sun of the love that surrounds you?” I realized that what I said in my hurt and grief and anger and pain, all of it was because of how much I am in love with this beautiful life. And I realized that the fog surrounding me only needed the burning clarity of a meltdown to reveal that the love in my life was always there, always present, always whispering its strength and encouragement if I would only pay attention. You can call it whatever you want—God, the Buddha, energy and chakras, good friends on an autumn day—it is a voice that sings life. And sometimes you just have to be angry enough to hear it.