Last week, Ev and I took dear friends to THE Thai restaurant in town, and then to experience the final concert of the Minnesota Symphony Orchestra season. Were I to use all the superlatives I could to describe this concert, you would think my description way over the top. Suffice it to say that the meal was spicy yet discernable, the playing of Appalachian Spring was sublime, and Carmina Burana was wildly sensual. You probably know the opening of Carmina—“O Fortuna, velut luna.” It has been juxtaposed to everything from movies to beer. But this night, it was tied to its roots, and we came out of the evening feeling giddy and inspired by the artistry of a great symphony orchestra.
Artistic training is great preparation for dis ease management. Pushing some part of the aesthetic-technical envelope is a real part of artistic experience. Through both failure and success, it is discovery of just how far you can go before you can go no farther. No matter how good you are, if you have come to your artistry through honest effort, you are keenly aware of your limitations. You know through practice just how you need to approach that next high note or that overlong one-breath phrase. Visual artists know the limits of their media, gauging fail-points in metals or weaving textiles beyond the strength of the cloth. Artists know the limits of their own techniques. Skilled artists learn how to turn their public’s attention to where they want it, to disguise their own technical limits through aural or visual sleight of hand. The arts are about balance—symmetrical and asymmetrical—and their lessons are not lost on me in the dis ease adventure.
The artistry it requires to focus on making a good life, while at the same time testing the limits of one’s technical ability, is dis ease management at its deepest and most elemental level. I keep rediscovering that every coin has two sides–for every moment that I shake my fist at God, there is the moment of “be still,” and for every time that I fear the great known future, there is the hopeful present that says, “This isn’t so hard, you can do this.” Herein is the trick that artistic expression has taught me. Human meaning is not an either-or proposition. It just isn’t that simple.
Ev’s beloved father, as he worked through the knowledge that his kind of brain cancer really only gives you a hundred days once it is visible, showed us an artistry in life. I remember how the cancer uncovered a remarkable part of the man, generally kept hidden by 1930’s ideas of what a man was. Suddenly, in the middle of the night, when sleep would not come, he revealed the 12 year old, helping his family survive the Great Depression by running liquor to local speak-easies. I could almost see his breath in the cold Montana snow, struggling to cover his tracks from the stills to the streets. Or in the fog of radiation treatment, he became the young Navy man, still standing on the deck of the USS San Francisco, still feeling the sea breezes in his face. Sixty-five years after surviving Pearl Harbor, he used the gift of survival and built a life and family of which anyone would be proud. Even though he wrote some of his story down, it just wasn’t the same as hearing it directly from him. In retrospect, I see his artistry in the face of dis ease.
Life with dis ease presents technical challenge, usually ignored until we consciously face it. For some, it is a relationship that careens out of control until it flies over a cliff and is dashed to pieces in some canyon of despair. For others, it is the quiet yet insistent winding down of their physical or mental abilities, until they look into the mirror one day with no recognition of the image that is staring back. For me, it is the twitches of muscles decoupling from the motor neurons that control movement and desire, as my physical gait becomes the shuffle and totter of listing posture and fatigue. These are the technical limits of dis ease, individualized yet collectively shared, coming to each one of us in their own way.
The trick is to divert the technical challenges into meaningful, human space. It is the task of the artist. How many of us have experienced a significant relationship painfully coming apart, only to find unity in the discovery of our own inner strength? There is the way that my 89 year old grandmother handled her own dis ease. Her body was so racked by arthritis and age that she would have to stand from her chair at a 90 degree angle and then slowly lift herself up to a standing position. “This is a lot more painful for you to watch than it is for me to do,” she would say to us, and with that humor in that moment, she became the most graceful person I had ever known. And of course, my brothers and sisters in ALS carry such fervent hope for others, even as their own hopes for treatment and cure dim. They encourage and reach out through cyberspace, when their voices have been taken, to urge others on while still early in their own dis ease process. “Be realistic, but know there is more than despair,” they tell us.
These are the works of the greatest artists of our time, and these artists tell us that dis ease is our fate, but not our fortune.
I recall an image from my old normal as I seek the artistry required to keep myself in a good space. The image comes from the workouts I used to do when exercise built capacity. Part of my workout usually involved standing on a bosa-ball, a crescent surface filled with air and similar to a half-ball. The bosa forced me to simultaneously maintain balance while performing some strength enhancing exercise. Now, the artistry of dis ease is its own bosa-ball, only without the benefit of spotters, and I do it for the sheer experience of not falling off. It is the mental balance I must strike, even as my physical balance diminishes. It is learning to meet physical challenge with mental toughness, to meet grief with joy, but also to meet hope with stark realism.
Just like the sublime and remarkable performance of a great symphony orchestra, each of us is called to find our own life-artistry. There is always a technical challenge beyond our ability, but the art is in the knowledge of our limits, and the other skills we continue to develop so that what matters is the beauty we can bring forth. Cyclical, just like Joni Mitchell sang it, “Death and birth and death and birth and death and birth,” it is how life goes. I believe that there is an artist inside each one of us, and that in the end, it will be our greatest artistic challenge to divert the audience from the technical limits, and inspire in some way a meaningful moment.
I don’t know if I will ever hear Carmina Burana, fortune waxing and waning like the moon, with such intensity and meaning again. Ultimately, the symphony is symbolic of the great artistic adventure, best shared in life and love, death and birth, with a little philosophy, and a lot of mental discipline.
All of us can do this. We just need to see the artistic within our fortune–waxing and waning–like Carmina.