I can never remember which one of the two spellings is about creation, and which is the one I am allergic to. I should though, because the fungus renders me unable to breathe, think or function, and instead I am lost and rudderless in an ocean of half-formed thoughts. Perhaps I am lost like most of the rest of us in this time of crisis, looking to be directed into concrete action by some external force, or perhaps I am doing what I do best, learned in a childhood of trauma – keeping my head down, trying to keep working, and hoping that the things that are making my life so terrifyingly uncertain will be over soon. Since that last one brings tears to my eyes, I’m fairly certain that it’s correct. I have piles of stuff to take to the Goodwill, and I have to be ready to move in a month. That’s certainly manageable. I could pack this room in a day, but I am mostly just having panic attacks instead. I am presenting at two conferences next month. That is also manageable. I have four final papers and a syllabus due – not too much work. Most are related to the conference presentations, either the ones now, upcoming ones, or publications stemming from those presentations. So, no particularly new research or new work although there are new concepts every week and it feels like my head will explode sometimes.
I am struggling with what Berlant terms cruel optimism particularly the capitalist consumerism of this society, and the necessity of presenting myself in a particular kind of way. I am in a department which mandates being ‘scent free’ but so far most of us are not using gelatin as a hair product or washing with baking soda. As an asthmatic and someone with inflammatory illness coping with people coming in from smoke breaks and being in a moldy building I understand the desire to have people behave in a way that makes me less sick. I used to have wonderful thick hair. It was also very frizzy unless lots of product was added to it, because of being mixed-race. So, now after 8 years of being on lupus meds, and three years of being on T I have thin, fine, brittle frizzy hair that breaks and falls out all the time. It’s still hard to deal with, but washing it with baking soda is not going to cut it. My practical side says I should just hack it all off again – it wouldn’t be the first time, but I’m not quite ready for that, and I’m a bit vain. The more pragmatic part wonders each time if it’s the last time I will be able to have long(er) hair. So, hair, like everything with living with chronic illness is tied into the spiral of degeneration and fatality as well as of negotiation with the illness, and of cooperation and collaboration with community for the purposes of engagement and sustenance.
Where cruel optimism comes into it, is that there are things that I would like – that I imagine in my grad student life as ways of presenting myself that are beyond my immediate reach as a (very fortuitously funded) graduate student. This is not remotely a complaint, but living with a chronic illness, life becomes a negotiation, and even when it seems like there is enough, there is forever the possibility that tomorrow that money you spent on a tshirt or some hair products will be needed for the co-pay for your blood tests, medication, or for a specialist. The optimism lies in imagining or being able to have things with available capital, and the cruelty lies in the fact that once obtained, they are again unsatisfying, and preclude the ability to obtain other potentially necessary or satisfying things.
I think it could be extrapolated to social capital which I have rarely had sufficiency, and certainly never excess of. In accumulating it against future necessity one gains a sense of security in the face of potential need, but if one spends it, then one has the fact once again of not only being bereft of advantage, but also being in deficit and owing those from whom one has asked favours. I am so grateful to be in a department which sees community rather than hierarchical models of networking, because although I can and have functioned successfully within that models, I know that I function better in a community.