All of us remember where we were ten years ago today. I promise this writing will not be a maudlin remembrance. For that, you can go to any of the major networks or the National Football League. I cannot help but reflect though on the parallels of the collective experiences of September 11th and the personal experience of dis ease. For Americans, September 11th is a defining moment, a then and now moment, a marked memory of marked memories. In many ways it is our dis ease moment as a country. It brought out great acts of bravery and kindness in us, and it has also been used to excuse the inexcusable. Likewise, for me, dis ease has brought out my best and my worst, some for which there is no logical explanation. I hope this observation doesn’t make you feel defensive or angry. I claim it as my own, and I’m not looking for agreement or disagreement. I just find the parallels uncanny, and I hope that sharing them will be informative.
The diagnosis that names our onset of dis ease is not a singular moment. It is an event that serves as the culminating realization of a gnawing feeling, a suspicion, a sense-making of disparate information to sudden dawning discernment. September 11th was our diagnosis. Like a big, floppy adolescent, we were out in the world, thinking that nothing could ever be so wrong, that we would experience anything so traumatic. Whatever uneasiness we felt, would not stop us from living in blessed ignorance of what was in our future. Never would we believe that such a thing as September 11th would become our collective dis ease diagnosis. But that is what September 11th is. And since that time, the dis ease of September 11th has invited itself into our lives, much like the realization of a cancer, shadowing our thoughtful moments and our unconscious fears. It doesn’t mean we cannot be happy, nor does it mean that we are always overcome by its presence. It is just a feeling in our lives, a fear that the child of an acquaintance, or a friend, or a person so close that they breathe the same air of our spirit, will be hurt or killed in light of the so-called “events that are a result of 9/11.” That is dis ease at its most insidious.
I think that deep down inside of us, we know that dis ease brings out a real dichotomy of humanness. I am not proud of some of the things I have dreamed, said, thought, voiced only to walls, or perhaps in moments of incredible smallness, inflicted upon those I love. Dis ease brings fear, and fear brings fights and flights. The temptation to lash out, to take easy answers, to point at difference and run from it as a way of negotiating dis ease, is unbelievably present. Every once in a while, I joke with a lawyer friend of mine that I want to know who I can sue. We laugh, but the fact is that my anger and grief make me believe in some small part of me that “Somebody ought to pay, by God!” And I don’t mean to say that some of that isn’t appropriate. It is appropriate to be angry and hurt, and to wish to remove the threat to your wholeness.
It is important to understand that the desire to fight or flee can make you do crazy things. You are vulnerable to all sorts of shysters and snake oil sellers. The fact is that having ALS means there are lots of people out there who want to “help” me, offering cures if I can just come up with the right amount of money, preying on the vulnerability that I feel. And our September 11th diagnosis has also been used for less than admirable ends. We have settled old scores, allowed beards and head coverings and names that sound “Arab” to frighten us. No question, the dis ease of September 11th makes each of us susceptible to fear, prejudice and shameful acts in the name of “security.” And all of us can point to someone that has used our collective vulnerability against us, manipulating our feelings of despair for their own gain. It is an out of context, Chris Isaac moment, “What a wicked game you play, to make me feel this way.” I am not proud of these moments, but I own as many of them as anyone else should or could, and it is far worse to deny them, cover them up, and pretend they don’t exist, than to acknowledge them. At least when you name your fears, you have a fighting chance to consciously decide their appropriateness.
But I said it is a dichotomy of humanness that dis ease inspires. I have seen so much good that directly resulted from September 11th, that there can be no doubt that many of the most beautiful moments that this country has collectively experienced are a result of our dis ease wounds. This has also been my own personal experience. I know that in spite of the weakness it has inflicted upon me, dis ease has made me stronger. I am a better man for it. I hug more, laugh more, care more, and even as I break down little by little, I count my blessings in ways that are hard to explain. I don’t quite know how to say this, but it is almost like dis ease has given me the gift of discernment that peels away the layers of false presentation, and brings every human being’s breathtaking energy and beautiful spirit into sharp focus. In the end, dis ease has given me the courage and determination to forego convenience. It has given me an urgency to connect with a world that I have come to understand as fleeting, so temporally framed that there are days its beauty and fragility overwhelm me. I will never forget the spontaneous gatherings in the days immediately following September 11th, the unspeakable grief that we shared, and the way that we reached out to each other in holy moments of collective comfort. It was like some vast balm rained down on our country, and the quiet of holding family members so close that it almost hurt was something that strengthens me to this day. We realized, for just a few moments, that we are only as good as our ability to build and support each other. This is the most important thing that I have learned from dis ease. My best self is the one that finds some way to help another person be better, in spite of my own challenges.
I recognize that this is a very small offering into the din of September 11th remembrance. The great gift I have been given with dis ease, is to know that life is a series of beautiful, joyful, exhilarating and overwhelming moments dis eased and otherwise. But I worry that with this new found consciousness, I might not come to realize the opportunities for good, until it is too late. Our nation struggles with this same phenomenon. Ten years later, it is as if we were suddenly cured, and we struggle with the amnesia that often accompanies temporary enlightenment. But enlightenment can bring change, and growth and the fortitude to not give in to fear, to remain attentive, and above all, to kiss this beautiful life square on the mouth. It tells us to embrace and never let go. Hug your true loves on this September day. Let go of the din and listen for the true gift of our collective dis ease–that we can be build each other up again. That is the only way to manage the dis ease of a nation.