I went skydiving again today. I think God was OK with me not making it to church, since I was with two ministers. Actually, we meant to dive yesterday, but the winds were gusting heavily, and by the time they calmed, we could only go up to 9000 feet. So we decided to come back first thing this morning and go up with the first planeload out. I’m so glad we did, because it was sunny, COLD, and a clear day when you could see past the curve of the earth and all the way to the moon. My friends Paul, Pete, and Doug plus my son Jon went up as well. I think each one of us had a unique experience, not surprising, but certainly interesting. I won’t speak for them. They can blog or comment if they want, but for me, my second jump was in some ways even more special. It illustrated something that has really caught my attention of late; how do we actually attend to what we are experiencing? This is a pretty important concept in the dis ease world, because with so many new and not so pleasant experiences bearing down at the speed of ALS, it is often difficult to decide what is important. Just like my first skydive, it is hard to figure something out, until it has whizzed past you. Where you look and what you perceive can determine your whole outlook on life including the way you approach the rest of what is coming.
How we perceive things is pretty dependent on where our attention goes. This helps explain why eyewitness accounts can vary so widely in their detail. If you were looking right at an event, you might see one thing, but if your head just happened to swivel around to look at that shiny Maserati that went by, and you also happened to see the same event out of the corner of your eye, you might perceive something completely different. In dis ease, I find myself having to choose where my attention goes, mostly so I can frame it into something less debilitating than the reality of ALS. This means that as my experience of dis ease continues, I am conscious of the need to put my attention on things that are meaningful, for example– how good it feels to have such supportive friends and family, while simultaneously taking my attention off of how scary dis ease feels, especially as I contemplate things such as not being able to walk without the aid of a walker. This matter of perception became focused for me last week in a conversation anticipating my next skydive.
Last Thursday, I was Skyping with my friend Ernestine, when she asked me why I wanted to skydive again. It would have been easy to be glib. I could have answered, “I do so little well, I thought I would access one of my new skills—falling.” I could have answered, “Because it is there.” But one is not glib with Ernestine, at least that is my take. I thought about it, and it suddenly came to me. The second skydive would allow me to do something I couldn’t do in the first. I knew where to focus my attention this time. My perception would be different. Skydiving would not be an overwhelmingly new experience, overloading all my senses so I couldn’t really focus on what was happening. Instead, I could pay attention as it happened, because I knew where my attention should go. I knew what would be coming, and I could fully experience each step—from the flight up to 13,000 feet, to the process of getting the special gear all hooked up, to the shimmy over to the door, the roll out of the plane, and of course the overwhelming rush of the free fall. I knew what to expect, what to anticipate. I could actually slow these events down as they happened, rather than experience them at a speed that only allowed me to process them after they were past. In short, I wanted to skydive again so that I could experience it based on what I knew from my first dive, in addition to the unknowns that would be surely arise in this one.
There is a real parallel to dis ease here, because dis ease overwhelms the senses. Even when the change is slight, it is still quite disconcerting to note the next step in the regression of the current reality that you know, while accounting for the progression of the dis ease you have been forced to embrace. To what will you attend? I find myself learning these lessons over and over again. For courage’s sake, I must reframe what is happening to my body into a space that is confident, protected, and safe. I do this in a variety of ways. Just as I knew that the ride to 13,000 feet would be full of nerves and anticipation, I also know that the ride with ALS is full of anxiety. So I find that place where I can pay attention to other dis ease results—the joy of living each special day with my beloved Ev, the privilege of continuing to work in a job that I love, the fact that so many have reached out to me in support, the pride in my sons and their partners. I know that with each loss, there is also a potential gain, so as I anticipate the losses with the anxiety that loss inspires, I also seek the emotional space that is so reinforcing of this life lived, in spite of ALS and its dis eased accompaniments.
Today when Joe, the man who makes it possible for me to dive, and I rolled out of the plane, my eyes were wide open. What stroke of fate allowed the skies to be clear, and a waning gibbous moon to greet me in that first rush of leaving the plane? I remembered to pay attention, and the plane and the moon and the brilliant sky were the first things I saw. As we took the plunge to full velocity, I could feel the bitter cold of 9 degrees Fahrenheit, but I was hyper-aware of the rush that freefall brings. I was able to speed up the time around being cold, and slow it down in the freefall, so that when Joe signaled that it was time to deploy the chute, I was almost surprised. And the strength of the wind meant that we had to do some fancy and deep turning in order to hit the drop zone. Joe pointed out two fun-divers who had followed us out, and I got to watch them deploy their chutes. I could look up and see my friends and my son as they circled off in the distance. And when we landed, I was ecstatic, not because of the rush of an overwhelmingly incredible experience, but because I knew that the memory would be indelible. Tonight, I can close my eyes, and see the dive inch by foot by mile all over again.
Human beings are blessed with the ability to leave a record. Sometimes we imbue that record with meanings such as legacy or historical learning. Other times we associate such strong emotional reactions to the records that we keep, that the emotions become more important than the record itself. And of course, as we leave the gifts of our own musings behind, we also choose what not to leave—a choice that might be more significant than what we would have others know. I guess, that when Ernestine asked me why I wanted to skydive again, it hit me that in some ways, it was the same answer as to why I wish to leave these random musings. I recognize that in this reflection, this variation on a theme of dis ease, is the desire to be a first experience for others. If I can offer to you some of the things that I feel, perhaps your way will be more consciously chosen as you face your own ultimate path. I don’t mean to say that there are not multiple paths to the one destination. That would be arrogant. But I hope that in this reflection, you might recognize a little of your own journey, and be prepared before your next place comes. In other words, these thoughts are kind of a first roll out of the perfectly good plane of life.
The fact is, that in the writing of my dis ease, I have become conscious of just how much power one has over attention and focus. It is so much like skydiving; there is anxiety, maybe even despair, but there is also joy and enlightenment and learning and growth. I can focus on the fear that comes with separation, or I can focus on the liberation that comes in the freefall. Both are present, not mutually exclusive of each other, and powerful influences on how this journey goes. It is the nature of dis ease, to turn your gaze on each experience and count the losses while measuring the love. It is the Zen of freefall, the power of physical regression, and above all, the beauty of knowing that you can have other’s backs, and they can have yours. Pay attention, even if you have to miss church to do it!