webs spun by small creatures

lauren samblanet

a brown river with a shadow of a cisgender femme on the surface of the water. the shadow is leaning down, one braided pigtail swinging out, one hand resting on the shadow’s knee. at the edges of the photo, there is a glimpse legs from the white femme whose shadow it is and the legs of a non-binary, white femme.

on arrival, there are no spoons left. i woke without spoons just as i had for many weeks prior. on waking, stretch, rub magnesium oil on neck, meditate with ice hat on. in the shower, so dizzy i grasp at the wall and moan each time i move. pay no attention to the clothes i robe my body in. tend to cat, tend to pain. no spoons, no energy, just everything tilting and spinning, just bright pain on the left side. meals and outfits become as simple as i can make them.

on arrival, i’m in polar bear fleece pajama pants and a sweater. on arrival, my hair is disheveled, frizzing toward winter sun. on arrival, i forgot to look in the mirror and the mask acts doubly – to protect me and others from covid and to hide the blueberry remnants from the morning’s smoothie in my teeth. tend to pain, everything as simple as i can make it. winter is more vibrant than my life. i feel unanimated. no spoons, just bodily collapse.

from doctor appointment to acupuncture to therapy to the grocery store. everywhere i go, i’m in disarray. everywhere i go, everything tilts and spins. sound cuts out in my ears and is replaced with a high-pitched hum, then the pulsing sound returns as if i can hear the blood moving through the veins in my ears. lights glare and amplify the nausea. pain on the left side glows a bright white that pounds like a hammer hitting my head over and over. i try to speak but aphasia grasps me – words form slowly and when mental thought hits air via throat and mouth, the words are not what i expected them to be. pressure builds in my ears, like being on an airplane but nonstop all day. i make it through a work meeting, send two emails, collapse onto the couch and try to find sleep through this neurological symptom soup.

a cisgender, white femme lays on a pink couch with a folded green and white knit blanket at the end of the couch. there is a cream-colored blanket over her legs and she wears a leopard print sweater – only her hand and forearm are visible. she rests her hand on a black and white cat’s head.

in therapy, for nearly two years, i talk about my inability to accept this thing: chronic. just like with my queerness, i feel i’m not enough. i worry others will think, like with the rapes, that i made it up. or that i’m exaggerating. i struggle to take sick days from work. i struggle to simplify my life. i am aware that my illness is not as bad as what others live with. like with the rapes, how others have lived through more violent rapes. i am aware that my privilege makes tending to my illness easier than it is for so many others. i seek a cure – a reason why this is happening – a medication or treatment that will make the symptoms cease. at the same time, i’ve lost faith that any treatment could help when all the ones i’ve tried have failed. chronically, i have been told what happened to me is not that bad. chronically, i have felt like a child dealing with what is too terrifying, too much for any child to hold. chronically, i question my own experiences because of internalized biphobia, internalized ableism, internalized victim blaming.

in an all-day therapy session, i cry uncontrollably as my body begins a major collapse. unable to walk without my therapist lending me her shoulders, i cannot contain it any longer. i weep and tell her through tears and snot that i keep waiting to ask for help until it’s bad but it is bad already? at first, like a question. then certainty floods me and i cry harder. i am a child again, helpless in the face of what’s happening to my body without my consent, without any ability to control it.

kiki sends me something on instagram about how we always ask if we trust our bodies but do we ever ask if our bodies trust us? i’m ripped open. my therapist asks if i’m willing to commit my life to my inner child who is in pain and it takes no time to know that, yes, i will be here for her til the end. but then i wonder what would happen if my therapist asks if i’m willing to commit my life to my inner chronically ill part or to my body. would i answer so quickly and with such dedication?

trauma is cycle and pain is a cycle and nothing is linear. i tell my therapist how much trying to accept my chronic illness feels like many years before when i tried to accept my ptsd. we’re back to what’s chronic. in his book losing music, john cotter writes, “i should have researched disability rights by now but i’m sick, not disabled: i can be cured.” i know where john is headed – this line comes early in the book, which at the time of writing this, i’ve only just started, but i know what’s happening because it’s also been happening to me. like john, i’ve begun the slow process of moving from i’m sick, i can be cured, to trying to accept that migraine disease is a chronic, disabling illness. and 2023, my most ill year yet, proves that the disease is certainly disabling. i see a post on instagram about how being chronically ill means a lot of waiting. that’s what it feels like – my life is on hold – i’ve simplified as much as i can – i’m afraid to do anything for fear of my symptoms worsening – i’m unanimated – i’m collapsing and waiting and afraid.

