The New York Times had an interview with Stephen Hawking today. He is the renowned physicist who was diagnosed with ALS an unheard of 48 years ago, at the age of 21. Dr. Hawking has lived with his ALS all that time, and in spite of his dis ease, he is one of the most prolific theoretical physicists of our time. Whatever you think of Dr. Hawking (there are enough stories about his marriages and his lack of patience with foolishness to at least be cautious), his accomplishment in both theoretical physics and longevity with ALS is remarkable. What really struck me about the interview was not so much the content, but the point of view of the interviewer. Claudia Dreifus is a respected New York Times writer. She writes the “Conversations with…” feature in the Tuesday Science section, and she has recently co-authored a book on Higher Education. I like her a lot. This conversation, “Life and the Cosmos, Word by Painstaking Word,” hovers between Hawking’s ALS and his theoretical physics. And it is a revelation about more than Stephen Hawking. It reveals a state in which most of us find ourselves when we are face to face with dis ease. Let me explain.
We naturally have expectations of Ms. Dreifus as Stephen Hawking’s interviewer. We expect her to ask questions about black holes and his book A Brief History of Time. We expect her to ask him about living with ALS. And of course we expect her to locate her proximity with Hawking with the pronoun “you.” but there is something in this particular interview that indicates more than just the “I the interviewer” and “You the subject” proximation. Often, I detect in mainstream media a sense that the experience of dis ease is only located in the “you” person. Dreifus’s four dis ease questions of Dr. Hawking are framed in what I have come to think of as the “unnatural you.” You are broken of body, and I am not, and the “natural I” can observe the “unnatural you” from a safe distance—kind of like reporting on the floods in Memphis from a TV studio in New York. It is as if Hawking’s life, remarkable in its theoretical consideration of the cosmos, is only remarkable due to how unnatural it appears to be. Dreifus goes so far as to ask him if, due to his life longevity, he really has ALS—for me, a telling confirmation of just how unnatural the great physicist seems.
Think, if we put our heads around this wondrous phenomenon of life, is it not almost a guarantee that as humans, we will experience trauma, illness, upheaval and aging? Don’t the great stories, both biographical and fictional, frame themselves in narratives of people who experience great adversity, and come to some negotiated peace or not, with their own dis ease? Yet on the surface, we gaze and gawk at the prospect of dis ease in our own lives as if it is an animal in the zoo, and we are protected from its danger by thick glass, bars or other barriers. For me, this voyeurism on dis ease is denial of the “natural I” by projecting an “unnatural you.” Dis ease is the unnatural enemy, to be fought, resisted, denied, and certainly foregone as we make our way in this very short gift that we call life.
I think we lose an opportunity for living by taking this attitude, and the opportunity we lose is not so much one of being realistic. It is in framing life in a way that has space for all of the things we hold dear, in the context of what is to come naturally. If we see dis ease as unnatural, then we can look at the dis eased person as an “unnatural you.” It is as if we expect a person with dis ease to now give up and not care about the things in life that he or she valued the day before their disability. I get this. My own brief journey with dis ease has been one that seeks reconciliation between my own pre-ALS attitudes of how unnatural dis ease was, and the me-with-ALS struggling to frame my new normal as a natural gift of life.
I realized this internal conflict almost immediately after my diagnosis. When I go back and read my early ALS journal, my greatest fear was not of dis ease. It was of imagined perceptual changes from my loved ones, my friends and my colleagues. Yes, I was worried about my ability to manage ALS, but I was even more worried that they (you) would see me as only ALS. I fretted that such an overpowering perspective would delimit your ability to see the “natural me.” I went so far as to write the following in mid-December:
“Don’t talk with me about personal and professional boundaries. Each of [my] identities surrounds my life roles–Bruce the lover, Bruce the husband, Bruce the father, Bruce the professor, Bruce the dean, Bruce the music director, Bruce the God-seeker, Bruce the artist, Bruce the friend. The boundaries might be more about the content, but not about the roles and identities. They are all inexorably intertwined.”
And then I ended it with this: “Now I am Bruce, all of the above, with ALS.”
And there it is. It is so natural. If you just flip your perspective a little bit, you realize that the amazing thing is not that those with dis ease remain engaged with life and love. It is that we humans believe that dis ease changes those desires, needs, or life joys so that they become irrelevant. How illogical is that? Many of you have told me that you cannot imagine getting a diagnosis like ALS. Imagine this—even now as you read this, you are preparing for the time when life will be harder. Your life is dynamic. Your body will not be the same, and your mind will not be the same, but your heart will still want love, your skin a caress, your ears a great tune and your mouth to be kissed. Everything will change, and nothing will change. The natural you is the one that seeks ever more challenging experience, because it prepares you for the natural way of things. Each challenge, each papercut, each loss is also an opportunity, a healing, and a gain.
So, I am thankful to Claudia Dreifus for her conversation with Stephen Hawking. It focused me to reframe the “unnatural you” into the “natural I.” It helped me on a day when I was fatigued and having difficulty just getting out of my chair, to remember that I am Bruce with dis ease. I still love, kiss, care, think, read, reason, sing, lead, laugh and cry.
It is only natural.