For nine days, Ev has been in Italy. If you are looking for a tome on love unrequited or on just how long nine days can be; that isn’t going to be this little musing. There are some things I choose to keep only for me, and while it may be clear that I miss Ev, I will spare you such prose. But there is so much that has happened in the past nine days, such material, and yes such memory. Travel has always been a priority, so the fact that she is in Italy and I am not, should tell you something, for such travel is probably beyond me now. And reflecting on our travels together, or on the fact that I am not with her is a new moment in dis ease for both of us, one that we anticipated, but never fully grasped.
There is an anticipation and preparation for travel that can be every bit as enjoyable as the travel itself. The time leading up to that moment on the plane, the boat, the train, the car is both anxious and sublime. When we first began to travel, we didn’t know how lovely the anticipation could be. Even now, it is easy to lose that sweet perspective, even when you have the experience of preparation many, many times over. And knowing how the anticipation works was not something that was easily learned. Over time, I came to appreciate the joy of planning, of shaping a framework but not too much for the upcoming journey, because travel always reshapes the framework imposed upon it. One of the things that travel taught us was that no matter how careful the plan, how detailed the itinerary, there would always need to be times of improvisation to account for the unanticipated reality of plans gone awry. Some of the best experiences we ever had came from these moments, and some of the most frustrating. The sweetness of dreaming the anticipation was that in the plan, everything worked. The joy of the travel was that it didn’t.
And over time, we got better and better at anticipating the things that might go wrong, and the things that might not. Our first transatlantic flight was the leap of faith that brought us, young in our marriage and with a 14 month old baby in tow, to Norway. God what we didn’t know. Poor David cried the entire trip (yes, we were that family on the plane). I am now convinced that he was reflecting the anxiety of his young parents leaving everything we knew, like a mirror on our souls. While it was always challenging to travel with young kids, it was never like this again. We learned to reflect pre-travel anxiety only to each other, to plan for his (and later Jon’s) needs, and trust that aside from the occasional incident–for example, once in Copenhagen, Jon managed to pull a computer down on his head at the check-in counter so SAS staff rushed him into the city proper for stitches and delivered Ev and the two boys directly to the plane just in time for takeoff–things generally worked out. Travel teaches you to pack light with an extra pair of underwear in your carryon, knowing that in the most uneven grottiness of unwashed bodies for days on end, some evenness can be achieved. This was always part of the beauty of travel, for we learned that in some way, we would get things back to some sense of stasis, some semblance of normalcy, some comfort level with which we could live. Such knowledge is helpful in a storm.
I don’t want you to think it was all challenging; some of the travel we have done has been sublime. I still count our last weeks in Egypt, of which we spent 7 days camping on a beach on the Red Sea, as one of the most wonderful weeks of my life. We undulated between watching satellites and shooting stars by night, and by day, snorkeling in the vast beauty of Red Sea coral, Napolean wrasses, parrot fish, angel fish, dolphins cresting, and remarkably dangerous animals–lion fish and sea snakes–warning us to be respectful. Eating, sleeping, bathing, talking, laughing in this wonderland of incredible beauty with the desert all around us and the sea beside us, was a time I will never forget. We were with friends on the beach, friends who had done this many, many times before. And they guided us in so many ways, both in how friends spend a week uninterrupted together as well as what to see and how to protect ourselves from the relentless sun that illuminated occasional awkward moments. Such is the height of friendship.
And some of the travel was remarkably affirming. When we flew to Bali from Minneapolis for the first time, the comedy of errors that was both the flight to and from Denpasar would have knocked the most seasoned adventurer for a loop. We took it in stride and became smitten, enamored of this remarkable island. Bali is a place that teaches the importance of place, for every Balinesian that we have met needs direct communion with the terra firma that this island is, knowing that spirits and ancestors are just under the stones in the yard of your birth. And we learned this lesson, that a sense of place centers us, even when place cannot be perceived. Bali has changed enormously in the last 15 years, and though we have returned twice to experience its beauty and culture, nothing will equal the excitement of our first trip there when so much went wrong, and ancestry and culture and center and place were introduced in a way that we had never before perceived. This is why we go to places we have never been. The vistas that were opened to us required an engagement with the world at a level that always asked for more until there wasn’t anything left to give, and yet we always returned.
I’d bet at this point, you are thinking that I am going to point out the vast parallels between travel and dis ease. I could, I really could.
The anticipation and acceptance of diagnosis and treatment, the need to roll with the setbacks and celebrate the affirmations, the challenges that require a stitch or two, the new experiences that teach in a way you’d never learn if you remained in the same place, the inner vistas that are opened up and the old knowledge that becomes strangely irrelevant in the new contexts; all of this parallels the dis ease journey. Yet, the parallels are of less relevance to me than the vast differences. ALS is an 18th century island penal colony at the end of the world. Once you are on that ship, there is no going back, no stasis to center the journey’s cadences, no return to the home from which you set forth even if you are optimistic about the direction. There is nothing in my experience that is like this dis ease experience, for everything I learned from travel is so inadequate to this peculiar journey. It is nothing that underwear in your carryon will handle, and the grottiness of its effects are never undone.
I hear the musings of my brothers and sisters in dis eased arms, and I can tell you that even those in so-called remission never quite feel clean.
One year ago, we were preparing for what I knew in my heart would be our farewell tour to favorite spots in the world, Thailand and Bali. Now, Ev continues on, bringing home her experiences for both of us to savor. A year ago, we prepared for new experiences that would solidify into mutual memory of taking on the world on its terms, holding hands and facing forward. Now, I am thankful for the flow in and out of travel memories sweet and tough and frustrating and soulfully open to a constantly shifting reality; no stone foundations in this space. Instead of plotting the next adventure, I have homecare coming in twice a day to help me dress, eat, keep the place picked up and sit close by in case I cannot get up from the shower. My plans cannot push beyond ensuring the basics. I miss Ev, and I miss travel, and out of that comes new learning that can only be framed by the dis ease of this moment.
Ev is traveling for the two of us. She moves our adventure forward into new places, and so do I. She must learn to keep on keeping on without me physically present, and for that I grieve. But a death lived fully must continue to take on the tourist challenges of taxies in Rome and the Alitalia way of doing lost luggage. And I continue with her.
I am there, honest–I am there.