My Year of Rips and Disorientation

Today I write because I am tired. I am tired from the memories of months I never wanted, lodged between the numbers 33 and 34. A year I braved, a year that submerged me in pain and isolation, a year filled with grief, a year of different kinds of burial, a year of silent goodbyes. A year of the crash of everything I’d worked against for the past years of my life, a year of it all catching up with me. A year not of rest and relaxation but of rips and disorientation.

Today, just a few days after turning 34 and shedding 33 I wake up in tears and in pain. The only times I’ve woken up without a cry are the mornings I share with my friends, when they’re in the next room. Days when I make sure I’m awake at least an hour before them so I don’t cry to them, or ask for complete silence, or forget their names or my name or succumb to feeling so overwhelmed I can’t even focus on my tea. When they’re not in the next room I am alone, I feel alone, trapped in a body others keep casting away. Trapped in the pain of feeling like the world was so repulsed by my being, it punished it, and left it. Trapped in the repetitive rules to follow so I don’t feel worse: supplements and medication, codes, allergies, pains, non-negotiables. Perfect hygiene. Not allowed to not be perfect. Trying to stay perfect, alone. Alone again and in physical pain so blinding. 

Today I think perhaps this started over 15 years ago, when I learned not to speak of my bothersome illness. Where I put my acting skills to test and knew exactly how to look and be so no one would know how much of me hurt. Labs and doctors in France and England laughed at me. “Nothing’s wrong,” they said, blaming my timid nature and the shape of my clothes. Clothes as my only distraction and my personal embellishment. Lyme Disease, something many would never have heard of had it not been for me. A guinea pig in the lives of many, the face they put on silent illness. Silently I fought, I silenced the effect of stomach ache and shattering bones. In silence I followed protocols to avoid pain. The damage was done. Today I can’t eat much and my hip is sideways. Everything still hurts. Except when I paint and read and write and escape. Comfortable and happy only when I run away.

Tomorrow, in a few days and some weeks later too I’ll wake up with my head spinning. My fingers frozen and my jaw locked. I’ll find hair on my pillow and I’ll feel disgust. I’ll be so hungry I can’t breathe and the second I eat I’ll feel nausea. The night before I’ll look forward to drinking a cup of tea only to find myself too fatigued to prepare it. I’ll shiver and sweat, try and press the bags under my eyes back into themselves. I’ll ignore any suggestions for plans for weeks and wear the nightie I’ve been wearing until its smell becomes unbearable. If I make it out, it’s will wear a false smile. I’ll feel so ugly I’ll braid fake hair into mine, an illusion causing me even more suffering. I’ll be told I look great with my hair long like this. I’ll remember that’s not me, that hair is just pretend, because the real me has none of the hair in this braid and if she went out without any fake-ness or pretend or masking or pretending or make belief or pretending no one would see her. Because you can’t see an ill person. You can’t see everything they carry either. You can’t see they can’t hear you as they manage their symptoms. You can’t see they didn’t understand a word of what you said because they had to focus on making sure they weren’t a reason for your discomfort.

Today I am scared of my stalker. A man who would call and terrorise me, who last year found my address and sent me a cook-book. And one the year before that, in a different house. A person who made me feel so ashamed with poems of my pixie-ness, engagement rings and a novel describing graphic scenes of us. A man I never met and who instead made me realise I should stay hidden.  Today I see how much I have been changed by Felgate too. The gates of hell who told me every day how much he hated me, and himself for loving me. How much I bothered him. How much everything I did was annoying and stupid. How much more beautiful other women were. How much he wanted to sleep with other people, to check how much he loved me. He would tell me how little desire he had for me after sleeping with me. Call me needy and insecure. Take my money and call me abusive when I asked for it back. Call me names if I needed reassurance. Shout at me in public. Adore me in front of my friends. Today I am different: I hurt because I am unable to be perfect. I hurt because all the ways I made myself smaller when I was at a time in my life when everything should have felt bigger. Today I cry about the phone call, the one that ended it after two years of scorching my mind, immune system, my self. Because he didn’t believe I was worth anything except the lingering after effects of his never-ending tidal wave and the disgustingness of his seductive promise. He had chipped away at me until there was nothing left but the cracks swirling over everything he didn’t like. He had pressed his thumb on the things he wanted to destroy, slowly the pressure created the rift he was craving. The endless critiques causing fissures in the person I used to be, craquelures creating a new version of the woman I’d been painting my whole life. A new one with many fears and lists of new shames, all tucked stubbornly into the tiny little boxes he created. One for my giddiness, one for my sexuality, many for how I move and sound and present. All of it against how I am.

Today I think of the old man. Someone who saw only good things in me. Who believed in me more than anyone ever has. Someone who never should have told me certain things. A man old enough to be my grandfather. A man I looked forward to seeing every day. A man I cast away and screamed at because of the convoluted nature of the situation. A man I demonised so I wouldn’t be a villain and break a family and a life. A man who made me feel scared too. A man who bothered me and I ignored and hated because he crossed a line and I didn’t want to understand what it meant about me.

