Pollyanna Sounds the Alarm
People frequently ask my husband — and sometimes they ask me — if I am really as upbeat about my ALS as I appear to be in my posts. When I woke this morning I was asking myself that question too.
The answer is yes. My posts express as honestly as I can what I see, hear, feel, understand. I abhor Pollyannas, as most of us do, for the way they gloss over the negative and by omission become liars. That is not me. I think of myself as an observer, trying to sharpen my perceptions to notice odd, unexpected details about what it is like to watch a capitulating body. I find it endlessly fascinating, and it seems to be relevant to everyone, since everyone will eventually face a version of the same thing.
I am able to remain upbeat in part because I do not have to confront my deterioration alone. I am supported by friends and family near and far. My condition has brought me back in touch with so many people from earlier parts of my life who I adore but had lost touch with. I sometimes feel as if I’m floating on a hammock of love.
However, I am not upbeat about the state of the world. I am very worried. About what I see of human nature these days: our inability to unite the world to address climate change in any serious way, and our inability to stop one psychopathic madman from destroying the lives of scores of people. Worldwide, the dark side of human nature seems to be overpowering our “better angels.” It is my belief that this is a response to our creature radars sensing the period of dire scarcity that lies ahead. This sense of imminent scarcity is catalyzing a get-it-while-you-can mentality that has given rise to the appalling xenophobia and bigotry we have seen everywhere. No country, no individual, is immune.
Thinking of these things, I live in a state of cognitive dissonance, floating on my hammock of love as I watch humanity going down the tubes.
In college, when I was acting, my favorite role was Katrin, the daughter in Bertolt Brecht’s play Mother Courage. Rendered mute by war trauma, she has become an observer, and when danger threatens her family and community, she is the one to see it and sound the alarm. To some degree maybe this blog has been my way of sounding the alarm, a way of saying, Please slow down, stop, look more closely at what is around you. Because when you do, as my disease has forced me to do, you see things you would usually hurry past, blinkered. You see the calamity of the present moment. A madman in Russia starting a war for no reason beyond his own ego, and thereby altering the fates of millions of people. The latest IPCC reports bringing news that the planet is warming more quickly than scientists predicted, that we are only a few years from the point of no return. When you stop to contemplate these things you think: How can I continue with ordinary life, with work or school, with building houses, or selling goods, or making art? Everything must stop now. You want to scream. We’re on a collision course. People are dying in horrifying numbers and those numbers will only increase going forward — I don’t mean year by year, I mean day by day.
But you also see the other stuff. The way the early morning light paints the lawn with shadows; the cup of coffee beside you, consumed over the course of the morning in small sips, rag at your mouth to prevent it from falling out, cool by noon, but still imparting magnificent flavor from some tree in South America; pictures of your weeks-old grandniece, asleep in the arms of your sister, your sister looking down adoringly, the beloved baby more relaxed than a yogi, wearing comically large boots, oblivious to her calming effect on everyone around her, even those who have never met her face-to-face.
If only we could solidify these gifts of beauty and connection, squeeze them in our hands and hurl them, like love grenades, at the forces of destruction. Can love really trump hate? Maybe, but only if it is fierce and unrelenting. And only over time. Love, it seems, works more slowly than hate, which has the power to demolish instantly. But love is the only thing left to believe in, I think. And maybe, holding fierce love firmly in our hearts will crowd out the parts of ourselves that are touched by the will to hate and destroy. For my own part, I am quite sure that it is only the hand of fierce love that is keeping me alive.