Thirty-seven days since I've left this room, but for a well-worn set of footprints from here to the bathroom door. My mom brings me food, wondering, worrying, waiting. Am I sick, or is it all in my head? Six weeks ago in the emergency room, plastic-clad doctors handed me a bottle of pills that made me sicker. I hardly blame them. Everyone's scared. There are no lesions on my lungs, so I must be fine. The summer heat is stifling, though the frosted-over air conditioner buzzes without ceasing. This isn't a hospital room, but it has the sounds of one: equipment beeping, fans that hum, heavy breathing, and footsteps in the hall. I'm hardly here, and it's hard to remember later. I know the world went on outside. I know that people died and others wanted to. I know my friends were scared, and there were protests in the streets, and things shut down and opened and shut down again. It's all connected and not. If I were me I would care. Four months since I've left this house, but for scattered sets of doctors appointments. I keep my eyes closed while we drive, but this time when my feet hit the grass they're open. A two-hour trip to meet a puppy. He's tiny and blue-eyed, and he's never been outside either. For a moment I forget the pain and fear and uncertainty when sharp baby teeth cut into my hand and I laugh. Three weeks later I bring him home, and I start to live again. It isn't easy, coming back to a world you've all but left behind. Cooking makes my fingers tremble, and walking makes my legs ache. It will be a year before I drive again. This puppy and I learn it together—slow, up and down stairs. Scary, seeing the world for the first time. I brush his hair and mine, and darkening brown eyes watch me while I do my laundry. He sits in my lap in the drive-through vaccine line. The nurses smile when they see him, cooing as he watches with suspicion. One night he's sick and I sleep on the floor. I come-to with him snoring on my chest. We're in this together. He howls when I go back to school, so he goes to school, too. On weekdays I'm the oldest in my college classes, joyfully learning to think again. On weekends we sit in Petco, learning about separation anxiety. It's common after the pandemic, the trainer tells us, so many pets raised without an owner leaving their side. I think that I have separation anxiety, too. Leaving the house isn't fun, but I learn to do it. I backslide in the winter, old aches setting in again, lungs rattling in the cold. They're still not sure what's wrong with me, and I'm past the point of caring. I just want to be free. My dog loves the snow and I watch him play in it, sneezing when he sticks his nose into the dust. I hang on for him, because we're in this together. He sleeps beside me in bed each night, like he knows that without him I'm not safe. We trudge through the bleak months of winter, pausing to bask in the colored Christmas lights before January sets in, gray and bitter. When the sun breaks through in spring there's a spark of hope. I grasp onto it with both hands, holding onto myself. I can still be the person I wanted to be. Do things truly get better, or do I adjust? I'm not certain it matters. Each day I walk three miles with my dog at my side, trotting in lock-step, nose tilted to sniff the breeze. Sixty days in a row that I haven't stayed inside, even when it rained, even when I wanted to. Healing isn't linear, and by God it's hard. But there were weeks when I didn't leave my room, months when I didn't leave my house. Now when I laugh the sound isn't foreign. I have friends again, and not all of them have fur. I don't watch the world go by outside my window, but my dog still sits with me in my third vaccine line. No one's the same after these two years. There will be scars for decades to come, and not all of them make sense. But as I step back into the sunlight, I feel hope.
