Kept Awake: My Text Is a Nightstand Is a Text for You

I’m writing this with you, Manon, in hopes of warding off another night of pain. I’m awake, kept awake by pain. You too are looking for a way to inhabit insomnia. Little by little. Maude, let’s share these sleepless hours, let our sentences pile up, let selves melt together, let the I fade away. To better see in the darkness, I surround myself with light, and with lightkeepers: Emma Jones, Anna Cowley Ford, Hazel Meyer, Alicia Gallienne, Sarah Bertrand-Savard, Anne-Marie Alonzo, and Claire Marin. They light the way for each other, as your words light the way for mine, and mine for yours. In the darkness, friendship gleams. Let’s look at artworks that don’t seem to want to be called artworks. Like the photo-graphs that Emma publishes on her blog (TheGeographyOfIllness.com). Her Night-stand Collective (2015 —) is a resolutely multifaceted project, free in both form and timeline. She describes it as documentation, and she has presented it both as an installation (Victoria and Albert Museum, London, November 2021), and as a soundwork (Voices From the Nightstands, published on her blog). Hazel chose to share A People’s History of Prednisone (2021) via her Instagram account, instead of through more official channels, at least for now. And, on her website, Anna presents her Weekly Calendar/Tracker Journal (2017 —) not as an artwork per se (Migraine/Pain Work) but as a resource for sick people to use, with the goal of coming together (phase II). All three of these projects articulate a tension between working and unworking (dés&oelig;uvrer). They also investigate the telling of sickness, and the power of this telling to bring together those who live with pain. The Nightstand Collective solicits and showcases photographs taken by people living with chronic illness. Incomplete (because incompletable), this collection is perpetually open to new contributions. Going through the seventy-seven nightstands currently documented here, I am struck, like Emma, by all the recurring elements: tubes of lotion, glasses of water, plants, knick-knacks, amulets, pillboxes, lamps, notepads, books.“The original goal was to collect 100 nightstands and collate all the data to see what patterns could be seen in the items.” Emma Jones quoted in Laura Baliman, “The Nightstand Collective: bed artists revealing telling aspects of their lives,” Disability Arts Online, February 3, 2022, accessible online. The photographs are labelled Fibromyalgia, Diabetes, Endometriosis, Major Depressive Disorder, and so on. I look for my own objects, and the name of my own illness. I want to feel included in this collective, to be its friend, to talk about my nightstand, to let it speak too. Emma Jones(from left to right)Pulmonary Hypertension, 2017; Bi-Polar, 2021 © Sean Balko; Major Depression, 2015 © Emma Jones. Photos: courtesy of The Nightstand Collective Emma describes herself as a storyteller.Emma Jones, The Geography of Illness (blog), “About” section, accessible online. The objects collected on these bedside tables reveal our nighttime tools, worries, prayers, projects, duties, and anger. Devoid of explanation, they offer up a loose narrative all the same. I tell you I’m afraid of the night because I don’t know what it has in store for me. But in reality, I’m afraid because I do know. I worry, I plan ahead, I get ready, I make a checklist: three pillows for my aching limbs, linden tea, black-out curtains, blankets’ weight evenly distributed, socks perfectly adjusted. My list is not unlike many that accompany the collective’s photographs: 1. Lampshade — With cat hair on the shade.2. Hand Lotion — The Ordinary.3. Cuticle oil.4. Glass box with keepsakes.5. 3 books : — Ill Feelings, by Alice Hattrick — Everybody: A Book About Freedom, by Olivia Laing — Visions and Longings: Medieval Women Mystics, by Monica FurlongAnonymous entry, “Mialgic Encephalomyelitis. Endometriosis. Generalized Anxiety Disorder,” in The Nightstand Collective, Geography of Illness (blog), accessible online. However, despite my checklist, and my precautions, the night ends up being sleepless. Emma Jones(from left to right)Complex PTSD, 2017; Major Depression, 2015 © Emma Jones; Fibromyalgia, 2021. Photos: courtesy of The Nightstand Collective I start new medication today. I tell you that the little bottle is sitting here on my nightstand (my pill organizer never enters the bedroom; it stays on the shelf with the canned beans). I stretch reality with the goal of properly transposing my experience, using the Nightstand Collective’s vocabulary. Although Emma says her approach is non-curatorial, she does impose one rule. In order to truly represent “the heart of the unedited, raw experience of chronic illness,”Emma Jones quoted in Katie Dupere, “Photos of nightstands empower people with chronic illnesses,” Mashable, February 9, 2017, accessible online. photographs must be taken without rearranging the objects on the nightstand. But, despite this, I have the feeling that these piles are somewhat staged, not unlike the words we carefully choose in order to describe and share our pain. It seems to me that these constructions, whether of language or image, can’t be reduced to mere honesty. These representations aim to bring us together, and, ultimately, to see us, rather than to know us. When I sense that “away from my bed / all collapses,”Sarah Bertrand-Savard, Les forces vitales (Montréal: La Mèche, 2021), 28 (our translation). it’s because of how these objects are arranged on my nightstand, how they speak, and how they bring me closer to you. But I know this arrangement is fragile and impossible to freeze in time and space, much like my body, which is no longer able to find a position that might allow it the comfort of sleep. Prednisone does ease my pain, but it also makes sleep impossible. I add it to my list of resources. I