Natural You

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.

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7 thoughts on “Natural You

  1. Boy can I identify with this one. I experienced this extreme change in status after Don died, and I felt like I had to keep telling people, “but I’m still alive”, and of course still had the same need for love, etc. A friend said to me, “but nothing has changed in your life”, and my reply was similar to yours, “nothing has changed and everything has changed”. Thanks for putting your feelings and understanding into words so beautifully. I am still me and you are still you.

  2. And you are a spiritual counselor, inspirator, and consoler. I am walking, sometimes crawling, through the process of marriage dissolution, a more descriptive term for divorce. So, I hear you too Carol. You both raise my awareness of the strength within and the presence of God. I don’t have to trust my spouse or depend upon my strength alone. I , trust in the Ground of My Being and in resurrection. Bruce, I see your wholeness and your holiness. I hold you and Ev in a circle of light. Love, Jayne

  3. It is amazing how we try to protect ourselves from our own frailty by using that you/I unnatural/natural dynamic. I have never heard this distancing behavior described so clearly. And with so much compassion and self-awareness. You so gracefully avoided using the same tactic to distance yourself from the “unnatural others” who cannot understand.

  4. The best part of you diary this week is that you came to this conclusion relatively early in your diagnosis. Godspeed through your journey.

  5. Oh, my friend, your insight makes me cry! And, shame on me, I wasn’t thinking of you with your dis ease, but of my mom, who said on her 70th birthday, “I can’t be 70! I don’t feel 70!” and my 93 yr-old dad who lifts his old, old lips to be kissed each time I visit. It is not so different if age or dis ease diminishes our physical presence, our hearts remain the same. I am convinced it is our soul that is our natural us…our bodies just the vehicle…for a while.

  6. Bruce,

    You have just very beautifully articulated the reason behind the request by many families of children with disabilities to use “person first” language. This means that when you are referring to a person with a disability that you acknowledge they are first a person and that their disability, whatever it may be, is but one small part of their make-up as a human being. No one wants to be known or seen as the Down syndrome kid, no, she is “Ali, the second grader who loves to play with her friends, eat ice cream, and read books ETC!” And yes, she has Down syndrome, and that is one characteristic, one that brings both gifts and challenges to her life, but please don’t even think of defining her in that narrow way. Bruce, your words have deepened my understanding of the importance of valuing each person for all that they are and all that they contribute to our world.
    Terri

  7. Dear Bruce, this week I lost a mentor and friend. My friend had all of the following: Cystic Fibrosis, Diabetes, Kidney Disease/ Transplant, Rheumatoid Arthritis and an amputated foot. While most people would have felt sorry for themselves with just one dis ease, she managed to see the glass half full with several dis eases. Truly Amazing. She told me once, that at the age of 10 when she was in the hospital getting therapy for CF, she asked the doctor flat out , how long do you think I will live? The doctor told her hopefully, until she was about 20. Being ten at the time, twenty seemed far off. As time passed, the body began to fail and she spent many days in the hospital. When she wasn’t sick, she spent her time feeding the homeless and volunteering at the Ronald McDonald house. Her normal state was with many dis eases all at the same time. Her diseases slowed her down, but didn’t change who she was. My girlfriend died at the age of 49 long after the doctor’s prediction. I am convinced her seeing life as the glass half full is what helped her live so long. Like you, she is an inspiration to all of us that were/are fortune enough to know her/you.

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