so finally, after much processing in therapy, i ask for help. ebs suggests on gchat that i read books by other chronically ill folks like frida kahlo. aubrie sends me cane suggestions and we mutually check in on each other and offer support through flare-ups. lily listens with such attentiveness and care as i tell her my fears for our upcoming trip to moab. my old acupuncturist offers to do a home treatment even though i live outside of the city she usually offers this service in. amy drops off freezer meals and magazines so i can make collages after seeing my facebook post about how flared-up my illness is right now. usama holds me tight through the pain, checks in on me throughout the day, and offers to drive me to doctor appointments in the summer once his semester ends. brittany is flexible with rescheduling or canceling our weekly writing time and always reminds me to rest and be gentle with myself. elizabeth sends me easy recipes over instagram and kiki sends me pain relief recommendations. christy texts to suggest i read virginia woolf’s on being ill. like in high school, social media and text messaging offer me deep support and community. then, i was bisexual in a biphobic environment and reeling from childhood trauma. i used technology as a way to find community and to keep in touch with friends when i felt most alone, most rejected. now, it’s the same thing. through these devices and platforms, i feel held. i learn more about my illness, about disability and ableism. i tell usama that i seem to be attracting other chronically ill folks to my workshop classes and i could not be more grateful for the gentle, supportive and vibrant community of disabled folks around me.

it is through this support that i feel something in me come alive again. i look in the mirror and admit it: chronic. but instead of turning away in grief, i go in closer to this thing, to what is chronic. i ask chronic how i can support her, how i can better tend to her. i ask my body the same. i commit myself to them.

i order the cane for stability when the vertigo and weakness are present, the tens unit for acute and preventative care, seabands for nausea, earplugs for noise sensitivity, the green light for photophobia. from my sick-couch, where i rest so much of the day, i watch project runway and on one episode, the designers must make garments that show the future of fashion and each team features one “body modification” like shoulder horns, chest feathers, scalloped backs. christian asks the designers if in the future, they would pay to have their bodies modified like this. i think about modifications and accommodations. how with cefaly, my tens unit, on my forehead, i look sci-fi, cyborg. walking with the cane, i am met with pity from some folks i encounter. what happened? oh, you need a cane now? as in, oh, things are that bad? but i don’t think of the cane as some major shift – this illness has been modifying my body for years, just invisibly. the cane isn’t pitiful – i now feel safer taking walks. the cane and the tens unit feel like extensions of me – another way of finding support as collapse continues.

a cisgender white woman with her brown hair braided into pigtails, each tied with a red ribbon. she is wearing a black tanktop and a blue, preppy sweater, and has a gold choker necklace and small, pink dangling earrings on. she is in green lighting with a tens machine called cefaly on her forehead

my therapist notes that the color of the cane matches my shoes. i hadn’t consciously considered that when ordering it but her noting this and something i read act like a key that turns and i continue coming to life. i pick up the diary of frida kahlo. i look at images of frida online and then read carlos fuentes’ introduction to her diary and am not quite sure if i think his descriptions are ableist or if they are in fact just what my collapsing body and mind needed to read most:

the laces, the ribbons, the skirts, the rustling petticoats, the braids, the moonlike headdresses opening up her face like the wings of a dark butterfly: frida kahlo, showing us all that suffering could not wither, nor sickness stale, her infinite variety.

should we, as chronically ill and disabled folks, have to show anyone anything about suffering? should we have to be vibrant? should we be required not to stale? and yet, reading this, i look at my closet of bright clothes and i see my hair ribbons and bows, my earrings and my makeup which i have largely been ignoring for months. suddenly, i think of the way, in high school, i used clothing and makeup – both as a way to mask the darkness i felt internally and as a way to express my creativity, my queerness, the tiny bubbles of desire to stay alive that would rise in me.

in a video i see on instagram, alok vaid-menon says something that strikes me, too, “these people would come up to me and they’d be like: why are you so dressed up, are you going somewhere, like is there an event? and it’s sad to me that people don’t see living as the event. i hate to break it to you, world, but you don’t have to wait for the party, you don’t have to wait for fashion week, you don’t have to wait for burning man, you get to have fun now, you get to be free now.” so all these pieces begin to fit inside the puzzle of me and what is chronic – the internet’s web of more support from afar, the accommodations and devices and aids, chronically ill and queer folks writing about the way fashion is another type of support or aid, and suddenly, i’m actually looking in my closet again, letting whimsy and play guide me as i create outfits that feel good on my body and that add vibrancy into what felt unanimated. this isn’t to say that i can do this everyday – so many days, my body cannot handle this act of play and on those days, we just rest. i remind myself that i don’t owe anyone, not even myself, forced vibrancy when it is not what i actually can handle or desire. but i begin to notice that the outfits build up a kind of deep care and add lightness to things when all feels dark, so i try to prioritize dressing up and adorning myself when i can.

