This week, a local couple from Burnsville, MN won the 229 million dollar Powerball. Talk about winning the lottery! At last report, they were trying to decide whether to take a one time payout of 124 million, or to stretch it out over a number of years so that the taxes would be less. A lot of us like to indulge in the fantasy of “What would I do if I won the lottery.” The odds are really low, less than 1 in 80 million for the Powerball, and yet, as the saying goes, “You can’t win if you don’t play the game.” The fact that a local winner emerged sparked Ev to observe that the winners have a lot of choices to make, and these choices reminded her of the choices that we faced upon diagnosis of ALS. Powerball and dis ease, each is a lottery, but the odds are different, and the games have very different rules.
If you won the lottery, imagine how it would feel. Imagine the shifts in the very foundations on which you were standing. Everything would change. You would have to decide whether or not to come forward (winners generally get a year’s grace period to make the decision). For those who question why you would want the grace period, consider just how much everything would change once the news was public. Instead of friendship based on being friends, you would probably find yourself thinking about why people were contacting you. In the back of your mind would always be the thought, “Do they want my money?” And think of the added pressures winning the lottery would put on your family. They would also learn to consider the motivations of others, even old friends. Every relationship, every action, every event would be tinged with the questions of motive. While I know a lot of people who think they would gladly take that burden, I am well aware of the studies that show that lottery winners aren’t necessarily happier, and many actually wind up destitute as well. The odds of things going south for lottery winners are much higher than the odds of actually winning the lottery.
For those of us who have won the ALS lottery–the odds being 3 in 100,000–there is a peculiar parallel with winning the Powerball. For once you have your diagnosis, everything changes. I remember full well the feeling upon hearing, “You have ALS.” It was as if the world took a 180 degree shift, the floor disappeared, and I felt like I was floating above the scene in that doctor’s office. It didn’t help that I couldn’t ground myself with the human connection of touch (I’ve already written about this–sorry). But I think my journal from that time is instructive.
It really is amazing how quickly your world can change. Just like that – on Sunday night I was a person with lower back pain, muscle twitches, and a floppy foot, fatigued but still whole. I thought, “It is a combination of a pinched nerve, too much caffeine, working too hard, office stress.” Ev and I went to a concert on Sunday evening with our son Dave and his girlfriend Athena. The choral music was ethereal, sublime, and I knew, deep down, that it was the last night of my life like that. I wept during that concert; the music touched me so deeply. I wept during that concert; it was my last night on earth.
It is the last line of this raw journal that describes the lottery win of dis ease. “It was my last night on earth.” Since that time, Ev and I have undergone tremendous changes in the way that both of us, and our sons, and our friends, and the rest of our family, perceive our lives. Everything is processed through the lens of the dis ease win. I evaluate and analyze every plan based upon perceived effort divided by energy usage. Even my work, something where I have never thought about conserving energy, is dependent on this mathematical calculation. Before, I never considered it. After the win, I think about it all the time. For those of you that doubt the reality of rebirth, dis ease is rebirth in spades.
I still weep from time to time. I weep for the past, the lost abilities, the lost roles, the lost yet blessed ignorance of not having to face the fact that dis ease is our gift and fate. But I also have to admit that the weeping times are associated mostly with new developments in physical regression. Winning the dis ease lottery means that you become much more aware of the fleeting gifts of life, that life is not the static state that we normally perceive, but rather that living is a constant review and adjustment to information that you probably don’t really like. Such awareness, like the awareness of other’s motives by Powerball winners, is not always pleasant, but if you are going to do anything with the life you have, you had better pay attention.
Powerball winners are a little different from dis ease lottery winners. They get to choose if and when to come forward. They get to choose whether to accept the prize. Most of all, they get to look at the point of delineation, their last night on earth if you will, and decide if it really will be the demarcation of then and now. Dis ease lottery winners get no such choices. You cannot choose to walk away from the prize. You are forced to come forward, and the moment of demarcation is a trauma that lives with you for the entirety of your rebirth in dis ease. Yet, I must admit that as much as I would like to have missed out on this experience, I am thankful for the gifts I have been afforded. For unlike a Powerball winner, I don’t question the motives of my friends and family. I know that they care, and they want to help. I don’t have to worry about what I will do with the winnings. They are already distributed, inherited, and they continue to play out. Most of all, I have been afforded the opportunity to be aware, for the blissful ignorance is actually not so blissful. We do ourselves no favors by pretending that dis ease is not our own reality.
I cannot say I am happy that I won the dis ease lottery, but I am appreciative of the growth it has afforded me. I am thankful for the framework dis ease gives me in terms of setting priorities. It reminds me of so many things, not the least being that attitude is a big part of how things go for me. I don’t mean this to be pollyannish, and I certainly don’t want to give the impression that peace with a dis eased existence is a static state, but from my point of view, I’ve never enjoyed ignorance. In playing the dis ease lottery, you learn that the winnings are what you make of them.
I guess that if you want to win, you do have to get in the game. For me, dis ease is as much a part of the life game as anything else, and the only way to win is to lose–lose your former capacities, your former frames of reference, but most of all, lose your ignorance of the odds. With the losses are opportunities for gain–not so much physical, but spiritual. Once you have stripped away all of those things you thought were important, you find out just what remains, and this is what you place your bets on. Everyone tries to beat the odds. For me, the greatest growth has been a mathematical understanding. The real odds for dis ease and life are 100 out of 100, and none of us gets the choice to walk away. So, the choice is to play it out the best you can, or quit.
I’m still playing, odds be damned. And in some funny way, the more I lose, the more I win. Talk about winning the lottery!