Covid Fellowship and Constrained Living with Invisible Disability

After last week's digression on the effects of my Covid, I was very touched by the many generous well wishes I received. Reading notes of encouragement in my darkened bedroom filled my time for a few days. Thank you.

Two kinds of responses surprised me. First, while commiserating with me, a number of people shared publicly their experiences of living with regular vertigo, tinnitus, and headaches. They did so on this blog, but also in other social media. My piece was a trigger for them to come out, as it were, and share their otherwise invisible disability in our wider professional circle.* These testimonials give a glimpse of stoic perseverance and alert us, perhaps, to quiet suffering. 

Second, a smaller, but not insignificant number of covid 'long haulers,' and their partners, privately reached out to me, to wish me well, to encourage me, and also to tell me that they recognized my symptoms. They have provided me with fellowship and support through the chat functions of social media. 

Because I find speaking quite exhausting, I am, despite my family, rather isolated during the day. But the fellowship -- as I call them to myself --, has made me feel connected to those who have a sense of what it's like. Relative to the people who died or were incubated in hospitals, we don't seem especially stricken. But we struggle in a world designed for activity.

Because I mostly lacked the canonized covid symptoms  -- fever, cough, lack of smell, shortness of breath** --, the fellowship has been reassuring. Knowing that others, too, experience the waxing and waning of dizziness/boat-rocking, fatigue, headaches, difficulty concentrating, and insomnia has given me a sense it's part of the territory. They have given me a window, a sense of familiarity, into how my experiences hang together. 

Last week, I discussed my inability to read and focus; I have withdrawn from all professional activity. In particular, classes start without me next week. Even the fellowship can't remove the dread I may never teach again. 

This week, however, I want to give a sense of the manner in which the inability to concentrate ('brain fog') manifests itself in other ways, too. The most obvious example is that three times since quarantine ended, I nearly burned down our kitchen. Each time I skipped an otherwise obvious step; e.g., pouring water into the espresso machine after adding the beans, removing the paper-towel-role or the plate from the burning stove. Each time I missed that something was burning in front of my eyes until I smelled the problem, and, eventually, registered it as a warning.  

In reflecting on my experiences I receive, I imagine, an oblique glance at the what it's like of Alzheimers and dementia (and, perhaps, other forms of consciousness in animals and AI). And  there is no difference in experience. Compared to my pre-covid self my steam of consciousness does not feel more granular or gappy. I don't have a sense, in the moment, of my blind-spots.

Thanks to Dennett's work I am familiar with the fact that even very healthy conscioussness is full of unacknowledged gappiness. Because I recall my past capacity, I recognize, after the fact, that some of my behavior exhibits less skill-full functioning, an incompetence at tasks I had once been familiar with. Since I am nearly fifty that's not a wholly new experience.

A few years ago, the work of Elizabeth Barnes on disability taught me that the human condition should be conceived as constrained living (here); (here), (and here). The gappiness of my possible blind-spots is not experienced as constraint at all. I don't feel handicapped when I walk into our kitchenette.

By contrast, while I have some recollection issues (with names, especially), I have a pretty vivid sense of my capacities before Covid. And this alerts me to a whole range of new constraints day-to-day. For example, I have learned to walk while dizzy, which involves an inattention to the sense that I might fall any minute; instead I trust in the sturdiness of my legs.

I also can't listen to any music. In fact, the only distraction I tolerate is watching already familiar films, but not musicals, or TV  (or highly episodic series). This is also familiar to the fellowship. One curiosity is that watching explosives or gun-fights on Netflix does not bother me at all, but any other background noise -- the barking of a dog in the yard, even my son singing happily -- evokes the horror of a scratch on a blackboard. 

  

 

*I doubt this was their motive.

**Last week, on what looks like the nadir of my illness, I had one day of difficult breathing--worse than any asthmatic attack I have ever had.

Comments

[dmf]

for me there is no new information in my experiences(including smoking cooking pans and coffee pots running minus coffee) of lacking what I once took for granted (largely because these systems were active/present in non-conscious ways) that isn't available in texts but does give me a visceral grasp (much like say imbibing hallucinogens can provide a visceral grasp of the chemical aspects to everyday/straight consciousness) of them that is new and differently motiving, which seems like something for academic philo to consider.
For good discussions of the relations between bodily functions and environments the ENSO seminars are hard to beat, my current fav enactivist is Tony Chemero:
http://www.ensoseminars.com/presentations/past22/

[Rick]

Eric, I’m so sorry you’re going through this. I’m thinking of you. I’d get you a ticket out if I could. Rick