Dreaming the World

Sunday afternoon. Bright sun, milky blue skies, and cool for this time of year. The sun rests a bit higher in the east than a month ago, even as temperatures have fallen. On the marsh and in the bay a thin coating of ice has formed; it swishes with the wind and tide.

We’ve continued to be Covid careful. This morning we went to one of our favorite bakeries which was largely empty so we sat down with our coffee and pastries. Within what seemed only five minutes the bakery was packed and there were people sitting right next to us. We considered evacuating but decided doing so would be too messy and too late. So it goes.

When we left the bakery we turned right at an intersection at which we have always turned left towards the beach. Turning right, we now know, brings one quickly to a magnificent salt marsh and two wildlife reserves. Given the morning was cold and windy we made only a preliminary exploration of those spaces, promising ourselves we would return on a warmer day.

We were reminded this morning that along with post polio syndrome there remains the necessity to avoid Covid if at all possible. (I recommend avoiding post viral syndromes if at all possible.) Disabled folk have been disproportionately impacted by the virus, very much in keeping with disabled life in general within our colonial culture in which disabled mostly means expendable. Even though my education, career, and relative economic comfort largely cushion me from the full impacts of ableism, Covid and the colonial state remain a threat. I wish it were otherwise for everyone.

I seem to have fallen into a well documented post polio pattern: I have energy first thing in the morning and in the evening. A nap or two usually help but the afternoon too often feels like slogging through marsh muck. Often I become energized enough in the late afternoon to make dinner, an activity I usually enjoy, save for those times of food boredom during which there is nothing I want to make or eat. Then around 7 or 8 in the evening I wake up and tend to gain energy until bed time or after.

I’m experimenting with better ways to pace the day. My preferred way of working is in longish, concentrated spurts. While I well know that I might be better served by frequent total breaks, the idea of stopping whatever I am engaged with every 20 minutes in order to totally rest is appalling. I understand the math would actually work in my favor but the process is just alien, and frequent interruptions destroy any sense of flow.

As you might well guess there may be another process undermining my transition to a more sustainable routine. In order to make a living and raise a family while navigating PPS I have put aside any number of activities, projects, and dreams, all of which are now clambering for attention even as my stamina and energy decrease. My decision to retire next month appears to have exacerbated this process and things not yet done have lined up at my door, pointing out that there is much want and an unknown but finite time to do things in. Dreams and desires do not much like being shunted to the rear for much of a lifetime. Oddly all the dreams that were nurtured and desires met seem to have no value in the discussion.

I wonder whether living in a colonial culture in which only productivity matters contributes to this erasure of accomplishment. Doing so with an almost life-long disability certainly adds to the challenge. I seem to expend an awful lot of energy resisting the notion that as an aging disabled person I simply don’t matter.