I had just a chance to make this work, and I failed. I couldn't stop the tears as they flowed down my cheeks. I couldn't believe she was gone and I was all alone. Sitting there on the floor of the hospital, my mind went back to the past three months when my sister was diagnosed with terminal cancer. I tried everything I could to raise money cause I believed that I could do something to help but no doctor was willing to help after all a deadly pandemic had just gone viral and a cure was yet to be discovered. All I could hope for in a hole of darkness was light at the end of the tunnel. Our family doctor, Mrs Astrich had already told me that the only thing I could do was make her happy and comfortable as she spent her last few months with me but I rebuked her words because my sister was my everything, the only person I had left to call family. I began working multiple jobs and even entered a contest to raise the money but there's wasn't so much I could get on such short notice. It was a cold Wednesday when I walked in to find her private room empty. I called out to the nurse who rushed in to inform me that the patients on that wing had caught a hold of the covid-19 virus. A deadly illness spread life wild fire throughout the globe, that shuts down your immune system rendering you defenseless to other minute illnesses. I couldn't believe my ears. My head began aching as I clutched my chest due to the unexplainable pain from my shattered heart. So many questions ran through my mind. How was she going to survive it? Or was this really the end of the tunnel? No light around, just gross darkness? The nurse led me to the isolation center where they had been moved to. I gazed at her from outside the confinement chamber. I couldn't even recognize her anymore. Her beautiful brown skin turning grey, her eyes sullen into the sockets,she looked like a ghost of her previous self. I wished I could go in and give her a hug and reassure her that it'll be ok like she did me all those years ago after mum died. Her eyes met mine and she tried to give a small smile to encourage me that she was fine. Every memory of times we spent together flooded through my head and I wish I had listened and moved her home to enjoy the last months of her life cause if I had she won't be here dying like this. After Dr Astrich explained that right now they couldn't try chemo or any therapy because of the covid-19 illness we just have to get ready to let her go. I nodded quietly as tears rolled down my cheeks. It seemed like the world had turned its back on me. Sitting on the floor with the flask of her favourite dish, seeing her wheeled to the mortuary I was sad beyond measure. Now I knew the rumours about the illness were true, like a thief in the dark it had taken the only thing I truly cared about.
Some say I feel to much. others say its not enough. when you are feeling down do you run away or turn to pills to ease the pain? People say I'm fine just suck it up and smile. but my smile is a glass mirror waiting to break. just hiding behind is all my pain.
The thought was racing through my head! Get it out get it to the paper before you say the wrong thing to the wrong person. I rushed to my room half expecting to scream but it was a long sigh of freedom. During CoVid 19 I've experienced isolation, fear and uncertainty. I am one of many people in this world who take prescription medication to ease anxiety and depression. I take these so I can feel and function like normal daily. However, when you add a pandemic and an insurmountable size of fear it's hard to get out of bed in the morning let alone even take your medication partly in fear you will run out before you can get some more. Since this pandemic has started, it has changed my views to accessibility and what also may be the new normal one day. Throughout these months I have developed things that helped me to cope and slowly overcome the feelings I was facing daily. Number one was writing my feelings! Anytime I felt overwhelmed or anxiety thinking about the absolute worst I would write them out and eventually It became therapeutic! It was helpful during those dark days. I accompanied writing with exercise and a change of scenery every so often, even if it was a walk around my backyard. Even though times are fickle and I feel so much doubt for my future, I know my story is not finished.
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Boredom is a bad word. It is distasteful and inappropriate, for all situations, and at all times. It is the killing of the mind. With the mind, nothing is without a chance of good pass-time. Boredom cries for entertainment. And yes, entertainment can be derived of every lull if given effort. But then, does everything have to be entertaining? Can there be no entertainment and no boredom, at the same time? Entertainment is usually a distraction from everyday actions. A source of interest beyond the usual interactions of life. What, on the other hand, is boredom? The picture that generally comes to mind for boredom is lulling eyelids on an expressionless face, and a mind that cries for distraction, but is too tired to find it. Boredom is commonly associated to being "stuck" with nothing to do. When there comes a moment with nothing to do, very often it is described as a "boring" moment. And usually, when someone says they are "bored," they say it with a disgusted, annoyed tone of voice, which seems to imply that someone needs to entertain them, fast. But why? Sure, they need a break from everyday exercises, but do they need a lively distraction from it? Entertainment is good and healthy, without argument. Nonetheless, life should not have to consist solely of everyday routine, and entertainment. There is one more thing in life, which is commonly forgotten, but which is arguably the biggest secret to sanity. This secret is nothing. Simply doing nothing. Oftentimes there is little chance of doing nothing in our busy lives, but this is not about busy times. This is about times in life when things are the least busy. Times in life when it seems like everything stops. Times when things are slow as molasses. There is every reason to just sit. It has been given a bad name, doing nothing. Obviously we all know that it is only bad to do nothing when times are busy, and when duties call, which is most of the time. But when those times have a cease-fire, for one reason or another, it is quite healthy just to sit and look around, or close your eyes, and listen, and let yourself be still. There is so much good to taking advantage of lulls in life, just to do nothing. So much goodness grows out of stillness. A flower makes very little effort, if at all, and yet it becomes something of great pleasure to all. Trees are the soul of deep-seated stillness, and yet they become tall and lush and their branches are a welcome shade on a hot day. This secret of doing nothing is why boredom is a bad word. Because in associating stillness with lackluster, boredom has given a good thing a bad name.
