Image of the night sky swirled with red and purple because love is infinite and unknowable. Small part of an infinite star field of space in the Universe. "Elements of this image furnished by NASA".

When you ask, Jennie, “how do you love your sick body?” I am caught off-guard. The question that often bubbles underneath the surface, threatening to fall on my lips, is “how could anyone ever love me—this version of me, sick and broken and dependent?”

It seems I have not even had the inclination to look inwards to ask myself the ways in which I could love myself, and this saddens me. Truthfully, I conceptualized this dialogue about love as external; now, dear friend, you have brought it down to the most basic of all forms with your talk of embodiment, and I have no answers. I often feel I cannot love the body that can no longer play with my children, nor the body that no longer has productive value in a capitalist society, no matter how many theories I may have to critique it.

Yet: there are moments when my partner’s seams begin to come undone, when the weight of loving my sick body (and the accompanying duties involved in our basic survival) crushes: when I read the question on his face—how can I go on like this?; when I start to believe I am not worthy of love. In these moments, despite the lonely crevices of my partner’s doubt, I feel worthy enough to push back against the unfairness of his claims that life cannot be filled with beauty or joy until I get better.

Perhaps it is because I am confronted daily with the realities of living with someone whom I am wholly dependent on, that I question how he could love me, instead of how I might find acceptance in my current state of embodiment.

And to be clear it is more than theorizing about our sick bodies, here. My illness, like many forms of chronic illness, does not qualify me for the illness insurance I paid into while I was working; the government aid I receive does not even cover my rent, and as a family we are not entitled to the same resources (financial and support services) as folks who are disabled by accident or neuromuscular diseases.

These forms of systemic ableism prevent access to home care, cleaning and cooking services, and counselling. This means that my partner must do the work of several full-time jobs. We have also become each other’s emotional support, even though our needs are often in conflict. Having two children and being dependent on one person for basic survival needs, coupled with a lack resources and support, makes me feel very vulnerable to homelessness and abuse.

Sometimes I understand why you have chosen to live apart from your partner, Jennie, because the weight of my illness could suffocate anyone.

Read more in Guts.

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