Court Jester

| By Christina Lee |

In the court of illnesses, I wear no crown upon my head. In fact, I am suited most often in my pajamas, preferring the soft comforts offered to me by polyester when pain radiates underneath my skin and picks at my joints. But I dress up this day. I put on pants of a stiffer denim-cotton and a white wrapped blouse, a bit austere for my recent usual taste, place sunglasses in my sightline that brush against just blackened lashes. It briefly feels as if my old-self is present and has taken over for the day.

Downstairs, a friend from graduate school who comes in to visit from Houston awaits me at my door. We find a bench just outside of my home together and their black ringlets, almost cobalt blue at some angles, shine in the sunlight, encircling their head in carefully maintained formations. I ask how they are and they ask how I’ve been, and knowingly, I lend a kind laugh before saying, I am running a DIY clinical trial, attempting all my experimental medications for my seemingly untreatable chronic illness: N=1, they say back, evoking our public health research coursework days. You can leave the project manager job, but the project manager never leaves you, is what comes out of me, when I later reference a spreadsheet of my medications, detailing the ones that have failed me and those that have been helpful, with dates of each trial period. Perhaps I should obtain a Fool’s hat adorned with bells. I joke to cope, but also to close the distance between my friend and I, recalling with concealed pain the job I left a few Januaries ago from not being able to work anymore.

Rather than lament my plight, friends and providers alike can laugh in the face of my illnesses while entertained by me. I perform an attempt at wellness for my friends because while they are not my doctors, I still feel the pressure to assure them that I can be seen as trying, that I am a good patient. I am a good patient, I insist, so that I may be lent the humanity of someone deserving of quality of life. That is, everyone is deserving, but doctors in their snap judgements will determine who they believe is worthy of care. When I first become sick, I notice quickly that friends stop inviting me to their parties and out for brunch, stop asking how I am doing altogether. If I give them the benefit of the doubt, perhaps it is uncomfortable to hear that the answer is that I’m not doing well. Maybe they would rather retract invitations than hear that I cannot make it, or disallow me the autonomy to say that I can’t come even though we both know this already. Worse even, some stop texting altogether after they realize I won’t be able to join them for dinners and coffee for the foreseeable future when my symptoms become so severe. This is hard to fathom, and the realization sours my heart, cuts through sinew with clarity that only a sharp knife can, but my life becomes daily contention with side effects, with worsened pain and limitations, with disappointment when yet another medication does little for my symptoms— I do this mostly quietly now, with friends that remain. I learn the wrong lesson, that trading the swallowed silence for a bit of closeness will let me keep my friendships, because I fear this abandonment most of all, perhaps, so much so that I abandon myself foremost in order to experience some resemblance of being seen. Audre Lorde, in the Cancer Journals, writes on silence and visibility, that we “fear the very visibility without which we also cannot truly live.” Were I to be vulnerable, I might be seen, but I fear that I might also lose. There is little way of knowing how the other person might react in the face of vulnerability. When it gets read as too depressing and they would rather talk about other, lighter subjects, despite illness touching every aspect of my life, there is little I can do to stop their recoil. And so I dance.

What I do not mention to this visiting friend is how I never heard from our mutual friend again after telling her I was physically unable to attend her birthday party on account of becoming suddenly chronically ill. I let them both believe that we simply fell apart. I do not mention the severity of the symptoms I have experienced, that left me bedridden and unable to speak but a few words at a time for months, before they came to see me. I do not mention how this visit will very likely land me in bed again for a few days, not as severely as before, but still a mountain of pain is yet ahead of me to climb. For some reason, my body has learned to translate life’s activities— even those which are necessary and beloved, like friend visits— into devastating symptoms. I do not tell them, lest they create distance and find discomfort in the truth, rather than see me as a capable, animated version of myself.

Largely, I fear being seen, as Lorde might suggest, because when I have attempted visibility before, occasionally, I have been crushed under the realization that truth is not always what brings people together. This particularly seems to be the case with disability. Brushes with mortality scare me, who has to live with it, but it scares those who live able-bodied, too. Importantly, a distinct line seems to be drawn, where able-bodied people live under the false assurance, as I once did, that tomorrow and next year and five years after that are times we can plan for with certainty, that we might not become disabled tomorrow, suddenly, overnight. It is easier, perhaps, to entertain away this reality, for a moment. I attempt to fulfill the court jester’s role, one historically performed by either a disabled person as entertainment, or a person of the court who could deliver bad news and be forgiven and forgotten with ease. As my disability reaches to meet me, I try this role on for size. But part of this is internalized too, this ableism that touches everything is absorbed into my very skin, too, and I imagine, partly, that my experiences will be too harrowing to contend with for others. I have seen it happen before, and I imagine I am too much. At 28, what wounds do I reopen that I may propel myself back into the brain of my high school self, wanting to be liked so badly?