LION OF THE PEN When it rains, it pours!! These last few days epitomized this, with no less than four family members being rushed to hospital, two requiring urgent operations! The usually effervescent energy of the family chat group quickly shifted to a somberness that weighed heavily on the chest, often causing laboured breathing! The lighthearted posts were replaced with constant updates from the hospitals, messages of mutual support, and prayers ... lots of prayers... Then.. this afternoon, the dreaded news... I remembered that Saturday morning when he had called, requesting that I attend the Maritzburg unveiling of his book, "Mandela In Focus" at the Nizamia Hall. I remembered being in awe as he addressed the audience. I had attended primary school at Nizamia, as did my parents, uncles, aunts and many cousins. And so did he, as I surprisingly learnt from his speech! But never before had I encountered the history of the school as he told it! Even the school governing body later commented on the need to document it! After his speech, he made a bee line towards me, with the visible joy of one reconnecting with a long lost relative. He even stated that he now "recognized the family forehead"! He then quickly rearranged the row of chairs where we sat, into a circle and promptly summoned and introduced me to two other relatives, who had accompanied him to the unveiling. The last we had met was when I was a little girl, on holiday, at my uncle and aunt's home in Durban, where he was a frequent guest, up until my uncle's passing. Our paths never crossed again until January this year, when he had approached me with an invite, to be a guest on his talk show. It was only after providing a short bio for the show, did he make the connection and delightedly stated, "We're family!" Even after the unveiling event, the handful of us stood out on the school grounds as he continued exuberantly chatting, clearly explaining exactly how my grandfather was his uncle, and my mother his cousin. He pointed across the field to the house in which my grandfather once lived, next to the mosque. He said he had spent a lot of time there and could still clearly remember every detail of that house... every fruit tree in the garden... everyone who lived there... and everyone who visited... He spoke of how my grandfather "presided over the community" and how we needed to co-author a book about his life. His love for my late grandfather was visibly evident. By this time, Kevin Joseph, the photographer of "Mandela in Focus", and the school principal had joined in the conversation. He introduced me as his niece, to which Kevin quickly inquired: "Another one?" "No! This one REALLY IS my niece!" he emphatically proclaimed. I later discovered that he habitually adopted people as family. All the cars in the parking lot had by now long dispersed, except for ours... Over the coming months, I received regular phone calls... a caring uncle watching over me... a seasoned mentor... I thoroughly enjoyed listening to tales about his friendship with Muhammad Ali and Barbra Streisand, the lavish dinners, the times when her home was filled with people, at the height of fame... and other things... He always ended his calls with a bit of parting wisdom... He also spoke about the book he was writing, documenting his experiences as a journalist and activist. He mentioned the title he was considering ... "The Man They Couldn't Gag" ... and asked me to write a short poem for the foreward. I obliged with "Lion of the Pen" Lion of the Pen He feared not the hunter's bullets in his quest to be heard And a deafening ROAR it was From his written word AdielaAkoo At the time of writing this poem, I never once thought that barely six months later, I would be writing this piece! It's only been a few hours since that dreaded news, and it still feels so surreal. The reality of lifelessness in one normally so full of life, is quite jarring! From the influx of messages being posted on social media, the positive impact that uncle Farook had on the lives of so many people, is clearly apparent. Combined with this, was his wonderful talent of making each person feel uniquely special! He will, undoubtedly, be sorely missed... Part of my own treasure trove of memories is this autographed copy of his book, "The Goodwill Lounge", in which he wrote this message in bold letters: "TO ADIELA, WHO OWNS THE SKY" And that is exactly how he made you feel! Like nothing was impossible! You could take on the world, like he did! They say that when an elder dies, a library burns down. These words have never rang truer than in the case of my uncle, Farook Khan. May you rest in peace, Lion of the Pen! (10 September 1944 – 3 October 2019) by Adiela Akoo
