When it comes to health and illness, I cannot seem to separate the two categories. They are not a strict dichotomy. There is a grey area in which they meet, almost invisible to the naked eye. But if you really squint, if you really try to look for it, you can see its outline in everyday occurrences. We are always both healthy and ill, always on the verge of getting sick, always on the threshold. Even a simple cold can have your voice changing, your nose turning red, and your desire to leave the bed halted. But enough with the metaphors. How is this state of being both within health and without health materialized in the same body?
Many years ago, I searched for a term to encompass my experience within a body that oscillates between periods of health and disability. As a Disability Studies Scholar, I needed a term that I could claim as sufficient to describe a state of being that I felt was often neglected. So I coined the term “Random Disability” to exemplify days where my body failed me and I had to claim disability benefits, and others where I appear to others as a “healthy” able-bodied woman. Having been diagnosed with a neurological (and debilitating) condition at the age of eighteen, I spent most of my youth, and now adulthood, negotiating different definitions of being alive and healthy. Being healthy or ill both demand that we look inward. By looking inward we start to establish a relationship with the self that is present within the changing body. This “self” is what is called into question. Is it my understanding of myself and my identity? Who am I in the great big world? How can I find my way out of the woods when I am struggling with basic tasks? How am I to envision a “healthy” life if my body is failing me? How do we measure success and happiness when society bombards us with crippling ideologies like “a healthy mind is in a sound body”? How do we survive both individually and collectively?
Every experience of illness is shunned and shamed, a moral failure on the part of the diseased. We are urged to hide our experiences with illness, mental health included, and parade our healthy minds/bodies. We post our 5K run on Instagram, we post our new vegan diet, our slim bodies, and get infinite likes and support. But to post our struggle with illness is deemed “a call for attention” and simply uncomfortable for the viewer. When we are healthy, we do not have to apologize. But when we are ill, we become afraid and apologetic, until we can emerge back from the rabbit hole and return to the outside world.
The rabbit hole is where we fall effortlessly and later struggle to leave behind this disorienting and alternate reality. This is the new reality that we have to get used to. My body shifts and changes, my sense of self grows bigger and smaller, just like Alice felt as she grew out of her “normal” body and eventually started drowning in her own tears. Everything down the rabbit hole is a strange state of being and nothing is recognizable. But what if being healthy is yet another rabbit hole, another place that is murky and foggy? What if it is another rabbit hole that we need to emerge from, to start seeing things for what they are, that we are all bound to get sick? What if we recognized that being healthy is not a badge of heroism and being ill is not a stigma? What if we begin to accept that both states are random and cannot be controlled? What if we began to see that health and illness overlap in their unpredictability and both cannot be fully understood? What if we do not insist on dissecting each state and claiming we understand the ins and outs, the hows and whys, the beginning and the end?
With Multiple Sclerosis (MS), I have days where I cannot hear or see you properly, or walk to my classes without feeling the heaviness of my legs, and the floor turning into mud beneath my shoes. But I also have days where I power through a Pilates session right before my Introduction to Literature class. And I have days when I think I no longer can teach as the words on the page threaten to defy my skills as a critic. Then there are days where a student struggling with depression fails to submit her assignment on time and does not reach out to me because she feels that hopeless. She has fallen down the rabbit hole that I know too well, and I cross over to where she kneels, where she is unable to grab my hand. I urge her to submit her work, to get up. And in that moment, we meet as professor and student. In these moments of meeting, we both glimpse a reason to keep going because someone has witnessed our pain, our lives. And this pushes us forward, propelling us to stay alive, healthy or ill. We are both here, held together in a collective space of love and survival. We are unseparated, we are not teacher and student, healthy and ill. We do not live in different continents of health and illness, there are no erect boundaries that will keep us at a distance from each other. There is only one reality and that is our sameness, our vulnerabilities, and our desire to see hope in the mistiness.
With the recent chaotic upheaval that is COVID-19, we have all been forced to stay indoors. We have all been locked up, staring at the clock, waiting for this to pass. Some of us have become ill with the virus. Others have become ill with fear of impending doom. And others have relapsed into the pitfalls of mental illness. Our minds and bodies have gone out of their usual sync, their usual tempo, the routine of our lives. Nothing is the same. And yet we have to keep going. I have taught my classes online and felt the isolation of not seeing my students’ faces, their laughter at my sarcastic remarks, their nods of approval, their rolling eyes at my silly remarks. I have had to speak to the laptop (like many other educators worldwide), and that feeling was like my body became a ghost. I could not feel the ground beneath my feet and could not understand the immeasurable distance between us. I felt as though my whole identity as an educator fell freely into the rabbit hole with no clear destination. This time, it wasn’t my body that was struggling, but my whole sense of who I am as an educator, my clarity of thought, preparedness, and control of a classroom. None of this was now available to me. Nothing looked the same to me and instead of seeing my students’ faces, I was looking at myself lecturing to a computer, an integrated camera capturing the wrinkles on my face and placing me in a small frame.
The online classes continued as the students and I tried to get used to the new normal. One day, a student asked how to write an A+ essay. And I paused before answering, finally noticing this obsession with being perfect, being in control of things, and not allowing room for randomness. We were living in a stressful environment and we did not know when we would ever go back to classes normally. Yet, I was asking them to write their essays on 19th Century literature. I felt a huge gap between reality and my classes and told the students that their essays will be imperfect and not to worry because right now nothing is perfect – or even near normal. I wanted to lift this burden off their shoulders. They wanted a state of health amidst the chaos. A state of clarity within the fog of the unknown, answers to their pressing questions, a desire to feel safe and in control of their realities again. And I knew it was their first exposure to a collective trauma that hurt their mental health and state of security. The ground was shaking beneath their feet just like the ground shakes beneath me when I walk to class. I do not know if I will reach my class without falling, without dropping my books, and with my vision still clear. But I have to accept it and think of myself as both healthy and ill. I forgive the chaos, the randomness, and I am grateful I still know my way around the path. But I have had more training in the lack of knowing. They are new to all of this messiness that is their new reality.
I have learned the politics of self-love because of so much rejection and pain in my past. I have learned that self-care is, in the words of Black feminist Audre Lorde, “an act of survival.” This does not mean self-care as in “me, me, me” or a form of individualism. This is a collective call for care and survival. To cross over the bridge to others, to share our experiences and tools for survival. My classrooms are always a “safe space,” and today I need the world to mirror that safe space. Today the world is in a state of distress, fraught with panic, with illness and loss being fearful monsters that threaten to seize us from our healthy selves. Those of us who are already ill know that the panic does not go away, but you learn to live with the awkwardness, the anxiety, the disablement. You learn to reach out to your inner self and talk it down, whisper to it that everything is temporary, that we will either exit the rabbit-hole or adapt to new ways of existence. There is no clarity and we are always in fluctuating states of being, bodies that change, falter, selves that stretch to adapt to the external changes, and we try to settle into some knowledge that we are releasing our hold on everything that we know to be true. There is a newfound freedom in allowing the flow to take us without feeling never-ending fear. The fear is part of the path, the falling ends eventually, and we adjust our gaze to the new scenery.
Shahd Alshammari is an Assistant Professor of English literature at Gulf University for Science and Technology. She is the author of Notes on the Flesh (2017), a collection of stories dealing with illness in Kuwait. Her research includes disability studies and gender studies.