What Would You Do?

I think I am one of the lucky ones. I have a great family, a wife that I absolutely adore, kids that are incredibly supportive, each of them with true loves of whom I totally approve and cannot believe how much I love. And their loves have beautiful families that we have come to love, enjoy, and respect. And then there are my own in-laws—they write me, cheer for me, send me little blessings when I’m not looking for them. And I have a brother who is one of the angels walking on earth. Fair and kind, compassionate and honorable, married to a great woman, he is a rock for me—he cusses out ALS when he knows I won’t, and he calls me up just to ask, “Whatcha up to?” I know so many people who look at family as a millstone, but for me, it is an indication of the luck I carry.

Then there is my work. I work in a place that values the power of ideas and expects you to put those ideas into everyday practice, testing them for their efficacy and their ability to make things better. I love the work I do. Every day is an opportunity to create growth and understanding, to build bridges where they have not existed before, to think about the common good and to act upon that. It is a place where the power of humanity is forged on the ideals of faith, where reason is valued, and betterment is possible, if that is what you want to do. How lucky is that?

So ALS is an anomaly for me. Yes, I know that those of you who know different parts of my history could point out some very tough times, rough areas and patches where you knew things were difficult. But my experience of these, as I look back on them with the power of hindsight, is that here were great life lessons, strengthening my core with adaptation and coping and rebuilding learned from the chaos. I have been blessed with resiliency in the face of the hard times, and laughter in the times that were good. ALS is different, because there really is no way out, no grand plan that will just get us through until we have waited out its progressions. This experience is the big one—the one where you know the basic plotline, the ending before you read it, and you carry that knowledge with you no matter what.

So I look at the good times and bad times and realize that it was all leading up to this. It is like playing Watson the big IBM Supercomputer, in a chess game that you could map out with multiple scenarios and schemes, only to know that each path leads you to being checkmated. While such a conclusion is disconcerting as it calls into question our very American ideal of winning, it leads me to conclude that this probably isn’t about winning at all. Hold on to your hats America triumphant! This one is a hard one for us to get our collective heads around, because for all the vaunted power we think we can project, there is this one fact, that lurking in each one of our futures is the supreme knowledge that we don’t get out of this one alive. This realization is bewildering at its very best. It raises questions about personal anomalies and human challenges. It puts us on the spot with dis ease, and it brings us closer and closer to our mortality. As one of my dear friends reminded me, the proper response should probably be Sean Connary’s line, “What are you willing to do?”

For some reason, and I cannot tell you why, I have always known that each challenge, trial, and tribulation was preparation for the next challenge, trial, and tribulation. It was strength training in the aerobic exercise regimen of life. It was not meant to be gotten through. Rather, it was meant to teach that more complexity, harder challenge, bigger consequence was on the horizon. The next big thing would push me farther than the last big thing, even though at the time, I couldn’t imagine mustering the ability to get through any more than I already had.

I am telling you this, because it helps to explain numerous moments of grace revealed to me through dis ease. I have responded inconsistently by either writing “correctives”—some sort of whining moaning complaining lashing out and feeling sorry for myself—or by being blown away by wonder at the centeredness, the closeness of friends and family, the emotional engagement, the utter human gratefulness for another day of life. Both of these responses are a way of bringing balance to the equation. I think this has to do with a fundamental human discomfort with the grace and gifts that I now perceive beyond what I could have known before. It is a big responsibility, to take on mortality with some semblance of acceptance, with some lack of fear, with some modicum of awareness of this most human of God-given gifts—the rebooting of humanities’ hard drive as Steve Jobs spoke of it—and to go ahead in spite of the ending. And I guess that as I deepen my understanding of the very real presence and presents that ALS has bestowed upon me in the last year, I get more and more comfortable with the mortality, less and less afraid of the final destination, and I am grateful.

