Almost everyone who has attended a high school graduation has, at some point heard Robert Frost’s poem, The Road Not Taken.” It begins, “Two roads diverged in a yellow wood, and sorry I could not travel both…” Three strophes later, Frost states that what has made the difference is that the traveler took the road less traveled, not the one that showed the wear of constant use. Frost’s poem implies that we can go one way or another, either-or, the road more traveled or the road less, and I’m mindful of that poem as I return from visiting our son and his girlfriend in Korea. From our trip, I realize that traveling and dis ease have much in common that perhaps belies the forced choice the poem suggests.
Travel teaches things that are not as obvious anywhere else, and frankly it is one of my favorite things to do. When Ev and I travel, it is a tightrope act. Especially, we love to plunge into a culture of which we know little, and to grow as much from our ignorance, mistakes, and just plain cultural klutziness as possible. Usually, we follow Frost’s advice, forswearing the typical protections of most travelers. We drive where others bus, we stay in places where westerners cannot be found for miles, we head down alleys instead of main streets, we deliberately get sweaty, dirty, and just up to our elbows in the locale. We delight in breathing in these new spaces as we experience a gut-level, highwire that leaves us with that jubilant feeling in the stomach—part fear, part breathless, part stress, part sheer joy. And coming home to the consistent, known and stable (and the kitties) is just that much sweeter after the high emotion of travel.
Dis ease is a lot like travel, only we don’t actively seek it out. It is a paradoxical experience of consistent grounding and tightrope walking with your heart in your throat, and possible calamity just around the corner. The new normal of ALS grounds me, my friends and my family into a gut-level experience that is part grief, part grease lump in the stomach, part denial, part full realization. Like travel, it puts me on a roller coaster with a thrill of discovery, new sights, sounds and smells, but without the payoff of returning to the old normal of home in the scope of a plane ride. But dis ease and travel are surprisingly similar, and they came together for me in our trip to Korea.
Jet lag has always affected me harder than Ev, and the 14 hour time difference between Korea and the States was particularly difficult. When I am jet lagged, I often will dream vividly, and my first night in Seoul was no different. It gave me what I have come to call an ALS dream. ALS dreams are usually about some part of dis ease that I am struggling with in my waking hours, for example–the next papercut and its inevitable denial–and they range from the surreal to the highly realistic. My first night in Korea, I dreamed that the pressurized cabin of a trans-pacific flight had cured me of my dis ease! So sweet, so hopeful. No more ALS. All I had to do was get on a plane and leave the ALS dis ease behind me. And there was more in this “cure” than met the eye, for suddenly, the greasy congealed lump in my gut that I guess I have gotten used to in the grounded highwire of ALS, was gone as well.
I now realize that it is in my gut where dis ease really abides. Part grief, part physical byproduct, always present, my dream not only cured me of the ALS, but of the stuff I have been carrying as well. I could let go of the hole in my gut that represents my fears of the next step and the next and the next. I awoke, happy and thoroughly rested, with my ALS new normal gone. What an incredible feeling! And of course, all I had to do was swing my legs out of bed to realize that dreams are only dreams. I stood myself up only to find that my foot dragged, my arms and gut and back twitched, and that was that. Cruel, eh? But I received a respite, if only for a moment, and it was energizing. And this is where I have new knowledge–that the highwire road less traveled and the old normal are not mutually exclusive, nor can they be.
In a way, our lives have become heavily dependent upon reducing the tightrope act, because with dis ease, our hearts are always in our throats. I knew this in my head as we prepared for Korea, but the dream showed me a road I need to travel, one that is both a higher tightrope and a less risky avenue. I need that respite from the gut stuff, because it is as debilitating as dis ease. I need to try to plan to stay ahead of what is happening, what is coming. But I also need to be allowed to be “old normal” where I can, walking the highwire of growth, newness, and humor that comes with diving into the experience. Ironically, ALS has become the grounding (in so many different meanings of the word) that defines the new normal. Old normal comes to me in the joy of friends, the glances of my lover, the pressures of my work, the adult growth of my kids, the learning of my teaching. New normal and old normal are not separate–they inform each other, just like a delicious dream of the curative properties of pressurized cabins offers respite. I’m grounded on the highwire, and what was once thrill, is now the respite.
Travel is as much a part of me as any body part. I’ve always loved it precisely because you end up living on the edge, in spite of how well prepared you are. Paradoxically, for Ev and me, our friends and family, colleagues and others, ALS brings us to the fork in the road where before, we would have chosen the road less traveled, but now we choose the roads we have traveled less. We have to care about the grief we carry, and we have to carry the grief for each other so that we are not so thoroughly buried by our new grounding, that we cannot get up off the ground. ALS insists on a less energetic interlocution with the world. With this trip to Korea, we recognized a new way to travel–less breathless, more protected, more traditional. We became cognizant of the energy it requires to accomplish the next learning, knowing full well that we cannot predict everything to come, even with great foresight and planning.
Frost identified the condition correctly: “Two roads diverged in a wood.” But dis ease means that you don’t get the privilege of traveling one or the other. “Two roads diverged in a wood and I, I took the one…” that I found myself upon. It is the way of dis ease, but more importantly, it is the way of life. Take that Robert Frost!