But I know in my heart of hearts, that this lie — the omitting of the truth and skirting of the facts that I am not well, that I might never be well again, that I am trying to manage my symptoms and I get tired of it sometimes, to my detriment, that I find survival exhausting because the support I am not lent by the resources that do not exist, that friends and the medical system and society alike are not well equipped with the language to reckon with disability — will not salvage the friendship I hope we would have, and I should make an attempt at the friendship we could have. I do this undoing in therapy, over weeks, if not months. I do this undoing in the presence of other friends, their love buoying me, consistent, sturdy enough to lean on that it does not fall out from underneath my feet. I undo in the presence of my partner, my sisters, my dog, those that love me in sickness still, not because they are saints but because I am not harder to love than before. We are all rooted in the inherent knowledge that we are all deserving of care, have always been, and always will be.

I see this possibility for vulnerability to lead to a deepening of relationships because I have experienced it too. I must remember that this outcome is always a possibility, that despite having lost friendships, I also know this prospect to be true and real. In fact, it has saved me, this type of being seen. My friends have helped me move apartments when I was physically unable to pack my things, coming in from different cities and states even to assist. They have carried me through the darkest and most severe period of my illness that left me bedridden and barely able to tolerate eating and sitting up. We have adjusted to the ways we understand and interact with each other in the face of this illness, and that has only allowed us to know each other more and love harder. And my disabled kin have taught me how to survive. It is because of their wisdom, their safety, their love, that I am alive too. It is disability justice that is practiced within all these relationships that have allowed me to exist as I am.

Weeks later I meet with another friend, who I have known almost a decade. We have seen each other through a multitude of eras, since we were teens full of college-aged mistakes, moving across the country for our respective graduate degrees, and life thereafter, somehow managing a friendship despite the constant change around us. In front of her, I don’t feel the pressure to assure us that I am okay, and I come out of our conversation feeling much more at peace. We speak about the most recent election in New York and how that might turn out come fall, AI usage in schools, and also our usual topics like our families, our hobbies, our pets. We talk about my health and trialing medications too. It comes naturally in and out of conversation, an additive: if I were to ever work again, and, because I can now sit outside, like this. It becomes a part of my everyday life as much as the movies I am watching or the people that I care about. But this time, the difference is that I do not feel like I am performing to prove I am worthy of care. I find comfort in reveling in the authenticity of this life that we live alongside each other, as I update her on my weeks and she, hers.

In the past week, life passes me by: people I care about end up in the emergency room, our fridge breaks down mid-week and I find myself wringing my hands at lost groceries our landlord refuses to compensate for ten days later, my partner brings back the nicest peaches from the farmers’ market and develops a raging headache that lasts for days, I pull the wheel of fortune card in my tarot deck, a dear friend sends kindly worded encouraging texts, I worry for my neighbors’ safety amidst ICE raids, and I manage my symptoms despite, despite, despite. We take care of each other and ourselves throughout it all. This past week has exhausted me yet there is always unexpected light to be found. But I become so spent like this, with all of life’s happenings, that there is no room for curation nor energy to perform. There seem to be no other options but to reveal more of myself and embrace that the only constant in life is that it continues cycling. I also remain assured by our constant presence in each other’s lives that we remain standing at each other’s side no matter how life keeps turning its wheel. It is because of our relationships that I know that the possibility of this steadfastness exists.

I am improving at leaning into the truth and validity of my experience as means for connection, rather than loss. I know also that I could argue that any loss is an opportunity for bettering all my relationships too. I would rather know that someone who might not accept that my life has irrevocably been touched by both the grief and the reality that chronic illness is integral to my being now, is not able to move down this new path alongside me. I realize that people remain curious and stay despite changes to our relationship in illness, and if they are here, then that is to be taken at face value. I am robbing us of the opportunity to be present with each other when I talk myself into scenarios that don’t exist for fear that they might.

The largest root of our silence, Audre Lorde theorizes, is this fear we must learn to surmount because irregardless of our silence, the world will continue to burn and we must learn to speak in the face of our fear lest we become invisible. She asks us, what are the tyrannies you swallow day by day and attempt to make your own, until you will sicken and die of them, in silence? And so I must learn to speak truth to my experience, for being silent has never done anyone any good, and it has never built vulnerable, deep intimacy between people. These peers of mine love me and are loved by me, and I make efforts to be truthful with them so we may witness each other in full, rather than feel as if I am performing for them. I hadn’t always been an inadvertent performer— illness altered the relationships I have with people. But it has also been clarifying, and allowed us opportunities at renewal in the ways we relate to each other as much as it has offered me loss. Susan Sontag, in Illness as Metaphor, writes, yet it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped. It is toward an elucidation of those metaphors, and a liberation from them, that I dedicate this inquiry. And so I attempt to free myself from the jest, the metaphors, the performance. Living illness as metaphor cheapens the relationships I have, distorts the tyrannies I swallow, and continues to attach virtue to conditions where there is none. I seek to reach towards the expansiveness that is visibility, disability justice instead.