haven’t, however, begun to enumerate its side effects. I have yet to find the words, and, when I do find them, I don’t fully trust that they will be understood by others. A short video shows the cover of a blank book, on which I see a hand writing out “A People’s History of Prednisone — Edited by Hazel Meyer.” Hazel lives and works with Crohn’s disease. In her practice, she reflects on the fragmentary nature of our stories, and on how they depend on the material nature of the archives that we keep in order to be told. In just a few seconds, Hazel opens up a space — the space of the book — that I imagine might contain the stories of everyone who has ever treated their pain with prednisone. But Hazel stops at the cover, leaving the pages within blank. As such, her book is a sort of open invitation, the expression of an active desire for community. The encounter with Emma’s and Hazel’s projects raises many questions for me. Does the narrative urge inevitably come up against the wall of narrative itself — that is, the impossibility of narrative? At some point, does the need to be seen take precedence over the need to tell one’s own story? And what, then, of the collective story of pain? Is such a story possible? Hazel MeyerA People’s History of Prednisone, video still, 2021. Photo: courtesy of the artist Living with pain is an experience of coming loose, of coming apart, of a fragmented body struggling to archive and share its story, limited as it is to private language and private vocabulary. Given this limitation, could handwriting possibly be a means by which the body leaves its mark, so that each hand’s own singular trembling might find a way to translate itself onto the page? Is it necessary to keep some kind of diary? On Anna’s website, I order a copy of her Weekly Calendar/Tracker Journal, which aims to facilitate the archiving of chronic pain according to predetermined categories: food, exercise, medications, hours slept, to do/goals, mood, and positives. Anna is a chronic migraine sufferer, and much of her work explores ways of communicating this invisible pain, and ways of understanding the pain of others, with the goal of “engag in a conversation.” Much like Emma, she proposes the ethical and aesthetic constraint of honesty: “The more honest and genuine your entries, the more impactful the calendar will be.”Anna Cowley Ford, Weekly Calendar / Tracker Journal, flyleaf. See annacowleyford.com/migraine-pain-work/weekly-calendar-journal. Anna hopes that the archiving of everyday life will be beneficial for other pain-sufferers. However, for me, my thorny relationship with narrative runs against the grain of her proposal: “To tell pain only serves the telling itself. Pain is private, ferociously personal. / So little can be shared”Anne-Marie Alonzo, L’immobile (Montréal: L’Hexagone, 1990), 19 (our translation). (perhaps even with oneself). Paradoxically, this agenda foregrounds my desire to blot out certain moments in time, particularly my sleepless nights. Not in order to deceive myself, but rather just to survive. So, reluctant to add to my already-present fatigue brought on by constantly explaining my disordered and sick body, I am drawn to the openness of her invitation: “Please make this space your own.”Ford, Weekly Calendar, flyleaf. For the pages here must find a way to stay blank, in order to truly depict my silent and agitated nights, in order to remain open to a language that searches for itself in the darkness. Anna Cowley FordWeekly Calendar/Tracker Journal, 2017. Photo: courtesy of the artist It’ll be okayI’m not afraid of the darkVultures don’t liveAmong the starsAlicia Gallienne, “L’astre noir,” in L’autre moitié du songe m’appartient (Paris: Gallimard, 2019), 218 (our translation). In Emma’s, Hazel’s, and Anna’s projects, which all strive to archive “scrambling time and matter”Julietta Singh, No Archive Will Restore You (Goleta, CA: Punctum Books, 2018), 29. (here, the time and the matter of chronic pain), we find disorder on the nightstand, fragmented time in the agenda, and silence in the stories yet to be written, as well as in those we are only just beginning to ever so shakily write out by hand. I try to measure the difficulty, or perhaps even the impossibility, of finding an overarching narrative, and of understanding the space of pain, our space, this “quiet space where the items speak for themselves.”Emma Jones, quoted in Elizabeth Rooklidge, “The Nightstand Collective,” Able Zine, No. 2 (2021): 71. “Some mornings, we are spared, and pain forgets about us. Some mornings we are cured… We wonder if this incredible feeling of being healthy, of simply being alive, might possibly last. But no, darkness falls, and enacts its revenge.”Claire Marin, Hors de moi (Paris: Allia, 2008), 123 (our translation). Maude, when I twist reality, when I sometimes forget my pain (as pain sometimes forgets me), when I can’t manage to connect my reprieves and vengeful nights, when I’m not able to believe in what’s happening to me, it’s because the deterioration of my own body deteriorates the very possibility of this narrative. Manon, what if I told you that by the light of these lightkeepers, I might be able to hone my attention to that which cannot be revealed, neither by language nor by the archiving process? What if, instead, I try to learn the language spoken by the unwork of my body, of my story, the language of sleepless nights, the language of insomnia? A community doesn’t perhaps need to come together around a shared narrative, but simply around the very act of being together in this imposed wakefulness. Translated from the French by Simon Brown Anna Cowley Ford, Emma Jones, Hazel Meyer, Manon Huberland, Maude Pilon

Kept Awake: My Text Is a Nightstand Is a Text for You

Suggested Reading

Transfusing Abstraction : Darren Harvey-Regan’s Metalepsis

Guest Curating in the Museum: Lost in Translation?