In Sickness and in Health

My body is a temple, but one that is unkempt. I exist outside of the margins of normative time and space, because of my body’s limitations.

What do I mean when I say LIMITATIONS?

I suppose I should start like this: Hello and welcome back to DiesDas & The Other, my on again off again podcast and writing project, which, in the upcoming months, I aim to write and record more regularly. I have aimed to do so already, but alas, such is the nature of a body outside of the norm. Well, I suppose this time my limitations were imposed not solely by my body, but from further outside, and unjustly so. If you know, you know, and if you don’t – it’s a whole thing I am trying to leave behind me.

My mind falls out of the norm in various ways, but my body does as well. It prevents me from doing what I want to do, which has now led me to the conclusion that it might make sense to apply for disability benefits. Of course, the road there will be a hard and arduous one, and given the German system of percentages of disability, there’s no telling when I would finally receive benefits, or if, indeed, at all. All of this has made me think more in depth about the concept of time as it pertains to health and disability.

My first short entry on Steady dealt with the concept of time, more specifically the notion of crip time. I have been wanting to expand on that notion for some weeks/months now; the issue has been that, due to reasons entirely outside of my control, I haven’t been exactly feeling well. I am still in the midst of a small depressive episode, and I have some stomach issues, so I was going to postpone this script again. But then I thought: What better time to write about illness than when ill?

I should probably first acknowledge that in a lot of ways, I am lucky. I am still able to work and function, even under pressure. At times, I think that I even work better in times of crisis. In Feminist, Queer, Crip Time, Alison Kafer discusses the overlapping of times outside the norm, writing:

“One could argue that queer time is crip time, and that it has been all along. Queer time is often defined through or in reference to illness and disability, suggesting that it is illness and disability that render time “queer.”

Not only might they cause time to slow, or to be experienced in quick bursts, they can lead to feelings of asynchrony or temporal dissonance; depression and mania are often experienced through time shifts, and people with various impairments move or think at a slower (or faster) pace than culturally expected.”

Feminist, Queer, Crip, Alison Kafer, 2013,  p. 34

I first came into contact with Kafer’s work via Jonathan Garfinkel, who is currently working on a book on chronic illness, and I would be amiss to say that there aren’t friends and acquaintances who have worked on the topic extensively and/or shared their experiences in the German art sphere.

To me, the intersection of different illnesses, experiencing a state outside-of-body, unable to do what I want to do, makes the marked otherness of my body incompatible with illness, in that queerness and illness may be forms of self-expression you grow into out of your identity, but the constructed identity, the identity that is thrust onto the Other in terms of race, makes the intersection more challenging, as do differences in class.

For instance, my partner’s mother was a single mom, so there was no option for illness. Whenever he was sick, even when he had a high fever, he still had to go to school.

In my case, my chronic fatigue tethers dangerously on the edge of ability. My ability prevents me from claiming disability. And, after all, who wants to be disabled and ill on top of being, for instance, queer or non-white?

So, I exist outside the margins of normative time and space, and those margins carry no prospects for me. In practice, this means getting up and out of bed, even though I know I shouldn’t, even though I am out of energy.

It means disappointing people constantly.

Being unable to attend certain events.

And financial instability due to networking limitations.

Networking in the arts, unfortunately, is incredibly important. On the one hand, I am extremely critical of this practice. On the other hand, getting a feel for the people you intend to work with is only sensible. I wouldn’t want to work with someone artistically whom I had no connection with. And these connections, for the most part, have to be established in person.

Ultimately, sickness becomes an issue of class. Sickness is not an equalizer. If anything, sickness shows who can afford to be ill, who can benefit from being ill.

I cannot benefit from illness, while others can.

Today, I was unable to make a simple phone call. Too tired. I can’t tell which of my ailments is responsible, which, I suppose, is part of the immanent problem. But is it really a problem, I wonder.

Why focus on the sickness, the ailment, the symptoms, why this attempt of aligning Crip Time with normative structures?

My body is a temple. It is the temple that it is, no more, no less. There is no need to lament that which does not exist.

Resistance is existing in a body outside of the norm. It is what Audre Lorde says, after all.

Affording an illness that I can neither afford nor is afforded to me.

Resistance is existing despite all of the restrictions placed onto what does not fit into the norm.

Those able to talk about sickness, myself included, are not typically the ones most affected, even though the impact is undeniable. And even I can see people able to profit more than I do.

The goal with chronic illness is for things to at least not deteriorate.

Of course, this goal is fated to shift, as well. The goal is for things to not deteriorate too much.

My body is a temple, but one that is unkempt. I exist outside of the margins of normative time and space, because of my body’s limitations.