The Tao of Aidan

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Agenesis of the corpus callosum.

That was part of the diagnosis the neurologist gave to my wife and me after our newborn first child, Aidan, had intermittently stopped breathing. By itself, agenesis of the corpus callosum need not be debilitating. It describes an attenuation, or even a complete lack, of the structure that bridges the two hemispheres of the brain. People can live long and healthy and happy lives with the condition. But combined with other brain “anomalies,” as the doctors termed them, it can contribute to profound disability. That would be Aidan’s experience. “Agenesis” turned out to be a portent: a seemingly irregular beginning, an apprehensive start.

Aidan was born in 1991 and he would never walk or talk or see. He was bedeviled by intractable seizures. Cognitively, his development never progressed beyond infancy. As he lived through the 14 years of his life, he sustained various losses. When he was about 4 years old, a feeding tube was inserted into his stomach to provide nourishment in a way that would avoid aspiration pneumonias. When he was 11, a tracheostomy was placed in his neck to ease his breathing, which was compromised by his low muscle tone.

I cannot recount here the many, many hospital stays, the medical crises, the daily challenges of caring for an acutely disabled child in a world ill-suited to that endeavor. It was a time of shattered dreams and stifled hopes. Through all of it, we searched for meaning.

My wife turned more fervently to Christianity, but I could not follow her there. Raised a Catholic, I had long since slipped into skepticism. Transubstantiation might have been the beginning of the end for me: I just could not bring myself to believe, as a teenager, that that was really the Body and Blood. Once that doubt was sown, I came to question God-centered thinking more generally.

So, when faced with the crises — emotional, intellectual, existential — of Aidan’s severe disability, I fell back on the philosophical Taoism that I had encountered as a college student. In a class long ago I had been introduced to the nuances of Taoism. Then it was an intellectual exercise, but now it returned as a refuge. There would not be the distraction of theodicy there, no time and attention taken to defend the goodness of God in the face of anguish and affliction. I did not want to talk about God; I wanted to understand Aidan’s life and my relationship to him.

Taoism helped with that. In its philosophical expression — distinct from its religious form, which deifies certain figures and ritualizes certain actions — Taoism might best be described as naturalistic. It calls our attention to the vast and complex totality of all things: the physical things of this earth, the ineffable things of the heavens, and the timeless things of the universe. The unfolding of all these things altogether spontaneously and simultaneously is what we might refer to as Tao, or “Way.” We humans cannot control Way. We cannot fully understand it. Our language cannot capture its expanse and intricacy. There is no reference to, or necessity for, any God-like figure in philosophical Taoism. The cosmology of Way is, in the words of the great sinologist, Joseph Needham, “an ordered harmony of wills without an ordainer.” All there is is Way, and Way is all there is.

The vastness and mystery of Way instill humility in Taoists. We cannot affect the movement of Way; so the best we can do is follow along in the inevitable unfolding of things. This is the famous “do nothing” (wu wei) dictum of the Tao Te Ching, a foundational text of Taoism:

To work at learning brings more each day.
To work at Way brings less each day.

Less and still less, until you’re doing nothing yourself. And when you’re doing nothing yourself, there’s nothing you don’t do.

To grasp all beneath heaven, leave it alone. Leave it alone, that’s all, and nothing in all beneath heaven will elude you.

There is debate among commentators about just how literally we should take the “do nothing” ideal. I tend to agree with those who see it as cautionary, not absolute. There are many things a Taoist can do; what he or she should avoid is action that contravenes the natural transformation of circumstances. Of course, the trick is to know what is “natural” and what is contrived. Generally, Taoism holds that less doing is better.

In struggling with the myriad tribulations of Aidan’s disability, I found solace here. As a father, I instinctively wanted to do something, to make it right, to solve the problem. There was much about Aidan’s life that could not be changed, however. Whatever I did, he would not walk or talk or see. I could not impose my own solutions on particular problems. He had loved to eat, and we had loved to feed him. I didn’t want the stomach tube, an infernal device that would rob him of one of his few pleasures. But I had no workable alternative. Eventually, it had to happen, it was inevitable in a way, in Aidan’s Way. Parents of profoundly disabled children often feel impotent in the face of such debilitating setbacks.

Taoism encouraged me to let go of my expectations and desires. It reminded me that trying to force certain outcomes can sometimes lead to greater perplexity. By contrast, simple acceptance might open the way to a new understanding, an appreciation of Aidan’s life. Instead of trying to do something about all the things he could not do, it might be better for all involved to just work with and through those things that he actually did.

Aidan could hear, so we read to him and filled the air with music. Aidan could smell and touch, so we taught the children around him to bring him things to feel and sniff. For me, one of the greatest things Aidan could do was sit in silence. I often joined him, learning how to let go of my impulse to draw him into my vocality and, instead, settling into his tranquility. Many were the days when we sat together in the living room, only our breath breaking the stillness. My workaday concerns fell away into irrelevance. We were doing nothing, but in our shared presence there was nothing we didn’t do.

Taoism also taught me not to search for causes. Early on, the neurologist said that he could not know with certainty what had triggered the unusual development of Aidan’s brain. Perhaps there was some specific explanation, but I took my cue from him. Way is, after all, beyond our comprehension. Better to focus on what was immediately around us, rather than things beyond our sight. Chuang Tzu, the wisest of the ancient Taoist writers, captured this sensibility in a number of its dimensions:

Joy and anger, sorrow and delight, hope and regret, doubt and ardor, diffidence and abandon, candor and reserve: it’s all music rising out of emptiness, mushrooms appearing out of mist. Day and night come and go, but who knows where it all begins? It is! It just is! If you understand this day in and day out, you inhabit the very source of it all. (19)

Accepting that “it just is” allowed me to avoid the recrimination and guilt that might have obstructed my relationship with Aidan. There were times when my wife and I differed on what should be done. She tended to be more assertive, more interventionist. But I learned not to hold on to such struggles. Ultimately, it didn’t matter who was right. What mattered was being open to Aidan’s subtleties.

Chuang Tzu also offered an expansive tolerance. I often turned this passage over in my head:

. . . the real is originally there in things, and the sufficient is originally there in things. There’s nothing that is not real, nothing that is not sufficient.

Hence, the blade of grass and the pillar, the leper and the ravishing beauty, the noble the sniveling, the disingenuous, the strange — in Tao they all move as one and the same. In difference is the whole; in wholeness is the broken. Once they are neither whole nor broken, all things move freely as one and the same again.

To me, this meant that a boy in a wheelchair, a voiceless boy who saw only shadows, a boy who would never read or write or reason, was as whole and real and sufficient as any other person. To some, this might seem preposterous, but when placed in the ageless and vast complexity of Way, with its teeming variety and dynamism, it makes perfect sense. However great a person’s accomplishments, each faces human limitations and deficiencies. In the vastness of Way, we are all small. Way moves as it will regardless of our victories or defeats.  The innumerable transformations of its unfolding exceed our understanding or command. In our impotence and imperfection, we all move as one and the same in Way.

Thus I came to see that Aidan’s unusual beginning, his agenesis, was not flawed or incomplete. His apparent brokenness was whole in and of itself, his beginning, and his end, as integral and valuable as any other. 

Sam Crane is a professor of political science and Asian studies at Williams College and the author of Aidan’s Way. He blogs at Useless Tree. His son Aidan Crane died in 2006.