Time Traveler 2.0

This weekend, Ev and I watched the movie About Time. The plot is built around the idea that men in a certain family can travel back in time to fix things that they may have bollixed up the first time round. This premise is used to good advantage for the sake of comedy and poignancy, offering humor, a few tears, and mostly enjoyment. It isn’t the greatest movie I have ever seen, but we had fun watching it. And there was another reason that I enjoyed the movie besides fun with Ev. You see, I am intimately acquainted with time travel, for time travel is one of the great gifts given by dis ease.

It is a gift not to be taken lightly.

Imagine my surprise in the first year of my rebirth in ALS to discover that I could travel through time. Up until the very moment of my diagnosis, I’d always thought that time travel was impossible, that time was sequential and had to be experienced minute to minute, hour to hour, day to day. Einstein notwithstanding, it was my deeply held, almost sacred belief that once you have left, you can never go back, an entire life built on the idea that going back was impossible. And then came my diagnosis, and I realized that at some point not only could I go back, but that I would.

Since that time, I have spent a great number of hours traveling in time. You might call it remembering, but it is more intense than memory. Here is how it works. I close my eyes, think of something that brings me back to the desired time – a smell or sight, a sound or feeling for example – and then with a flutter of breath and eyes turned inward toward the space between wakefulness and twilight, I am back, reliving the desired experience as if it was happening for the first time. Only this time, because I know what is coming, I am able to pay better attention to things I might have missed. For example, in the births of my two sons, I had missed vital details, small but significant. When David was born, it was summer, with the sun streaming through the window of the hospital room, tendrils of comfort and grace in spite of our exhaustion and Ev’s pain. When I travel to that moment, I feel sunlight’s warmth on my back as Ev dozes in and out of worried sleep. We were so inexperienced, but I reassure her, I know how it ends and everything will be wonderful. When Jon was born, we walked up and down our Stavanger, Norway street, oblivious to the cold and Christmas day’s weak sunlight. I drink in the moment that as a contraction squeezes through my Ev, she puts her hands just so around my neck waiting for the pain to pass. There is nothing like the flutter and strength of her hand, and her eye catches mine with mutual strength and reassurance. I love revisiting the days our sons were born. The anticipation is delicious, the potential unfathomable, and their births are a joyful energy released into the universe over and over again.

You cannot tell me that this is not time travel.

There are significant consequences if you do not travel in time. Suppose you are duped into thinking that you can never go back, then you believe that life should be constructed with no regrets, no sorrow for what you might have done, no question about the direction you have taken. The psyche is constructed to learn and grow from mistakes, and if you see no future application of past regret, then you deny the regrets that have made you. You state to others that your life is exactly as it should be, and that all past experiences were necessary for the life that is. You wave a flag that says you regret nothing. You repress any sorrow for what you might have done but didn’t. You feel an overwhelming need to believe that you cannot go back, because if you acknowledge that you could, then regret and sorrow and questioning could not be so easily disposed.

I know this firsthand.

For such a long time in my life, before my rebirth in ALS, I tried to hold a “No regrets” philosophy for living. As seductive as the lie of curing disease, no regrets is a lie of arrogance and limitation. Since my rebirth, I have taken untold opportunities to time travel, to go back, sometimes just to experience it all again, and other times to seek what I might have done, what I should have done, what I wished I would’ve done. This has resulted in a sense of the present not defined by day or date or time, but by place – the grounding of my life energy beyond my feet and into the earth, above my head and into the heavens. Of course, I cannot time travel to what I have not yet experienced. I know that I cannot look into the future except to experience its implications from my past.

I have been granted the grace of regret and growth.

My greatest regret since my diagnosis was the diagnosis event itself. I allowed a situation to take place that was harmful to the people I love the most. It took me three years to figure out the post traumatic stress of this event, but I did, and once I did I knew I had to go back. This would be a different type of time travel, one that existed in the present and not in the energy between wakefulness and twilight. It would require every ounce of leadership skill, educative energy, and dis ease learning that I could muster. It would require that I go back with no expectations of the neurologist who rendered my diagnosis, and total expectation of myself who received.

So I made an appointment and met with the neurologist.

I met with him to make the case in every way I knew for a more humane, a more sensitive, a more holy and human act than what I had experienced. I met with him to say what I regretted not saying, that how one reads the script might be more important than the script. I met with him to help him see that great privilege granted in a life-changing moment requires far more creativity and imagination than is available in a strict yet blind reading of a perceived protocol. I met with him, and the result was predictable – he was defensive, and I pressed the advantages of ALS. Yet in the end, I hope that by meeting with him, he will hear my voice the next time and the next that the holy experience of diagnosis is presented. And I know that by meeting with him, I am better now.

The circle for me has been closed, and time travel even in the present has realized its potential.

Clearly I am not a movie critic, but I recommend About Time, especially if you can watch it with someone whose company you enjoy. I am not sure if I’m qualified as a life critic except I know that three years of ALS reveal challenges and gifts totally unlooked for. Time travel can heal regret and sorrow and questions of purpose or decision. It will not cure you of the first time wounds, but it will offer you healing the next time around, even if the first time was really bollixed up. You might experience one of the most blessed and graced periods of your life. You might learn to time travel even in the present.

