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Hope, the great engine of life

November 23, 2011

I’ve been playing games on Neopets again. This is a site that my son was enamored of when he was seven or so, and which I joined to investigate. You “adopt” little cartoon characters, called “pets,” which you can color and dress to your individual delight. I mainly played the site’s version of Mah-johnng, Sudoku, and Solitaire.

Lately, I’ve been playing those games once more, when I need a distraction from the situation I’m in. Lots of CPS patients use computer games as a distraction. Distraction, actively turning your attention away from the sensations, is an important component of dealing with CPS on a daily basis. The activity you choose as a distraction must be completely involving, so much so that you do not notice the time passing. The activity must not be too physical, since movement is very often a spark for greater pain. There must be a compulsive quality to the activity. I suppose understanding the neurochemistry of OCD, Obsessive-Compulsive Disorder, would give some leads into finding a drug that was effective in fighting CPS pain. There must also be a component of constancy, or continuity – no opportunity for pauses or mental breaks.

Computer games fill that bill perfectly. Even though they perform absolutely no useful function, and are not money-makers, for CPSers they are a tremendous shield against the pain. For one thing, they require almost no movement. The computer is indefatigable; it will keep playing as long as you can stand it. The time-sucking quality of these games – the very “wasteful” quality that we so abhor when our children partake of them – are actually the reason that so many CPSers engage with them. They completely “take your mind off” the misery.

“Shooters,” games where you blast things, are attention-grabbing but leave me cold. I prefer games that have a strong reliance on logic and numbers, games that that actually have solutions instead of death-scores. Everyday Genius: Square Logic ate up a good deal of my time this summer, when it was too hot to move away from little space created by the fan and the computer. Sudoku is another numbers-and-logic game that I find diverting. Part of what I love about these games is that there is always a solution. You just have to find it. If you end up in an obvious losing position, you can just go back to the beginning, figure it out, correct your mistakes. Go slowly, think ahead, look at all the indicia, and you can win. You can beat the puzzle if you think carefully enough. Even Mah-johnng gives the impression that every puzzle is solvable, even if it turns out to sometimes be a chimera. If only Life were like that!

But Life isn’t like that. For one thing, you can’t go backwards and correct your mistakes, just by paying more attention to your choices. You can’t turn back the clock and start again. Most importantly, every puzzle does not have a solution in Life. There is a huge variable of luck in Life, everything from the situation into which you are born, to the genetics which you have inherited, to the historical era which you occupy. My consciousness of the contingency has been extremely sharp in my psyche from my earliest memory. You remember the address list that you made as a child

Your name
Your street
Your town
Your state
Your country
The Earth
The Milky Way
The Universe

How amazingly lucky I was, I realized, to have been born to middle-class Americans, living in my well-to-do  but still rural town in New Jersey, in the greatest country in the entire world! As I grew more aware of politics, the sight of the children just like me being kept out of schoolhouses by people with bats, or hit with water from firehoses, made me realize how lucky I was to exist in my social and ethnic contingency. “There, but for the grace of God, go I,” was a prayer that came instinctually to me. I became fascinated with history because of the very contingency into which it placed human beings. The Soviet Union, Medieval Europe, Aztec Mexico, Red China, the Egypt of Ahknaten, the Rome of Augustus, mysterious Lhasa in Tibet, the New Jersey of the Lenape – all of these were places that I learned about as a child, whether in grade school or through reading. “Everyday Life in Ancient Times,” a National Geographic book full of marvelous illustrations, captivated me. Why was I here, now, instead of being that Mayan girl thrown into Cenote Sagrado, the sacred well of human ,sacrifice at Chichen Itza 1200 years ago? It was all chance – luck, or God’s will. The latter struck me as being as inscrutable as the former, and actually the same thing.

This realization of the utter contingency of  life became the foundation of my political philosophy, as well as of my sense of responsibility. Of course, I now realize that personal contingency is far more predetermined by external forces than we ever want to admit. The Catholic insistence on Free Will, and the Conservative insistence on “personal responsibility,” both appear to me to be philosophies born of the fear of contingency, a desire to refuse to admit just how limited we are in the choices we often have. Of course, we have personal choices – mainly in our decisions about our own actions towards others, and towards ourselves. Diet books, for instance, are based on the idea of Free Will and personal responsibility. But even those often elide the facts concerning the natural, as in completely biological, facts of weight gain. Does knowing just how limited we are in our choices, and how dictated by genetics, the brains created by our childhood and upbringing, and historical and economic factors give us power to change, or give us an excuse to remain passive? Just how big a factor are luck and contingency in how we can play out our Game of Life?

These are the questions I muse upon as I play Solitaire. These days, I can get lost for hours in one game of Solitaire after another. That’s why I play on Neopets. They give you points for winning games, depending on the cards you clear from the board. After you reach a daily total of 2500 points, they stop awarding them to you. The game where I hit 2500 daily points is the last game of the day. But why would I continue to play compulsively, one game after another, if I wasn’t stopped? Doesn’t the fact that winning at Solitaire depends so heavily on the luck of the cards make it ultimately frustrating? One can’t control the way the cards are dealt in Solitaire, any more than one can control the contingencies of life.