The heart races, swiftly moving across the fiery landscape, and hastily dragging its reluctant owner along with it. Its goal, an escape from this place akin to hell, is almost within its grasp. My sloppily thrown together preparations don't seem to be enough though; a figure engulfed in shadows as black as a starless midnight blocks my way. I try to ask who this figure is, and from whence he came, but my lips lock themselves together. Then, as if he heard the thought as clearly as I said it in my mind, he steps forward to reveal himself. Even I knew that every story, including real life, needs an antagonist. Yet, like many others, I never expected to be my own. I mentally ask him why he blocks our way, and he gets even closer. The closer he gets, the more my heart seems to sink, cowering in immense fear. He begins convulsing, shifting into past experiences, present pains, and future worries. Luckily, my brain knows what my heart does not; that creature is not me. Hell, that creature isn't even real. Briefly, I compose myself, and stare at this tangible form of anxiety. Slowly, I begin to walk forward. The walk becomes a jog, the jog becomes a sprint, and within the blink of an eye I've moved forwards and the creature is gone. I continue trying to reach the light at the end of the tunnel, and the land itself around me seems agitated by this decision. The fires grow larger than my life itself, creating a graceful yet malicious dance around me. Sparks with a dark intensity fly past me wherever I trod, grazing my barren skin. A heavy gloom begins to slowly roll in. I try to run away from it, but disobeying my commands, my legs begin to crawl to a halt. I close my eyes and silently beg for any person, or any higher power to lift me up and carry me out of here, spending the last ounce of rapidly draining hope left in my body. I open my eyes, and look up, only to realize my last hope was spent in vain. I feel something grabbing me, preparing to drag me deep into the ominously approaching darkness. The steam from my last shed tear climbs my face as quickly as the tear rolled down. I think to myself, “There is no hope. I will never escape this.” Multiple creatures of billowing shadow whisper cruel words into my ear, reaffirming these thoughts. The figures all swirl around me, forming a pitch black tornado and releasing their intense hatred upon me. The largest, and darkest of the figures slowly comes out of the whirlwind and approaches me. A vindictive smile creeps across his face, and he slowly raises me a knife. A bit of reluctance builds up in me as I take the blade, but the faceless voices around me scream in joy, convincing me of the validity of this decision. I turn the knife around, and point at my throat. The cacophony of blackened screams around me grow so loud and restless that they're basically indistinguishable from typical white noise. I let out what I believe to be one last whimper: “goodbye world”. As I get ready to make death my escape from this hell, I can barely make out a seemingly human voice crying out against my decision. I hesitate, and slightly lower the blade. The whirlwind of shadowy figures around me begin to grow agitated. There it is again, and I could make it out clearly this time: a friendly, human voice. The screams around me that were originally of joy shift to sighs of disappointment, and wails of agony. My heart begins to rise. The tornado around me shrieks in pain and terror as an entrance is forced into the tornado. A figure of what appears to be pure light offers me their hand. I grasp them, hope welling up in me once more. That hope was all it took. The world flashes a white purer than the stars, and I feel grass beneath my feet. I look around me, and instead of my hellscape see a meadow, with the person shining brighter than both moon and sun combined smiling at me from within. That was the moment I realized something I now think everyone needs to know. The light at the end of the tunnel won't always be an object or come from within; the key to your cage is never inside with you. The light can be someone around you, an animal, a river, a song, whatever you want it to be. Light has no defined shape. Surround yourself with as many lights as possible, not figures of malevolent shadow.