And if you are really lucky, you can stroll a street, feel sunlight, and know unfathomable energy released into the universe over and over and over again.

From the Silence

Why has it been so difficult to write in the past month? I can think of all kinds of reasons, none of which seems particularly credible. Perhaps it is three separate infections, nothing much on their own but one after the other, creating iterations and variations on a theme of exhaustion through conditions that are hard to shake. Perhaps it is the deep freeze of late January and early February in Minnesota, when on the day when the temperature reaches the teens, good Minnesotans shed their clothes down to shirtsleeves and enjoy the balmy weather even though it is colder than sin. Or perhaps it is a new phase in the inexorable march of dis ease, a new beginning as I wind down to the inevitable. Illness, winter, dis ease, one is not mutually exclusive of the other, but the energy that each requires compared to the energy that I possess puts me in the deficit.

I am almost always at least a little bit tired.

This is new territory, a new geography where writing seems noisy, and I feel quiet, where two or three hours of napping on top of a good night of sleep is normal, where I am happy to just sit and think, to doze and listen to music wending its way in and out of consciousness. It is a space where the definition of living remains constant, but the meaning shifts and mewls – horizontal to vertical, cries to calls, life to laughter. It isn’t that I am not awake, alive to possibility. Rather, projecting outward seems less and less relevant, and aligning energy, above and behind, head and heart, body and soul, is a far better use of life force. And even though I occupy new space, there is still a consistency that I recognize as self.

I still love, I still feel, I still desire, I still recognize possibility.

ALS has its own gravity, strong enough that being in its orbit yields the realization that each repeated circle is always just a bit smaller, a hair closer to its sun, a flick of the wrist of the master fisherman reeling me in until I am caught and netted. That ALS affords any orbit at all is a marvel, for its main effects are an exaggeration of the laws of physics that keep all of us firmly grounded on the earth. As I spiral down, my perception is blurred so that I cannot tell whether the weight I feel is due to its mass, so vast that light does not escape its pull and so hot that purification by its fire is all one can expect from the encounter. With the completion of each orbit, my existence becomes more and more about being, less and less about doing, and the silence of the space roars its presence.

In this space, verbal expression seems so inadequate, words less meaningful. I find myself turning to music just to name the feelings, the experiences, the Godhead of my dis ease. More harmonic than tonal, more fundamental than overtone, more rhythmic than steady beat, it is music that defines the emotion – E major sunshine and brightness, steady and assured F fundamental, B-flat minor a sadness that hangs five times from the staff like crows on a wire. Words fulfill their meaning through phrases molding and shaping the line so that its apex hangs in the speck of time that defines temporal existence. And as with all orbits there is a point of no return, for it is only a matter of time before I will be consumed by heat and friction and cool atmosphere returning this body to the constant motion of rest and essence. I am assured and reassured by my faith in what I hear and experience.

And I am thankful.

I am thankful for a family as loving and supportive as mine. I’m thankful for the communities that have held out their arms and embraced me with love and tears and straightened fingers and blankets and peanut butter and music and the space to fall asleep. I am thankful for the opportunity to get to know great people in the medical field, compassionate men and women who walk beside me and heroically seek respite for me. And as strange as it may seem, I’m thankful for a life framed by true love and ALS allowing me to grow beyond the lesser person I could have been. When I consider the person I might’ve become, blind and ignorant and tone deaf in a world of art and knowledge and music, the gifts bestowed by my one true love and my teacher are beyond comprehension.

I know how this sounds. It sounds like I am resigning myself to death, even though the silence from which I write feels very much alive. But if I am resigned, then like everything else I have experienced through ALS, it is much better to be ready, to anticipate, rather than to pretend that existential stasis is actually real. Like preparation for the performance of a beautiful yet challenging piece of music, this quiet serves as rehearsal time, a human attempt in the great liturgy that frames life to try to get it right. It allows me and my loves to practice for the moment when quiet is the best gift that we can expect in spite of the noise that always frames the ending. It allows me conservation of energy and the liberation of spirit as I spend time, delicious and beautiful with friends. It allows me to breathe in the honeyed sweetness, the life presence of my one true love, unencumbered by the baggage we think we will require, supported by the truths we will actually need – love and life and laughter and tears.

In the three plus years since ALS framed my life, I have sought to be engaged fully with life as I knew it. Now, it seems more important to engage with life as it is. I hope this means more time with loved ones, both friends and family; more evenings with Ev listening to the local classical station, drinking in each other’s presence and knowing full well it will never be enough; more yoga with Jon and Kirsten and loving joyful visits with my granddaughter and David and Athena, family meals where I can barely keep up with the conversation; more naps during the day and deep sleep at night. I hope this means more time to think, to listen, to perceive that in the silence is life and death and life again.

And maybe, I can kick the last vestiges of infection, bone chilling cold, and dis ease.