My friend Kerry gave me a gift this week–Jessye Norman (what a voice) singing sacred music. He made sure that I knew that Track 10, “Great Day,” was a spiritual that his high school choir could rock out on. Lest you think Kerry is some raving religious guy who thinks I need spirituals to listen to, then let me remove that perception. He is one of those people who doesn’t seem to have a lot of need for churches and religion, probably a so called “secular humanist,” whatever that means–but he is a deeply spiritual man. And the gift—Jessye Norman—was a thoughtful gift, a gift to my spirit, something that lifted me and caused me to think about the gifts of dis ease. Those come in bundles—bundles of clarity, urgency and Joy/Grief. I know there are others, but these are the ones that speak to my spirit today, and because of my friend’s gift of Jessye Norman, I want to blog about the gifts of ALS.
There is a clarity that goes with a diagnosis of ALS—clarity of thought, purpose, feeling, joy and yes of course, grief. Most of us can imagine how a pronouncement like “you have ALS” would affect us. What is harder to imagine is the sensual experience of such a thing. My ears constantly sing to me, my eyes see through walls, I taste sunrises, feel colors. The clarity of love is so intense, I almost have to check it like it is an energy surge. And I’m not talking about the symptom of extreme emotion (a symptom of many with ALS). While I admit that my emotions run stronger now, it is the blurring of the lines between my senses that offers such incredible clarity. I KNOW what is important now. I know that every experience has multiple layers, each to be felt and analyzed and kept. The auto-pilot of living from event to event is completely gone. Pay attention! pay attention…. If I swim, it is like it might be my last time. If I eat, it is as if it was my last meal. To love, live, breathe, sense, and experience the tiny moments of this life has taken on a meaning I can only relate, but not adequately explain. But it is clear to me.
And then there is the urgency. Many of you have heard me liken ALS to death by a thousand papercuts. I try not to dwell on this aspect — the progressive weakening of my body, but I know it is there. This causes a sense of urgency for this life with these capabilities, in preparation for the next life which is less physically able. It isn’t enough to work. It isn’t enough to love my family. It isn’t enough to connect with friends. It needs to be done with passion, abandon, love and light. There is no time to hold grudges, be afraid and not forgive. There is no time for games. There really are places to go, people to see and things to do, and time is wasting. There is a gift of joy and passion, love with abandon, friendships that aren’t afraid to say “I love you.” I just don’t have time for bullshit anymore (many of you who know me wonder if this is a change). This urgency is not like when I was younger. Then, I admit that I was insensitive, impatient and arrogant as only youth and inexperience can be. I know now that urgency is not abrupt. It requires space. There is no reason to be abrupt or hurtful, and there is no reason to be less than caring by naming truthfully what is in the room. That is the gift of urgency, and I am thankful for it.
Which leads me to the gift of what I have come to call “Joy/Grief.” Let me explain with an example from this weekend. A long lost friend/teacher and I haven’t been in touch for a number of years. He had been trying to arrange a time when we could talk by phone. I was supposed to call him on Friday, but I didn’t. I just couldn’t. It seemed so heartless to carry on the conversation along the lines of, “How’s things? Are you still doing (fill in the blank)…?” “Oh not much. Diagnosed with ALS.” So I wrote him yesterday morning and asked his forgiveness for not calling, and gently gave him my new framework. By yesterday afternoon, I had received the most unbelievable note from him. In his email, he talked right up front about being devastated. But then something funny happened in his note. He remembered my early years as a music teacher, and specifically my bringing my Franklin kids to perform Dido and Aeneas at Ball State University. He reminded me that when we got to the chorus, “With drooping wings, ye spirits come, and scatter roses on her tomb,” at the end of the opera, he had suggested I turn around and conduct the audience. He had brought his madrigal group, who knew the piece, to hear our performance, and when I turned around, they sang with us. He spoke of his devastation, and he remembered unbearable joy in music as 60 high school kids and 25 college kids joined voices on what is probably one of the saddest pieces ever written. What a joy to receive that memory, and what grief hung on every word that he wrote. This is what I mean by Joy/Grief. The two are inseparable, contradictory yet harmonious in this dis ease existence. Joy/Grief is a gift. It is a reconnection soul to soul, even as physical disconnection is taking place.
It may seem funny to speak of the gifts of dis ease. I know I would probably not have thought to think this way, even three months ago. Kerry’s gift of Jessye Norman has reminded me that gifts come unlooked for. There are gifts of ALS, for which I am most thankful. They have given me the clarity to know that this life is one that is passing, that if you pay attention to the inner gifts, there is amazing grace, and that friends can still surprise in wonderful ways. Even as I feel my body breaking down, the clarity, urgency and Joy/Grief are too sweet to pass up. They make the hard parts easier, and they remind me that even if there was a world without ALS, there is a need to live the gift that life truly is.
Thanks for listening. Yours in ALS,