I realize because Solitaire is not primarily a game of luck, but a game of hope. Every new deal gives you the hope that you will win. Every card you turn over has the chance that it will lead you closer to victory. Every game lost gives you a blink of disappointment, but it is immediately followed by yet another potentially winning deal. Every game may end in victory; you have no way of knowing when you begin. Not only that, but you can’t know if the game is truly lost until you have gotten to the last card available. I have played games that have looked like certain defeat, until the last available card which proved to be the key to triumph. I have suffered the split-second anguish of realizing that I have just discarded a card I needed, simply because I was too hasty, and not careful in looking at all my options. I have even felt a weary boredom steal over me after I have gotten to the point of winning the game, and now have nothing to do for 90 seconds but clear off the board.

It is not the winning that keeps my attention, that gives me a thrill. It is the chance of winning. It is the hope. Hope is the great engine of life, the motivator, what keeps us pressing ahead even as all looks bleakest. Hope is my true addiction.

This is the reason that I have never been a gambler, one who bets for money. The gambler is driven by the hope that this stake will be the big score, the payback for all the past failures. I saw, as I watched my horse-betting, poker-playing, perpetually-underdog-betting father, how much gambling can inflame the passions. I also saw how much it can devastate a budget, and harm all the members of a family living on that budget. My budgets have never been flexible enough to allow for cash that was simply tossed away in slot machines or at a croupier’s or dealer’s table. Jack and I used to take nighttime runs to Atlantic City, in the ’80s when the city still would close for the night, albeit at 4 AM. We’d leave as soon as his shift managing a Burger King was over, and barrel down the Parkway in the dark. There were usually no other cars on the road. It was like driving through a dream, at the hour when you were supposed to be sleeping. The you would emerge from the darkened woods along the southern end of the Parkway, and sweep through the suddenly open vista of the AC Causeway. The lights of the casinos along the Boardwalk 4 miles away would glow incandescently before you. It reminded me of Dorothy sighting the Emerald City. When we got to the glitzy palace of money, we would only have a few hours of play; the natural limit of the precipitant closing set it. Most of the old casinos are gone now: the Playboy Club, the Showboat. (Was there even a Golden Nugget?) Jack would play Blackjack, while I would drop five dollars in the slot machines, and then people-watch. Too many of the early-morning players looked possessed, mechanical, as if they were just human attachments to the slot machines. They were enough to warn me away from enjoying AC.

Their faces showed me what happens when you have nothing but hope without a rational plan for fulfilling it. The lure of gambling, like Solitaire, is hope. It’s the same fleeting thought that makes you purchase a lottery ticket when the MegaMillions jackpot gets above a certain figure. “Why not?” you wonder. “The winner could be me. After all, you’ve got to be in it to win it.” You know the odds are against you, but so what? You might win. But even lottery tickets don’t enthrall me. Life is usually so difficult that what I want is real hope. I want to know my odds. I want to figure out ways to change them for the better. Hope may be the engine, but there has to be a functioning, rational vehicle attached to it for you to ride it anywhere. A game is not that vehicle.

That is the other reason I play Solitaire on Neopets, as opposed to the free game that Microsoft operating systems provides. The Neopets game gives you your game statistics after every game.

You have won 100 Neopoints!
Your total score has been updated to 223,640!
You have played 1648 games, and you have won 110 times.
Your current win streak is 0 games.

110 victories out of 1648 attempts. Those odds are not very good, eh? They are the moment of rationality in the venture. As long as I haven’t hit my 2500-point limit,  I don’t spend too long looking at that sobering fact. I simply hit the button that say, “Play another game,” and immediately that flame of hope jumps up, like the ring of fire clicked into life beneath my teapot. (Gas ranges have piezoelectric ignition now, rather than pilot lights.)

Those of us in the CPS community also have pilot lights of hope. We have to work at times to keep them burning. We have to tend them carefully, searching for any fuel at all. We are constantly on the hunt for the rational, functioning, scientific vehicle that will propel us to health – or at least, relief. A new drug? An intrathecal pump? Deep brain stimulation? A month at the Mayo Clinic? A new variation on an older drug, such as Horizant,, which is an extended-release form of gabapentin? (Way to go, GlaxoSmithKline – you found a way to patent a new form, and thus a new, higher price, on a drug that is now generic and thus cheap.) We have to have hope, or we end in despair and suicide.

My hope now is to create a non-profit patient advocacy group for Central Pain Syndrome, which could raise funds and lobby Congress for research and advocacy. My old college friend Mitch has been talking with me about this over the last few days. His career involves working with fundraisers and researchers, developing sources of funds for new medical procedures and devices. He’s attempting to put me in touch with one of his good friends and clients, a man who has both successfully created an advocacy group, and obtained hundreds of millions of dollars in grant money for the research of the disease that he is concerned about. (The client’s daughter died after a painful 15 year struggle with this illness,) I’m not really at liberty to reveal the man’s name, or his foundation, but suffice it to say, this development gives me great hope. Mitch may be an actual lifesaver by facilitating this connection. The idea of actually being able to lobby Congress, and fund real research on treating this scourge, is what gives me hope today.

What I haven’t really realized until these past few weeks is that writing is, for me, at least as diverting as playing computer games. At least, writing on this blog, even with my post-stroke hunt-and-peck typing, is riveting enough for me to forget to take my meds. Thank you, my imagined reader, and especially any of my real readers, for being gracious to me with your attention and your presence. You give me hope.

One Comment leave one →
  1. y0landa permalink
    November 29, 2011 6:17 AM

    And that YOU Louise for giving us a little spot in cyber-space for us to connect with someone else who feels a little of what we feel. So we can feel part of someone’s life, even if only for 5 minutes…….


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