The Look

Don’t be frightened, but I need to ground my weekly thoughts in the fact that we have just celebrated the holy weeks of Christianity and Judaism. Depending on your persuasion, Holy Week is about liberation, either from Pharaoh or from death. It is about a new normal, when the old normal was so crushing. And I cannot help but think of a line from Malcolm Dalglish’s musical setting of Wendell Berry’s poetry–Hymnody of Earth: “And we pray not for new earth and heaven, but to be quiet in heart, and in eye clear.” The line really speaks to me, not so much due to the new earth and heaven part, but mostly because of the “eye clear.” There is a phenomenon of eyes of which I am much more aware, partly due to how I perceive others’ way of seeing me, and partly out of anticipation of the role of the eyes in the latter stages of ALS. I prepare, admittedly at the beginning of my journey, and I find myself paying attention to look, sight, vision, eyes. I am learning new spiritual sight from the holy experience of ALS. The experience of current disability and the anticipation of further disability is a vision to behold and to cherish, although it may not seem so to the able bodied.

The Disability Community often refers to the able bodied population as TABs—Temporarily Able Bodied. They know just how fleeting the able bodied existence really is, and all of us know that able-bodied folks don’t like being reminded of that fact. Probably, I shouldn’t speak for others in terms of the TAB moniker, but I sure tried to deny my own TAB quality, and in my denial was sight without seeing, vision without clarity and frankly a dullness of eye that I have come to call, “The Look.” You may or may not know what “The Look” is, but if you imagine me as I am now, shuffling along, ankle-foot orthotic on my left foot with a probable need for another on the right, cane in hand, slow in and out of chairs, a little unsteady, especially when I am fatigued, you might give “The Look” without even knowing it.  “The Look” is a way of seeing without seeing.

Here is a story. A couple of weeks ago, I tottered my way down the skyway to get a slab of the local New York style pizza–a real slab of pizza. This is a place where I only eat once in a blue moon, mostly because the lines are long, and a little because the pieces are hugely caloric. Anyway, I got into the line behind a guy in a motorized wheelchair. He ordered, got his two pieces (yup, two) and a bottle of Dasani and went to the back to eat. When I struggled to the back, three items in two hands plus a cane, I put my stuff down (which was no easy task), sat and immediately realized, no napkin. I got back up to get a napkin and looked over at the guy in the wheelchair. So did half the restaurant. The guy had arthritic hands, grease from the pizza running down them and no napkins. How can you not see that? Just like you cannot see a guy trying to balance three objects in two hands, that is how. I offered to get napkins for him, and he gratefully said, “thanks, and do you think you could open my water for me?”

That story is “The Look.” We see things. We see the guy on crutches, on a cane, the woman in a wheelchair. But “The Look” goes right through them. We are afraid to acknowledge their disabled regalia, how they struggle, walk without balance, or don’t have a free hand when one is needed. I don’t mean everybody. That wouldn’t be fair. I’ve had people hold the door for me as often as they have pushed right through it just fast enough for the door to close in my face. It is probably too easy to just give “The Look,” and I must admit it to you, I know this from experience. In my old normal, I gave “The Look” as often as I didn’t, secure and confident in my able-bodiedness. I know how good I was at “The Look.” I’d look right through disability, and I wouldn’t have to face its possibility in the person that I’d looked through.

If you have been reading my blog, you know that often there is a moral to the stories I tell, and you probably think that “The Look” has to do with not feeling confident in the future of your able body. At the very least, it ought to be something about being kind to us crippled folk (As an aside, I’ve never had a disabled person not return a greeting or acknowledgment of presence, in case you are afraid of being misperceived). But there is no moral so easily grasped here except the moral of paying attention to the moments at hand. It makes me want to look again and again, beyond my past and into this future life that defines the experience of dis ease, and it makes me want to tell you of this gift that awaits us all.