red and white sandstone rocks form a canyon wall. beneath, the rocks are sage-colored desert shrubs and then a lavender field – a super-bloom of lavender flowers that takes over the canyon floor. in the foreground, are more sage-colored shrubs and red earth. above the rocks is blue sky with some white clouds.

the last time i was in moab, my body showed me the truth of my illness. i grew up in a hiking and backpacking family – i had been pushing my body to her limits in nature for many years and called that holy, brave. but the last time i was in moab, there was no pushing through. i had to turn around on the second day of a backpacking trip because aura took hold of me and i knew the pain and symptoms would follow soon. i’m afraid for my trip to moab with lily because i don’t know how to be in nature yet without pushing myself too hard and i’m not yet very good at asking for help and accommodations. but i feel so safe in friendship with lily and we talk several times about what the trip might look like due to my illness and i try to remember whatever happens, i will be held with love and care. we plan to take photos together and of each other, so i go thrifting before the trip to find more floral blouses to match the spring that’s just beginning to bud here in boulder.

on arrival, we are two femmes looking cute as hell, feeling safe and supported in a deep way. moab greets us with those massive, red sandstone rocks, with the muddy and ever-beautiful colorado river, with the canyons that cut the landscape and render me small in the best possible way. there is a lavender super-bloom on the way into canyonlands – the whole ground is purple. the cottonwoods are beginning to leaf and other small bushes and grasses paint the ground a vibrant green. lily and i communicate with clarity and gentleness throughout the trip. they lead me through internal family systems work when my inner child becomes fearful of my abandoning her on the trail. we cry together amidst the red rocks and hug each other tightly. we do breathwork and then we really listen to our bodies and turn around when the hike becomes too much. we rest all morning. we remind each other to drink water and eat snacks. we stand in awe of the arches, the canyons. we stand with our feet in the river, lily’s lilac shirt with billowing sleeves like a desert flower opening to the sun. we dressed up like this for the whole trip. i wear the floral shirts from the thrift store, braid my hair into pigtails, wear butterfly clips and big pink, floral hoop earrings. we do our makeup. we do not make apologies for wanting to feel beautiful, we do not make apologies for needing rest. all we do is love each other and ourselves and this gorgeous landscape for four days.

massive red sandstone rock formations meet the muddy colorado river. on the other side of the image is the bank which is covered in bright, green grass. in the distance, are the snow-tipped peaks of the la sal mountains.

when we stand with our feet in the river, it’s so cold that my feet become ice and the pain in my head seems to travel through them. my shadow is playful on the water, like peter pan, a little mischievous, reminding me of all the parts and life within me that are still alive, even if some days, they feel hidden. i feel like one of the lizards we watched, so tiny in this place where the rocks and canyons are so huge. here in the canyon, i feel my feet in the water and meditate on all who came before me – queer, disabled, healing from trauma; on the ecosystem of the desert – how such vibrant plants and creatures thrive here despite the harsh conditions; on the web of love and acceptance we can weave on this earth while we’re alive, if we choose to do so, if we turn away from hate; on how what once was small – first sand in the ocean – can come together due to the conditions surrounding and form into something bigger, bigger, massive; how even when conditions like wind and rain alter the landscape, it goes on, life continues.

we’re in the river and we’re not touching but i feel lily holding me, feel myself holding lily – the river is witnessing us, the rocks too. and even if we are so small, we were here, dressed like two flowers, vibrant and alive for this brief flutter of our lives and even as the landscape tilts and spins, i hold tight to my cane and i am nothing but grateful for my small life, for these webs of love and support that are anything but small.

about the author

a white, cisgender woman with brown hair in a pony tail smells pink peonies, which take up the bottom right portion of the photo. she is wearing a black dress with red flowers on it, gold hoop earrings, a choker, and has maroon and black glasses on.

lauren samblanet is a hybrid writer who cross-pollinates with other forms of making & other makers of forms. her book, like a dog, is forthcoming from punctum books. some of her writing has been published in a shadow map: an anthology by survivors of sexual assault, fence, dreginald, entropy, bedfellows, the tiny, crab fat magazine, and aglimpseof. she facilitates workshops through reinventing creative process.