You have a story I want to tell. It could be 7 or it could be 20 stories. I am not putting any limitations on it. Take a chance with me as a skilled and educated professional writer and interviewer and as someone who has been there in one way or another. I blog about my mental illness of PTSD--its experience and treatments--and sometime ago about my Recurrent, Severe, Major Depression (yes, that is something you can look up in the psychologist's reference DSM-5 along with PTSD that doesn't quite fill my shoes because Complex PTSD, which I have, I don't think is yet included in the DSM, though it is established in scientific communities). Just the night before last, I had the most weighty of dreams in which I was back on that solitary, isolated, parent-regimed, and, most importantly, depressing, hopeless, infinite home experience. It seemed such a long dream and full of that old emotion memory that I awoke with the feeling heavy on me, lasting all day. I'm not sure I'm quite over it today, though I have been amazingly productive compared to yesterday when I couldn't care enough about anything to really put my heart into it. I'm not telling a lot of you anything unusual, because in one form or another you have been there--those old neural pathways I am working to overcome with EMDR therapy in counseling and with ketamine treatments and other psych meds with my psychiatrist, popping up here and there when you don't expect it. In On PTSD: A Personal Experience I took you down the rabbit hole of scary emotional first person incident and thought life. In others, such as Experiencing Complex PTSD I talk more distantly of symptoms and such. I could tell you more and I certainly would love to hear what you want to know about my life with these things. However, I want your voices to ring out from my pages. You have a voice. You own no shame. I want you to Say Something like I did in my 9-part series I am working on turning into a full length memoir. I want to hear and report your stories using the writing gift and education and platforms that God has given me. The whole point of my speaking up, whatever the form, about my experiences is so that you may feel free to speak up about yours. I propose this. If you are interested, named or unnamed, in sharing your story, via phone, email, or however you are most comfortable, so that I may use my skills to write a story with your prior-approval or, even, may decide not to share publicly at all, I want to hear from you. Please comment or email me at firstname.lastname@example.org with serious inquiries, by which I mean I am not interested in starting any romantic relationships, for instance. Try me out. You can trust me as a professional writer with interview experience that even stood the test of a journalist grad student and professional without change that I will do you justice. I want honesty, but I do not require any details you don't want to share. I share no details, including your name, if you want, that you don't want me to share. I can listen to a a lot and only share a little. You decide what questions of mine you answer. You decide. You get to Say Something if you want. You have a story to tell, and I want to tell it. More than that, many, many others need or want to hear it. You can believe me for all my years reading your posts, talking with you in groups or as individuals, and being in therapy. Serious, if hesitant, inquiries via Comments or my email email@example.com please. Caveat: I AM NOT A THERAPIST, SO I CANNOT COUNSEL YOU OR BE A REPLACEMENT FOR COUNSELING. Please seek professional help if you know what I am talking about but haven't talked to a psychiatric professional before. https://thehopechronicles.wordpress.com/2020/01/28/7-mental-illness-stories-wanted-and-admired/
The world was mad at me, or so I had thought. My selfish mindset taught me the world had been waiting for generations upon generations to release its rage upon me. I became blind to the idea that I, of all people, was filled with ego. Through the moments I noticed this within me I felt as if I was allowed to feel this way, more than anyone. The universe knew every particle of my being, the good and the bad, and knew how to play my strings perfectly to slowly kill my thoughts. I was a robot. I self-destructed more than anyone and denied that it was me doing it. I procrastinated until I couldn't anymore, I grabbed things no thirteen-year-old should grab. Imagine what you will. I wanted boys to seek me, to pursue me. I still do. I crave the idea of having the slightest bit of attention and I break when someone does not laugh at my joke. I would break when things did not go my way and when there was no reason to break at all. The world was no longer the world I was in but much more of a living hell. I was burnt to crisp and would drive myself insane. I was broken and torn to pieces and I blamed no one but the universe. It hated me, it had to. My father would say things without thinking and it drove me to insanity. My mother was at work too much. I questioned my life too often. I could not imagine a future. I liked falling asleep but I could never do it right. Nightmares were less