When you have ALS, one of the most realistic, yet surreal questions you ask is “Just how long?” “How long” applies to everything, from the time left to still tie your shoes, to the time you might be able to still kiss your true love. It is part of the DNA of dis ease, because the answers are generally known, but not specifically understood. I have been doing a lot of thinking about “just how long” this past couple of months—partly in exploring what kind of professional life I have left to me, partly in wondering just how much more adventurous the bathroom will get while we are waiting for our condo to be built out—and “how long” has acquired new meaning well beyond its temporal considerations. “Just How Long?” lurks as a question for all of us, whether we choose to recognize it or not.
One of the first places I remember “how long” was as a child forced into adult spaces. God we’d badger our parents. There is nothing like the adult need to look good to other adults playing out in spaces not designed for children, and superimposed upon a childish sense of impatience. For the child, “how long” gets tied to everything from bathroom visits to timing the eons before being allowed to play outside. And ironically, the answer to “how long” is inexact out of necessity. No parent in their right mind would answer “how long” with an exact answer, because we all know that failure to meet such a self-imposed deadline would be grounds for the other infamous whine of childhood, “But you said…”
Our childhood experiences tend to carry into our adult perspectives. As adults, we often look at the length of time that we have to spend on a task as more of a negative than a positive. We hate wasting time on things we don’t want to do. We want to know “how long” do we have to put up with this. We get enamored of the question, and we think the answer is in being impatient with the answer. We translate the childhood whine into adult irritation, often responding in ways that our mothers certainly did not teach us, yet justified by an unconscious sense that adults shouldn’t have to put up with this—whatever this is.
I suppose the most immediate place that “How Long” intrudes for me is in writing. For those who write for a living, I don’t know how you do it. I don’t write to meet deadlines, and I give myself the space not to write if energy wanes that week. But generally, I start writing on Friday night and by Sunday, something has taken shape that explains a small part of the dis ease universe in which I live. Where “how long” comes into this picture is a little complicated. I have told you just how therapeutic it is for me to write these reflections each week. But they also represent physical regression. I try not to go back and look at what I wrote in March or April, because I see references to walking or driving the Honda or fulfilling some sort of physical task. From the perspective of the wheel chair, those days look a million miles away, and they raise the question of just how long I will be able to write in this way before that goes too. “How long” arrives in unwelcome streams of consciousness, although I try to frame it as best I can.
“How long” intrudes into other spaces for me as well. As you know, I have worked full time since my diagnosis, and for someone who loves his work as I do, the question of “how long” is ever present. I am sure it is present for my colleagues as well, raising some interesting communication issues about how we are going to talk about this. I wasn’t raised this way. My childhood understanding of dis ease was that polite people didn’t talk about it, and the only ones who got away with knowing anything about sick people were children who didn’t know better, and gossips who did. But if work is to work, the questions surrounding “how long” have to be talked about from time to time. I recognize that in spite of the numerous changes I have made in the way I do my work, greater changes are going to probably need to come if this is to be a successful venture for the university and for me. And at some point, the critical mass that points to leaving my position will be more apparent. While I keep doing gut checks, looking for reasons to step away, the reply whispering in my ear is “Not yet. No, not just yet.”
If you equate quantity with quality, then you choose the easier road of a life unexamined. The “how long” question focuses on a future that none of us can really predict, playing on our fears of death and equating length with worth. There is so much more to what makes our lives meaningful than just the temporal mileposts we hit. We are born, we live, we die. How long this takes is specific to each of us, and while a long life might seem to be the goal, it is what we do with the spaces between born and died that really determines our impact on this life. ALS has taken my “we live” space and condensed it, leaving me with the conscious choice of living each day as fully as I can, or dying as quickly as I am able. And this is not just my decision.
A good friend who is handling her dad’s dementia wrote that temporal longevity is really the stringing together of a number of immediacies. She said, “The long term is actually a series–a long series–of immediate needs. I was hoping that (in the case of my Dad) things would level off and we’d be able to stick our thumb in the dis-ease dike for a breather but that really hasn’t happened. I now know better. It is a long marathon and I’m fine with that now. This whole journey–yours…my father’s…mine is a moment-to-moment kind of deal. I never saw that until now…”
See what I mean? If all you see is the “how long”, then our lives as humans equate to nothing but a flyspeck on the billions of years of this world’s existence. But if we focus on the “how well,” then our existence is remarkable for its possibilities. For me, dis ease has been a laser beam illuminating what really matters. Each day is the opportunity to fulfill a meaningful answer to the question, “How can I make this the best day it can possibly be?” It is a question of worth and value, a sharing of humanness that notes the potential each of us carries, in spite of our flaws. The temporal question just compounds basic human fear.
I know that for many of you, given your knowledge of what happens to a person with ALS, discussion of quality of life probably has a temporal irony to it. After all, just how long do you think you can find quality if you can only communicate through eye blinks? Or even worse, just how long do you think you can keep some quality in your life, when your husband, father, brother, sister, wife, lover, son, daughter, friend requires every single bodily function cared for by you and a host of others, and the only thanks you might receive is through some secret language developed to maximize the use of the one or two controllable muscles left? Where is the quality in that?
In December, at our annual Christmas gathering, I told my faculty and staff that one of the things I have learned in this past year is that although my physical muscles are withering, I have found new capacity for growth through the exercise of my care muscles. I wasn’t planning to say “care muscles.” It just popped out, but it really puts a new context to what is important. No matter who or what, I find I care a lot more about how others are going through this life experience. I find that I care a lot more about whether my brothers and sisters find the strength to live meaningfully with joy and sorrow. And I find that I care about how easy it is to fall into the fear mongering of “how long” over the care mongering of “how well.”
This framework is really new for me, and I like the space it creates.
In the end, it isn’t about “how long” at all. “How long” only gives you a temporal framework for your life. The real question is “How well?” Unless of course you are really hungry, with the smells of a delicious stew wafting through the house, causing you to dream the deliciousness of your anticipated meal. I’d give you “how long” for that one.