Dreaming the World

Snow is falling as is dusk. It is just before three in the afternoon, a few days before the Solstice. This evening Hanukkah begins, and we are ready with latkes, candles, and stories of light, kindness, and individual and cultural perseverance in the face of threat. The gathering darkness and falling snow seem perfect for the first night of Hanukkah.

Monday Jennie and I went to the Polio Clinic. The clinic is near Boston, so getting there involves a considerable drive. We drove down Sunday, at the end of a significant snowstorm for Boston. Up here, there was maybe an inch. We drove home last night, somehow escaping Boston before the heart of the evening rush and getting home before the snow began falling here; today it has snowed all day.

A trip to the Polio Clinic is always an adventure. This visit took on more of a charge as we fully expected to be told the illness was progressing more rapidly. The late effects of Polio, or Post Polio Syndrome, are a complex set of symptoms, unique to each Polio survivor, and progressive. To our surprise and relief we were told my condition continues to be stable, although given the illness is progressive the term “stable” is a relative evaluation. The task when managing Post-Polio is to limit to limit the progression as much as possible, and it seems we are doing well.

We try to visit the clinic in warm weather and to avoid going near my birthday or major holidays, as the combination of winter weather, holidays, and birthdays just adds new layers of stress and anxiety to an already emotionally fraught experience. This trip managed to combine nearness to my birthday, and to Hanukkah and Christmas, with dodging winter storms. Oy!!

I’ve written before about the loneliness that went with being a child recovering from Polio. I left the hospital a few days before Christmas in 1955, returning home to a new life of near total social isolation. Part of that came from my doctors who encouraged my parents to shelter me from excitement and fatigue. They also largely banned me from reading and, I believe, television. The next eight months resembled something like house arrest.

(One of the difficult things about living in Vermont is managing winter snow. One one hand, I love it! On the other, I am sometimes left needing to shovel even as I know it will cause problems for me later. I’ve been wondering all afternoon whether our plow guy would get here before I had to leave the house. I was dreading clearing the snow from the end of the driveway where the snowplows had piled it up. Well, just now he came by and cleared the driveway! )

I’m in touch with Polio survivors around the world, most of whom experience some Post-Polio symptoms. One of the challenging conversations we have is about the rapidly eroding government safety nets on which many rely. This dismantling of social supports is frequently accompanied by mocking of, and derisive comments about, people with disabilities. Most of us find this difficult as it reenacts the cruelty of the playground, and the isolation created by people who turned away in terror when faced by those of us who survived the illness. We are also affronted when politicians and their ilk suggest we have failed to contribute to society as many of us have been engaged in working for the social good, and for social change, for most of our lives.

This year it seems hatred of people who are disabled (or otherwise different) is on the rise, and that all we have fought and stood for is in peril. I find the ascent to power of neo-Nazis here in the U.S. particularly disheartening and threatening. After all, Jews, Natives, and people with disabilities have not fared well under fascist governments. I am also profoundly concerned that in this holy time of remembering miracles many religious leaders are choosing to remain silent rather than confront the threat.

“It’s coming on Christmas
They’re cutting down trees
They’re putting up reindeer
And singing songs of joy and peace
Oh I wish I had a river
I could skate away on…..”

– Joni Mitchell