scary than the world I was living in. Happiness made me feel inferior, normal. I accepted the universe's destiny for me. I had it the worst. One day, another day, and another had passed. The sun began to shine and the moon would glow. My dog would lick my face and this time I did not push him away. My brother said hi to me first when he came home. I went to therapy. I described my life “as an elevator, rather than hills. When I get hurt I start at a floor and get shot down”. She understood me. I would go to the mall and play truth or dare. I spent cold autumn nights going to football games and Starbucks and to the new taco place in town. I found new music and I went to concerts. I began to give more hugs, take more pictures. I licked the snow, I made hot chocolate, and burnt my tongue way too often. I wore Christmas pajamas. I wore dresses to school. I wore whatever I wanted to wear. I held babies and played with kids. I smiled at strangers; Sometimes I would beat my anxiety and talk to them. Once I met a girl in the clearance section in Old Navy, she wants to go to space one day. Traveling made me smile, made me feel small. I was no longer the center of the universe, but an ant in the distance. Rollercoasters were never scary, but thrilling. I enjoyed the pit you get in your stomach once you fall from the peak of the ride, almost relieved. I noticed the feeling you get when you shave your legs and go under the sheets. The feeling of wearing clothes that were fresh out of the drier was a whole new world. I went to lakes and ran barefoot in the grass, the blades were soft and muddy feet were the least of my worries. I kept pennies I found on the ground. I woke up on time on weekdays and slept in late on Saturdays. I went to church often. I would notice the feeling of not being able to breathe from laughing too hard. The glisten in your eyes when you are so happy you could cry. I made new friends and rekindled hope with the old ones. I started putting my pieces together. I picked up my own broom. For months this period went on and I felt as if I had it the worst at one point; the ignorance I painted over my eyes blinded me. Months became the last few seconds of my innocence. I heard the door shut and my eyes opened to the ear-piercing sound of my brother wailing. I questioned him, “What happened?”, the question echoes in my mind to this day. Life as I had known it had ended, slowly but all at once. The climax of the fight scene, right when the last thing you would have expected was for the protagonist to get knocked down yet again. But that's when I realized- I wasn't the protagonist- or the antagonist. I was someone different in everyone's stories. But all stories come to an end. Esther's story ended, but she was still a light in mine. She was the sun that began to shine and the moons glow and the flickering of the morning stars. I suddenly realized that at thirteen, I thought it could not have been worse. I became a much quieter version of myself and fell back into pitiful habits I thought I had once lost. I hated myself for it. I was no longer scared of the future but stuck in the present. The sun no longer woke me up in the mornings, the moon was small looking and frail. The night sky seemed empty and the world was massive. Life was no longer living, but struggling to be alive. Feelings were no longer felt, but hoped for. Hope was fragile and small but still flickered in dark rooms. I no longer licked the snow, or wore Christmas pajamas. But: One day, another day, and another had passed. *in loving honor of Esther Morgan
Eight days after my twentieth birthday, I'm rushed to the Emergency Room. Again. Twelve times in the last year and a half. The pain is so bad I can't pick myself up from the tiled bathroom floor, sweating, nauseous and sick to my stomach. “We're sorry, Ms. Ludemann, but we can't give you any painkillers -- have you tried ibuprofen?” I see a news segment about a man who took so much Advil that he burned a hole in his liver, and wonder if burning a hole in mine would convince people that I'm sick. I cycle between passing out and dissociating on my partner's worn couch. The EMTs who arrive in the ambulance joke that I can't be that bad. The (white, old, male) doctor asks me if I have any “mental health issues,” then tells me I am a woman and I simply have anxiety, manifesting itself in physical forms. IVs, EEGs, EKGs, MRIs, CAT scans. I am drowning in alphabet soup, but no one has an explanation for the ache in my bones, the snapping sounds my hips make, the popping of my subluxed shoulders slipping back into place. In November, I drive to a nearby medical supply store. The last few hundred dollars in my bank account are forked over for the only semblance of freedom I have had in weeks. The seat is too wide for my hips. The plastic armrests leave black and blue bruises on my arms for a month. My friends pick up a roll of cat printed duct tape at CVS, and we spend the evening carefully aligning strips on the side rails. It becomes my “pussywagon,” a humorous extension of myself in an attempt to conceal the bruises all over, the muscle spasms that rack my body, the tears shed as I struggle