O Fortuna

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.

The Time Traveler (Variations on a theme by Robert Herrick)

It is Sunday afternoon, with a hedge that needs to be trimmed, lush grass overgrowing itself and the annuals and perennials stretching up to absorb every drop of sun that they can get. Suddenly it is summer in Minnesota. A few weeks ago, when we were teased with the idea of warmth, the air remained raw and wet and cold. Today, it is as if the cold and wet could not possibly have existed. The shade is comfortable, and a breeze plays off my bare legs. I have foregone the orthotic to enjoy the unfettered dance of gentle wind and dappled sun, tree whispers and birdsong, all playing out in this little garden against the civilized hum of lawn mowing and traffic and commerce and recreation. In my State, this is a day that you can only imagine at other times of the year. In my state, it is respite from the weight of realistic calculation.

I think this beautiful day argues for the truth of Vonnegut’s famous line, “Listen, Billy Pilgrim has come unstuck in time.”

Listen, sometimes I come unstuck in time, floating between the sublime and the energizing, the feared and the fatiguing. Today is time travel, back and forth between imagery, both frightening and delightful. Today, I recharge, leaving the future to its own paths. I can understand how easy it would be to disengage from all of this. Dis ease does that to you. I can understand how you would want this to never end. Dis ease does that as well.

My thoughts have been so jumbled this week. We need some good news. It won’t come from the voyeurs in mainline TV news, even though they try with their feel good stories and cute pet tricks. I appreciate the attempt, but it is feeble in the face of dis ease. This week, I am laser-focused on so many friends who hurt, so many with conditions that threaten life and lived joy. The lump in the throat, the carried weight in the gut, the physical pain and the emotional devastation–all of these come to me as if their pain is my pain, their hope and fear is my hope and fear.

In time, I have watched loved ones wind down, and it is always their conscious engagement that goes first. The body has its own rhythms, and it takes it awhile to catch up to human intent. I remember my grandmother saying to me on the phone, “I don’t want you to send me anything anymore. I am done now.” It took her body three weeks to catch up to her conscious decision, and I still marvel at how she did it. In time, others will watch me wind down. I am unstuck—lumps and weights of hope and fear.

I wonder if I am more susceptible to time travel because the newborn summer is what I imagine when I need a space to recoup. Perhaps it is because these are the days I will lament most when they are gone. I cannot imagine living without them. Imagination is an irony that isn’t lost, for even though these days inspire me, that one act of imagining is dangerous, fraught with emotion, wonder and unknowable destinations. I cannot think of an activity as wild and in need of structure as imagining. I cannot think of anything that defies the discipline of mindful structure as the stream of consciousness musings that suddenly emerge into pictures of possibility, tidy yet unkempt, restful yet active. Time travel.

I float in this semi-conscious state. It is pleasant twilight, back and forth between naps and reading, reflection and dreaming. It is relaxation of the discipline of living in the moment that holds fear and grief at bay, allowing conscious vigilance to dissipate. Perhaps I will think on the loves of my life, or perhaps it will be the job that I still care so deeply about. Maybe it will be the all-important decision of a crisp beer or a nice Torrontes with dinner, or maybe it will be to decide not to decide. I know one thing. Even in this semi-conscious state, I have come to see the differences between what is really important, and what a long-lost friend used to call, “conversation while dancing.” Dis ease does this to you. You begin to pull away from the things that don’t feed your soul, or if you have to engage with them, you ask yourself why you are wasting this precious gift of life on such drivel.

In my own life, I find it harder and harder to take seriously the turf wars, the one-upmanship, the personal ambition over the common good, the street fights for (really, let’s be honest here) nothing but toys. Often now, in the middle of these pitched battles, I am not really there. I hover above them out of time and out of body. As the engagement in meaningless combat over this microscopic patch of temporal existence ensues, I ask myself, “What do we think we are doing? Do we honestly believe that in this striving of wills, we can acquire something that will hold off the logical conclusion, something that will result in ultimate victory?” In spite of the fact that we have proof to the contrary through the priceless relics of the dug up pharaohs of old, we still believe that it is possible to actually take it with you. Timeless and yet timed out, they could no more take it with them as we can, but the hubris of human pride is hard to shake. It is easy to become fearful, to think that acquisition is what will protect us from the finiteness of our eye blink on this planet. It is easy to believe that the person who dies with the most toys will actually win.

Don’t waste my time. I ought to be home collecting kisses from my one true love, celebrating this fraction of a microsecond in the history of this glorious creation.

Time travel breathes, and in its exhaled breath are the epiphanies of joy and love–the embrace of a friend, the smile of a loved one, the eye to eye exchange that says how much each of us is glad in this moment. So much, and it costs so little. In my heart, I know only too well that both my hopes and fears are in these breezes of time.

So I am breathing in hedges and grass, flowers and sound, the music of living. I promise not to go into John Lennon songs, or even to be tempted by the Temptations. It is no trivial thing to time travel. All those pasts are still in the concentric circles beneath our current place, and all those imagined futures circle out above us, shaped by the choices we make with the moments we are given. Listen…

I’m going to collect kisses now—past, present and future. It is the joy of gentle breezes, freedom from orthotics, and being unstuck in time.

The Ties That Bind

Dr. Jack Kevorkian died this past week. Probably, no other person forced us to ask questions about how we die like he did. Some credit him with giving people who felt they had exhausted their lives, especially those who experienced the physical ravages of dis ease, the choice to die with dignity. Others, including the State of Michigan, believe that Kevorkian was a murderer, although there are now three states that have laws allowing doctor assisted suicide, probably influenced by his work.