Today I miss my friend. My special friendship. One like magic. Two left hands hobbling into a room, our differences combustible. Today I remember the combustion never mattered to me. She was there, my beautiful friend, and how we differed never occurred to me. I looked at her with admiration only. Today I know my need for my own perfection, a protective tool I used for survival, the results of the stalker the Felgate the old man the screams in my family made her feel she had to be perfect too. Made her think I didn’t believe her to be an astounding human being, at all angles. Today I think of the email, a one-day-to-the-next unbelievable shock, a goodbye I never expected. The end of a friendship I cared about so much. The beginning of the cruelest sadness. The end of having a beautiful friend, because I made the mistake of feeling I had to be perfect. Today none of her friends speak to me and I know her truth means she hates me. She can’t even look at me, speak to me, wish me well. Today, over half a year on, I am grieving  the beauty of a constant exchange I thought I was safe in. Today and most days this year I woke up crying, because I miss my friend and I don’t understand.

Last night I woke myself up to look at the moon. To look for the old man who’s back of the head looked like the moon. The old man who died last summer. Today I miss him. I want to know if someone in the world thinks the world of me. Today I am so angry we didn’t meet in a previous life. Today I grieve never telling him I felt a similar way but I would have always been too scared. I miss my cheerleader, my unconditional admirer. A connection so special and unexplainable. Today I miss waking up knowing someone will think I’m fabulous. I miss this old man, the one I stored in the moon. Today I want more than just signs from the universe telling me he’s watching. Today I wish I had been perfect enough to find the right way to exist next to this person. Today I regret being angry at him, insulting him, pushing him away and not speaking to him. Today I feel sad about his cancer. I regret feeling strange around his family and never showing up for him while he was ill. I regret being the girl who couldn’t get that right either.

Today I think of all the doctors I lay infront of, begging for help. All the invasive questions and potential diagnosis. Lupus, cancer, Lupus again, ME, maybe cancer later/one day, hormonal disregulation, alopecia, rosacea, ME. Yesterday, again, they said Lupus, a few months after confirming ME. Years of my life spent describing what doctors can’t see, repeatedly crying, shaking and full of shame. Blood tests by the dozen, horrible hospitals, syringes, sounds and screaming. Alone.

Today I think of autism, my diagnosis meant to explain the part of myself the world found stranger. A diagnosis misconstrued by anyone who doesn’t want to understand otherness. Today I am confused and I’m very fed-up. Another friend. A light friendship. One with very little in common but a lot of respect, I thought? One where nothing felt intense, just simple and sweet. Someone I cared about and was a comfort against the complicated diabolicals in my life. My friend I got on two long trains for, pressured by the demands for her birthday 4 years in a row. A journey during which I had several panic attacks, threw up, lost my walking stick but showed my baldness in public for the first time. I got her a tiny gift with pennies I didn’t have. I was happy to be there, for her, and I smiled the whole night through. But I received a text, the words “weird” and “uncomfortable” glaring at me. Another panic attack, on the floor so I wouldn’t fall any lower. And then nothing, no explanations as to why I had to be discarded. Nothing, not even a goodbye. À la poubelle. An unnecessary push lower than I already was. With you I find myself so angry. Why did you add to it, when you knew of my whole year? When I let pass how rude you were to my parents? how you and your friends attacked our friend who wasn’t there twice in a row for your birthday, just because she was working and the next day you pretended it was nothing? how you never bother to understand what doesn’t directly concern or affect you? how you never lifted a finger to help? how you barged in my room when I was unwell because you had a spider bite? I didn’t care about all these ways, because you deserved to be you. Why do I not deserve to be me, a version of a person you don't understand? With you I am so angry, because you hurt me so, and you came out of it unscathed, unscorched and never feigned to show me I deserved the respect of a conversation. Your capabilities of explaining being limited to… muting someone… on Instagram. With you I am so furious. Enfuriated by the petty distress you caused me and the fact I was so panicked I didn’t recognise my thoughts and called the NHS help line to make them stop. You made me feel like I was worth so much less than you and your other friends and the myriad altercations you constantly cause behind the backs of people with your ongoing need for dramatics and gossip.

Today I miss painting. Today I know I stopped because I want to leave no clues of me. Nothing of me that people can judge and use as a barometer to add to their faltering opinions of me.

Today I watch my friends buy houses and get married and make plans for their future. Put money aside. Go on holiday with people they love. Get invited to holidays with people they love. Meet people, hang out with my friends, make plans with my friends when I can’t be there. Plan events that people buy tickets for, because people remember who they are. I watch them pick baby names or pet names. I watch them be welcomed into new families. I don’t tell them I have none of that. Not someone I say good night to. Not something I look forward to doing tomorrow. Not a plan in sight. Nothing in my bank account. No hope I’ll ever get better and no thoughts of ever having anyone who cares enough to see me feel good for one minute amongst the bad for hours and hours. Today I have sobbed all year in a way I never sobbed before but I told no one.

Today I am angry at illness and all that led me here. All the ways people don’t see it or understand it. Furious and in so much pain. Too tired to digest, too bald to go outside. My skeleton too fragile to sit down, my shoulders too weak to lay on my side. Today I can’t see. Today I can’t remember yesterday or a day when I wasn’t in a hospital bed. Today I counted the amount of blood tests and MRIs I went through in the space of a year. Today I am alone. Fighting for Universal Credit and PIP just to stay alive. Today I remember how little people have visited me or called me, probably because I’ve been hiding how much I’ve been hurting. Today I remember the end of my career, the inability to imagine working again. Today I remember I am 34. Today I write this and I am alone . Today I cried, and the only person who was there to hug me was Dr. Li.