In A Few Good Men, the climactic moment comes with great anticipation. Tom Cruise, playing Navy prosecutor Daniel Kaffee, demands of Colonel Nathan Jessup, played by Jack Nicholson that he divulge how the murder of a marine was deliberately ordered. Cruise yells, “I want the truth!” and Nicholson answers, “You can’t handle the truth!!” It is high drama, and it somehow reminds me of how we do conversations about dis ease. The truth is something that we all want; yet deep down we wonder whether we can handle it. How we want the truth and how we handle it is unique to each of us, and it can be confusing for lovers and friends, family and colleagues. For some, truth is a hardship, while for others it is a relief. For me, truth is an elixir, potent and tart, washing away the stale sickness of carefully maintained identity, resulting in clear self-awareness. The truth is hard and surprisingly simple, but the truth is also easy and complex. Above all in dis ease, the truth is specific, general, and impossible to predict in its course, yet inevitable in its progress.
When I first learned my diagnosis, I sought truth like a cure. I contacted the ALS Association, surfed the net (beware the YouTube videos), and looked up every medical report I could find. I joined patient forums, discovered that there are dueling associations seeking money for research, and realized quickly that truth was not in the facts. The facts of ALS were presented in a way that didn’t make sense to me. Some just didn’t add up—5000 new ALS cases per year, with a 50 % mortality rate by the third year after diagnosis, doesn’t really equal 30,000 US ALS cases at any one time. Others seemed too good to be true—a cure can be found, just send money. And then there were truths that were just plain raw—Persons with ALS (PALS) who were filmed in all their paralyzed glory, cared for by haggard, weary spouses, parents, children, friends. I trolled through these different sources like a fly-fisherman in an Idaho trout stream. And what I realized very quickly was that each source sought to portray a picture that served a purpose, and discerning the purpose was more important than understanding the actual facts that were portrayed. Each truth was a carefully constructed façade, more complex than simple, yet easily predictable if the purpose could only be gleaned.
No wonder it’s so hard to handle the truth.
What I have learned in my time with ALS is that there is TRUTH and there is truth. The capital T Truth is one that perpetuates narratives that serve another purpose. Here is an example: ALS results in the gradual loss of all motor neuron function until the person is totally paralyzed and literally trapped inside their body. There is truth in this statement. But there is also great helplessness. I can tell you that it is true that physical function slowly and inexorably goes away. I can tell you that there is a helpless feeling that goes with this, especially when you don’t feel like you are ahead of the curve. But I can also tell you that each time I discover a strategy, a technology, or an attitude that helps me handle the next loss and the next, I don’t feel helpless. I feel empowered. The small t truth of the matter is that ALS moves uniquely at its own pace in different ways in different people. I have met numerous PALS who are living well past the 3-5 years of life that the Capital T Truth diagnosis gave them, mostly because they have chosen certain ways to mitigate each new symptom. I have also met PALS who experience small t truth despair, mostly because they feel they are no longer connected with humanity in any meaningful way, or that they are a tremendous burden on their caregivers. The truth of the progression and its consequences is just not a simple Big T Truth.
On the other hand, the small t truth that I have learned from dis ease is exceedingly honest, yet quite malleable. It requires a day-to-day, sometimes even hour-to-hour gut-check to discern its presence. Somewhere in the facts of the day is the truth elixir. Here is a good example. I follow the careers of former students, and current leaders in the world of education. Their tribulations are many, and their triumphs have to be quietly celebrated—leaders mustn’t chortle out loud when things go their way. When I get the chance to have lunch or meet for coffee, when we run into each other in unlooked for places, when we just get the chance to catch up; their passion and their pain inspires me. I love the opportunity to listen to them, and I feel privileged to encourage them back to a center that is built around the children in their care. It isn’t easy to be a teacher, a principal, a superintendent, a professor. You can be 95% successful, yet the one person in your classroom that you have not reached will haunt you. As a principal, you can easily find yourself having to support policies and procedures that in another context might have made sense, but in the place you find yourself, do not work at all. It is dis ease of another kind, and I get to listen, and empathize, and encourage, and support. It is tiring, yet I am strengthened in my own dis ease negotiations by these encounters.
A dear friend commented on my last blog that honesty is a spiritual state. She wrote, “A spiritual friend is one who is honest with me, so honest that his words break through any denial or illusions and help me be in this precious moment.” Boy do I get that. When I feel the panic of my lack of leg strength, or the fear that I will have to quit driving, my naturally manufactured response is to create an illusion that everything is OK. But it isn’t OK. I have every reason to panic, and I have every reason to fear. But that truth means I’m not crazy, that I’m not making this up, and there is a quiet satisfaction in the power to recognize exactly what is going on—no schemes, no hidden purposes, no Truths with a capital T hiding facts that are cleverly portrayed to advance some specific agenda without revealing it. And as my friend says, it helps me be in the precious moment.
In all honesty, most of us have Jack Nicholson moments each and every day. It could be a white lie or an ornamentation, some Baroque rationalization for some thing we have thought or done. And we cannot handle it, so we construct capital T Truth that will allow us to remain in the game for another day. I get that. I need that. But I also know this. Meaningful living requires that truth, with all its complexity and contradiction, remain the center-point of a life well lived. I am thankful that I can discuss my truths with friends, colleagues, family. Many of you have said to me that you appreciate how open I am about my ALS. Believe me, what I gain by placing my truths of the hour into written form is both empowering and therapeutic. I am thankful you read, and I appreciate being able to express dis ease this way.
In the long run, all of us have to decide how much truth we can handle, how much truth we want. But there is a quiet center to realizing just how contextual truth is, and how bound our life happiness is in finding not so much the facts, but the truth that surrounds them. I do want the truth. But I also need to be lifted by the life that truth defines. And in this, is the honest and authentic response to the truth of dis ease.
At least if I can handle it.