This was one of those weeks where sadness lay just beneath the surface, like ice melted from a lake yet still lurking beneath dark waters where the sun and wind cannot reach, bobbing up from time to time and breaking free of the liquid above, and then sinking back just beneath to keep the waters cold and impassable. I was stalked by my feelings like ice–perceivable, tangible—testing my skills at holding grief for the past and fear of the future at bay. When I get this way, there is nothing to do but accept the sorrow, hunker down and know that anything has the potential to set me off. This is the way of dis ease. A couple of weeks ago, a dear friend asked me if I ever just have a bad day. She was a few weeks off her own surgery; her own recovery dis ease, and her question was urgent, like an itch just out of reach. I held her hand and said, “Yes, yes. Without a bad day, there are no good ones.” I should have told her about snakes.
I’ve never been particularly afraid of snakes. Growing up, I loved the garter snakes that lived around our newly minted housing development, and I loved more the stories my dad would tell about corn snakes in the barn of his youth. As a young science teacher, he taught inner city kids to catch black snakes and hognose snakes near the river that ran through our town. Nothing holds a seventh grade boy’s interest like a snake eating its meal—wise teaching on my dad’s part. When we lived in Egypt, we were aware of the deadly mambas out in the desert, although I never saw one. I did see a number of hooded cobras in Thailand, and the thrill of them was both tingling and breathtaking. We learned not to step on sticks in the dark as one could just as easily have been a cobra out to warm itself or worse, a green mamba, one of the deadliest snakes known to our world. As a boy, I returned again and again to Kipling’s The Jungle Book and Just So Stories with particular love for the stories featuring Kaa, the great 30-foot python and friend of the boy Mowgli. I assure you that my version was not the Disneyesque lisper–just scary enough but not too, titillating the little ones but not overwhelming them with fear. The Kaa I imagined was formidable, strong, deeply disciplined and powerfully loving. I loved Kaa’s mysticism, and I loved how Kaa could talk with the boy Mowgli in a way that his guardians, Baloo the bear and Bagheera the panther could not. Kaa spoke a truth to be considered or disregarded, and this is why I think on him now. Where the bear and the panther pushed Mowgli to become conscious of the fact that he was indeed a man, Kaa merely said, “It is difficult to shed one’s old skin.” Kaa, a great teacher, offered just enough information so that the man-cub’s curiosity was piqued, but not so much as to overwhelm him. Best to stoke the imagination and inquisitiveness and then let things happen, was Kaa’s method, and it was ultimately the best way.
Kaa tunes me into the teachings of snakes, and now the snake offers a conception of sanity in such a week as this when the realization of new lost skin cannot be denied any longer.
Here is the recitation, the litany—I told you long ago I would keep you up to date. Like a snake, lethargic and irritable, I now shed the last concept of me for a new one, defined by iterative losses that caress my psyche with angst and apprehension and pile up dis ease’s loving gifts. How does it love me? Let me count the ways. Standing for any time longer than a few seconds is an invitation to fall. My ability to transfer–to get up even if I am able to transfer, to get into bed without the help of another person, to get out of bed without assistance–all of this is now compromised beyond reclamation. I cannot reach out with my arms; they must stay in contact with my body or some support surface, seriously affecting how I eat or reach for something just out of hand’s range or place a folder in the out-basket or cut my food or shake hands. And my fingers, my tactile connection with words and writing and thoughts and emotions and the turn of a phrase and the joy of a scribe, no longer behave with any facility that resembles normal working hands and arms and brain. All of this has become in your face reality and not some unconscious abstract irritant. It requires grieving and quickly, redefining such basics as humility and modesty and sufficiency.
I relate to the shedding of skin in so many ways. Snakes become irritable, lethargic, losing their appetite and lying with milky eyes as their bodies seek to throw off the old and bring on the new. It takes a lot of energy to shed the old skin, with the final act a physical scraping and twisting as the snake rubs and scratches against sticks and rocks that will aid the metamorphosis. In spite of their physical discomfort, it is the way of snakes to shed so that a new skin can emerge. And ironically for some reason, with the week that has been, this concept of shedding for growth comforts me. Just as shedding is the way of growth for the snake, my growth in physical loss is the way of dis ease.
Dis ease sheds capacity, and while that shedding seems far too easy, it is what frames each evolving iteration of loss that I now experience. Since my first physical symptom, I have come to realize that from time to time, I must completely reboot, shedding the old concepts of what it means to have ALS like the old skin they have become, and embrace the new losses as progress, usually with some physical struggle and emotional upheaval thrown in. ALS has changed me. Dis ease has depleted me. I can mourn each loss, but I must not allow myself to become comfortable on the new plateau where it lands me for that is not the way of life we are granted.
Friday night, Ev and I settled in on the movie Extremely Loud and Incredibly Close, and shedding’s reality came home to roost. While I found the characters extremely compelling, and I stuck it out in spite of the fact that I don’t do sad movies very well any more, my reaction was just another indication of how I have changed since ALS came into my life. I can think of all kinds of indications—there is passion underneath dis ease, there is overwhelming joy, there is sadness—all translated into one of the few physical acts I can still accomplish; holding myself together. And the fact remains that wet tracks, hot and acidy, inspired by the events in a made up story just real enough to believe, furrows hidden by practice, but always there to the practiced eye, appeared on my face–where the tears have been, where tears continue, where tears will be.
But in the watching came another realization. There is a line in The Jungle Book, “We be of one blood, thou and I,” the universal greeting that when spoken, ties the speaker to those with whom she speaks. Dis ease is a universal greeting as well, and it opens the doors that we all share in this earthly existence—death and birth frame our lives. Thus, I can be dis eased and alive, accepting what will happen in its own time, paying just enough attention to stay ahead, but not so much as to overwhelm, and in the end, moving beyond the paltry lengths of temporary ability into the skin of one who must continue to grow. It is the way of the snake and the way of dis ease, and it continues to tell me that I must meet loss with growth, all at the same time, until I can no longer meet it.
And maybe then, I’ll just shed my skin and leave it far behind for another to find.