So, what would you do? These realizations of the journey, made much clearer by the stark fluorescence of dis ease, give us remarkable options. I don’t have the wisdom or the energy to judge the ways that each one of us chooses to go, but I do have the privilege of walking (actually rolling now) the path with dis ease in a way that slows down time and allows me to process the different pathways more methodically. Each of us is on this path, and each of us makes choices that will determine our fitness for the final trial. Like exercise, the challenges that confront us throughout our lives, can make us stronger, more ready to handle the next challenge and the next and the next. And like physical challenge, there is always something out there that is bigger than us and beyond our capacity, our capability. We are given multiple roads through dis ease, just like we are given the choice of how we care for our bodies in health.

My choice, somewhat unconscious at first but very conscious now, has been to pay as much attention as I can, to share what I learn—not as the end all and be all—but as one person’s experience of the journey, documenting the physical regression and the emotional gain, the highpoints of engagement and the lows of loss. And many of you recognize the experiences, either because your own dis ease is quick and obvious, or because it is slowly gnawing at your core, creating doubt about what this life might mean and where it is heading.

I cannot tell you what to do, how to think, where to travel in this life, and it would be presumptuous to try. I can tell you that dis ease has given me gifts unlooked for, in love and hugs, tears and laughter. It has not been easy, but it has been entirely worth it. I can see challenges getting harder—tomorrow, next week and next month. But I think I know what I will do.

With a little bit of luck.

Time Stands Still

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.

Happy Anniversary

There is so much to write, and I have really wanted to do so but for some reason, in the past few weeks, my writing energy has been intermittent at best. There is a part of me that says it is because I am not disciplined enough, that I need to get my head back into the game. But another part of me wonders if it is a subtle manifestation of the progression of ALS. I cannot deny that it gets harder and harder to do things that used to be very easy—not from the motivational point of view, but more from the physical energy required. I would guess that both my sense of discipline and my dis ease progression are true reasons, but even truer is the synergy of emotion and realization and just plain old exhaustion that comes with an anniversary. For that is where I am. One year ago, I was reborn and immediately baptized with the holy gifts of ALS. I don’t know about you, but anniversaries always cause me to reflect, and this one, spiraling into so many other things—marriage and loss of loved ones, physical transitions of bodily loss, a construction loan to build the last place I will live, the physical paraphernalia of dis ability—I don’t want to sound maudlin, but this anniversary is significant.

So how does one mark the anniversary of something like the day of dis ease diagnosis? You can imagine the swirl. It is truly an out of body experience. One year later, I still hover over the moment of truth, visually aware of the tendrils of clues curling their way from my memories to that neurologist’s office. I see the walk when Ev said my gait sounded funny, the day I stopped riding a bike to work, the evening I fell at Heart of the Beast, the fall in New Orleans, and–exactly one year ago Tuesday–the diagnosis appointment itself. All of these things play over and over in my mind, confusing themselves with my present condition and future fears. I probably shouldn’t even turn my attention this way, but I have always celebrated anniversaries, so why should this one be different?

One of the nagging questions I ask myself is about the role that naming took in my progression. I asked Ev if she thought I suddenly “got worse” once I had a name for my diagnosis. She reminded me that she really took it on the chin when we got the news, almost immediately getting sick and staying that way for the better part of a month. I don’t need to be reminded. She privately worried, spoke fears only to the walls, constructed secretive Google searches matching symptoms with dis ease names, just as I did. Now, there was a name, an identity straight out of the 1930’s, and the emptiness spawned by a neurologist unable to comprehend compassion except as something that might get in the way of a carefully crafted medical identity. Why ask if naming made things worse? It seemed to do so at the time. I felt that with the name ALS, I was suddenly hyper-fatigued, hyper-weak, hyper-vulnerable.