I have to admit to you that I am not quite sure what to make of Kevorkian. My old normal was framed by life with infinite possibility, and so then, he seemed like the right to die clown, playing the media like a cynical fiddle. In my new normal, I have come to understand why he has a quasi-hero status with many of my dis ease brethren. But the analytical side of me is skeptical of both portrayals. What really strikes me is the fact that no one has asked about why a doctor intent on the deaths of his patients would achieve such cult status. Absent from the noise is the question of just what kind of world would spawn a Jack Kevorkian. Obviously, there are metaphysical issues here that are too complicated for the typical news analysis, even when it is a well thought out retrospective on the man’s life. Kevorkian’s death makes me think about the ties that bind, the tethers of life that keep us going or in their undoing, make us want to stop. Kevorkian’s death makes me ask, is it fair to assume that life can become so unbearable that a human cannot see beyond a way to end it, or alternatively, is it fair to expect human beings to remain alive no matter what their level of suffering?

I would guess that you have some answer to these questions, and it probably has to do with quality of life. I would answer the same way. When I think of the number of men and women I have known who have overcome sickness, mental illness, pain and suffering, leaving this earth a better place, the list is impressive. Historically, I know specifically of composers such as Handel, Beethoven, heck even Frank Zappa, without whose works we would all be the poorer. Handel is one of my favorites. By all accounts, he most likely suffered from a bipolar disorder, yet he composed brilliant music and then sought to use it to help others. Up to the day he died, he strove to relieve the suffering of the poor through charity performances of his magnum opus, Messiah. In fact, the week of his death, he was rehearsing for such a performance. As oversung as is the “Hallelujah Chorus,” the world would be a far less hopeful place had Handel succumbed to his emotional and physical liabilities and not composed such a great body of musical works.

What was Kevorkian’s great work? His magnum opus–130 people ushered out of this world by his medical ministrations–was accomplished in a context of hopelessness. The infamous tape that he made of an ALS patient as he cajoled him to give it up was remarkably arrogant and stupid. On the tape, which he actually sent to 60 Minutes, Kevorkian almost tells the man that in his state of life, he has no living worth. I still have feelings of horror at how Kevorkian coerced this death. But I also hear a tiny critical voice inside that tells me that he was on to something and as our world redefines its relationship with dis ease, we’d better get our heads around what Kevorkian was really selling.

Dr. Death sold hopelessness to people who believed that they had no hope. He underscored our too easily held beliefs that a person with ALS, dementia, cancer or just plain, chronic, horrible pain has no real reason to live. In the name of death with dignity, he played on the ignorant stereotypes that lives with dis ease are only worthy of infamous endings. He played brilliantly to the rational death arguments—the financial or physical burden of life with dis ease, the pain of living with dis ease, the disability resulting from dis ease. Dr. Death knew the fears of his wider audience, and he underscored the logic of actuarial tables and not living beyond one’s time.

I will admit that dis ease has caused me to wonder deeply what it would take to wish for my own end. I know that many of my brothers and sisters who are far more affected by dis ease want to choose when they die, often fully supported by their families, friends and caregivers. I am way too early in my journey to comprehend their experience, and I would caution all of us. No one, not me or you, or especially Jack Kevorkian can truly know that edge of the cliff where life is hopeless and death is welcomed, until we stand upon its precipice. I think I get that much.

But here is the gauntlet that I would throw down. A culture of life has to meaningfully deconstruct the rationale of death. The burden argument could be removed through reasonable palliative care, costing the person what they could afford, not every last penny the family has. The pain rationale doesn’t work if people can consistently control the management of their pain. And while disability logic might be compelling, equally compelling is the fact that we have the ability to compensate for disability through technological means, and that ability is growing every day. I don’t mean to minimize the death rationale, and I recognize that each argument has a breaking point, but a culture that is about living encourages the relief of despair and fosters a sense of meaningfulness, no matter what. If each argument for death has a tipping point, then logically, there has to be the same tipping point for life. In other words, if we believe in responsibility to life, then we must meaningfully deconstruct the rationale of death.

When I was a kid, I used to love to play tetherball. There is a place in the game where, unless your opponent can stop the momentum, the ball will inevitably wind its way toward arrested motion due to its tight proximity with the pole. Early in the game, the ball swings easily both ways, but once it reaches a certain point, it requires great effort to stop it from speeding to its point of stasis. It isn’t an elegant metaphor, but follow it anyway. The way that we define our human existence starts almost from the first swing in the game. At a certain point, the momentum toward the endgame is almost impossible to stop. But the game is a lot more fun if you can play it with friends who seek to keep you evenly matched, who neither dominate your skills, nor give up easily. It is a lot more fun when there is a lot of back and forth, and the foregone conclusion of a quick windup of the ball to the pole is kept at bay.

For me, this means that all of us have to learn new ways to grow through the dis ease we most likely will face. All of us face the possibility of care for ourselves and others with dis ease, and all of us will be challenged by the windup of the dis ease game. I just think that it makes sense to try to keep the ball in play in a way that is good for everyone, keeping the play even so that we don’t become overmatched although our skills and abilities might falter. Eventually, everything winds up to its logical conclusion, but it doesn’t have to be due to helpless hopelessness. There may be other rules we could bring to the tetherball game.

New rules bring other choices. We can choose to follow Jack Kevorkian, cut the tether and drag the ball home, or we can choose the new “Hallelujah Chorus.” Above all, the choice is in the ties that bind.