to literally crawl up the stairs to my inaccessible, second-floor dorm room. I soon learn that my college is built on hills, and try to ignore the pain in my shoulders as I push myself across campus and back. In December, I set up a GoFundMe, staring blankly at my computer screen at the hundreds of other fundraising campaigns set up by people like me who need money to cover the cost of surviving, which is its own pre-existing condition. We raise $400, and I have a break down in bed thinking about ways to make up the extra two thousand we need. My grandmother, whose own joint issues lead to a botched knee surgery and a large legal settlement, loans me the money, if only because we call each other and commiserate over the weather and the pain in our elderly bones. The chair I choose is bubblegum pink, bright enough that I can be spotted crossing the dark streets on campus at night. I name her Veronica and cover the sides in stickers and figure out hacks for attaching my backpack to her pushbar. They move me to a new dorm, where I don't have to humiliate myself crawling to my room. I spend January through April zooming across campus, waiting impatiently for the crowded elevator in academic buildings, calling facility services multiple times imploring them to shovel the wheelchair ramp and make pathways bigger than a foot wide. My partner and I trudge through the mud and muck of Pride in May, dodging puddles and shivering under sweaty plastic ponchos. When we roll over to compliment a group of fellow queer wheelchair users on their sign, which calls out the inaccessibility of having the parade terminate at the fairgrounds, they smile and ask, “Do you have Ehlers-Danlos too?” For the next hour, I learn that other people have the same pain I do, that the “party trick” I've had for years is really my elbow dislocating, that the dizzy spells and night sweats I get have a name, that my symptoms are real. I bury my head in my laptop for a weekend straight, digging up any and all information I can find. My parents tell me that researching too much is making me a hypochondriac. Two days before my senior year, my mother, Veronica and I fold ourselves into my small car and make the drive from our house to the only doctor within a fifty mile radius knowledgeable about Ehlers-Danlos syndrome. Two white-coat wearing, tight-lipped doctors poke and prod at my body for an hour, making me bend this way and that way, asking my mother questions about my birth, looking at my teeth, taking samples of my blood. They tell me that I don't score high enough on the Beighton scale to have Ehlers-Danlos, but I might have Hypermobility Spectrum Disorder, the big umbrella under which EDS falls. I nod and smile blankly, knowing that the entire ride home I will have to listen to my mother prattle on about how she was right, that I was convincing myself I was sicker than I am. Two days before the start of my senior year, I sit in my living room, surrounded by suitcases and boxes. My sister fills her backpack with binders and books; I fill mine with meds, my foldable cane, KT tape to hold my joints in place, a heating pad, bottles of melatonin to force my body to sleep on nights when the pain keeps me awake. On move in-day, I sit in my dorm room and take a deep breath, processing my new suroundings. Then the typing begins.
I've never been an active participant in my own life. I've been inconspicuous, invisible, a contentious recorder of other people's experiences and perceptions of me. Until I noticed someone watching me: a voyeur studying a voyeur. We mirrored each other perfectly, my Pygmalion statuette. Before her, I used to think I was missing the foundation of myself: I couldn't possibly build upon a baseless design. I tried to assemble my personality, my identity, out of arbitrary likes and dislikes, curating my persona to avoid a certain social isolation, but still I felt so out of place. In her presence, I'd realized how homesick I was for myself this entire time: I'd been missing for years. Together, we existed in between the plane of reality and unconsciousness: the lingering, liminal space between the figurative and the abstract. We were abundant within the ample nothingness of the world. Conversations, subjects, trains of thought, that were usually difficult to navigate with others, would be completely coherent to her without hesitation: she understood the ugly, absurd, intangible parts of me, reciprocated my energy…and I felt a great, primordial and animalistic nakedness. Where we converged, we extended vertically, dimensionally, inheriting and absorbing all the abandoned love from the annals of the universe. A great oneiric planar ascension, time had become subjective, giving birth to us backwards. Of course, passion knows nothing of it's consequences. Now, I'm right back where I began before I met her: alone, detached, and yearning to be part of something real, or adjacent to real. You can't be the same, live the same, and act the same, after being known so profoundly. Knowing the majority of people will rarely allow you to be so unapologetically raw, ugly, beautiful, cosmic, infernal, celestial, all at the same time, who