I suppose that implicit in questioning the role of naming in dis ease’s progression is whether the ability to deny actually helped me to hold the symptoms at bay. I wondered if the discipline of holding it together was let loose by the diagnostic pronouncement, breaking down the denial and opening the floodgates of hyper-symptoms. It is a plausible hypothesis, don’t you think? We know the mind can do powerful things. This is the whole basis of the placebo effect. The mind convinces the body to take some measure of betterment, because the betterment is supposed to happen. Sometimes I wonder if my belief that I was just dealing with stress or a pinched nerve had held physical symptoms off. Did they suddenly appear upon my participation in the great naming convention of ALS diagnosis?

These questions have come back to me in the past month, as I have made huge changes in my environment and my equipment necessities. Two weeks ago, I took delivery on a loaner powerchair to evaluate the features I might want when I order my own. Yes, I have graduated from scooter to wheelchair. I use it to take me everywhere, even parking it by my bedside when I sleep. I’ve scraped every door opening in this too narrow apartment as I learn to steer from the back wheels instead of the front, and except for getting past the door of the way too tiny bathroom of our temporary quarters, it takes me everywhere. My wonderful administrative assistant reorganized my workspace so that it is much more open, easily accommodating the pathway and turnaround needs of this vehicle. My brother and sister-in-law helped us by buying our Subaru, allowing us to put enough money down on a used wheelchair van to afford the payments. I’ve learned the not so intuitive van driving techniques associated with hand controls. So, I am really wheelchair dependent now, with all the accompanying implications and inferences. And again, it raises that chicken – egg metaphysical question for me. If I had not acknowledged the need for the chair and actively pursued it, would I need it as much?

To Ev’s credit, when I engage in these bits of circular meta-cognition, she patiently reminds me that there was very little difference in my physical manifestations from before to after the diagnostic moment, that if anything, I probably deny the symptoms far past the time when I should be ahead of them. But I cannot help it. There is this part of me that still wonders if it is all in my head, if I am just imagining this total body breakdown, that I could control it if only my mind was more disciplined. Admit it, isn’t it intriguing to think that we could exercise so much power over our health by just casting out the thoughts of dis ease? Could it be so simple as to agree to fight dis ease by just refusing to name it?

Just in case you are wondering whether I am losing my marbles, there is a major part of me that says, “Horse Pucky!” to such perseveration.

Yesterday, I was offered Heaven is for Real, the book by the father of a little boy who had a near-death experience. While his story is very interesting, I declined the opportunity. Heaven is what it will be, somewhere in the future, and I don’t need the thoughts of an 11 year old to get me there. I have framed wheelchairs and walkers, paralysis and fatigue into the present. It allows me to do my job, love my kids, remain hopelessly head over heels crazy about Ev, and claim the party, so I can cry when I want to. It has refined me, forcing me to see my body as the dross that it is, and focusing on the refiner’s fire that melts away physical capacity so that if I can stay focused, I see purity of light and spirit and human love. Living in this moment is the real discipline, not denial of physical manifestations.

It is the first anniversary of my rebirth into dis ease. Both Ev and I have progressed a great deal since that day. Perhaps you have progressed as well. I am sure that every once in a while, within the narrative of the slow motion, oncoming, speeding train wreck of ALS, you recognize your own dis ease. For that, I both apologize and am thankful. I hope you have come to appreciate your own space and how you might construct it so that dis ease is your teacher, your mentor, and not your enemy. It is kind of a Buddhist thing to do. Breathe in, breathe out, note that you are in this moment and that what was and what will be are rife with regret and fear, hope and joy, but that we are only truly present in the current moment that we live. That is my space, the space I have learned to build in the past 12 months, and I have to admit that it isn’t as bad as I first feared. In the discipline and gift of an ALS present, I smile and cry and kiss and love.

And I’ll bet you do too.

Happy Anniversary Dis Ease! You moved in without invitation, and you acted like you always belonged. You shadow my every waking moment, playing mind games with me, causing me to question my own tenacity. But you have also taught me to live right here and right now, and I cannot thank you enough for this gift. Who needs past regrets and future fears when the lights are always on in the present? It is worth a cake, as long as there is a candle.