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,