Remember when I said not to get nervous, even though I was going to reference the Holy Week of Christians and Jews? Well you can get nervous now, because I am going to reference the Buddha as well, a three-fer. The Buddha tells us, “Life is dukkha, suffering.” My take away? Get over it, but don’t ignore it. Wendell Berry writes that we go into “a maze of a design that life can follow but not know.” To me, this maze has so many twists and turns. You can follow the money, the things, the stuff.  You can follow the religious, the sacred, the rituals. You can place your treasure in a healthy body.  All of these paths hold a truth–life is suffering, born out of our desires that circle back upon us in ways that ultimately increase our pain. All seem to me to be worthy, and all seem hollow at the same time. I think you can boil it down to clarity of sight.

One of the promises of ALS is the eyes. Even though they are voluntary muscles, for some reason, the vast, overwhelming majority of PALS’ eyes remain under control even when all else is gone. There is a whole “eye glance” technology that aids communication after speech is lost. And I find this somehow comforting as I come to terms with “The Look.” I prayed for a quiet heart, and a clear eye.  I find these in the looks of my friends, my family, and the future eyes of ALS.  Who would have thought that the eyes of one ravaged by dis ease could be so powerful, in spite of the physical loss? The full line from Wendell Berry is this: “I go amazed into the maze of a design that life can follow but not know.” I admit it. I’m amazed by what I never saw before. And if you don’t believe me, look it up. It is as liberating as beating the Pharaoh, or life over death!

Yours in ALS,



9 thoughts on “The Look

  1. I confess–I have been guilty of “The Look” in the past. I don’t know if it is laziness or “not wanting to get involved” or just plain selfishness on my part. Reading your words remind me to not look “through” people anymore. My chosen career (medical assisting) also compels me to “see” everyone. Thank you….

  2. When I give “The Look,” or if I understand your point it’s really “The Not-Look” or “The Look Through,” it’s because of our terrifically independent American culture. If I offer to help, are they going to be insulted? Will my simple desire to help be interpreted as pity, which no one wants?

  3. Who hasn’t been guilty of the look? I used to think that it was polite to avert my eyes from someone who is disabled. I don’t think that is true however. Would it not be better to look at that person and assess their situation and offer them a hand? I think so.
    This may sound silly, but I believe that holding a door for a young mother or father with their hands full of baby or maybe carrying a tray or groceries for someone who is on crutches or a cane is scoring karma points. you never know when you might need the help of a stranger yourself.
    You cite Bhudda and Christ in the fact that their example was to show compassion. You know, their is the big stuff like heal the sick and defend the defenseless; but what about acts of kindness? There is at least one opportunity every day, I believe, to perform that. The cliche is to do your daily good deed.
    Perhaps we should all stop giving the look and look directly at someone with a disability. That way, we can see how those of us who are able bodied might see how to ease suffering. I believe that is a true Christian principle. It is a moral principle in faiths all over the world too.
    My own faith states: “An ye harm none, do what ye will.” It pretty much sums up the teachings of many faiths. Well, if I avert my eyes from someone who could use my help then is that not harming someone? Indeed! Failure to act upon helping someone who needs it is a violation of our own humanity.
    Blessings to you Brother.

  4. Looking and seeing, sensing and inquiring. I have vivid memories of ignoring this gift, and warm memories of following up, reaching out, seeing, hearing, sensing. The blessing and curse of an intuitive. I have no regrets from reaching out, but, yes, I have some over some of those times that I ignored, blocked out, and thought it none of my businesss. When I center myself in morning prayer or meditation, I know that relationship trumps rationale, and my life is whole. Many people freeze and ignore because they feel unprepared, inadequate. I had a friend who told me, “Don’t ask if you can help me. I will tell you when it is needed.” I honored her request, but didn’t stop asking others. And, then, there are days when my own dis-ease with life leaves me needing to be brave enough to ask for help. I’ve learned to be specific, hopeful, and understanding.
    The treasure is maintaining the awareness of connectedness. Imagine…

