I have been doing a lot of thinking about time recently. I’m sure that part of the reason is that time takes on new meanings when you are told that the average time that someone with your dis ease has, is three years. And of course, the fact that Ev and I celebrated our first year of dis ease together (we went out to eat and had a lovely time, thank you) was also a time focal point. So it is no wonder that time has been on my mind. I think it is the confluence of information, anniversaries and just the weird kinds of dreams and thoughts that are a part of my new normal day-to-day that makes time a very different phenomenon than before I knew I had ALS. I realize that this may seem esoteric, overly analytic, or even too mystical, but time has become a central part of my being, and so it was bound to show up in these journeys of self-discovery.
I have lived with dis ease for some time now. For me, time feels like big, looping concentric circles that disrupt each other, kind of like gravel and stones thrown into calm water. Each set of waves is like so many consequences of the act, and these consequences get all mixed up in each other. Some of the stones that get tossed are small, and their waves slip under the giant kersplooshes of the largest rocks that land in the pool. And of course, each day there are the waves caused by the huge stone of dis ease, cast into my personal waters. Creative, disruptive, chaotic and yet strangely ordered, I blink and feel the stone of a year ago, as if it was today. I blink again, and I can see a year from now, the stone continuing to emanate its waves and splashes on my daily routines and my nightly dreams. These sights merge into each other with dis ease as the common denominator so that time is not day-to-day anymore, and the gift of dis ease is the realization that it never was.
I have come to realize just how very human the construct of time is. We often talk about giving the gift of time; we say we’ll get it next time; we are afraid we will not have enough time; we let time get away from us; we speak of not giving someone the time of day as if it was the least thing we could give; we time our performance, our speed, our technique; we measure our existence by years, months, days, minutes, seconds—all arbitrary parcels of time; we speak of slowing down and speeding up time; and when some significant event happens, for example, a dis eased moment that changes our lives from that time forward, time takes on whole new meanings as we question the time we have spent, and ponder the time we have left.
If we are paying attention, when our lives are significantly impacted, we intuitively know that the big events—the weddings and funerals, the deaths and births, the new job and the job lost, the collective shock at some natural or human made horror, or the quiet realization of love that transcends all experience of love before—will ripple throughout conscious and unconscious existence in a way that will change our perceptions, our interpretations of what it means to be alive from that point onward. Flowing out into our lives, the big events create new peaks and valleys for us to scale. They inspire us to seek new ways, and they frighten us that the old ways no longer carry the same meaning. And we pay attention to these life events, remembering them as if they were yesterday, conjuring their imagery with the slight closing of our eyes and reaching into the depths of our souls for the keys that unlock their vision. We know our own roles in these events intimately—we can replay our part in each memory as if we are standing there. It is a way to make time stand still.
Ask any Pearl Harbor survivor (after seventy years, there are so few left), and they can still bring the collective energy of that moment forward to the present, and at the same time, exist in the moment as the teenagers and twenty-somethings they were in 1941. This is time standing still. It is time’s waves splashing on the collective experience of an entire world. Or speak with the parent who hears that their child has dis ease for which there is no cure. That moment changes them forever, altering their interpretations of past experiences with their child while determining their future steps as they seek a way, any way to change the trajectory on which they have been placed. The moment of diagnosis stands still forever.
When Ev and I were much younger, between the births of our two sons, she miscarried. On one level, miscarriage is a common medical event that carries its own pains and symptoms and subsequent treatments. On another level, I remember both of us lying awake the night after, holding each other and crying softly, grieving the hopes and dreams that pregnancy held for us, dashed in the physical realities that this one was not to be. And then we moved on.
But we didn’t. I don’t know exactly, but that event made me look at my first-born son differently. Instead of interpreting pregnancy as something that happens easily, he became the miracle that he is. Instead of the loss of his birth day in the backwaters of my memory, his birth dropped, like a stone into the currents and pools of my present all over again. And when our second son was born, I was prepared to attend to the event like it had already happened. The dis ease of miscarriage made the space of time a concurrent set of ripples and waves with consequences great and small. I still carry that night, that realization with me, and it comforts and jars me at times when I am least expecting it. Time stands still.
If time really moves only in a sequential way, then we are born, we live and we die. But if time is, as my new normal allows, concentric, circling in and out on itself, then we ourselves are the disruption to the placid waters of existence. I find comfort in this odd realization. I realize that the small events that I experience now are influenced by the ripples of my past, and that they will continue to play out in the future events of my life, as if the future was a present space.
It makes everything mean something new. It means that we cannot take back, but we can give forward. It means that our actions really do have consequences; that we reap what we sow even though at the time, it may not seem so. But above all, it means remaining conscious to the fact that by existing in this river of time, just by existing, we alter the flow ever so slightly. As time’s waters surge around us, everything that results in this moment is clarified through attention or obfuscated through lack of awareness. Everything from this moment on is disrupted and given the meaning that we assign it.
It is December, Advent in the Christian calendar. My advent in dis ease will always be associated with this season. I close my eyes and hear the beautiful music of this holy time. I feel the breath of a choir singing the most magical “O Magnum Mysterium” in candlelight, and my life is altered by the magic. I can hear the floating mystery of voices singing “Gloria in excelsis deo!” and my hearing is altered to perceive the sounds above the sounds, the music above the music. The music is timely, and it is timeless. The music is how time works, and it has become the vision that dis ease gives me, as long as I pay attention. It was written before I was born, and it will remain after I die. I try to live now with the knowledge that the big rock of dis ease tossed into my still waters, emanates both out and in, and the space it created before the water rushed back to fill it, is always with me. But it is only one splash in a life, not my life entirely. Just like a marriage does not a couple make, dis ease does not a life define. And there is the beauty of time standing still.
We all get to choose what we do with our time.