I am not sure why, but the song playing on my personal life soundtrack this week has been that 1970 warhorse, “Lucky Man” by Emerson, Lake and Palmer. One of the first popular songs to use the distinctive Moog Synthesizer wail (if you have heard it, you know exactly what I am talking about; if you haven’t, there is no description), coupled with great background vocals and arpeggiated guitar accompaniment, it was a quintessential comment on commercialization and materialism. Punctuated by the sad cry of the Moog, the initial message that a man who had everything—money, fame, loves, lust—was a lucky man, melted into the ironic observation that the same bullet that might kill those less “lucky” could also fell him. “Lucky Man” was an observation on perspective, perhaps a little simplistic and romanticized, but still compelling. So, the very real and emotionally wrenching life-considerations experienced by Ev and me this past week flipped ELP’s ironic definition of “lucky,” and the act of placing meaning around the fatigue and joy of living through dis ease found me feeling, perhaps inharmoniously…lucky.
“Ooh, what a lucky man he was.”
One of the gifts of dis ease is the fact that what looks like unavoidable loss can almost always be reframed into ironic gain. This week required such reconsideration. I have learned to pay attention to loss’s foreshadowing. For example, before I was diagnosed and still trying to figure out what was wrong with me, I was well aware of the fact that my spinning on a bike seemed very uneven with my left leg having to be pulled around by my right. At the time, I interpreted this as a need to strengthen my left leg, to weightlift, or force myself to over rely on the left leg to make it get better. Of course, now I am painfully aware that the issue was not leg strength at all. It was a message ALS was sending to a person with no frame of reference for the message. The lesson was clear–just because you don’t have the framework for understanding, doesn’t mean a message requiring comprehension isn’t there. Denial isn’t helpful. Change is inevitable. Static expectation is for death and taxes.
“White lace and feathers.”
This week was a Mayo week, and while in many ways, we left Rochester more intact than usual, the noticeable changes of the summer required us to explore more deeply than normal with a need for straight-talk discussions with the medical staff. You might note that I am using the plural here. Another one of the lessons of ALS is that just because I am the one with the condition, doesn’t mean that it’s effects aren’t felt by Ev, my sons, my friends, my colleagues. It is complicated, and I must not act as if I was alone in this endeavor. So we sought help in anticipating the next great paper cut and the next, and trying to stay ahead in this race to the bottom knowing full well it will catch up to us. I feel lucky to understand the implications of complacency and the need to predict.
“All dressed in satin.”
Anticipation is a gift that can be tyrannical. It can lead you to believe that full preparation with one hundred percent contingency planning is possible. Instead of living in the moment you are given, anticipation can cause you only to see the future with its hopes and fears. Yet in dealing with the inevitability of mortality’s costs, anticipating loss can be advantageous. ALS has taught me that if I need something now, and I am not prepared, it is too late. ALS teaches it is not possible to foresee everything, that such attempts are probably going to fail, so moderation in anticipation is appropriate. Having professional caregivers who support me in predicting these physical and emotional challenges, who speak truth even when truth is easier to deny, feels lucky.
So what has changed? It feels like I have reached a specific empirical tipping point. For the first time since my initial diagnosis, I feel the need to carefully consider the end game, not that it is coming anytime soon, but the combination of so many of the gifts of ALS—anticipation, non-complacency, prioritization, the deep knowledge of the love that follows—have come into a confluence of meaning for me. There are big decisions to reach, I see them coming, I know their meaning, I can exercise some influence not so much on their existence, but on how I want this to play out. And this is a gift for my family and my friends. In spite of the loss, in spite of the grief, human choice remains.
“Honor and glory.”
Even the temporarily able bodied know deep down that this too shall pass. Although we might perceive dis ease, we find it easier to cut off the source of our perception and fly above it as if nothing will happen. ALS strips out the utility of such hovering. It says, “Engage with me now,” and because life’s fleetingness is so insistent, the fear to say, “I love you, I hold you in my heart,” can dissipate. It is a gift—kisses on the head, caring hands, time’s full meaning palpable and present. You could look at this as illustrative of the losses brought on by ALS, for ALS bestows choices not in its progression but in the attitude for approaching what will or will not be denied. But the fact is in the choice, and I am lucky to be so bestowed.
“People would sing.”
This week was a tough week. It began with Mayo and the consideration of hard things. It flowed into the work I love and the consideration of more hard things. It ended with the visit of a dear friend, a play at the Guthrie, Thai food last night and brunch with my family today. It was symbolic of the range of experiences each of us is given—honesty, reality, kisses and hugs and songs, or denial without anticipation—gifts each may choose. I get how hard this can be. It is hard for me, for we aren’t encouraged or taught to see heads and tails as anything but opposites. But as my dear friend Ernestine says, “Life and death are just two sides of the same coin.” What I know deeply is that there is a wave of choices coming to each one of us, and we can ride the crest or be smashed in the wake. ALS just strips away the necessity for protection, for protection in the end is only a fantasy.
“What a lucky man.” Cue the synthesizer.