  5. For over six years my husband and I trained dogs to be service dogs primarily for those who are in wheelchairs. Without a doubt the poignant part of the years were the graduations when the service dogs were placed with their new owners — to say goodbye to a dog you have known and trained for 2.5 years is as deep a sad joy as I have ever known. But the amazing joy of those who receive lives with me… It was one of the graduations when we didn’t have a dog leaving us that I remember the recipient talking about the first time he went to a mall with his dog. He said for the first time in years people noticed him, they acknowledged him. He had chosen to primarily stay in his apartment as his way of coping with the “Look.” Now, having had the dog for just three weeks, he told stories of going out and going for walks and how people acknowledged them, how people talked with him, how the dog helped him feel human for the first time in many years… Sad that it took a dog for people to see him… You speak like a prophet to us, Bruce. Open our eyes that we may see…

    • Your comment made me think of a woman we met at Mayo Clinic with a ‘service cat.’. We were curious, because we had never considered the possibility of a cat as a service animal. The woman was eager to tell us all about the abilities of her cat. The cat was the bridge that got us past that first impulse to glance and look away.

  6. A few summers back, I foolishly took a doctor’s recommendation to get bunions on both feet fixed at the same time. What was I thinking? It was an unforgettable summer. Doctors always underestimate the time it takes to heal. It was painful to walk for most of that summer.

    One weekend my cabin fever was so bad that Bruce rented a wheelchair to get me out of the house. We went to a nearby shopping mall to buy a few things before we flew back to Cairo, Egypt to start a new school year. I can’t remember what it was that we were trying to buy – towels, perhaps? What I do recall, however, was that I might as well have been invisible. No one looked at me. I caught many people glancing in my direction, then quickly looking away. At one point, one of the sales associates asked Bruce, “What color would your wife like?” His reply, of course, was, “Why don’t you ask her? She’s right here.” I was flabbergasted.

    The only person who made eye contact with me that afternoon was a small boy. I looked at him and smiled so he asked, “What’s wrong with your feet?” His horrified mother pulled him away, muttering something like, “It’s not polite to ask strangers personal questions.”

    I sat in that wheel chair for one single afternoon, feeling my self worth drain away as the minutes ticked by. I knew my situation was temporary and that in a few weeks I would walk without pain and eventually do all the activities I enjoyed before surgery. I cannot imagine what it must feel like to sit day after day in a wheel chair and have people ignore you, pretend you aren’t there, or make mistaken assumptions about your mental capacities.

    In the United States, we are ahead of much of the rest of the world in making activities and public buildings accessible to people with mobility issues and other handicaps. There is work to be done by many of us, the ‘TAB’s” (temporarily able-bodied), to look and truly see the humanity of our brothers and sisters who do not share the priceless gift of a strong and healthy body.

  7. Now that I’ve read this, I too, never really thought about “the look” – consciously, but it’s a true, people are naturally curious and anything out of the ordinary is part of our human curiosity. What I appreciate about being able to read this Bruce, is we rarely, ir ever, get to hear the thoughts of the person who is receiving the look, we always just know what we’re thinking. I too think the eyes are spiritual, Jesus healed blindness, Saul turned to Paul on the road to Damascus, what we do with our eyes, how they’re opened throughout our life, first at birth, and then through many “re-births” during our lifetime, is actually very beautiful.

  8. Thank you once again, Bruce for another opportunity for a hard look within ourselves. One moment that haunts me still was when I was a student nurse, mindful of following orders and a schedule; an elderly male patient dying of uremic poisoning was observed by the entourage of students of which I was a part. Across the hall from his room was his wife sitting alone on a bench. We all left the room, sweeping down the hall to whatever experience was to follow. I still feel the pain of loss and loneliness that woman must have felt-and feel to this day the need to trust my instincts to respond to a human need when I am able. I’m sure we all had “The Look” as we went about our business.

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