will accept your volatility as executive function…it makes one bitter to the point of either complete isolation or painful social acquiescence. I'm bored to death of everyone, and of myself. Her violent indifference took its toll: at her most vulnerable, she'd abandon me, dispose of me, and recoil into her own trauma. I'd collapse all the same from the weight of her cruel inertia. Life after a vicious cycle of emotional abuse is perplexing. I was trapped in these patterns of prophecy: now I'm surrounded by people who fill my heart with temporary comfort; light conversation, uncontroversial and exoteric opinions and interests; people float with me above the surface and keep me warm. Their company abates the biting dullness more or less, even if my body is physically numb. But when I'm alone, I feel the futility of it all. My mind becomes an eternal rolling fog, cut by her silver-tongue deliberately leaking angular memories into my moon-sick sulk. Her darkness is territorial: I am not sure how much of her emptiness I can accommodate. As if I'd have a choice. The pit inside me seems like a bottomless abyss, but why is it so suffocating? And why do I secretly enjoy the pain of this asphyxiation? Why does no one ever admit to the euphoria experienced when one is hurt so deeply? The saccharine honey exhaled from a romantic chasm: the validation granted in knowing you are significant enough for someone to want to destroy; because no one bothers to annihilate someone who is already broken. Where is the fun in that? The surge of energy you experience after draining a star of its magic…not enough stars in the world to revive her. Will I admit that feeling sorrow is my way of binding myself to a reality I can make sense of? Do I settle into bad feelings because I am comforted by the fact that, after all this, I am still able to feel anything at all? I am terrified that part of me wants to suffer, just to affirm the materiality of my existence by its resistance of extreme emotional depredation. I avoid analyzing my attachments to dysfunction. I always knew I had masochistic tendencies, but I only ever correlated that to sexual amusement. Is this how I must operate, after her? Must I feel such annoyance around people who feel so safe, so unbelievably vanilla? Those who excite me, but do not dare to rebuke me? Who do not speak to my profligate soul as she did? Must I remain silent around those who do not have the courage to go beyond conventional thought and emotion? Or have I become so affixed to anguish, to concentric cycles of sadness at my core, that I have lost myself in the romance and validation of her own self-destruction?
It was ten o'clock which was bedtime. It had always been our bedtime. The time where lights went off, phones away, and our minds were left to drift astray. I share a room with my younger sister, who I would chat with until her words became slurred, and her quiet snores filled the silent air. The clock hit 10:20pm. While she slept soundly, I stared at my ceiling. My mind is not capable of being calm, my eyes not capable of closing, and my body not capable of sleep. Sometimes, I feel exhausted. Other nights, I don't feel phased at all. Tonight was an even mix of the two. I felt slightly tired but could not sleep because I know the monster under my bed and it's name is Insomnia. The clock hits 3am. It's different each night. Sometimes, time flies. Others, not so much. The hours felt like decades this particular night. I spent the endless hours pondering my mistakes because not only was Insomnia under my bed, but anxiety was peeking out of my closet. I lay there powerless, not able to drift off into the world of dreams that my sister would tell me about in the morning. Instead of being stuck in a nightmare, running from an imaginary creature, I am stuck in my horrifying reality, running from my mental illness. Instead of wondering “is this a dream”, I'm wondering “when will this nightmare called life end?”. I'm going over every worse case scenario of how tomorrow can go. Four AM. I'm still awake. Who knew my ceiling had so many dots? 6,000 in counting. That's only in my peripheral vision. 5am. I have to be awake in an hour for school. 5:30am. I still haven't gotten an inch of sleep and the light of the sky is peeking through my blinds, reminding me that even when I feel empty, or stuck, the world around me still goes on. 6 AM. My alarm is beeping, my sister now stirring in her sleep. I hear her bed creek, signaling that she's getting up, so I pretend to be asleep. No one knows about my Insomnia. If I were to tell them, what could they do? Take me to therapy, put me on pills? I know that scenario all too well because when I told my parents about my anxiety, those were the exact steps they took. After therapy failed to work, they claimed I was faking, and never picked up another prescription again. I hated that, and I refuse to let that happen again. My sister wakes me up and I pretend as if I hadn't been up all night. I later went to school. I worked hard, took tests, and acted as if I'd gotten sleep. When someone asks how I am, I'll say “I'm fine”, but I really do wish they could read my mind.