We have never met in person. Earlier this year, a mutual friend connected us through our commonalities: the isolation of illness, the need for mutual support, our desire to tell our stories—the spark. We have existed liminally since, getting to know each other on Skype and over text. Here, we offer a discussion on love as two chronically sick and disabled queer femmes, touching on the topics of embodiment, family, friendships, partnerships, parenting, and community-based care.
These conversations, written over the month of September 2016, are an act of co-creation and inspiration—a tapestry of moments woven together to illustrate how love operates in difficult, complex, and invigorating ways in our lives. Through writing to each other we co-conspire to reveal the truths that exist within our experiences: to dismantle ableism. As we support each other to find and share our stories in an inherently ableist society we recognize that this act, in itself, is an act of love.
Jennie: When I told a sick friend about this project, that we would be addressing questions of love and chronic illness, she wanted to know—her body leaning in towards mine, eyes bright and hands held up like paws waiting to grasp a meal—“so, how do we love our bodies?” Like us, she wants to know if (and how) it’s possible to love the messy, unpredictable, and disappointing reality of life in a sick body.
I feel compelled by the question of loving my sick body, whose worthiness I have been long accustomed to doubting. We both know what it means to feel betrayed by our bodies, to frame them as enemies, our nemeses even—cursed structures in which we are caught and cannot escape, from which we choose, understandably, disembodiment—a distinct and necessary separation of self from the pain of the body.
Embodiment increases awareness of pain—every twist and strain and twitch, each ache and scrape and weight, the burning and pounding of muscles, ligaments, joints, skin, organs, and nerves. On the other hand, embodiment also means more awareness of feelings: pleasure, joy, and silliness. When so many of my survival strategies involve actions that take me away from the pain/body—distraction, medication—not closer to it, how can I find some measure of balance?
Until recently, I have been telling myself: “when you are better, then you will love yourself,” because the concept of loving my sick self was so unacceptable. But what is the alternative? It seems I must find ways to love this numbed out, dissociated, disconnected, and ultimately sick body of mine.
Kara: As I sit here, the sweet smell of fall starting to settle like a comforting blanket of relief from the heat of the last week, I am surprised at the question put before me. 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.
Jennie: I, too, know what it means to question how anyone could love “this version of me”—needy, volatile, depressed, boring; I still feel most “loveable” on days I can say “yes,” when my body is light with energy and possibility. Perhaps these are days when I am naturally more embodied and certainly more “productive” in the capitalist sense.
Over the last few years, as old friends have disappeared along with the “old me”—my chronic illness, presumably, “too hard” on them—I learned to believe that I am “too much.” Sometimes I worry that my partner is “wasting” his life with me, that no one can, or should, have to share this with me. Not living together is one way I try to protect him from the full catastrophe of the illness, from watching it suffocate him.
Speaking of suffocation, when the season changed abruptly this week—temperature dropping, humidity and atmospheric pressure increasing—pain and fatigue, as they do every fall, began their ruinous work of pulling me even further away from life, of putting me back in my place after the short respite of summer. It becomes harder to feel embodied as the familiar gasping, choking, tunnel vision, and weight of loss settles in over my life, layer after layer, holding me back from who I could be and what I could be doing. I know depression is waiting for me: I can feel it at my edges, skin and hair slowly absorbing despair, shortness of breath as anxiety and rumination join hands to push the air out of my lungs. I know I become “harder to love” the more depressed I get. And I know that my depressions are in large part fuelled by the internalized ableism that tells me I’m a failure for not “getting better,” for not being more independent—for needing so much care.
The ableism that tells me, tells us all, that illness and disability make us worthless and undeserving of love. But because I am not yet depressed and because the sun is shining as I write this and because it has to be different if I am to survive, I try to imagine what the people who choose to love me “sick and broken and dependent” would say. Faces of loved ones surface, their bright eyes and sweet smiles: It’s just suffocation. You feel it all the time. What’s a little suffocation if it means I can love you and be loved by you?
Kara: And I am one of those loved ones. Why is it so much easier to love you exactly how you are than it is to love myself in this body? I love you not in spite of your illness, but because of it.
The faces of loved ones surface for me, too, as I read your words: the friends who grew closer to me, the community members who bring me homemade food, the people (like you) that I began friendships with because of my illness. And now I also have romantic friendships—telling my friends I love them, kissing their foreheads, car rides by the ocean at sunset—that have taken the sting out of watching those closest to me shrink under the weight of resentment and sadness.
It is ableism that teaches us to fear, pity, and dismiss sick and disabled bodies. And it is ableism that slips its sticky fingers up under the gratitude, up under the overflow of love to embed the pernicious fear—I know you feel it, too—that love won’t be enough.
Jennie: I feel similarly for the community of people who care for me. It is because of them that I am here, well enough to focus on writing and empowered to challenge the ableism that tells us we need to be healthy, whole, and independent before we can love and be loved. It is ableism that teaches us to fear, pity, and dismiss sick and disabled bodies. And it is ableism that slips its sticky fingers up under the gratitude, up under the overflow of love to embed the pernicious fear—I know you feel it, too—that love won’t be enough, that the grief and loss and pain of our illnesses will, eventually, take from us the loved ones we so cherish and depend on for our survival.
And then what? Loving ourselves won’t get dinner made, won’t drive us to our appointments, won’t witness our pain. This fear, I must remind myself over and over, thrives on doubt, isolation, grief, and sadly, the truth—I have lost many friends because of ableism. The process of becoming disabled by chronic illness has profoundly changed how I communicate, my sense of self, and all my relationships. What I would like to see, what I need to see, are more examples of sick people being loved in community and loving themselves as sick people. Could we create these communities? Become those people?
Kara: But we are becoming those people, aren’t we? We are creating communities of care each time we write vulnerable posts on Facebook about being sick and disabled; demand accessible events from our queer and trans organizers; refuse to hide our symptoms from people, even if illness makes them uncomfortable. We create these communities each time we talk about ableism in our everyday conversations.
Requiring that our basic needs are met is an act of love for ourselves. Creating a culture around us that centres illness and disability is an act of love for our communities. And it certainly feels hopeful when I think of the acts of love we receive from (almost) strangers: someone bringing vegan nut butter stew to a mutual friend’s party on the off-chance I would be well enough to attend; an old friend from years ago sends you money to pay for the work you put into a social media post that went viral in our communities. By accepting these offerings, and by making a point to share these examples through our writing, we are telling others that their sick and disabled bodies are worthy too.
And yet, as you pointed out, the beautiful truths in our lives are embedded in another truth: the fear of not eating is fucking real. Both exist simultaneously: there is wonder and lightness, and we are bound by ableism every moment of our lives. How we love, and are loved, is shaped as much by feelings as it is by structures. It is how we get our basic needs met. In a society without enough support, resources, and value for bodies like ours, love is how we survive.